Bada Bing…How Tony Soprano Saved Our Sanity…almost

What do you do when you receive devastating news….life altering news?

We decided to binge watch 6 seasons of the Sopranos.

Thursday July 25, 2013

Me

I was not expecting good news. Symptoms had increased and worsened over the last three weeks.

A week ago he suddenly needed help with toileting at night–every 2-hours. During the day he was able to toilet himself and even bathe, although I asked that he not get into the shower unless I was home. He stubbornly ignored the request.

A week ago I was able to drop him off at Starbucks where he could order coffee and breakfast sandwich and read the newspaper while I went on my 4-mile walk four mornings a week. I was able to leave him at home while I worked at the hospital.

This morning he came into the bedroom filled with distress because he had soiled his trousers, the kitchen chair upon which he was sitting and the floor. I reassured him that all would be ok, but that it would be best if he wore protective underwear from now on. He did not resist.

Him

He was hoping to hear how to fix the problem. We were so absorbed in that conversation that upon exiting the elevator we did not see his primary care doctor until he greeted us. I looked deep into the doctors solemn eyes as he said, “I see you are on your way to see Dr. W. this morning.” Clue one.

Have you ever experienced time suspended? It’s the subtle things one notices in suspended time.  The specialist entered the room, and while he was greeting us, immediately moved the kleenex box to the table beside me before he sat down. It was my second clue.

When the specialist doctor entered the exam room and placed a box of Kleenex next to where I was sitting, I knew the news was not going to be good. He showed us the scans, gave us the other test results and then told us the diagnosis, we asked only a few questions. He said I was going to need some help and asked if his office had given me the resource sheet. I ask if my husband can go on a plane alone to Santa Cruz and if I can leave him at home alone. The doctor replies, “He cannot go on a plane at all. If there was an emergency at home when he is alone, could he save himself?” I answer “no” and realise I can no longer leave my husband unattended. My husband sat quietly through this exchange and said nothing.

The doctor sends a prescription order to the pharmacy mentioning the unpleasant side effects. He began to show me a form, but I waved it away saying, “I don’t think I’ll need that.” Then we left. (I need to call for a copy of that form.)

When we reached the couch in the elevator foyer, my husband sat down and said, “What did we learn?” I replied, “It wasn’t good news.” “How do we fix it?” he asked….”Let’s go home now.” I said, and we held hands as we made our way into the elevator.

It took about three hours for the information to sink in for me.  We called family to let them know the diagnosis. I emailed close friends with the information, one of whom lost her husband last year. She immediately responded with, “Let’s talk ASAP.”

That night we watched the 4th, 5th and 6th episodes of the first year of the Sopranos. Our son was in Hood River attending wedding events of one of his best friends.

Friday July 26, 2013

She brought resources and lunch. When she left I felt calm for the first time in 27 hours.

He is sundowning. We watched the 7th, 8th and 9th episodes of the Sopranos. I was up every 2 hours throughout the night, tending him.

Saturday July 27, 2013

It took about 48 hours for him. He collapsed. We cried, and that’s when he wanted me to call Dr. Kevorkian. I pointed out the fact that it would be a little difficult since Kevorkian was dead and we laughed, then we cried some more.

“Help me,” he cried. I called his brother and they talked. I left the room and called a local friend and asked if she could come over to stay with him while I ran some errands.

All day his symptoms worsened. He was becoming less and less mobile and harder to handle.

Later I received the text that my brother-in-law would arrive on Monday morning. We watched the 10th, 11th, 12th and 13th episodes of the Sopranos.

Sunday July 28, 2013

Friends are calling. Our granddaughters visited, giving us an hour of pure joy listening to stories from the library books.

He insisted I Google Death with Dignity. I found the web site. When he awakens from his nap, we’ll watch the documentary “How to Die in Oregon”.

How to Die in Oregon

We watched the 1st, 2nd, 3rd, 4th and 5th episodes of the second season of the Sopranos.

Monday July 29, 2013

The phone rang early. It was our friend from Colorado offering to come help. Other friends are calling to ask to stop by to visit. He always accepts the calls with enthusiasm. I am mesmerized at his handling this situation with amazing grace and courage.

I picked his brother up from the airport. “How bad is it?” he asked. “He’s significantly deteriorated in the last 3 days. We are focusing on all the fun we’ve shared”, I said.  He responds, “I brought photo albums of when we were kids. We’ll have some great stories to tell.” We ride in silence for some miles.

We stop by Ace Hardware to pick up a shower hose and then swing by the store to pick up a few groceries.

As we turn into the driveway of the house the cell phone rings. It is my husband’s doctor calling to tell me he has asked for Occupational Therapy to come by the house in the next couple of days to make a needs assessment. I ask for a POLST (Physicians Order for Life Sustaining Treatment). He says it will be put into the afternoon mail.

We enter the house with a smile. It is a good day. My husband is very glad to see his brother.

His brother convinces my husband that he will not be going to Santa Cruz in September to meet up with his High School basketball teammates. My husband calls and leaves a message letting Terry know he is not going to make it, but encourages gathering without him.

We watch the 6th, 7th, 8th and 9th episodes of the 2nd season of the Sopranos.

My brother-in-law sleeps in the room with my husband so he can tend his needs throughout the night and give me some rest. I said “good night” to my husband and retired to the guest room. I was nearly cross-eyed with fatigue that I had not allowed to over-take me until that moment when I slipped into bed and realised I was going to be able to sleep through the night uninterrupted.

In the middle of the night I awake not recognizing the room in which I am sleeping, but then realise my husband is in the good hands of his brother and fall back into a deep and exhausted sleep.

Tuesday July 30, 2013

I meet a friend for coffee this morning. Terry calls. My husband tells him he is unable to meet the crew in Santa Cruz.

My son and I go on a whirlwind shopping jaunt to Costco. The granddaughters come by for about an hour. They are wearing their swim suits and ready for their Great Uncle and Uncle to spray them while running through the sprinkler.

I serve lemon and coconut cookies, then it is time for the little girls to leave because grandpa is tired and ready for his nap.

He needs help getting from the deck to the bedroom….it takes nearly 30 minutes to travel 50 feet with the help of 3 men. Once he is safely tucked into bed, we decide that is the last time he will sit on the deck. (Of course, it was NOT the last time he sat on the deck) We all take a nap.

My husband has further deteriorated in the last 24 hours. My brother-in-law wants to stay until Providence Home Services are on board. He knows I can no longer care for my husband alone, or even with the help of my son for too much longer because while I was away, my husband fell backwards on top of his brother. Chris had a difficult time moving himself out from under my husband…Chris is the size of my husband. Upon my arrival home, Chris follows me into the kitchen and says, “You’ve got to get some help.”

We complete the second season and watch the 1st, 2nd and 3rd episodes of the 3rd season of the Sopranos.

Wednesday July 31, 2013

I’m walking at 7:30 this morning then bringing hazelnut lattes and breakfast sandwiches home to the guys. I spoke with Gale at the gym to cancel the Parkinson’s balance class my husband has been attending.

The ice maker on the new refrigerator is on the blink, so the repair man is coming today. I’m calling my husband’s doctor if I have not heard from Occupational Therapy today. I have to go into my office for a few hours.  My appetite is minimal, but there are 3 men here to feed. I’ve got a plan for tonight’s dinner.

Thursday August 1, 2013

The ice maker switch just needed to be reset, so there’s a bit of good news.

I teach until 10 PM tonight. My brother-in-law and son are taking wonderful care of my husband.

Friday August 2, 2013

Today I taped the POLST to the refrigerator. It was hard.

My son and I take the little girls to tea

Everyone’s Tea manners are impeccable; Tea conversation convivial; Tea foods relished–it was a good day.

Saturday August 3, 2013

My brother-in-law goes home. I am a little anxious, but the day goes well until my husband collapses. My son and I sit with him. I wipe his face with a cold cloth and talk to him quietly. He finally gains consciousness and is able to crawl to the bed. The rest of the day he is able to walk on his own, even out to the deck.

Sunday August 4, 2013

My husband wakes up announcing he plans to go to Santa Cruz to meet his H.S. basketball team mates and that he is going to hire a personal Valet. (Clearly the Earl of Downton Abbey is influencing him!)

He walks to the kitchen and with a little guidance, is able to find and prepare his own cereal, eat at the breakfast table and have coffee on the deck.

I wonder if the seemingly rapid decline over the past week was due to a psychological reaction to the diagnosis, and now he seems to have decided there will be no imminent demise, so he’s setting goals. This is a good thing. It crosses my mind that Home Services are not needed with any immediacy.

August 5, 6, 7, 8, 9, 10, 11

I don’t remember, but my husband’s brother has called every morning.

Monday August 12, 2013

Our oldest son arrives to rescue me from exhaustion.

Tuesday August 13, 2013

I tell the boys the neurologist wants to schedule an appointment for a second opinion. I ask , “If I am able to get an appointment while you are both in town, would you want to join us?” “Absolutely!” they cry in unison.

I receive a phone call on my way into work from Neurology in the OHSU waterfront offices. There’s been a cancellation and would we want to come in tomorrow at 8:00 am. I call our sons to let them know about the appointment.

When I return home after work, we sit down and create a list of questions for tomorrow’s appointment. My husband’s burning question is to know if he’s been misdiagnosed and if the virus he contracted in 2006 during a business trip conference in Cancun, Mexico has anything to do with this disease.

Wednesday August 14, 2013

Dr. Kaye patiently answers all our questions. During the visit my husband has one of the fainting-convulsion episodes. I am grateful the doctor sees the episode.

Dr. Kaye’s answers:

Hard to know if the virus had anything to do with triggering the MSA, but even if it did, there is no anti-viral medication to prescribe
Because of the dementia diagnosis, Oregon Death with Dignity is not an option, but likely the heart will go into V-fib which will be the end
Palliative care is the next step
Thursday August 15, 2013

Randy, the physical therapist arrives and provides specific care tools to start adding, “I’m sorry it’s taken us so long to get your family into our rotation, but we are here now and not going away.”

The boys and I talk and decide to give my husband an impromptu 70th birthday party on Sunday. We speak to my husband about the idea and he seems receptive because I say, “Since both the boys are in town, let’s have a birthday party for you a little early.” He loves the idea.

I send out emails to invitees and make a few phone calls. Everyone I contact is quick to affirm attendance, with offers to bring food.

I call a local bakery to order a Cinema Cake and work with my youngest son to create a photo collage of meaningful pictures. The bakery informs me they do not have the edible copy paper, but that I can pick up a piece from a local decorating supply store. I call the store and thankfully they had the a piece of the correct size. I pick it up, drive to the bakery and pay for the cake, then send the collage jpg. REMEMBER: pick up cake by 4 PM tomorrow.

Friday August 16, 2013

My eldest son reports his father had a difficult night. We agree it’s probably anxiety about the party.

Together with the boys, we draft a grocery list and my eldest son shuttles his father to a haircut. Upon returning, my son tells me his dad and friend/barber have known each other for 44 years.

Saturday August 17, 2013

My eldest son takes his father to the coast for the day. My youngest son and I pick up the cake.

My husband tells us he plans to meet his HS Basketball Teammates in Santa Cruz. He explains, “I’ll hire a valet who can push my wheelchair down the pier.” He doesn’t understand he is unable to travel on a plane–even with two attendants.

I send an email to the ‘teammates’ to let them know my husband will be unable to join them this time.

Sunday August 18, 2013

I clean the house, set up the tables, dash to the stores for party supplies, shower and I’m ready when the first guest arrives.

My sons shower their father and dress him beautifully for the party. My husband is a mix of anxiety and anticipation.

Ultimately 30 guests arrive. My husband has a wonderful time with friends from all connections of his life. My sons and I are delighted with our success.

Monday August 19, 2013

Before my eldest son returns to his family, he makes arrangements for one of his friends to home care his father two days a week so I can return to work.

I send an email to my husband’s former colleagues. They begin to call for long chats to reminiscence.

Tuesday August 20, 2013

Both the OT and PT arrive at the same time. They urge me to turn the dining room into a bedroom. It feels too close to the exit. I’m not ready to make these changes. I speak to my husband about it. He leaves the decision up to me.

Wednesday August 21, 2013

Jeff arrives a little early and my youngest son takes on the training for the care of his father. I leave for work knowing my husband is in good hands.

Thursday August 22, 2013

By 10:30 AM, I’ve called Home Heath twice, leaving messages asking when the nurse is arriving. No one is returning my call.

My husband again brings up the trip to Santa Cruz. I explain as gently as possible that his health is a barrier to accomplishing this plan and that I have apprised his friends. He is very angry with me. He is devastated. He wails that I have destroyed his dream. He wants to call one of his teammates.

I check his email account and see his teammates have discussed the situation and suggest changing destinations to bring the reunion to my husband. My husband has me dial the phone and he tells his friend that his expectation of Santa Cruz is a “pipe dream”. His friend assures him the team is making the trip to Portland. I email his friend a link to a quaint local Inn.

My husband wants to “pull the plug.” “What plug?” I ask. He tells me I have been a great wife and mother. I tell him he has taught me so much; how I appreciate him being my best fan, greatest supporter; about how sad our youngest son is feeling because it has taken so long to recover from the car crash injuries and the cancer. My husband reiterates how proud he is of both boys.

We watch the Sopranos Episode 7 of Season 5. Half way through, my husband is exhausted and I help him to lay down on the bed. Oops, he’s back up. He cannot rest. He is agitated and filled with trepidation.

Friday August 23, 2013

Randy PT comes by with the tab alarm. My husband is asleep, so he shows me how to change the batteries, turn the alarm off and on, how to attach it to bed and clip it to my husband’s clothing.

After he leaves, I attach the alarm to my husband’s pajamas and then go to the kitchen. The alarm sounds and I dash back to the bedroom. My husband is cursing the alarm and tells me to, “Get rid of it. I don’t need it. I don’t like it.” I explain we will only use the alarm when I need to leave the room so that I know if he needs help. He is unconvinced.

We watch Soprano Episodes 8 and 9 of Season 5 and he sleeps all night.

Saturday August 23, 2013

I make a shopping list. We watch episode 10 and crawl into bed, all of us exhausted. He needs to be toileted every hour and a half throughout the night.

Sunday August 25, 2013

Friends drop by to visit. We watch episodes 11 and 12. My son has night duty so I can rest. I fall into the guest room bed, exhausted.

Monday August 26, 2013

Melba, the Occupational Therapist came by. She never seems to be able to get a good read on my husband’s blood pressure. After trying three times, she gives up and again mentions I probably need to call our handyman to get a bid on putting a barrier across the dining room so I can move the bed, beside commode, the bedroom chairs and the TV in the space, then call Comcast to install cable.

I tell her we’ve moved our life into the Master Bedroom, and we could get the shower fitted with a ramp and buy a shower chair. She mentions it could be a short time of use for a large investment of dollars. I frown.

Our friend, Dave, has been a hero since my husband lost his privilege to drive. He has picked up my husband 2-3 times a week to go to lunch and then return him home in a couple of hours. Since the diagnosis and need for the wheelchair and exacerbation of the symptoms, lunch with Dave at the restaurant is cancelled.

I call Dave, and ask if he is a morning person. When he affirms, I ask if he would consider dropping over to have morning coffee with my husband a couple of mornings a week while I go for my 4-mile walk. He is happy to have something to do to help us. I am so grateful.

We watch the last Soprano episode of season 5 and the 3rd episode of this season’s Newsroom. I only need to help my husband three times through the night.

Tuesday August 27, 2013

Last night my husband awoke me because he was falling out of bed. When I checked, his legs were dangling off the side of the bed. I go around to his side of the bed gently lift them up on the bed and tuck the blankets around him, kissing his forehead.

I awoke to my husband crying. I ask him why he didn’t awaken me so I could keep him company. He said, “I’m ready to get this dying stuff over so I can concentrate on something else.” We both laugh and cry for a while, then I go to the kitchen to pour and deliver our morning coffee.

My son and our friend Gary stay with my husband and I leave to meet with my friend Hallie. She lost her husband last year, and she is sharing much of what she learned over coffee.

While I’m visiting with her my son calls to tell me my husband is very upset about the tab alarm we’ve begun to use to alert us if he gets out of bed when we are busy in a different room. My son switches the phone to speaker mode, and I hear my husband yelling, “Get rid of the alarm! It was on for 25 minutes.” (Of course it was on less than a minute before my son reached the bedroom from the kitchen and turned it off.) I explain we need the alarm, but maybe I could change it to the voice that says, “Sit down please,” and he yells, “Change it to ‘Fuck You!'” We all laugh.

I see an FB post about 18 Household Tips That Will Get You Through Everyday.

While I’m out, I decide the noodles would be useful for my husband, so I go shopping and find two on sale for $7.95 at Ace Hardware. For our purposes, the noodle was a bust.

Wednesday August 28, 2013

Dave promptly arrives at 7:30. I pour his coffee and a second cup for my husband, and Dave carries them back to the bedroom. I leave to meet my friend Marian. We stop to pick up a coffee at Starbucks, then we walk 3 miles while she listens to me talk-talk-talk.

While Jeff, my eldest son’s friend, is here keeping my husband company, I am able to work on a hospital project for a good 6 hours. I feel gratified to have something accomplished for my office.

Thursday August 29, 2013

It’s been a difficult day. Jeff is not prepared to have a patient collapse, and I understand. I tell him I very much appreciate the help he has provided, but that I think my husband’s condition is going to require a professional caregiver. He is relieved to no longer be needed.

Friday August 30, 2013

Dave comes by to have coffee with my husband so I can go on my 4-mile morning walk. I drop by my doctor’s office for annual labs before meeting my friends to walk.

My cell phone rang about half-way through the walk with Dave saying, “How in the world do we turn off the alarm? We’ve listened to, “Sit down please, don’t get up’ for almost 30 minutes! How do I turn it off?” I laugh and tell him to push the button on the top of the alarm.

It took all day for the handyman to install a ramp and false floor to the shower. The bill: $1500.

I decide to bake a pie and make crock pot stroganoff. My family is thrilled.

Saturday August 31, 2013

The handyman calls to say, “Don’t use the shower until I secure the ramp.” (several months later, I discover, as my husband is reaching up to grab it, that the handyman never secured the shower-door frame on to which I’d hung a shower curtain. I found the screws and secured it immediately, grateful to have avoided any major catastrophe and that my father taught me to use a screwdriver.)

We decide to take my husband out to visit my folks. It took both my son and I to transport him, but it was a good visit. I had not seen my folks, both 88, since the diagnosis.

Upon returning, we both take a nap for a couple of hours. I awake to realise that since the day of the diagnosis, it feels as if life is suspended in mid-air and I dare not exhale. Our family has ‘circled the wagons’ around my husband, but he is not on his deathbed. We have to ‘adjust’ to the new physical complications, but to make the best of the remaining days, we must reintroduce as many NORMAL life activities as possible with a few changes.

We are watching football together this evening, although I have announced I am boycotting the game due to a Traumatic Brain Injury (TBI) for too many players. I serve left-over stroganoff for dinner, and we decide to watch the 6th episode of the 6th season of the Sopranos.

My husband faints while sitting in a chair. Both my son and I each grab one of his hands and sit quietly. I know my son is thinking, “this could be it.” I’m thinking the same thing along with, “Damn it! $1500.00 and not one shower!”

Sunday September 1, 2013

See what I found in my sewing box? The heart….

After the handyman ‘properly’ secures the ramp, I shower my husband. The ramp works well except for a large design and safety flaw, so I email the handyman to bring this to his attention and that I need it remedied at no cost.

Monday September 2, 2013

My husband’s 70th birthday. My son and I are taking him to Burgerville. It will be a celebration to remember!

On the lighter side: My husband says, “I’m thinking of going pee, but I’m wondering where the best place is to do that?”, to which I reply, “The bathroom is preferable.” “Ok,” he says, “where is that?” “Around the corner”, I say, “do you need some help?” “I guess I shouldn’t rely on you that much”, he counters. “Well, I could just follow you, if you want some direction.” “Ok, but I think I can do it myself.” I smile.

Tuesday September 3, 2013

I receive a note from my doctor letting me know my cholesterol is high. No kidding!! Stress eating and walking only 6 instead of 20 miles of week will do it. She wants me to come in to talk about ‘choices’. I reply I’ll change my eating habits and return for labs in a month.

I dash into work for a few hours then dash back home to meet the Palliative Care Nurse. She is returning on Monday afternoon when my brother-in-law will also be in attendance. I forgot to tell her about the lab orders for my husband, so I get them out and put them on the kitchen table.

Wednesday September 4, 2013

Went to work feeling as if everything was under control, but my son texted me alarmed that his father was having a very difficult day, forcing me to cut the work-day short and rescue him.

Thursday September 5, 2013

Awoke realising cleaning the shower is going to be very labor intensive. I have to pull up the 3 sections of the shower floor–they are kinda heavy–clean–then lay the sections back down a specific order, otherwise, they won’t fit. I think I could have designed something lighter and user-friendly, but too late now.

My husband wants me to contact his doctor for a summary of how his health went from A-Z. I send an email. Later the doctor calls and agrees to send the summary. He also says he will make a ‘home visit’ after returning from vacation and getting the lab results. (He never shows up.)

Watched the last two episodes of season 6….now what? Tony Soprano isn’t going to save our sanity after all….

Friday September 6, 2013

We retired at 9:30 PM last night with only two awakenings. This is the 4th night in a row and I am feeling reasonably rested, thank goodness.

I go to the kitchen to fetch our morning coffee and when I return, find my husband collapsed half on/half off the bed laboriously breathing, eyes opened wide but unconscious. Since then, his mobility and cognition has been considerably compromised. Maybe it was a small stroke?

Randy P.T. calls to check on us. I tell him as a family we decided on the ramp and about my husband’s collapse. He tells me he plans to come by on Tuesday.

The handyman arrives at 10 to fix the design/safety flaw. It took 2.5 hrs. but at no charge.

It’s not a good day.

Saturday September 7, 2013

I am teaching for 5 hours this morning while my son cares for his father

Sunday Sept. 8, 2013

I’ve begun keeping track of the episodes in a loose leaf notebook.

Finally able to serve morning coffee after 4 episodes within 30 minutes.

No reason to skimp on the esthetics…in fact, esthetics may be all that’s left to conjure for coloring up the remaining time best as possible.

On that note, I am concentrating on the details for my 70th birthday celebration. A Viking River Cruise to Paris followed by a visit to Highclere Castle and on to Denmark with no discernible date of return.

Monday September 9, 2013

I was able to shower my husband today so he could be clean-shaven, dressed and looking good to meet his brother who is coming to care for my husband, giving my son and me a break for 5 days.

Tuesday September 10, 2013

My husband is often too dizzy to stand up now. He is sometimes eating with his fingers because utensils are too hard to use and we are using a towel to cover his chest to avoid soiling his shirt.

My husband and I sit quietly and discuss whether he would want to consider donating his body to science for MSA research. My youngest son brought up the idea earlier in the day and told me about it. My husband is hesitant at first, but then decides he would be willing to do so. I tell him he does not need to immediately make this decision. We cry together and the conversation wanders toward finances and what he thinks will be best for me to do.

Wednesday September 11, 2013

Thursday September 12, 2013

I take my work equipment out of the back of my car and put it safely in the kitchen. I climb back into my car and begin to back out when I hear a crash…that’s when I realise I have left the back hatch up to hit the garage door….it’s a big dent in a new car.

I walk and upon returning home tell my husband and brother-in-law about the damage to the car. They are a mixture of sympathy and disgust.

I enjoy lunch with the LatteLadies and give each one of my LoveaLatte Cup Sleeves similar to this one.

Friday September 13, 2013

I walk with my friends, and then meet my friend Jana for coffee and a pedicure–what luxury!

Randy P.T. did not call nor show up today as I was told he would on Monday by Providence Home Services (PHS). Discouraging. However, PHS did call to tell me the Social Worker is scheduled at 10:30 on September 23rd.

The car repair will take 4-days and cost $2000. I quietly mention the amount it to my husband and my brother-in-law says, “Don’t repeat what you just said.”

Saturday September 14, 2013

My brother-in-law returns home. While I deeply appreciate the gift of respite he provides, it is difficult to re-immerse into the 24-7 care routine for my husband.

My son shares that there is a pain in his side where the tumor has been.

I fall into a restless sleep.

Sunday September 15, 2013

My husband awakens at 1:00 AM, 3:00 AM and 6:30 AM. I convince him to sleep a little longer and we reawaken at 8:00. We enjoy coffee together before launching into morning duties.

He is alert and able to help me help him this morning. We chat about the importance of keeping his muscle tone through exercises recommended by the Physical Therapist.

He is reading the sports page about the big Duck win over Tennessee yesterday. Now he wants to watch the rest of the San Diego vs. Philadelphia pro game.

I’ve decided after showering him, I need to pull up the 3 removable sections of wood covers so I can clean the shower tile below. It’s been a week.

Monday September 16, 2013

Dave arrives at 7:30 so I can go walk. I say, “Guess how much it’s going to cost to repair the car?” Both my husband and Dave look at me in stunned silence and then my husband–the guy with the dementia–says, “Call Allstate! We have accident forgiveness!”

I scoot out the door for my walk and wonder if he’s right and make a mental note to call our agent.

Wednesday September 17, 2013

I text my friend Marian to see if she could pick up some milk for me. She texts back that she’s taking a mutual friend to the airport, followed by an appointment with her personal trainer, but she could bring milk after that. I text her back that I’ll see if someone else can help me.

Melba arrives and she wants me to put the bedside commode next to the bed. My husband has a fit saying, “I don’t want to use that!” I try to reassure him by saying, “I need Melba to show me how to help you should we need it. Can we just practice?” He promptly faints backwards on the bed where he’s been sitting. He gains consciousness, and Melba tries to show me again, and again he faints. We give up. I move the commode back into the bathroom area and return the end-table beside the bed.

Melba motions me to the Tea Room where she tells me, “I’d put the commode back beside the bed so he can get used to seeing it there.” She goes on to say that if I want to keep my husband at home, I’m going to need to prepare the dining room, then rent a hospital bed and a Hoyer lift. She gives me 2-weeks to research care facilities and says she will research Hoyer lift rental. She also says I need to make arrangements to get an outside caregiver for 2-days a week to start so my son, and I can count on help, and when my eldest son and brother-in-law come to visit, they can just visit and not help with the caregiving. I am over-whelmed and depressed.

I send an email out to the LatteLadies asking if one could bring those privacy screens over and for help researching care facilities with Hoyer lifts.

Friday September 20, 2013

Thursday is a blur, but Dave arrives at 7:30 this morning so I can go walk. None of my friends can join me, so I call people and chat while I take a 3-mile walk.

I call the number of a private caregiver and leave a message. She returns my call and we set up an interview for next week.

Saturday September 21, 2013

My mother and brother bring hamburgers over for lunch and visit for about an hour. It’s good to see them. My mother gives me an unusually tight hug before she leaves.

Six friends come to dinner and bring the food. My son gets his father up to the kitchen using the wheel chair and the help of one of the guys. We enjoy lots of laughs together for about 2 hours, then my husband is very tired and returns to the bedroom via, what we have fondly named, the Wheelchairiot.

Sunday September 22, 2013

It’s been a hard morning. A Nurse from Providence Home Health drops by to tell us the bath aides will be coming next week, but she doesn’t know which day. I ask for Thursday because my husband’s friends (the high school starting 5 basketball team guys) are arriving from out-of-town on Monday afternoon. I don’t want any appointments to conflict the guys having a good time during the visit with my husband, but my son points out these appointments are important, and the guys will work around them. I acquiesce.

Later, when riding in the wheelchairiot, I ask: “Please pick up your feet so I can roll you.” “Which feet?” he asks. “The only two you have on the ends of your legs.” I reply. “Oh,” he says. We both laugh.

Monday September 23, 2013

Thomas the social worker arrives at 9:15 instead of 10:00 as expected. He watches as my son and I inch-by-inch transport my husband from the front of the house to the bedroom where Thomas begins to ask us questions, once we all get settled.

Thomas also mentions to my husband that one of the ways he could die is by choking to death, then follows up the information with, “What do you fear most, R?” My husband says, “Choking to death.” Both my son and I immediately direct our unison comment to Thomas, “That’s because you brought it up!” I had never told my husband choking to death was a possibility, and I am unhappy that Thomas mentioned it.

My husband trembles the rest of the morning, but does not mention choking.

His friends arrive at 12:30 and with the help of my son, transport my husband to the Inn where the guys are staying. They plan to keep him with them for the rest fo the day.

After doing a couple of loads of laundry and taking a leisurely shower, I make plans to treat myself to a Starbucks coffee in my personal cup.

Before I can leave, my son calls distressed to tell me his dad passed out at the Inn and he is bringing him home. (Undoubtedly still reeling from the “choking to death” possibility.) So, just like a GPS device, I ‘recalibrate’, put on the coffeemaker, and when ready, I pour Peet’s French Roast into my personal cup.

Later, I speak to one of the guys and he tells me to order BBQ rib dinners from Manzana and the guys will buy and bring them to our home. I place the order, and the guys arrive at 6:15 PM with rib dinners and good humor.

It takes about 20 minutes for my son and one of the guys to get my husband from the bedroom to the kitchen. He refuses to sit in the wheelchairiot, so two of the guys help him transfer to a kitchen chair. The party is on! Loud laughter fills the air as story after story about high school antics are regaled.

They get ready to leave around 8:00 PM and my husband is exhausted but very happy. Then he passes out when my son and I try to transfer him from the wheelchairiot to the bed. I work to untangle his legs, we manage to lower him down on the floor in a sitting position and talk to him while we wait for him regain consciousness.

After what seems like an eternity, one of the guys enters the bedroom to say good-bye, and we ask him to go get another guy to help us lift my husband up to the bed. He returns with two other guys and together with my son they lift my husband and lay him on the bed where he finally regains consciousness.

As we prepare him for bed, he insists we are wrong because, “I don’t remember passing out.”

Tuesday September 24, 2013

Melba drops by. She has found a Foster Home located near us. It will have a room vacancy soon. She encourages me to call for details. She says there is room for a Hoyer lift. I know I need to call, but I don’t yet. Instead, I order a  shower chair and send an email to the LatteLadies.

My husband insists he is walking to the Inn where the team is staying. I say, “It’s 2 miles away, I think it’s too far for you to walk.” “No!”, he points out the window, “it’s just right over there, by the movie theatre!” “Yes,” I say in an agreeable tone, “you are right. The Inn is next to the movie theatre, and the theatre is 2 miles from our home.” “You’re wrong”, he says flatly. I say, “How about you practice walking to the bathroom and see how it goes before you leave.” He stands up, then sits back down and says, “I’ll think about it.”

The ‘Team’ arrives at 10:30 to take my husband to the Inn where they plan to hang out with him all day. I pack a bag of supplies, and my son says, “Mom, I plan to join them after my shower. I’ll take the supplies.” The guys roll my husband out of the garage and get him settled in the van. They are all laughing as they drive away.

We have begun season 2 of HELL ON WHEELS. I think, “How àpropos.”

Wednesday September 25, 2013

Dave arrives at 7:30 so I can walk.

The ‘team’ returns at 10:30 for the ‘last round of good-byes before heading for the airport. More than once they mention plans for next year. My husbands eyes are glassy with tears.

The Palliative Nurse arrives and watches my son, and I transport my husband from the kitchen to the bedroom. She can see how difficult it is to carry out the task. She takes me aside and suggests we have a joint appointment next week with Palliative and Hospice care to assess if it’s time to get Hospice involved. I agree and ask for Wednesday.

My son cares for my husband while I work until 8:30 PM. When I get home he tells me his dad fainted when he stood up earlier in the evening .

We watch an episode of HELL ON WHEELS then collapse into bed exhausted at 11:00 PM.

Thursday September 26, 2013

My husband did not awaken all night. The first undisturbed night of sleep in 12 days.

Dave arrives at 7:30 and I fetch the repaired car, grab a cup of coffee at Peets, in my personal cup and go to a new bank to move the Hide A Heart checking account from the Bank of America who informed me that beginning November 1 there will be a monthly $13.00 service charge unless I keep a $3,000 balance or spend $250 monthly using the debit card…no exceptions.

I receive a call from the Hospice Nurse who asks me lots of questions about my husband. I explain things with as much detail as possible and in the end, she decides an evaluation is in order. I also mention how unhappy I was about the social worker mentioning ‘choking’ to my husband and how my husband had trembled the rest of the day and that I NEVER wanted Thomas to visit again. She was sympathetic and agreed.

The next day, I recieve a check from the LatteLadies in the mail to cover the cost of the shower chair. The shower chair arrives and the aid arrives to shower my husband with my help. It goes smoothly enough, but my husband is not happy about being showered by anyone but me.

Later in the evening, my son and I discuss the pluses and minuses of the shower aid and my husband interjects into the conversation, “What I want to know is why am I always the naked shower bunny?” We erupt into howls of laughter.

September 30, 2013

The shower aid arrives to shower my husband with the help of the caregiver, and my son. He is not pleased because too many people are giving him directions at the same time. He does not know which direction to follow and becomes frustrated. The shower aid is mifed at the caregiver and the caregiver and my son are critical of the shower aid. I hide in my home office.

October 2, 2013

I awake in a panic because I do not know what to do if my husband dies in our home if he isn’t transitioned to Hospice. I get up and Google ‘What to do when someone dies at home’ and find a comprehensive answer by Consumer Reports that I immediately print to keep handy, then send the link via email to all my friends.

At 1:00 pm, the Palliative Nurse and Hospice Nurse arrive. The Hospice Nurse asks lots of questions of my son and me and my husband. At one point she asks if he’s lost weight. I tell her between July 25 and Aug 15 he lost 10 lbs, but that he has not been weighed lately.

My son grabs the bathroom scale and together we try to help my husband step on to it so he can be weighed. After struggling for several minutes with no success, the Hospice Nurse decides it is not necessary to weigh him and instead she measures the circumference of his upper arm. She explains she will have the assigned nurse remeasure his arm periodically.

After the interview, the Hospice Nurse explains the Hospice Doctor must approve the transition and she places a call. Before she can even begin to report her findings, the doctor tells her my husband is ready to be transitioned.

I walk both nurses to the front of the house for leaving. After closing the door, I hear my son calling to me. I run to the bedroom to find my husband has collapsed and my son is cradling his head. He is agonal breathing. My son and I struggle to lay my husband flat on the floor so we can raise his legs, but this time it does not help him gain consciousness for some time. These episodes are lasting longer.

October 4, 2013

A Chaplain calls and wants to visit. My husband says, “No” he wants to take a nap, but I invite her to drop by anyway. She and I spend some time sitting in the Tea Room chatting. She asks me, “What are you discovering?” and I struggle to respond, “I always thought of myself as very independent, but I realise I am not feeling as independent as I first thought.” She asks if I can “reinvent” myself and I tell her “yes” then launch into my story of reinventing myself after the head and neck cancer and how it led to creating Hide A Heart.

After a while, I need to check on my husband and invite the Chaplain back to the bedroom to meet him when I see he is awake. She tells him she is not religious either, so he relaxes and they have an easy conversation about THE CHURCH OF THE PERFECT WEDGE.

October 7, 2013

My micro-neurologist calls and wants me to have the 1-yr post double stent surgery ultra-sound. I set up the appointment and realise that my own health is being over stressed.

I begin to make calls to see if I can find someone to stay with my husband for 2-hours three mornings a week so I can return to a regular my 4-mile walk routine.

October 8, 2013

I extended the hours of the existing caregiver so that I can return to my walking routine.

I accompany my son to his oncologist appointment where we learn it’s time for a CAT scan. We leave the appointment and treat ourselves to a nice lunch.

When we return, my husband complains that he isn’t happy about needing to ‘ask permission’ of the caregiver to do anything. I explain he only needs to request help. He looks at me and flatly states, “It isn’t dignified to ask for help all the time.” I understand.

October 9, 2013

MSA does not seem to have a steady decline. Some days my husband is very bad and has several episodes and poor cognition. Other days he has no episodes and his cognition is improved. Reminds me of that famous line from Forest Gump, “Life is like a box of chocolates. You never know what you’re gonna get.” I make a list.

Funeral Arrangements
Obituary
Benefits
Calendar
Remembrance
Caterer
Collage & Easel
Urn-Plaque
City
I planned to work from home for about a three hours–I got half the time in. It was not a good day. I cried disconsolently in the kitchen while fixing dinner.

Thurs: October 10

I am grateful to have returned to my walking routine on this crisp dry sunny morning.

Later, I dash to Costco to pick up some extra towels (it takes 3 for each shower) and then meet friends for lunch, returning at 3:00 PM

My son reported my husband had 3-episodes over the course of the day, but did not lapse into agonal breathing.

Friday: October 11

After returning from my walk, the caregiver advised there is now too great a risk for injury for my husband to try walking any distance. She also said she will let me know when the time comes to set up the living room with a hospital bed, bedside commode and Hoyer lift.

I have some irritating thoughts regarding the caregiver. I don’t like how she presumes ‘familiarity’ with our family leading her to make inappropriate comments. I don’t like how my husband digresses through the week, but improves over the week-end when my son and I give him a little more privilege and are more flexible with his requests, which my son has pointed out regularly. I don’t like how the caregiver is ‘chewing on my ear’ that my son is not doing this or that correctly. Between the two of them, I’m beginning to feel my anxiety increase.

My friend brought my mother over for lunch and we ate in the Tea Room while the caregiver sat with my husband as he slept.

Following a 30-minute visit with my mother, my husband asked to nap again and slept for about 40 minutes, after which his good friend dropped by for an hour. Afterwards he watched a little football while I put dinner together.

Later, he struggled with “not feeling well” and asked to be in bed, but rallied to watch a movie on TV before falling asleep.

In some ways, I cannot believe this is happening.

Wednesday: December 25

It’s hard to find joy, but we are smiling and keeping love in our hearts.

The Best of Things

Since the last post, the caregiver discovered that giving my husband salt 5 times a day has proven to raise his blood pressure enough to stabilize his balance and virtually eliminate fainting spells, convulsive body spasms and aganol gasping.

To date, the relief continues, albeit, dizziness has returned, but we have learned to raise his legs above his head whenever a spell begins, thus shortening the length of the experience and avoiding the worst of the symptoms.

The Worst of Things

My husband’s dementia swarms ’round like wasps with gigantic stingers and teeth.

The Long Good Bye

I finally reached the point where I could decide when to transition my husband to another part of the house
I am suffering a fair amount of incapacitating depression that prevents me from regularly cleaning my house, returning phone calls or responding to email or letters and cards. I cannot face grocery shopping, gift shopping or visiting friends and family
I am hard pressed to find joy, but in small bits, yet I soldier on as best as possible
I am tired, self-pitying and so sad
My husband remains amiable and loving, and so in the long run, these blessings and grace give me strength.

I am so grateful for the support and help of my youngest son, who takes on the care of his father every day to help me.

Humor is our only salvation!

One day my husband announced, “I’ve decided to die now.” I was sitting in the chair in our bedroom knitting. I said, “OK,” and climbed up on the bed and wrapped my arms around him. Some time passed, and our son came into the room and sat down. He asked if he could lay down between his father and me. We welcomed him, and the three of us lay together for about 30 minutes, at which point I said, “You know, I don’t think it’s happening right now.” And my husband said, “Me either. What’s on TV?”

January 2014

The right caregiver is worth her weight in gold, but the wrong one is an upset worth avoiding.

The good stuff: We have learned a great deal from the caregiver. My husband’s toes were developing ‘pressure’ sores, but we did not recognize them as such, nor knew how to prevent or cure them. The caregiver suggested we cut the toes out of his compression socks, plus she asked the hospice nurse for some ‘barrier’ cream. Then she showed us how to rub the cream on his feet and toes before putting on the socks.

About a week after starting, when dressing my husband, the caregiver identified that he had a fungus between his toes, so she called hospice a requested anti-fungal cream and powder. Within a week the sore between his toes began to heal with the fungus under control.

The caregiver added freshly ground sea salt to my husband’s diet. She makes a game of his taking it. She says, “Ready for your Cuervo shot of salt?”, and he licks the back of his hand where she dumps the salt and he licks it off with gusto and they both shout, “Ole!” The upshot of this sea salt therapy is that his balance improved and the dizziness waned and the fainting stopped…for a while.

12/26/13-1/3/14 Friday

The Downside to the Caregiver

It’s been a hard week. The caregiver and my son are clashing. They have outbursts in front of my husband. I point out it would be better if we take emotional conversations out of his hearing. By the time she leaves on Friday, I have made up my mind to let her go.

1/2 7:00 AM

My husband has begun to complain about pain when we transfer him from one position to another, i.e. from bed to wheelchair, etc. However, he is unable to define the area of his body in which he feels pain. I shared this information to the caregiver this morning and she responds, “I think I know where the pain is coming from. His ‘drop foot’ has worsened and  he is unable to turn when standing because the foot won’t rotate and twisting his ankle and knee. If it gets much worse, we need to plan to have the Hoyer lift delivered.” I say, “In other words, it’s time for me to prepare the room into which he will be living until the end,” and she responds, “It might be a good idea to get things ready before we need it.”

I decide to leave to run a couple of errands and burst into tears once I get into the car. Increasingly I realise that I have been ‘pretending’ this was not happening, but knowing that I need to prepare the new living space for him, makes it real. This is so hard.

The hospice nurse calls while I’m running errands. I report the new symptoms. She agrees it is getting close to the time to order the hospital bed and Hoyer lift. I return home from errands to pack up the Christmas decorations and prepare the room.

The hospital bed is being delivered today and the Hoyer lift on Monday. I call my friend who lost her husband last year and asked, “If you were to go through this again, would you buy the recliner or rent it?” She replies, “I have a friend who is selling a recliner. It’s hardly been used. I’ll pick it up for you and deliver it next week.” It’s been a hard day.

The dementia has progressed significantly over the last 3 days. The caregiver tells me she thinks we need to think about how to arrange the room. She speaks with the hospice nurse about the my husband’s advancing symptoms and it is decided further discussion will occur tomorrow during the nurse’s weekly visit.

I grow more and more depressed. My son is annoyed that he has not been part of the discussions with the caregiver, but the discussions have been in the early morning while my son is sleeping and his schedule has not lent itself to sitting down to talk. “Nothing has been decided.” I assure him. I am aggravated that his complaints are adding to my stress.

The caregiver indicated she thought my husband could be gone by April. I don’t feel the need to share this information with anyone right now.

My eldest son arrives in a week and my husband’s brother one week later. Once a decision is made, it will be time to let them know that they should plan to visit as much as possible.

The Hoyer lift arrived this afternoon. I have purchased three plastic tubs from Costco to serve as clothes and linen storage and I’ve padded one of the tables upon which to place the tubs so they will be positioned conveniently. I’ve cordoned off a corner of the room with privacy screens behind which to position the commode. It may be that the commode will need to be placed beside the bed when used, but can be stored behind the screen when not in use. The screens are movable so as to encircle the commode when in use.

Later I realise this is a stupid plan. It will be too hard for whomever is helping my husband to have to move the screens all the time.

I go to work and receive a call from the caregiver telling me my son is giving her a bad time. Then I hear from my son who is upset that the living room is being set up for his father. He admonished the caregiver about it because she was filling up the tubs with his father’s clothing and other supplies, which she had decided to do on her own. I had only asked that she bring my husband into the room and begin to orient him. I calm my son who tells me he apologized to the caregiver and all is now well.

1/3-At one point in the day my son is getting the baby monitor set up. The caregiver had insisted we needed this monitor so she could hear my husband call her if she was in a different part of the house and something our family would also use. When my son brings the camera into the living room where my husband will be transferred, the care giver becomes upset, angrily saying, “I don’t want that camera on me!” I explain to her that my son is simply trying to get the camera angle adjusted for seeing from the other room, but the caregiver continues to be upset. Her behavior is upsetting my husband and me and my son. We don’t understand…she wanted the monitor. I ask my son to stop trying to adjust the monitor for now and the caregiver calms down, but I am unhappy with the display on her part.

There has been some upset surrounding a gun that we have at the house. I do not understand the upset because during hospice intake interview they asked if there were weapons in the house and we answered honestly. A couple of weeks ago, Gene called me to say Amy was distressed about my son and that there could be no more discussion of guns or hospice would withdraw services. I do not understand where the upset was coming from. In a discussion with my son about the phone call from Gene, he says he thinks the caregiver has been going behind our backs to complain about us.

From out of the blue, the caregiver tells me my son needs to stop talking about the gun. I say, “I remember you talking with him about your gun.” In fact, she told me an entire story about when she was caring for another patient, she had had to take her gun out for protection from some people who seemed to be going to rob the patient’s home–at least that’s the story I kind of remember because I didn’t listen to it very carefully. I decide to ask her, “Did you call hospice about the gun?” She flatly denies doing so.

I now recall that on more than one occasion she has mentioned that my son is mentally ill because she used to work in a group home and she’s seen similar behavior as his. She has concluded this because my son and I have outbursts with one another when we are very stressed and disagree about a point. We often times poorly handle our disagreements and the caregiver has jumped to conclusions.

I remember upon arriving this morning, the caregiver told me that she is worried that one day she is going to show up and I will be dead at the hands of my son. Where is she getting this idea?!

On this day Amy and Gene stop by to visit my husband. At one point Gene is in the bedroom with the caregiver and my husband and I sit in the Tea Room and ask Amy if the caregiver called her about concerns with the gun. Amy says, “Yes.”

I go to work and receive a call from my son. He is again upset with the caregiver. He is in the bedroom with his father and he suddenly drops the phone to rush to his father who is falling to the floor. Then I hear the voice of the caregiver saying, “What have you done?! You should not have let your father fall.” and I hear my son saying, “I tried to catch him before he hit the floor.” I listen to the exchange between them, then my son comes back on the phone and asks if I heard the caregiver’s reaction. I tell him, “yes.” and go on to say he’s done a good job with his father. When I get home, the caregiver launches into a tirade about how my son had let his father fall and I say, “I was on the phone and heard the incident.” To which she immediately redirects the conversation by saying, “Oh, then you know what happened.”

In thinking back to the beginning of having this caregiver, I remember that she asked me if it would be OK for her to bring my son some herb she’d offered to get him. I said yes because he has a medical card. The next day she brought him some and about a week later she brought him some edibles. The next day my son came upstairs to tell me that after eating some of the edibles he passed out on his knees and had been in that position all night and he was very sore. As she leaves this night, she says, “You know I had those edibles made extra strong that I brought him so he would pass out.” I smile at her as she leaves, but I make up my mind that I must fire this caregiver.

My son is adamant that I fire her. He believes she is a con artist and that she goes through our home when alone with his father. I don’t know if this is the case, but I do know that drugging my son and fighting with him and calling hospice behind my back to complain is plenty enough to fire her.

6:30 PM

Friends have invited us to dine at their home, but we cannot leave as planned because the hospital bed is being delivered set up. I call to let our hostess know why we are going to be late, but she says, “No problem. When you are ready, I will send the guys to help.”

(Addendum: I do not know why I am not relying on my son to help with his father and join us for dinner. I recall calling our hostess to say our son would not be joining us, but I don’t know why. It may be that he has been upset and finally went to sleep and I decide not to disturb him; or that I think if he wants to come he will get ready to join us. I don’t really know the reasons.)

I wonder why I thought the hospital bed would come with sheets? Alas, $52.00 later, we have two sets, one set on the bed now.

At 7:15, I call our hostess to ask her to send the guys. It takes 3 men to help me get my husband out of the bedroom and into the car.

We have a wonderful time with friends from our early dating and married days. The food is wonderful and our hostess has prepared a beautiful table. It feels so good to laugh with a dozen good friends with whom we share lots of history.

Learning

From the beginning, we made the mistake of immediately drawing her into our frustrations, sharing confidences of various personal family ups and downs. The caregiver took this to mean she could interfere, correct or insult the way other family members cared for my husband.

I gave the caregiver permission to call hospice re: needs for my husband’s care, but I was unaware that she also called hospice to ‘tattle’ on family members about transport, transfer, discussions or behavior of family members of which she did not approve.

She would infer things and act as if we were ‘co-conspirators’ against other family members. She presumed ‘friendship’ and too much familiarity. The upshot is, it’s time to replace her.

1/5-I am obsessing about how to fire the caregiver. Finally, I decide to send a text: In light of you being uncomfortable in our home, I think it’s best you no longer care for my husband, which will give you the opportunity to pursue caring for a patient in your home so that you can stay home with your grandson. She responds, “that will be fine.”

Without Additional Help

My youngest son and I care for my husband alone until my eldest son arrives on Friday morning. I am so relieved to have him here because I am exhausted. I tell him the caregiver is no longer with us. He understands, but asks, “What are you going to do differently when you hire the next one?” and then takes over the duties with his father so I can sleep.

My husband faints in his chair and jolts backwards and lands on the ground. He falls out of bed one night and lands hard upon the floor. He is now complaining of pain in his back.

My eldest son leaves on Monday morning and I’m nearly in tears with anxiety over how to find a replacement caregiver.

The Silver Lining

If there is a silver lining in this situation, it is that my husband’s care has become so labor intensive, the time is fast approaching for the need to hire three caregivers for eight hour shifts. Perhaps the incentive of letting the caregiver go was just what I needed to find an adult care home nearby capable of handling his level of care so that I and my family spend time loving him the remainder of the days he spends with us while saving our own health.

1/8 Wednesday

I begin researching facilities to arrange for a week of respite care, only to find out it takes two weeks to make the arrangements and a nurse from the facility must visit to assess if we are in genuine need of respite.

Thankfully, from one facility I am given the name and number for a Seniors Resource Service. I am given the name of three possible agencies who may have someone to send and the name of two Adult Care Homes, the proprietor of one will also come for emergency care if he is available.

All numbers I call go the voice mail except the proprietor of the home with the proprietor who will come in an emergency. I ask if I can come by to meet him one day next week while my brother-in-law is here and he agrees.

Friday

Amy, the hospice nurse and Gene, the social worker stop by for a visit. My husband is sitting in his recliner. Gene tells me it is actually less expensive to find a Foster Care Home than it will be to hire 3 caregivers for 8 hour shifts. My husband stands to shake hands at the end of the visit.

Sunday

My brother-in-law arrives and quickly realizes my husband’s condition has deteriorated to the point where it takes all three of us to manage him. My brother-in-law agrees it is time for moving my husband to the living room and hiring 3 caregivers or placing his brother in a Foster Home.

Tuesday

The proprietor calls to tell me he has a room available, so my son and I visit the care home. It is immaculate, the husband and wife team are very sweet, the room is small, but sunny, the private bathroom across the hall is large and functional, the estimated cost: $4,000 per month.

We walked out holding hands and my son says, “The only way I can do this is to know that dad would not want us to get sick taking care of him.” We decided to have a milk shake in lieu of a strong shot of whiskey.

The Humor of Sadness

The Adult Care Home proprietor, Daniel, drops by to meet my husband to assess if the home could meet the level of care my husband requires. My son is nervous that perhaps the man would decide his father required too much care. I wasn’t sure, but I was nervous too.

During the interview, my husband asked, “Do you like the other fraternity members?” “Oh, yes,” Daniel answered, and we all smiled.

After demonstrating how my husband transfers from one position to another and following a warm and friendly conversational exchange, Daniel said, “Well, I don’t want to over stay my visit. I will see you next time.” and they shake hands.

I walk Daniel to the front door and he mentions how well my husband looks and credits it to the care my son and I have been providing, but he says, “You are going to hurt yourself because you are not moving him correctly.”

After the interview, I speak with my son at length. I want to have my husband transferred to the home by the end of the week, but my son wants to keep his father with us until after the Superbowl game, but that is two weeks away. I say, “at the rate of decline, I am not sure we were going to be able to last that long.” In the end, we compromise on making the transfer mid next week. I call Hospice who will make all the arrangements.

Thursday

When I go to reserve the room for my husband at the care home, I ask Daniel if he understands my husband’s condition is ‘progressive’ and if he is going to be able to care for him as things worsen. He assures me he can and then tells me the cost will be $4300/mo. I  querie him about his understanding of how to administer ‘end of life’ care, and he assures me he knows. He tells me he as been caring for people for 14 years. I sign the papers and leave feeling relief and deep sorrow, but thankfully, without guilt because my son and I have cared for my husband/his father with love, kindness and finesse.

1/24 Friday

I greet my husband in the morning and he sheepishly tells me he’s had an accident, but that I should “call the front desk. They are used to handling these things.” He doesn’t realise, WE are the front desk! When I mention that we will take care of it, he says, “Well, that’s good. We won’t need to tip them extra.” We all laugh.

Since Daniel’s visit, my husband’s dementia and physical decline has progressed ten fold. He is babbling nonsensically. He cannot focus his eyes. He calls for me, but does not seem to pay any attention when I respond. He is complaining of pain and has a pinched brow much of the time. He is unable to respond accurately to questions. He has become withdrawn, and has lost his sense of humor. I realise we have made this decision to move him to a foster home in the nick of time because my brother-in-law returned home this morning.

My husband has stopped using utensils and he grasps at air when reaching for food or other things; at times he does not seem to understand he needs to open his mouth to be fed. He is biting down on his medications and for the past two days, remained in bed all day. His urine has darkened and has a strong odor…but we think he needs to drink more water. He is removing his clothing. Later I learn, this is the actions of anxiety and he needs medication.

Today, he ate lightly and drank 38 oz. of water. His pee is lighter and the odor improved.

According to the Providence booklet, DEATH IS NEAR, explains some of the signs.

At one point during this day, my husband insists he wants to have a cigarette out on the deck and he wants me to wheel him there. I tell him, “no” because when he smokes he becomes so dizzy, often causing him to pass out. He is angry with me and decides to walk to the deck for a cigarette. I refuse to help him, pointing out that he could fall and hurt himself. I am angry and I speak to him harshly, trying to discourage him from doing this.

He starts anyway, holding on to the wall as he takes baby steps towards the bedroom door. I am yelling now for him to stop…threatening that I will NOT help him…He continues anyway. He stops at the two steps he must climb to reach the Tea Room. I keep saying, “don’t do this!” He climbs the steps, then sits in the nearest chair. He is not talking to me. He is ignoring me. I become more adamant with him, but he pushes on until he reaches the chair on the opposite side of the room. He sits there for a bit, then stands up and reaches for the doorway to the foyer. I continue to discourage this behavior saying, “i won’t help you. You need to stop this!” He reaches the three steps to to climb to reach the kitchen. He pulls himself up with the help of the banister, reaches for the door jam to steady himself, then continues to sit in the nearest kitchen chair. I am still yelling at him and I’m crying. He gets up from the chair and reaches for the doorway leading to the dining room. He sits in the first dining room chair, then turns to open the door leading to the deck. He walks out of the door to sit in a chair on the deck. I am standing in the living room where I can see him through the window in the dining room door. I look at him and realise he is looking at the golf course view for the last time, trying to emblazon it upon his memory. I am crying. I feel shame that I did not help him and that I have been yelling at him. I want to go to him, but something holds me back, as if I’m trying to allow him this private moment. (Later, I deeply regret that I have handled this situation so poorly. I should have helped him. I should never have yelled. I should have sat with him. I should have wrapped my arms around his neck and told him I loved him. I will forever be so sorry about my behavior; about ever being worried he would fall and hurt himself, because in the end, it would have been much better if he had fallen and died than to have to suffer all that lay ahead for him and that from which I could NOT protect him because Providence Hospice would NOT listen to our pleas to give him pain medication every hour!)

The right decision

1/25 Saturday-2AM-My husband loses control of his bladder before I can get the urinal. It takes over an hour to get him and the bed cleaned so we can return to sleep.

1/27 Monday 4AM–If I ever had second thoughts about moving my husband to the care home, they were erased this morning when after he wetted himself from head to toe, he could not comprehend how to help me get him up out of the bed and into the wheel chair so I could clean him up, into dry clothes and a clean bed. It took over an hour, but he was finally able to stand enough from me to pull clothes and linen off, transfer him to the chair and then back to the bed. I fell back into bed  exhausted at 5:10 AM.

Bingo!

Four days ago a new medication was introduced and this morning I realised that ever since then my husband has been very confused, babbling nonsensically, and unable to comprehend or respond to simple directions. I decided to skip the new med this morning and call the Hospice nurse to report his behavior changes on the medication and how much improved he was after not being dosed since 8PM last evening. I added that, “we have had meaningful , albeit, emotional conversation this morning, but nothing hysterical.”

After speaking with the Hospice doc, the nurse called to say forgo the new meds because indeed, it could, for some patients with the kind of dementia my husband has, cause more problems than it solves.

He is now sleeping peacefully, awaiting Angels, as I suggested.

Bittersweet Relief

Today he told his brother on the phone that we, “are moving to another B&B tomorrow, where the food is suppose to be much better.” He confirmed that the food would be better with me, and I agreed.

I hope he will not be anxious and worried when I am not present. I plan to visit often and have alerted friends to request they do the same. All have assured me they will drop by as often as possible. This is our new normal.

D-day

1/29 Wednesday 3 AM-Just as a child when unable to express fear, trepidation and frustration, for the past three nights, he has soiled the bed. This would not be such a big deal, except that his comprehension is so compromised, he tells me I am speaking in another language when I ask, “Can you sit up?” He mimics back, “knuspitp?” “Well, no wonder you cannot understand me,” I say gently and try to urge him to a sitting position. He resists, pulling away. He is aggravated and uncooperative. Finally, I call my son for help and together we get my husband out of the soiled clothes, wash and dry him, re-dress him in clean dry clothing and fix the bed with fresh linens.

My son returns to bed and my husband removes the blankets and all his clothing, tossing them onto the floor. I mention, “you are going to get cold.” but he pays no attention, babbling incoherently in his own world.

After about an hour of this behavior, he asks for pants. I manage to get underwear and sweat pants up to his knees and cover him with a blanket saying, “Let’s try to sleep for another couple of hours.” He immediately falls into a deep sleep.

7:30 AM

I bring him coffee and ask if he wants cereal. He says, “Hash-browns and eggs.” He thinks he is ordering from room service. He asks what the plan is today and I say, “We are moving to Daniel’s.”

8:30

I give him a bed bath and dress him for the day

9:30

My son comes up to eat his breakfast with his dad so I can shower

10:00

I begin collecting clothing and other supplies to take to Daniel’s

11:30

My son and I get him into the wheeled chariot, but he keeps delaying us. We finally get him into the car and almost reach Daniel’s, 5 minutes from our home, but realise we have forgotten his calendar and phone directory. This is a delay tactic, because we both know he will never look at the calendar or directory, but we turn around and drive home to pick them up.

12:30 PM

When we arrive, Amy the Hospice nurse arrives too and she spends time with Randy while my son and I set up my husband’s room. My son has brought pictures to hang and sets up the TV, but we need to go to Comcast for a different cable box.

I get my husband to lay down in the bed and cover him with his favorite “blankie”. I reassure him we will be back soon and that it should try taking a nap. He looks at me and says, “I didn’t know I was bad enough to need a place like this.” I wrap my arms around his neck and say quietly through tears, “I am so sorry we can’t take care of you anymore without getting sick too.” He says, “I don’t want you to get sick.” I say, “I know you don’t. Just rest and I’ll be back in a little while.” Then I leave his room. I do not dare to look back at him.

2:00

We decide to go to lunch, go by the house to pick up a few other things, drive to Comcast, swing by Burgerville for chocolate hazelnut milkshakes and then return to Daniel’s.

4:30

When we walk in, my husband looks like a thunder cloud sitting safety belted in a wheelchair. He is telling me this is the worse day of his life and he demands to leave. I begin spooning milkshake into his mouth and talking to him quietly, but he is so unhappy, he begins to pull the table cloth off the table holding two pots of orchids. I unclench his fingers from the tablecloth and roll him away so he cannot reach it.

Daniel offers to take my husband to see the dogs because I have said my husband loves dogs, but he is totally disinterested and says he is cold, so we roll him back into the house. Daniel reiterates, “this is normal behavior. Your husband has come from  home where you have taken care of his every need and he is used to you and your son helping him. If he had come from a nursing home or hospital, he would be use to strangers helping him. It will get better in a couple of weeks. You’ll see.” I understand, but my husband is so distressed, it is hard to watch.

5:15

My son gets the cable box installed and the TV is working. He comes out to roll his dad into his bedroom and removes the safety belt. We coax my husband onto his bed but he pushes the blankets off the bed and begins to remove his clothing. We try to distract him.

Finally he calms enough to want to eat dinner. We get him back into the wheelchair and roll him out to the table and introduce him to some other people already sitting at the table.

6:00

I begin to spoon feed my husband while my son watches in complete despair. My husband eats pretty well, takes some sips of the milk shake and then closes his eyes. My son asks, “Are you tired?” and my husband says, “Yes.”

We roll him back to the bedroom and get him ready for bed. Mary brings my husbands night meds and we tuck him into bed. She tells me she is going to sleep in the recliner in his room tonight so she can keep careful watch of him. He tells my son, “This is going to be fun.” and he means it.

7:00

My son and I return home exhausted. We tuck into our respective beds at 7:30.

What New Hell is This?

Jan 29-Jan 30 Wednesday-1st night-Thursday Morning

He would not sleep the first night, screaming for help and grasping at the window. Mary stayed in the recliner in his room with him so he would not be alone. Mary told me he has been upset, but that it is normal. “He is eating good.”

My husband rests a little, but continues to scream for help and between babbling nonsense, reports to me and my son that he is being beaten and slapped. I can see no bruises or red marks on his body or face. I try to reassure him, but he is not comforted.

Later, my son and I move furniture and hang pictures while my husband is asleep, but it seems as if he is passed out. I ask Daniel if he has given my husband more medicine than prescribed and he says, “No, he is very tired from being awake so many hours.”

Daniel tells me that my husband hit Mary in the chest last night when they were trying to change my husband’s clothing and bed. I apologize and reiterate that my husband has not been violent before. Daniel reassures me that he told my husband that he is not to hit people and people are not to hit him. I am distressed too.

I look at Daniel and ask, “Are you thinking of telling me you are unable to care for my husband?” “No, no, do not think that. This is typical behavior that will last about 2-weeks.” I am so relieved by Daniel’s answer, I give him a big hug. Daniel suggests that after Superbowl, my son and I do not come to visit as often so that my husband can ‘adjust’ to new caregivers. Daniel mentions I need a different style of under garment for my husband.

Thursday-2nd night-Friday Evening

Daniel spent the night in the recliner. I pick up the new style of under garment and my son and I stop my the foster home. I just want to drop off the garments, but my son insists on going in while I wait in the car.

An hour later my son returns telling me that Daniel asked for his help in calming his father. His father is still babbling and claiming abuse.

Saturday Afternoon

My son visits my husband and returns home to report he is ‘passed out’. My son is worried his father is being drugged, but I think his father is exhausted physically and emotionally.

Sunday

I clean our bedroom and remove all the medical equipment. I think this is weird, but a friend reassures me that I am “reclaiming” my space and it is a heathy activity.

My son and I pick up snacks to watch the Superbowl with my husband, who has been excited about this game for weeks, but he is ‘passed out’. He awakens at the end of the second quarter. He cannot form intelligible words. We kiss his forehead, telling him we will see him later.

Daniel lets me know that Mary bought some P.J. bottoms for $9.99 that tie so my husband is unable to remove his pants and under garments.

Monday

My son reports his father is reasonably coherent and calm.

Tuesday

I think I am meeting the hospice nurse, but she does not arrive. I have asked about removing some medication that seems superfluous. I call Hospice and speak with the nursing supervisor because I need an answer re: the medication. She tells me she will speak with the doctor and call me back. I leave feeling my husband is calm.

I drop off a Rx where I’m told it will be 1.5 hrs to fill. I give my cell phone number and call a friend to meet me at Starbucks.

The hospice nurse calls to tell me the doctor concurs to stop the medications and that orders will be delivered to the foster home tonight.

I have made stock pot lasagna and invited friends to dinner. It is the first social evening since early January.

Wednesday

I work at my office and my son visits his father. He tells me his father is calm and in pretty good spirits, but continues to be disoriented. He also reports that Daniel told him that from ‘out of the blue’ while transferring him from the wheel chair to the bed, my husband hit his wife in the face.

My son and I decide that another medication my husband was changed to in January has increased his agitation and causes hallucinations. We believe when he is also in pain but cannot articulate it. We know both ‘hitting’ incidents have occurred while being moved.

We decide we must talk to hospice and have Daniel be part of the conversation. We must convince the nurse to ask the doctor to return my husband to medication that did not cause these behaviors.

Thursday

Morning: I have decided to prepare the house for selling. I begin to make a list of what furniture to sell. The baby grand piano is at the top of the list. The Young Chang was a Christmas gift from my husband. I have discovered I have begun to detach from things I’ve always held dear.

Afternoon: There is a storm warning, but my son insists he promised his father we would visit today and besides, “We have to speak to Amy and have Daniel tell her what he is experiencing with Dad.” I acquiesce.

My husband is very happy to see my son and me. He can speak normally, but his thoughts are disjointed and he is reaching for air. When Amy calls, he tells her he is in a “new castle.”

I kiss my husband and ask Daniel if he has time to participate in a phone conference with Amy. I ask him to describe the hitting incident. Then my son, Daniel and I ask if medication might be part of the problem and request something different. Amy speaks to the Hospice doctor and then calls to tell us, “Yes, we can try something else.” We all breathe a collective sigh of relief.

Sunday

It’s snowing hard. My son insists he must visit his father because, “I promised him I would be back today!” We stop by Walgrens for a prescription and I see a Glow Pet and ask, “Do you think Dad would like this?” “Maybe,” my son answers, “I like it.” So we buy the unicorn in an effort to create a little ‘Magique’ in his father’s room.

We arrive with smiles and the unicorn night light, but my husband is agitated and needs a change of clothing, after which he falls into a fretful sleep.

An hour later, we return home and I place ‘Magique’ on my husband’s pillow. I tell my son he can borrow ‘Magique’ tomorrow night. I press the foot and I am comforted by the 20 minutes of glowing light as I fall to sleep. Glow Pets are not just for children.

Monday

After an hour of shoveling, we are able to get the car out of the drive-way and visit my husband. He is calm and sleeping.

Tuesday

We are so exhausted, we decide to give ourselves a day without visiting, but we feel uneasy.

Wednesday

I decide to work at my office and my son visits his father. I call and my son puts the phone on speaker and I tell my husband, “I love you” and he responds so that I can understand him to say, “I love you too.”

Later my son texts me to say his dad is having trouble swallowing food tonight. I know this is another symptom of the disease.

Valentine’s Day

My son and I pick up cupcakes for everyone at the Foster Home and I give Daniel and Mary a ‘Love You’ Hide A Heart. They are pleased, but my husband will not eat. We leave feeling depressed and retire early.

Saturday

I awake thinking I might not have the courage to go see my husband today, but then I think, “He doesn’t get a chance to lack courage…YOU must go!”

He smiles when I enter the room. He knows me! He tells me he loves me! We cry together.

Monday Feb 17

Our 41st Anniversary. I take a bouquet of red and yellow roses, but my husband is unresponsive.

Amy arrives and I ask if my husband can have an ‘air mattress’ to help avoid bed sores now that he is in bed most of the time. She tells me that unless he has a bed sore, she is not able to order the mattress. I ask about ‘prevention’ because isn’t the point to avoid developing bed sores. She counters that, “there is a lot you can do to avoid bed sores. Turn him every 2-4 hours and use barrier cream.” I explain that there are only two caregivers and 5 patients. It is not practical to expect them to turn my husband every 2-4 hours. She says she’ll ask if her manager will approve Medicare paying for the rental and returns from the phone call with the answer, “No.”

I have discovered other hospice providers WILL approve the air mattress, but to change providers now or should my husband be without services until there is an opening seems too risky. I rent the air mattress for $35.00/mo. I didn’t realise there was discrepancies between Hospice Service Providers. After all they are reimbursed through Medicare. Why aren’t the services uniform?

I planned to sleep in the recliner this night, but it is impractical. Instead, my son and I go to dinner.

Thursday Feb 20

My husband tries to tell me something, but I am unable to understand him. I wrap my arms under his neck and rest my forehead on his chest and whisper, “I love you.” I stroke his arms because his hands are withdrawn into a fist and he pulls away when I try to hold one of his hands.

After an hour, I leave because it is my parent’s 67th Anniversary and my son and I are going to have dinner with them.

Friday Feb 21

My son and I visit and tell my husband that several people have called to say they love him. We tell him that his nephew, Brian, is coming up to visit tomorrow. My husband seems agitated.

Saturday Feb 22

Brian arrives and my son and I take him to see my husband. My husband smiles broadly at the sight of him and tries to talk, some of which is very coherent. After an hour of regaling my husband with stories in which he is the star and he laughs out loud at the stories, I leave the boys to be alone with my husband while I go pick up some supplies that Daniel has requested.

Sunday Feb 23

Before taking him to the airport, Brian and I stop by to see my husband in the early morning. My husband is sitting in the recliner. He smiles at Brian and frowns at me. I tease him saying, “Hey, are you only going to smile at Brian today?” He ignores me. He is unable to speak coherently. I clean his eyes and glasses. We stay for 30 minutes and then it is time to leave.

Monday Feb 24

On the way home from my office I listen to a story on NPR about 25% of marriages of more than 30 years are ending in divorce, mostly because people are living longer and decide that they don’t want to live the rest of their life with the present spouse. The story talks about grief seminars that encourage people to write letters to Grief. I decide this would be a good thing for me to do.

Tuesday Feb 25

My son and I meet Amy, the hospice nurse at the foster care home. She has some unhappy news. She is being transferred to a different territory and will no longer be our nurse. Debbie is her replacement. We have met Debbie earlier when Amy was on vacation, so we are feeling reasonably comfortable with the change. We are grateful that Debbie met my husband in October so she will understand how much he has changed.

During her examination, Amy asks when my husband started keeping his hands rolled into a fist. We tell her it began about a week or so after he moved to foster care. I wonder why she has not noticed before. We explain that we think he is in pain because his muscles seem to be stiff and shortening and that when he is moved he cries out. She orders medication to relax his muscles and tells Daniel he is to give the pain medication when my husband awakens and before he moves him in the future.

Amy asks if my husband has had any more fevers and I say, “No. It is too bad because we thought perhaps he was developing pneumonia.”

She asks Daniel if my husband is eating the pureed food and he answers, “yes.” Then she asks if my husband is coughing when he eats and Daniel says, “no.”

I tell Amy that Daniel is concerned because my husband only drinks liquids in the morning, but refuses in the afternoon. I ask her what will happen if he does not get enough liquid and she answers that “his kidneys will begin to fail and he will not last long once the kidneys fail.” My son and I agree this would be a blessing.

Amy asks Daniel how many hours my husband is sleeping and he answers, “About 17 hours a day.” Amy turns to us and says to my son and me, “He is not really him anymore.”

Before Amy leaves, she returns to say ‘good bye’ and that she is so happy to have met my husband before he grew so sick and that she will “Never forget him demonstrating the 21 push-ups to show that he was getting better. She will remember the athlete he was and the volleyball picture.”

After Amy leaves, we are in tears.

Dear Grief

I will miss my husband’s humor. I will miss his calling me PRINCESS. I will miss him bringing me coffee in the morning and watching the sunrise behind the mountain and then planning our day. I will miss his presence in the house, filling it with boundless energy, activities and joy. I will miss him washing the dishes by hand because he does not ‘like dishwashers that waste water.’ I will miss him reaching over to hold my hand while we watch football, basketball, golf and Downton Abbey, Selfridge or other PBS series and On Demand movies together. I will miss us calling out, “Love You” every time one of us leaves the house. I will miss how he kept me grounded when I would spin out of control with emotion. I will miss his smile and his laughing at his own ‘one liners’ and how he endlessly entertained me. I will miss his handsome face and beautiful athletic and golden body, and his lanolin smooth skin. I will miss how he sucked everything there was to enjoy out of every moment of life and shared it with me. I will miss discovering the little glass heart he would hide in a secret place as our perpetual love note. I will miss how he always looked as if he’d stepped out of a fine men’s clothing shop with perfect posture, even when wearing gardening clothes. I will miss his picture perfect golf swing and his patience when teaching me a new skill. I will miss his cheerfulness in the morning and throughout the day. I will miss how much he loved me and treated me with respect and kindness and always with special attention. I will miss his compliments of whatever I was wearing, his appreciation of how I decorated our home and my lavish party planning and entertaining. I will miss his pride in my musical career and talent and how he would ‘sing my praises’ to all who would listen. I will miss how he was an expert at ‘taking everything as a compliment’ because he never expected anything less.

I will miss him. Nothing in life will be as much fun without him.

Thursday, Feb 27

I stop by to see my husband but he is unhappy, so I do not stay long.

Friday, Feb 28

My son and I go by to see my husband. He is agitated. His head is drawn down on his left shoulder and when we try to gently move it into a straighter position, he cries out in pain. My son tries massaging his father’s neck and left shoulder, but it is clear the massage is adding to the discomfort.

When he is audible enough to hear and articulate to understand, he is saying, “I want to die. Pull the plug.” I respond sweetly with a lump in my throat, “I know, but there is no plug to pull.” He pushes at me and turns his head further toward the wall. It is a difficult visit.

Daniel brings dinner in on a tray and points to the pills to camouflage with bites of food. I coax my husband to eat two bites and manage to dump a little water into his mouth, but because of the angle of his head, most of the water falls out the side.

My son and I leave feeling so sad. We don’t know what to do. We don’t know of any ‘options’ for ending my husband’s life.

Sunday, Mar 2

I visit my husband alone. He is sleeping and I stand looking at him for a long while, then kiss his forehead. He opens his eyes, but he cannot focus. I tell him I love him. He whispers, “I love you too.” I tell him, “You can decide if you want to eat or drink water. No one can force you. You have that power.” He lays there for a moment then says, “OK.”

Tuesday, Mar 4

I receive a text from Amy who tells me she is not being transferred and remains our hospice nurse. I am so relieved. We make an appointment for tomorrow at 2:00 PM.

My son reports that he as spoken to a friend who is an attorney. His friend tells him that since his father has a long history of making his end of life wishes known, including an Advanced Directive and POLST, then he has the right to refuse food and water with the understanding that comfort medication will be increased.

My son calls his friend who is a doctor. He agrees with the attorney’s assessment of the rights of my husband and his ‘end of life’ history. He also agrees  to come with us to the meeting with Amy tomorrow so that he can explain in “doctor speak” to her how we want to honor my husband’s wishes.

Today We Remove Hope

Weds, Mar 5

My husband is in a good mood and smiles when I greet him. Daniel reports to Amy that my husband is eating “good”. My son and I frown because we know that Daniel means well, but it is with a lot of coaxing that my husband is eating “good.”

We explain how my husband keeps asking to “die” and to “pull the plug” and that he is unable to ask for medication when he is hurting. We believe his medication should be increased. At this point, the doctor explains to the nurse that we are asking for ‘comfort care’, during which my husband asks me, “Am I getting better?” I tell him, “No”, and the nurse winces a little and sighs.

She agrees that she will ask the hospice doctor about increasing the medication to 3 X’s a day + PRN (as needed) for when my husband seems to be in pain. I point out again that my husband is not able to request medication when he is in pain and that it requires Daniel see my husband’s face grimacing in pain.

She agrees that food and water must be offered, but if my husband declines, it can be removed. She agrees to order all medicines in liquid form.

I know my husband has been holding on to ‘hope’ because Daniel and Mary have told him that when he gets better, he can return home. It was a way to get him to ‘behave’ when he was so upset upon first arriving at the foster home.

My husband falls asleep during all the conversation in his room. I know he realises his ‘hope’ for recovery is gone now because I said, “No” when he asked, “Am I getting better?”.

It is such a fine line to navigate. If I raise his hopes, then he will struggle to live and the disease will progress in very bad ways. If I dash his hopes, then he will give up and will not need to suffer further losses and discomfort from the disease. I decided that taking ‘hope’ away was the kindest, but it felt brutal.

Mar 6

11:00 AM–I cannot not make myself drive to work, and instead go to the foster care home andI sit with my husband for the remainder of the day. I notice that neither Daniel or Mary seem to stop in to check on my husband very often. When they do come in to reposition him, they do not medicate him first. I hear my husband cry out in pain, but I say nothing to them about the need to medicate first. Why did I not say something? I don’t feel I should challenge his caregivers, but afterwards, I go out and ask for pain medication.

Mar 11

My brother-in-law, his wife and a childhood friend of my husband’s visited today. That night my son and I met them for dinner. They promise to stop by before going to the airport the next day, but instead call to say they are concerned about getting to the airport early enough to return the rental car….it’s 9:30 AM and their flight is at 1:30 PM, but I do not have the will to ask them to stop by anyway because my son and I could use a hug.

Mar 13

Amy is scheduled to visit.

Mar 14

My youngest son told me he is struggling with the burial plans and would like a local place to be able to visit. He expressed concern that based on the plans I’ve made (filling the amulet below with a portion of my husband’s ashes and placing it in a rock in the garden then sealing the opening with a brass plate engraved with my husband’s name and dates of life)…

…when I sell the house, he will not have access to his father’s resting place, plus, “What happens with the rest of his remains?” I hadn’t thought about the rest of the remains.

Additionally, he is deeply convinced a ‘green burial’ is important so that his father can return to the earth and complete the “cycle of life.”

I want to respond to his longing. River View Cemetery offers ‘green burial’ for $1700-$3000 and will accommodate up to 4 people. There are only three of us, so there will be room for a guest. For another $3,000 we can have a bench. Whole body donation and ‘green cremation’ is offered by Crown Memorial Center Mortuary.

On Tuesday my son and I have an appointment to visit Nicklaus at River View, at which time I’m going to ask HOW to coordinate the cremation-2-burial transfer.

Mar 15

My son and I visit my husband. He sleeps through the visit. I tell my son, “he is hovering between worlds.”

Monday, March 17

I arrive at supper time and Daniel asks if I would like to feed my husband. I am hesitant because feeding him means his life is prolonged, yet if he is hungry I cannot withhold food. I ask, “Are you hungry?” He says, “yes”, so I give him a spoonful of food. I ask if he knows me, he says, “No.” I tell him who I am. He swallows then tells me, “I need to tell you some things.” “OK, what do you want to tell me?” but he says nothing.

He eats three more spoons full of food, then I ask if he wants some water. He drinks two small sips and then turns away. I mention it is St. Patricks Day, and he says, “I don’t care.” Then he asks, “how long is this going to take?” I say, “No one knows. You have a strong heart. It is the up side when one is young and the down side when one is sick.” He nods.

Pretty soon he says, “You’re wonderful.” I say, “You’re wonderful too..well, maybe not lately…” I tease, but he looks sad for my comment, so I quickly tell him, “No, no I’m just kidding. You are wonderful.” Then I ask if I can hold his hand, and he says, “Yes” and smiles a little smile. I place my hand in his and tell him, “I can remember the night we met as if it was yesterday.” Tears are spilling over and down my checks. I look at him, and he has fallen to sleep, but he is holding on to my hand tightly.

March 18

Observation: The foster home visiting hours are between 10:00 AM-7:00 PM, but not really because visitors are discouraged from dropping by at day time meal times 11:30-noon and 5:00-5:30, which cuts visiting time down by another hour. Many times when my son and I stop by to visit my husband, he is struggling with pain and we find ourselves asking for medication. While Daniel accommodates, we don’t understand why we need to do this and we wonder how my husband is being medicated the other hours we are not there.

Often when we arrive to visit my husband, Daniel tells us, “he is resting comfortably” or “he doesn’t seem to have any pain”  or “what do you see?”

My son and I are struggling. We want to honor my husband’s wishes about wanting to avoid lingering, but we cannot seem to get Amy, the hospice nurse to understand. We again tell her, “He is suffering. Can’t you write an order to medicate every hour, instead of  PRN (as needed)?” We tell her, “Daniel doesn’t seem to recognize when my husband needs more medication,” but Daniel points out that when he inquires of my husband if her “has pain” my husband doesn’t indicate the need for more medication. “But,” we complain, “he isn’t always able to speak!”

During the visit Amy informs me that Sharon, the Physician’s Assistant (P.A.) will be visiting my husband on March 24 some time between 2-4 PM to “recertify” him for hospice, adding-“Don’t worry, there is no question that he will qualify.”

From out of the blue, my husband says, “You know what would taste good? A burger and a beer.” I look at Amy and ask if it’s OK for my husband to have a beer or scotch, and she says, “it’s fine if he wants it.” My son is on his way to meet me at the foster home, so I call to ask him to pick up a burger and I dash to the 7-11 to pick up a beer. My husband eats three small bites of the burger and drinks about a third of the beer, then he falls asleep.

After Amy leaves, my son and I are getting more and more upset. My son tells me his doctor friend does not understand the resistance we are getting about asking to speak with the hospice doctor. My son asked his friend, “If you were my father’s doctor, wouldn’t you have stopped by to see your patient by now?” His friend replies, “Yes.”

I drive to work full of despair. When I arrive, I linger in the parking lot and call my husband’s primary care doctor. I explain our dilemma and ask for his help. He responds, “Sounds as if a team meeting would be a good idea.” I agree and ask him to set it up.

March 19-a blur

March 20-a blur

March 21-a blur

March 22-a blur

March 23-a blur

March 24-28

I work every day this week and can only visit my husband twice. Amy will be out-of-town for the remainder of the week. Her next visit is scheduled April 1st. I am nervous about not seeing my husband much this week.

Each day my son visits, and when he enters my husband’s room, he finds his father in pain and must ask for more pain medication.

March 24

My son arrives at the foster home at 2:30 PM, but Sharon has come and gone. Amy tells him that his father has been “recertified” for hospice. He and Amy agree that the undulating mattress may be actually causing my husband more discomfort than helping prevent bed sores, so Daniel removes it with the understanding that he will now need to reposition my husband more often and he agrees.

My son remains with his father for the remainder of the day and has to ask Daniel for pain medication more than once. He arrives home about the same time I do from work. We cry together. He voices concern that Daniel is still “encouraging dad to eat” and I tell him I’ll remind Daniel of the agreed upon protocol. He also voices concern that the medication doses need to be higher levels and given more often. “He’s in pain, Mom! This isn’t right!”

March 29

My son is not feeling well, so I visit my husband alone, but he is sleeping. I sit quietly and crochet for a couple of hours, glancing over at him. He looks peaceful, no longer grimacing with each movement of the undulating mattress.

Apr 1

My son and I arrive and Amy tells us she spoke with my husband’s primary care doc, discussing his medications and condition and agreed there was no need for a ‘team meeting’. My son and I are unhappy. We want a conference call with a doctor. Amy says, “Well, the doctors have not seen your husband, but the P.A. has. I’ll try to arrange a conference call with the P.A.” In unison we say, “But we want to talk to the doctor.” Amy says, “What would to say?” We begin a list that includes the concern about the medication levels being too low, but end with, “Please set up a conference call with the hospice doctor, the primary care doctor, you and us.” She says she’ll see what she can do, but the FULL ‘team meeting’ including his primary care doc is NEVER scheduled.

Apr 2

Dear friends, Phillip and Carol, visit my husband. My husband says Phillip’s name. For old times, Philip and my husband have a Scotch together.

Later, my son and I join our friends for dinner and we share happy stories about my husband and laugh. It feels so good to laugh.

April 4

My son and I visit my husband, but he is resting comfortably, so we do not stay long.

April 7

Sharon calls me and says, “I understand you want to talk to me.” I am surprised by her call, but launch into explaining our concerns about my husband’s wishes. She ends the call by saying she will try to be available for Amy’s next visit on Apr. 11th.

I tell my son about the phone call and Sharon’s ‘possible’ visit on the 11th. He still wants to speak to the doctor, but says, “At least it’s something.”

April 10

I arrive at supper time and my husband is awake. Daniel asks if I want to feed my husband. When the tray arrives, I notice there is a cup of pills. I don’t understand. I thought all his medications were supposed to be in liquid form, but I put a bow tie pasta and a pill on the spoon and ask my husband if he wants to eat. He opens his mouth, chews a little then swallows without resistance. I offer a sip of water and follow with another spoon filled with a bow tie pasta and pill. He again opens his mouth, chews a little then swallows without resistance. I offer a third spoon of the same combination, but this time he chews, swallows and spits back the pill.

I go to find Daniel and request a pestle and motar to crush the pill and a syringe to us after I dissolve the pill in water. It takes 5 syringes filled with the dissolved pill to administer the entire dose. My husband swallows the solution. I ask if he wants a cookie and he says, “No”, then falls to sleep. I stroke his forehead for a while, kiss his cheek and then leave quietly. I am very unhappy to see these pills that must be camouflaged in food. I make up my mind that we need to demand liquid medications for him.

April 11

Amy calls me to let me know that Sharon has taken an ’emergency’ leave of absence, but that she is putting in a call to the hospice doctor to see if she is available for a conference call during our visit today. My son and I arrive at Daniel’s and Amy calls Dr. Ames, who immediately answers.

Dr. Ames listens carefully to all the concerns my son and I have about the medications for my husband. I tell her about the pills last night, my husband’s wishes, the need to increase the medication levels and I begin to cry.

Dr. Ames is great. She understands. She is comforting. She changes the medication orders to Methadone liquid with the exception of one that does not come in a liquid, but Amy thinks the capsule can be opened and given with pudding or juice and suspends the muscle relaxer which also does not come in liquid form.

Dr. Ames ends with, “It will take 5 days for the new medication to reach comfort level. A nurse will call every day of the next 5 to ask about your husband’s respiration.” I say, “Will he be alarmed if his respiration is low?” “No”, Dr. Ames responds, “He will not notice.” “This is good,” I say, “I don’t want him to be scared.”

My son and I are relieved that we have FINALLY spoken to the doctor and the conversations seems to have gone well. We are hopeful that my husband will not have any more pain with the new medication. Amy remarks, “Well, that went well I think.” We smile and agree, but both of us a thinking, “Why did it take so long to get to talk to the doctor?” Then we hold one another and cry.

Amy calls later to tell me that the pharmacist says that she is mistaken, the capsule medication cannot be opened for dispensing. This is a medication that hospice doesn’t cover, so I make up my mind to research further.

April 12

I check with my pharmacist about the medication and she says the capsule can be opened and dispensed in pudding or liquid. She also says if the doctor writes the orders, the medication can be made into liquid through a ‘compounding’ pharmacy and she gives me the name of several locations. I report this news to my son and we agree that we will be contacting Amy or my husband’s physician to write the orders!

I have contacted two realtor friends who have agreed to meet with me and discuss my next actions for getting the house ready to sell. They spend hours with me, making recommendations and then we go to lunch and laugh about the response of the waitress when asked, “In what oil are the Brussels sprouts fried?” and she replies, “deep fried.”

April 13

I begin the process of removing personal pictures from the kitchen and tea room. With each one, I weep, then look for something else decorative to hang. This is going to be very hard.

At 5:00 PM, my son and I go see my husband and find him in excruciating pain and his left leg is shaking. My husband has a very difficult time talking, has not called out for help. My son asks Daniel for PRN (as needed)  medication and Daniel is a little short with him saying, “I’m busy fixing dinner for everyone”, but he finally gets the medication for my son to dispense.

In the meantime, my husband says, “Shhhh, don’t disturb them while they are busy.” I am uneasy about this comment. We wait 15 minutes, but the medication is not controlling the pain. I call hospice and explain to the on-call-nurse while my son returns to ask Daniel to come speak to the hospice nurse, but he is told to wait because, “I need to deliver this food tray.” While the nurse is waiting to speak with Daniel, I apologize for the delay, explaining, “It is meal time and Daniel is busy.” To which the nurse responds, “It doesn’t matter if it’s meal time, his patient is in distress.”

Finally, Daniel enters the room and the nurse tells him to get additional medication dose to administer, then tells me to call her back in 20 minutes if things have not improved. I ask if she will fax over new orders for Daniel and she says, “Yes.”

After 20 minutes my husband seems relieved. Before leaving, my son and I speak with Daniel about increasing the PRN medication dose and administering more often and we let him know the nurse is faxing new orders. He agrees to give the PRN medication more often.

April 14

I check with my pharmacist, who tells me the capsule CAN be opened and mixed with food, but that the entire medication must be consumed. How can there be such a difference of opinion between pharmacists? I’m also told that ‘compounding’ pharmacies can turn the medication into liquid, which would be easier for my husband. I ask for the list of local compounding pharmacies, determined to pursue this avenue.

Tuesday, April 15

I drop by to see my husband before going to work. He is resting, so I do not stay long.

Later, my son calls to tell me he has been on the phone with hospice because his father has been in pain when he arrived, and he has worked with hospice to increase the medication and asked for new orders, saying, “They never faxed the new orders to Daniel last night.” He also tells me he has videoed his father’s anguish so he can show Amy during her visit on Thursday.

April 16

I decide to walk to Daniel’s for my morning walk. When I arrive, my husband is asleep, so I stay for a little time to watch him and hold his hand and kiss his forehead.

Later my son tells me he called hospice and stayed on the phone with them for 2-hours asking for additional medication and waiting until finally his father was out of pain. He brought Daniel into my husband’s room to show him what to look for as signs of distress on my husband’s face because my husband cannot always verbally respond to Daniel asking, “Are you in pain?” My son leaves with Daniel’s reassurance that he knows what to do now.

Thursday, April 17

I arrive at 11:00 am and my husband is sleeping. I have brought my crocheting and plan to spend the day. I sit and hold my husband’s hands, kissing them periodically. At one point he opens his eyes and looks at me with total adoration and whispers, “You, oh you”, at which point I sob, “I love you” and “thank you” into his chest. I recover and offer to clean his teeth and give him sips of water. He is grateful.

At 11:30, my husband’s friend Roger arrives. My husband sleeps through most of the 2 hours of Roger’s visit, (and Daniel nor Mary come to check on my husband) but at one point he awakens enough to understand when I tell him Roger is there. He asks, “How’s he doing?” and I turn to Roger to tell him what my husband has asked. Roger takes it from there and begins to visit with my husband, reminding him of a funny story and my husband laughs out loud in response. It is a good visit for Roger.

At 12:00 I notice my husband is very stiff, so I call Amy to request we add back the muscle relaxer. She agrees. Then I ask Daniel to crush some muscle relaxer and mix it with ice cream and I give it to my husband. She also reminds me to tell Daniel that my husband can have .10 diazepam too. I hand the phone to Daniel so she can tell him and he brings it and 15 minutes later,  finally my husband seems to have relief and falls to sleep.

Amy is scheduled to see my husband at 2:30. She arrives at 2:15 and I hear her talking with Daniel. My husband awakens and when I try to adjust his pillow, he cries out in pain. I go out to Amy and Daniel to let them know. Daniel brings the medication and I point out to Amy the knots in my husband’s arms and I say, “This new medication isn’t working for him.” She agrees he needs higher doses and puts a call into the hospice doctor, but the doctor isn’t available. Amy tells me she will keep trying and will call me to let me know the changes that will be made. For the remainder of her visit, my husband sleeps.

I remain with my husband until 5:00 PM. I note he has not eaten since breakfast, but for the ice cream with medication.

Amy calls to tell me the doctor has prescribed methadone 3X’s a day instead of 2X’s beginning tomorrow. She says she has faxed the new orders to Daniel.

Friday April 18

I arrive at 11:15 and ask Daniel if he received the new orders and he affirms he has. I walk into my husbands room to find his head hovering above the pillow. I can tell by his face that he is in anguish. I go find Daniel and ask when he’d given meds and he responds, “At 11:00.” I ask Mary to come look at Randy and show her the muscle in his left leg is taunt like a cable and the knot protruding from just below his knee, but she says, “He is scheduled for more medicine in an hour.” I ask Daniel if he will call hospice and ask, “What dose did you give him?” He tells me, “.75″

Now our friend Don has arrived and he sees Randy is in distress. I tell Randy we need to wait 10 more minutes for the medicine to begin to work. Randy tells me that, ” You don’t understand that these are not good people”, but he cannot explain the problem. Both Don and I are somewhat alarmed at what Randy is trying to tell us, but we are not sure if my husband’s dementia and the pain are contributing to what he is saying.

At 11:40, I go back out to find Daniel sitting at the kitchen counter and ask him, “Can we give him another .25?” Daniel agrees. At 12:00 I go out to ask Daniel when was the last time my husband received muscle relaxer and he tells me, “with breakfast.” I ask if he can have some now and Daniel agrees. He brings the medication mixed with warm yogurt and I urge my husband to eat it. I also request diazepam. In a few minutes, he falls asleep.

Don and I visit in between my sojourns to find Daniel for medication requests. At 12:45 my husband awakens and says, “I’m hungry.” I find Mary and tell her. She warms some soup and places a piece of cake on the serving tray. My husband eats 3 spoons full of soup, but does not want cake. I give him water and in a little while, he falls back to sleep and Don leaves.

I leave at 1:45 and let Daniel know I will be returning at 4:30 with another friend.

I send a long text to Amy explaining how the morning has gone and that I am concerned Daniel is not understanding or how to interpret facial cues.

TEXT:

“Hi Amy, thanks so much for responding. When I walked in and found Randy in absolute agony holding his head suspended above the pillow at 11:15 I was in despair. I immediately went to ask Daniel when he’d given the last meds and he said .75 at 11:10. I asked Daniel and Mary to come look at the long muscle in Randy’s left leg that is as stiff as a cable pulled taunt and request more meds but Mary said not until 1 hr, so I asked if we could at least give .25 more and Daniel agreed at 11:40 plus muscle relaxer plus diazepam. Randy finally fell asleep until 1:40 when he awoke grimacing in pain particularly when I tried to adjust his pillow, so I asked Mary for a full 1.0 dose of med and she agreed. I was a little concerned that no one checked back in the hour to see how Randy was doing, maybe they relied on me to tell them, but it concerns me that they may need to be checking him more often when we are not there. Can the order be for 1.0 every hour? Should we think the new medication may not work best for him and return to higher more regular doses of morphine?”

4:30 My son arrives and I return with friends, but Randy is sound asleep. We try to arouse him, but he sleeping deeply, although rouses enough to administer 1 dose of medication with a little water. Daniel tells my son we must awaken my husband so he can eat dinner, but we are not able to awaken him and tell Daniel. We leave at 5:30. I believe my husband is completely exhausted because of the pain he suffered all day. And, I wonder if he was also in pain all last night too.

Saturday April 19

Andrew is arriving today-Monday. Because he is shunning his brother, I am very unhappy with Andrew for choosing this time in our lives to work out issues. I remind myself that whatever fissures exist in a family are further magnified during times of great stress, but I am not consoled by the reminder.

Easter Sunday, April 20

My youngest son and I are spending the day with my parents, but I drive over at 10:00 AM to Daniel’s to see my husband, deliver chocolate Easter eggs for him and chocolate bunnies for my oldest son to take to my granddaughters. Andrew calls just as I am pulling into the drive way of the foster home. He tells me he had a good visit with his father; he is sorry to miss me; and that he will be returning later in the day.

My husband is awake when I arrive and I wish him Happy Easter. I ask if he would like a bite of chocolate and he smiles a little and says, “yes”. I give him a couple of bites and ask if he had a nice visit with Andrew, but he doesn’t respond. I tell him I love him and kiss his hands. I notice his forehead is a little furrowed, so I ask Daniel when my husband last had medication. He says, “at 7:30 breakfast. He can have some now.” and he administers it. I stroke my husband’s forehead, tell him Andrew will be returning later today, then I stay until he falls asleep.

Monday, April 21

8:30 AM-I meet my friends to walk 3.5-miles.

11:30-I meet with Amy and discuss the issues regarding my husband’s agony. She agrees a medication change is immediately necessary. Throughout her visit, my husband sleeps quietly, but his arms and hands were constricted into a fist under his chin and his forehead furrowed, so Amy administers pain medication. She checks his respiration and heart beat, both are faint. He is eating very little. Amy tells me that the signs point toward the end of his suffering. After her visit, I drive home.

I am beside myself. I don’t understand why we have to keep asking for medication! I don’t understand why Daniel isn’t giving medication every hour, as the PRN says he can! I don’t understand why my husband is being made to suffer while doctors and nurses and caregivers ponder over how to medicate him!!!!!!!!!!!!!

12:30-I open the refrigerator and see a large container of aging mushrooms…I decide to save them by making Hungarian Mushroom Soup. The sun is shining, but by supper time, it is pouring rain.

3:00-5:30– I take a nap and when I awaken I’m supposed to attend a Tribute Concert to my maestro, Norman Leyden.. There are tickets waiting for me. I am unable to get dressed. I tell my son, “I don’t think I can go.” He nods with understanding and decides to go to the gym. I go to bed in tears.

Tuesday April 22

8:00 AM-My walking friends are playing golf this morning, and I am too depressed to walk alone.

11:30 AM-I stop by to see my husband for about 30 minutes. He is sleeping quietly. I leave and return home. I want to go to work, but I am not able to get out the door.

6:00 PM-My husband is awake and alert when friends stop to see him. They share a sip of Scotch and my husband graces them with some laughter. It is a good visit.

April 23

8:30 AM-I meet my friend and walk 3 miles

9:30 AM-Amy calls to tell me that my husband should not have any alcohol, now that he is on methadone. Apparently Daniel has called her complaining that my husband had a bad reaction. I call my son to let him know and he tells me, “Mom, he only had the the amount the tip of a straw held. It was hardly any. BTW, your friends left the bottle, but I brought it home.”

Noon-I stop by to see my husband for an hour before going to work and he is sleeping. I am relieved so I actually drive to my office and stay until after 5PM.

6:30 PM– When I arrive home, there is a bouquet of flowers and a sweet note sitting on the kitchen table from my son’s friend. I have a special place in my heart for this friend of my son. I have known him since he was three. My son and his friend have gone to visit my husband. They return to report my husband was awake and alert and treats his visitor to a smile and a laugh. My son again says, “Dad’s forehead was furrowed, so I asked Daniel for medication.”

April 24

I shower and dress for work with plans to stop to see my husband, but I am so restless all I can do is drive to the foster home and hold his hand. “This can’t be happening.” I say to myself, and big tears are rolling down my checks as I silently sob…I do not want him to hear me. I do not want to distress him. I ask Daniel for his pain medication. I stroke his forehead and he falls into a reasonably peaceful slumber.

The word of the day: anagnorisis: the critical moment of recognition or discovery

I am going to lose him.

April 25

When I see my husband today, he is in a deep sleep. I sit and hold his hand and tell him my favorite stories about our life together. My voice cracks and I go silent while the tears come. I cry quietly because I do not want to upset his peacefulness. When I can breathe again, I resume the story. I am hopeful he is unaware of the time lapse between sentences.

Later Chris calls to check with me. He explains he is scheduled for back surgery on May 5th and will be unable travel for 6 weeks. I want to be accommodating.

April 26

Five of the ten LatteLadies arrive at 10. They have brought boxes, tape and determination. They clear the living room of the extra furniture I have been ignoring since my son moved home to help me. They are full of suggestions and resources…

Furniture Consignment
Pool Table mover
Handyman
Christmas decor Ebay reseller
A political contact
Paint and Battery recycling
…and they have brought lunch, laughter and love.

April 27

Gene, the social worker calls to ask if I am happy with the foster home. I’m not quite sure how to respond, but I decide to say, “We’ve had some communication issues.” He then asks me what the visiting hours are because when he stopped by at 9:30, he was denied entrance. He adds that he recalls that my husband planned to donate his body to science but asked if we had registered with the OHSU program. I tell him I think so, but I’ll double check and let him know.

Later I text Gene to ask if it is unusual to be denied entrance to a foster home after he has identified himself being from hospice. He replies, “Not necessarily. AFH like to keep to schedules that make them happy and can be a source of frustration for the rest of us.

Monday, April 28

I run errands and pick up some yarn. I have a friend who will have a bone marrow transplant in a couple of weeks and I want to make her a shawl because I think a shawl will be like a hug around her shoulders.

I meet Amy at 2:30 and she tells me my husband has a fever. “It isn’t too high”, but she has given him some Tylenol and reiterates she knows his wishes for no antibiotics. My husbands eyes are rolled up in the sockets and he does not respond to anything. Amy says, “It’s the first time he seems completely unaware. Daniel mentioned things have changed drastically in the past 24 hours. He has not eaten today. He wetted the diaper in the night, but has not been wet since. Amy quietly says, “The time is growing near.” and then hugs me. She also says that Sharon is scheduled to visit on Wednesday and that she will try to also be present.

After Amy leaves, I sit quietly on the bed with my husband. I am holding his hand and stroking his forehead while big tears fall from my eyes onto his T-shirt.

Upon arriving home, I tell my son about the fever and he says, “It’s a good thing, mom.” Then he leaves to meet a friend and work out, saying “I’ll be back late tonight.”

I search for the OHSU packet, find it and realise my husband never signed the documents. I remember they arrived on a day that he thought he was going to live because the salt therapy was working. We didn’t want to bring out the body donation papers and burst his bubble, so I had tucked them away in a file marked, End of Life Info. I text Gene to let him the papers have not been signed and ask if he knows if I can sign them for my husband since I have power of attorney.

I start the shawl for my friend and work on it for a couple of hours, then take a break. I send a text with news of the fever to my brother-in-law and eldest son. They each text me back letting me know they appreciate me keeping them informed. My brother-in-law says he’s calling me tomorrow. Then I make a journal entry on the CaringBridge.

I start to clean a bathroom drawer, tossing out old make up, medicines and half-empty bottles and tubes of this and that. I am sick to my stomach. I am breathing shallowly. My heart is fluttering. I change into sleeping clothes and decide to write in this journal.

Tuesday, April 29

I arrive at Daniel’s at 11:00 to meet some friends who have asked to visit my husband, and find that Sharon, the P.A. is with my husband. She did not call to let me know, so I am surprised. I go into his room and his eyes are open, but he is not conscious. (Maybe he’s had a stroke, but the PA says nothing about it)

When I mention to Sharon that I expected her tomorrow and that Amy planned to be present during her visit too, she says, “I had to change my schedule.” Then adds, “There’s no question he qualifies for hospice.” I ask if my husband should be transferred to Hopewell House and she says, “I think he is getting good care here.” I think to myself, ‘not so much.’

She leaves and our friends enter the room. I think they are surprised by the condition of my husband. They stay about 30 minutes and after hugging me, leave.

April 30

11:00 AM: Amy tells me that my husband is transitioning and has between 24hrs-14 days of life left. She says, “This is the first time his eyes are not focused. He looks as if he’s had a small stroke.”

When I return home, I tell my son what Amy said. At 4:40 PM, my son and I go to see my husband. We are sitting with him, but he is unresponsive. My son and I look at one another and decide we want to stay with my husband so he will not be alone.

At 7:00 PM, I tell Daniel that I we want to stay and that my son will be returning after the Blazer game and he says, “OK. I understand.”

Daniel checks on my husband around 8:00 PM and brings me a glass of water.

My son arrives at 10:30 PM and Daniel let’s him in because I can’t seem to figure out how to disengage the door alarm in the dark. I drive home in tears with plans to return early in the morning to relieve my son.

Thursday May 1

7:30 AM When I arrive at Daniels, he beckons me to talk to him. I find he is upset with my son. He thinks we are ‘spying’ on him. He accuses my son of questioning his care and trying to dictate his business. Mary chimes in that she used to ‘charge for visitors, because “I have to answer the door and it takes me away from my work.” and both she and Daniel accuse us of sending our friends to “check on us” and that “he knows his business.” after all he’s been doing it for “14 years!”

Daniel accuses my son of being in his “kitchen,” and “demanding help when he is trying to get breakfast to other people.” My son responds, “I was only asking for medication for my dad. I waited for you to come in in the night, but you didn’t come in, so I waited until I heard you out here so I could ask for the medication.”

Mary looks at my son and says, “What difference does it make if I am 10 minutes early or late with his medication?” I think to myself, “If someone is in pain, 10 minutes is a long while to wait”, but I lay my hand on my son’s arm, signaling for him to calm down, then say to Daniel and Mary, “We only want to be with my husband so he is not alone when he dies.”

Daniel goes on to reiterate a story he’d told me a few weeks ago about a former patient whom was told had two months to live and lived 4 years. “Hospice doesn’t know when your husband is going to die. Are you planning to be here many days and nights. We will need to charge you.”

I think to myself, “I don’t think that lady was in the same condition as my husband,” and my son says, “She was eating. My father hasn’t had anything since Monday.” Daniel goes on to say that Joann, the other caregiver who works part-time, has been made nervous by my son telling her what to do. My son retorts, “I asked her to give my father pain medication before moving him, as hospice said should be done. She was going to move him without medicating him.” “You are trying to run my business!” Daniel says with vehemence.

I again place my hand on my son’s arm and say to Daniel, “We are upset with hospice because we do not think they have ordered the proper levels of medication.” This statement seems to quell the heat in the conversation.

The Vigil Begins

My son and I sequester ourselves in my husband’s room. My son is seething. He tells me he has been falsely accused by Daniel. He tells me Daniel wanted to drive him home in the middle of the night as well as in the early morning. He says, “They don’t want us to know they aren’t caring for dad correctly. My God! What’s been going on when we have not been here to advocate for dad?!” He wants to call Amy to tell her what is happening and I tell him to call her. Amy returns his call and says she will be there at noon. (This is a problem because the refrigerator repair man is arriving between noon-3PM and one of us has to be there.)

My husband’s eyes are fixed. My son notices the fan is directly blowing into his father’s face and he gets a wash cloth and positions it to shield his father’s eyes from the wind. I am amazed at my sons forthright actions. I seem to be paralyzed with non-action.

8:30 Joann has arrived with medication on the hour without the need to request it.

My son suggests we call Andrew, Chris, and my parents to give them a chance to say good-bye. We dial each one, hold the phone up by my husband’s face so that he can hear his son, brother and mother-father-in-law tell him how much he is loved.

9:30 Chaplain Sherry calls and asks to drop by. She has a calm nature and talks to us quietly. She leads us in a OHM chant. She asks if I can feel a change in the room, but I say, “no, but are the angels gathering?” My son says he can feel a change. She says a prayer and as she prepares to leave, my son asks if we should tell her what happened this morning.

I decide to tell her that Daniel and his wife are upset with us for wanting to stay with my husband so he is not left alone. Sherry is sympathetic, and wants to know if I want her to alert Gene, the social worker. I say, “I don’t want to upset things again.” My son excuses himself to use the bathroom. Sherry begins to walk out and turns back to touch me on the shoulder and say, “You have EVERY right to stay here with your husband. Do not leave if you don’t want to.” “Thank you,” I say and let my son know what she has said when he returns.

10:30 Joann brings medication and my son follows her out to apologize for making her nervous. She tells him she is not nervous, but she must do what her boss directs her to do. He asks her for some wash cloths to put on his father for the hot spots and she shows him where to find them.

My husband breath sounds as if he is on a respirator with long pauses between exhales. His head is turned toward the wall and he is staring with a blank face. We talk to him. We stroke his arms and face and hands.

11:00 An ambulance arrives to take one of the other patients to the hospital. Providence delivery arrives with a new apparatus for my husband’s bed. Daniel says he’s been asking for these repairs repeatedly for weeks because the bed shuddered loudly each time it was raised or lowered. I think to myself, “Now they decide to fix his bed? Now? When he is in the midst of this hard business of dying?”

Noon-I must leave to meet the appliance repair man, just as Amy is arriving. My son wants me to stay, but the new refrigerator is spitting ice chips everywhere in the freezer. I cannot afford for this appliance to be ruined. I am torn, but I go and tell him to “conference me in” when Amy arrives.

Luckily the appliance repair man calls at 12:15 to tell me his is “on his way.” He arrives just as my cell phone rings for the conference call with Amy. She says with some urgency, “He could go at any minute.” She reiterates that we have every right to be with my husband and that she will remind Daniel.

1:00 I pack a basket with a few things to eat and return to the foster home, relieved that I am not too late. When I return, Joann is leaving for the day. She shows me some of her knitted projects. She knits beautifully. I begin to cry and Joann puts her arms around me, then says, “You are strong. You can do this.” I say, “I don’t feel strong.” She replies, “I have lost two husbands. You can do this.” Then she leaves as her shift is over.

We sit with my husband, singing songs, telling him we love him, holding his hand, laying cool washcloths on his forehead, legs and arms because he has hot spots.

1:30 Mary comes into his room to administer pain medication. Thirty minutes later, she returns and asks my son to help her roll his father on his side so Tylenol medication can be administered rectally. My son quickly grabs a pillow in the nick of time while rolling him because my husband’s face is about to hit the wall. I wonder how many other times my husband has been rolled into the wall. I now recall how I could hear him protest with some fear and agitation when he was being rolled on other occasions. I am kicking myself that I did not bring him home. I silently ask his forgiveness.

2:30 Mary brings pain medication and asks if he is “hot?” I say we have been putting wash cloths on him. She checks the cloth on his forehead and re-wets it with cool water.

3:30 Daniel comes in with medication and to ask if we need anything. He checks my husband’s knees and mentions to look for bruising as an indicator.

4:00 Mary brings two plates of watermelon saying, “It is too hot in this room.” We have the fan on. I know they have air conditioning in this house, but they have not turned it on. I do not say anything about it.

4:30 Mary brings medication. We continue to tell my husband how proud we are of this hard work he is doing. We praise his goodness, his humor and his courage. We begin to tell funny stories in which he starred.

5:30 Mary brings medication

6:00 PM-I send my son home to grab my medication that I forgot to bring this morning, plus other supplies and encourage him to take a shower. Before he leaves, he goes over how to turn off the door alarm.

I have been sitting on my husband’s bed since 9:30 AM. I have developed a kink in my neck.

7:30 PM Mary checks to see if my husband needs more pain medication, but I say, “I don’t know” and she decides not to give him any.

9:30 PM Mary stops in to check on my husband. She looks at his knees. She tells me if I need her, just “call into the monitor.”

10:00 PM My son returns with dinner, my medication, toilet paper (because since the upset this morning, we are apprehensive. I am feeling as if it is a problem for us to use the toilet and the supplies), a roll of paper towels to replace the ones we asked for earlier, plus various other supplies, including the pillow off my bed.

We turn off the monitor because we do not want to make a lot of noise unwrapping the paper wrapped hamburgers and we want to chat a little.

11:30 PM I am so tired, I decide to lay down on a drop pad kept under my husbands bed. It is very hot and I do not need a blanket. I doze for about 10 minutes, then get up to check my husband. He is still breathing as if he is on a respirator. My son has re-dampened the cloths.

I lay back down and close my eyes for a bit, then awaken to ask my son about my husband’s breathing. He tells me it is the same. I fall to sleep.

Friday, May 2

1:00 AM My son says, “Mom, wake up. I think the time is close.” I get up quickly and sit on my husband’s bed and grab his hand. His lips are white and his chest is barely moving.

My son sits in a chair near to his father’s head. He has brought books from which he begins readings of importance. He has brought ruins and other oracle representations and placed them on his father’s chest. He keeps his hand on his father’s chest under the t-shirt as he reads. When he is finished, I recite The Lord’s Prayer. We again tell my husband how much we love him, then my son turns on the monitor and calls to Mary that his father is gone.

1:40 AM After a long day of taking final breaths, my husband slips away. He would say he, “asked to play through.”

I found this note from him in a drawer a few days later

Mary Catherine Lunsford

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About marycatherinelunsford

On the quest to reinventing, Morphing into Author is my newest adventure.
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4 Responses to Bada Bing…How Tony Soprano Saved Our Sanity…almost

  1. pronewbrian says:

    Not too long. My thinking is sure I read an uncomfortable amount I am me I get it but g** d****t this is my friend and for her to write this I can’t imagine the doubts the doubled and the redoubled grief and the fear of harshness. What I takeaway is the courage to write it and the faith that these words, for sure a strain to read and absorb, will help others. My faith is these words are Catherine’s and she has influenced others facing similar circumstances. I am pretty certain the courage it took to post this was flat out incredible

  2. Jan Thompson says:

    Oh Thank You for posting this journal – I can’t tell you how much is meant to me to read about the same feelings, emotions, doubts… etc… that I experienced – you really don’t know how much I appreciated the ability to recognize the same experience and give my self forgiveness for so much that I questioned … and you were so eloquent in writing about. I’m so sorry for what you have gone thru but I’m also so sorry for me and others that have to lose their loved one all the time questioning everyone else – it has to get better – this end of life – it has to be better!

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