Khalil Gibran told us that out of suffering emerges the strongest souls, that the most massive characters are seared with scars. Marcus Aurelius told us that the impediment to action advances action, that what stands in the way becomes the way. Napoleon Hill told us that every adversity, every failure, and every heartache carries with it the seeds of an equal or greater benefit.
Elisabeth Kübler-Ross told us that the most beautiful people we have known are those “who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern.”
That “beautiful people do not just happen.”
When Joseph Campbell outlined the hero’s journey for us, the premise was that at the moment of the deepest and most unmoving difficulty, the protagonist recognized that it was they who must change. That which seemed to derail the path was the pinnacle moment at which the true path was actually revealed.
In each case, the epiphany is that the presence of the challenge is the initiator. If we are lucky, our lives will continue to grow as we are presented with new paths, and various obstacles among them. To heal is not to arrive at a place where we are absolved of that difficulty, but where we no longer interpret the presence of it as our finality, our ending. Rather, we come to see it is as yet another beginning in support of the continual unfolding of all we will one day know ourselves to be.
In a world where most of us die before we are dead, where most of us hyper-fixate on what we cannot control and leave to ruins everything that we can, where most of us fear our humanness and our vulnerability — I hope you find the courage to try. I hope you will come to see that just maybe, beneath the journey you fear to take is the life you had been waiting for, all along.
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Mom will be discharged on Wednesday
2
Practiced getting into and out of my car. She did GR8!!!
- Commode and step-in tub clean and ready for use
- Shower wand works!
- Desk shoved over to close off the dining room
- Groceries picked up
- Hospice scheduled
- Supper planned
We’ll see how it goes, but I feel good having hospice to help with assessments
3
Checked out and back home. What a relief for her to have bathroom access and someone to help her immediately.
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Hospice accepted her for 30 days, then re-assessment. She’s on ‘the cusp’ of being too healthy for hospice, which is actually good news, but causes me trepidation, for whom shall I call if they don’t recertify her and things go sideways, which they are likely to do?
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Her ‘team’ came today for medication review, checked the wounds, provide salve and check on her emotional state, which is remarkably buoyant.
She requested to listen
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She rose at 5:15 to toilet, and I half-listened to be alert in case I was needed. I began to dose when I heard her exit the bathroom, but she went to her chair in the den instead of returning to bed,
I didn’t know if she had her robe on, or if she could locate a throw, so I turned on the light and went out to check on her. She was sitting in the recliner. I turned on the heating pad and gently asked her to sit forward so I could adjust it behind her back. Then I covered her with a throw and fetched her medication.
Her: My back hurts
Me: I’m sorry. Let’s take the medicine and see if it helps
Her: Go back to bed
Me: It’s nearly 6:00
Then I reclined the chair and she almost immediately fell asleep.
I put on the coffee pot, fed the dog, and went to sit in the living room to take up a crochet project.
I didn’t know if this was the end, but it would be like her to try to ‘elegantly’ move to the recliner to avoid dying in bed or making a fuss or mess and her last words be of concern for me.
7
I went to my home today and:
- Picked up Rx
- Got gas
- Picked up mail
- Walked
- Chatted with a friend
- Paid bills
- Showered
- Bought a birthday gift for my brother
- Drove back
According to my brother, our mother slept on and off all the time I was gone
8
Andrew is 53.
She did not take a morning nap today.
She really enjoyed visiting with the Chaplain, who randomly selected and sang the song that she last heard at her mother’s funeral in 1950.
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She was up several times through the night.
She didn’t want a bath aid, but the young woman was really good with mom, and all went well.
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“No matter what happens, she’ll always know you were there.”
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Before the visit from the nurse, she is singing DO RE MI. When she gets the ‘Ti’ she sings: “Ti, a drink with Fred and Ted!” I went hysterical laughing.
Her: Well, it rhymes!
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Vacuumed the den and dusted
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Went for a walk, visited a neighbor, showered, briefly saw my son, returned to mom’s and started supper
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We waited for 45 minutes for the bath aid, and when she did not call or appear, we did a spit bath, which worked out just fine.
I sat beside my mother on her bed and she suddenly exclaimed…
Her: You look so drawn
Me: You can’t see me
Her: I can see that you look tired and drawn
and she began to weep.
Me: It’s OK. I’m fine
Her: No, you’re not, but I don’t know what to do about it
I put my arms around her shoulder
Me; it’s just the way it is right now
Then, to distract her, I presented her with this
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I had the strangest dreams last night,
In the first dream, I was escaping from a Russian spy, but I kept making noises that would alert the spy to what I was planning!
In the second dream, I was trick-or-treating with my young son. We came to a house of a nice lady who offered him a pot holder and a fabric pie, He refused them, so because I was wearing a candy necklace, I pulled a piece of candy off to give to him.
That dream reminded me of when my son was around 4 years old, I enrolled him in a children’s theatre school, but he wasn’t very happy there and insisted I come to one of his classes, In this class, the children were to ride on a pretend bus to travel to a pretend apple orchard where they would pick pretend apples and put them into a pretend basket, then ride the pretend bus back to a pretend kitchen where they would make a pretend pie.
My son dutifully did all the pretending, but when he got to the pretend kitchen he announced, “There! I’ve put the pie in a microwave, BZZZZZZZ and I don’t want to eat it!” And to me, he said, “Let’s go!”
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Nurse’s visit went fine…BP 120/60
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Three naps and some confusion today
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Her: When my sister, Dorothy, graduated from HS, Mom went with her to buy an outfit. It was very youthful and it looked wonderful on her. But, when Mom went with me to buy my HS graduation outfit, she picked out a suit that looked like an old lady. I said, “I don’t think I like that one very much.” And Mom said, “It doesn’t matter what you like, it’s what I’m buying for you.”
At graduation, all the other girls wore youthful outfits, except one. Her grandmother had bought her a suit that looked similar to the old lady one I wore. I knew Mom favored Dorothy over me. I thought it was because they shared a mutual sense of humor.
Me; No, I think your mother had a mean streak
Her: I’ll never forget when I was visiting Mom one day when you were just a baby, and she said, “Grace, why not call your old boss and see if you can get your job back?” I said, “But, Mom, who would take care of the baby?” And Mom said, “Why, I would.” “You would?” “Sure. Go ahead and call.”
So I called my old boss and he was pleased to hear from me and said, “We’d love to have you back, can you start on Monday?” “Monday?” Then he said, “I understand you have a baby. Do you have someone to take care of the baby?” “Yes, my mother.” “Great!”, he said, “We’ll see you on Monday.”
Pop came home early that day and Mom invited me to stay for supper, which was a surprise because they never invited me, and I was hungry, but I would say anything. When we sat down for supper, Mom said, “We’ve had a very interesting day.” “Oh, how’s that?” Then she looked at me and said, “Tell him.”
So I told him that I had called my old boss and that he said I could go to work on Monday”
Him: Who would take care of the baby
Her; Mom said she would take care of the baby
Him: Oh No, that’s NOT going to happen. Your mother isn’t going to take care of your baby so you can go to work.You’ll need to call them and tell them you can’t go to work
I looked to Mom to tell him that she would take care of the baby, but she didn’t say anything. “But, they are closed now and I can’t call.” Then I picked you up, and walked back to the little chicken shack we were living in, crying all the way.
I called Rikert the first thing Monday morning to let him know I couldn’t come to work. He asked me why, and I said, “My mother changed her mind about taking care of the baby.” Rikert said, “Oh, I’m sorry to hear that. We would have loved to have had you back.” and that made me feel good.
I don’t know why my mother didn’t say anything.
Me: I do. She had a mean streak.
21
Lovely, sunny day spent in surprise of good company and a balm to my wounded heart.
22
Beautiful, sunny spring day.
Mom had a lot of pain today, mostly centered in the tailbone, but not necessarily radiating up in the back. I did not call hospice because the condition was similar to a lot of days in which she has suffered the same pain. I hope I made the right decision.
Whenever I think, “it’s hard living with a time bomb,” I conclude, “that’s what we all are doing all the time with our own lives… we are living time bombs.”
23
Lots of napping each day. The weather was so beautiful, so after supper we sat on the deck for a bit before heading to bed.
Brutal news re: my cousin. Liver, spleen and lymph nodes are involved now. I’m at a loss for how to comfort.
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My cousin has been a TOWER OF STRENGTH, facing treatment with courage and determination. The news is a devastating blow, altho her doctor wants to start a new drug therapy, with insurance approval. Only she can decide if that’s what she wants, knowing it’s futile.
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She had a pretty good day spent with the housekeeper
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She awoke in a full sweat and with indigestion around 5:00AM, put on her robe and went to sit in the recliner. I didn’t hear her get up, and was surprised to find her in the den at 4:45AM.
She had a morning nap from 9-10:45 , a 11:45 nap from noon-1:40 after the hospice nurse’s visit. BP 80/60. The third nap was from was from 2:00-2:45.
Her: I don’t understand why I’m sleeping all the time
Me: Well, your BP was a little low
Her: But not that low
Me: Do you recall the doctor saying that the heart attack did some damage to your heart?
Her: Yes
Me: The damage has compromised the heart function
Her: What can be done about it?
Me; Nothing, but, it’s better to keep the BP low to try to avoid the aneurysm rupturing
Her: You know that place I went for rehab? It’s a sad place because most of the people there are just waiting to die
and that’s when I realized my mother hasn’t accepted what hospice is.
27
She got up sometime during the night, took medicine, then went to the recliner and fell asleep. At 6AM, I found her exiting the bathroom and saying,
Her: My robe is on the chair
Me; What?
Her: My robe is on the chair
Me: Let me get it
Once we got things sorted out, the morning routine followed until she awakened from her nap. I happened to be following her when her legs buckled and I was able to guide her to the floor.
I called hospice and they sent firemen and I went to grab the wheelchair from the garage. The firemen got mom up, into the wheelchair and onto the ‘throne’, took her vitals, which all read in the good range and left. I called hospice with the vitals readings and asked,
Me: What’s the next steps. Right now she’s weak and shaky
Nurse: Hospital bed, but you will need to clear the space where it will be placed because they don’t move furniture. I’m not sure they can deliver a bed tonight, but they could tomorrow. Get her some food and something to drink and let her rest for a bit. Call me back tonight
Mom is aghast because she thought hospice was going to relieve me, which I knew very well was not the case.
Mom: Did you know how this was going to be?
Me: Yes
Her: How?
Me: Because Randy had hospice and when I couldn’t care for him, I had to find a foster home and hospice continued to check on him, provided a hospital bed, prescribed medications and supplies, but that was all
Her: I thought they were going to help
Me: They are helping, but they do not do patient care. They provide a list of caregivers we can call to interview and schedule help.
Her: Maybe I should go to the hospital… but, what would they do for me? Nothing but help me toilet and feed me, so really I should be in a nursing home, but that’s where I was.
Me: And, you worked hard to strengthen your legs so you could come home. Nothing has changed. As long as you can stand and pivot, I can do the rest. But, if the day comes when you cannot stand and pivot, then we have to consider a foster home, or a nursing home, or hire someone to help me.
After about 2 hours, she was strong enough to stand and pivot from the wheelchair to the recliner, where she ate soup for supper. And then, she was able to stand and pivot into the wheelchair so I could roll her into the bathroom, where she could stand and pivot onto the commode, then reversed the routine and back to the recliner where we plan to have her sleep through the night.
The hospice nurse called at 7:00PM and I told her we didn’t need a hospital bed, but she wants to have a nurse visit mom tomorrow. Depending on how mom is doing tomorrow, and what the nurse says, I may be able to dash home. Maybe tomorrow will be better.
28
3:00AM
I awoke to try to figure out the next steps.
4:00AM
THE DOMINOS HAVE CRASHED
She had been asleep since 6:30PM last night, and I was anticipating the sound of the lowering recliner. I rolled the wheelchair into position for her to stand and pivot, but her legs were weak, and she fell hard into the wheelchair. I rolled her into the bathroom, but she was too weak to hold on to the grab bar to stand.
I called hospice and they sent the firemen to help, but stressed we needed a plan.
Me: I know we must have a plan, but right now I need help with getting her toileted. The same fire crew from yesterday afternoon arrived, helped her and made it clear that they can not be relied on to come out several times a day.
Fireman: Call hospice to get a plan in place tomorrow morning
Me: I will. I just don’t know what I’m going to do in the meanwhile
Fireman: You’re doing a good job
Me: I wish I could do more, but I think a foster home is next
They left and I called hospice to thank the nurse of calling to get help, and then asked what time I should call tomorrow to design a plan
Nurse: I’ve put in for a social worker and nurse to come this morning, They will call after 8:00AM to schedule a time
Me: I think we are going to need a foster home
Nurse: That could take a few days to arrange. In the meanwhile, you’ll need a hospital bed and training on how to care for your mom
So, now I’m sitting in the living room figuring out where to move furniture to make room for the hospital bed.
7:30 PM
What a day! Hospital bed arrived 30 minutes ago. The nurse came and later mom said,
Mom: I don’t like what she said.
Me: About what?
Mom: About losing the use of my legs and that I would be bed bound and need a catheter and the bedside commode, IN THE LIVING ROOM!!
Me: For now, you have been standing and pivoting in and out of the wheelchair and the recliner and toilet, so as long as your legs hold up, we’ll just keep doing things the way we’re doing them
Her: When people say things like that nurse, it takes people’s ‘will’ and ‘hope’ away, because you think, ‘why bother?’
and, once again I realize my mother does not fully grasp the concept of ‘hospice’, and I am NOT going to take ‘hope’ away!
On a very surprising note, James Lee Stanley, a long-time musician friend asked me if I had a MP3 file of my song, WHAT GOES AROUND COMES AROUND because he wants to play it during his radio program on May 7th from 6-7PM as part of a retrospective for his 78th birthday.
One of the LatteLadies drove over to hand deliver a card of encouragement.
These little ‘glimmers’ certainly brighten a person’s day.
And, she’s able to stand and pivot! Hurrah!!
29
1:00AM Toilet
6:00 Toilet, meds, let the dog out, feed the dog, start the coffee, medicate the dog, start a wash
6:30 Breakfast, meds, let the dog out, let the dog in
7:00 Toilet, let the dog out, let the dog in
7:30 Toilet, let the dog out, let the dog in
8:00-10:30 Nap
11:00 Nurse/Social Worker visit
Noon Toilet, Lunch, Meds, feed the dog, let the dog out, let the dog in
12:45 Toilet
1:00 Grocery delivery
1:15 Nap, and I dash to the store for the products left out of the order, let the dog out, let the dog in
2:00 Toilet
2:30 Friend visits
3:00 Toilet, let the dog out, let the dog in
4:30 Toilet
5:00 Supper, meds
5:30 Toilet
6:00 Meds, dog up-chucks, let the dog out, let the dog in
7:20 Toilet, Bed, Meds
8:00 Let the dog out, let the dog in, I go to bed!
30
I found a leopard print (she has a wild clothes side) poncho and she likes it. Unfortunately, it’s too much material to handle for loo trips.
Her: It’s luxurious
The schedule today was consistent with yesterday, except I went to bed at 7:30PM.
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