A Little Light Reading

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Ever since Mom’s heart attack last spring, I’ve been reading more books on caregiving, dementia, and death and dying. The montage above shows what I’ve read on this topic over the past 10 months. I feel like since it’s my responsibility to keep her as happy and healthy as possible and make sure she has the best life available to her at present (the always, ever present – now…and now…and now), I have to also be sure that I can recognize when it becomes time for more difficult choices.

Final Gifts was very interesting. It was written by people experienced in hospice care and talks about the ways a person might try to let the family know that death is near, sometimes in coded statements that the family may not understand until after the fact. One example was with a parent who had been an avid traveler before being stricken with cancer. In what turned out to be his last few days, he spoke of needing to be sure his bags were packed. Family members thought he was delirious, but the hospice worker pointed out that he might be trying to let them know that he was getting ready for his last big journey. Not that the dying mean to talk in code, just that they sometimes do. As far as I can tell, Mom is not currently trying to give me coded messages.

When A Family Member Has Dementia: Steps to Becoming a Resilient Caregiver was probably the most helpful. Rather than recommendations for hands-on helping techniques (which I’ve kinda got a handle on after nine years at this), it focuses more on the ways a caregiver can find strength and hope in what often seems a hopeless situation through reframing and conscious, deliberate self-care. Mom has always been a master at reframing, even though I would guess that she’s never heard that word in her life. It’s a very valuable life skill I’m happy she was able to pass down to me early on.

And I just finished Happier Endings: A Meditation on Life and Death. It is a more thoughtful book, with essays addressing a wide range of topics related to death in America.

  • Fear of dying, as our experiences with end-of-life conditions have become more medicalized and often carried far past the point of compassion or utility.
  • How different spiritual traditions address care for a deceased loved one, and how America’s move away from religion and church-going has left many without any of these traditions to cope with their grief and loss.
  • Ways to think about our own lives to help us overcome that fear of death
  • How overcoming these fears can allow us to have a better dying experience, whether one is the person dying or a family member in attendance

Now I think it’s time to break out one of those cozy mysteries I’ve got lying around here somewhere.

 

“I’ll Follow You.”

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I arrived at the rehab center after dinner was over. I brought Mom a piece of pie. She was pleased, but only ate half of it. I guess they’re feeding her pretty well there.

I said, “Let’s go back to your room and chat a little bit.”

She said, “I’ll follow you.”

I laughed. “No, I’ll be pushing – I’ll be following you!”

Then a nearby aide told me that she’s been “walking” her chair around the hallways, building up her leg strength. Mom confirmed this, and also that she’d walked a little ways that afternoon with her walker.

I’ve been thinking they’d release her next week, but she may be home much sooner than that!

(I tried to embed a short video, but I either don’t have the skills or the proper permissions. Here’s the link.)

A Better Day

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Pie!

My after-work visit on Tuesday night found Mother much perkier and in better spirits. Dinner was over, the wheelchairs were lined up near the nursing station, but this time, she was awake and recognized me and asked where I wanted us to go so I could sit down.

I wheeled her back to her room and we chatted a few minutes via shouting and white board while she enjoyed the pie I had brought for her. She told me about the Valentine’s party they had had – “We had cookies!” – and demonstrated her leg exercises. I asked if they had been helping her practice walking. She said they hadn’t, so I pulled her walker out of the safety corner and got her to stand up and walk a few steps. She was visibly stronger than when she had left the hospital, so I conceded to myself that the PTs probably knew what they were doing. And the antibiotics were doing their job, too.

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Walker, tucked away until she’s safe to use it alone

My father-in-law made a very nice Get Well card. I tacked it up on her bedside bulletin board, along with a picture of her mother and a picture of her and us three kids all together.

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After she finished her pie, she said, “I’ll be glad when they say I can be discharged and go home!”

“I know, Mom. Me, too. Keep up your leg exercises and you’ll be home soon.”

I took her empty bowl and fork, gathered her laundry from the hamper, and told her I needed to go and get my own dinner.

“You’ll be back tomorrow?”

“Yes, Mom. I’ll see you tomorrow.”

“Okay. I love you. Tell Steve that I said ‘hello’ and I love him, too.”

“I will, Mom. I love you, too.”

Sorry, I Was Sick.

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Studies have shown that the stress from caregiving can weaken the immune system and cause illness in caregivers, sometimes leaving them in almost as bad a shape as those for whom they are caring. Given the support I receive from my husband and Mom’s PACE program, and the flexibility and understanding offered by my employer, I am generally able to maintain a healthy balance. The past week toppled me over.

Mom was admitted to the hospital through the ER on Monday night. After catching up a little on my sleep, I spent a good portion of my time at the hospital, except for a couple of afternoons I spent at work, trying to not let things get too stacked up.  She was released on Thursday for transfer to the rehab center. I transported her so we could get over there sooner, and arrived there around 5 pm, just in time for them to provide her a tray for dinner. I was there until 8 pm, when she went to bed. Since she kept asking me to pull her walker over in case she needed it in the night, I waited to leave until I had watched them set the bed alarm.

The next day, Friday, I took over her clothes (all labeled, including the hangers and hamper), before heading to work for the afternoon. I went back that evening, and found that she was already in bed. The aide said that she had only just lain down, so I sat on the side of her bed and we talked for almost an hour, about all kinds of things. I think it was the longest conversation we’ve had in over a decade.

On Saturday morning, I gathered up her gowns and slippers, which I had forgotten on Friday, and arrived after lunch was over. She was sitting in one of a row of wheelchairs near the nurses’ station, slumped over asleep. This is not unusual for her. She naps off and on all day when she’s at home, slumped over or nodding away on the couch, with the TV going. But it just looked so much sadder in the tile hallway, in a row with half a dozen other slumped sleepers. I put her gowns and slippers in her room and then woke her up and wheeled her down the hall for another chat. But Friday night’s must have used up all the chatting she had in her. We communicated with the white board for a few back-and-forths, and then she asked me to help her lie down for a nap. I remembered how to set the bed alarm.

And Sunday morning, I woke up coughing and feeling terrible. I had wanted to see her PT session that day, but decided coughing around sick, elderly people was probably not the best plan. I called to tell them, and to ask PT to call me, but they never did. I couldn’t call Mom, since she wouldn’t have heard the phone ring, anyway. If there is even a phone in her room. I don’t remember because there was no reason to look for it.

Today, the day I had hoped would be my first full day back at work, was instead spent napping and dosing myself with herbs, vitamins, elixirs, teas, and chicken soup. I had stopped coughing by mid-afternoon, and decided that I felt well enough to take Mom her Valentine present (a stuffed bear holding a heart) and, more importantly, a piece of pie.

When I arrived, she was already seated in the dining room with two table companions, waiting for dinner to be served. She was napping, so I patted her arm and she opened up her eyes long enough to smile and greet me pleasantly. She had no idea who I was. I bent over to speak very loudly in her ear, only to find that I could not do so. I guess I croaked loud enough for her to understand me, though, as she agreed that I was, indeed, Kay, before nodding off again.

She was very happy to have her pie after dinner. She thanked me politely for the Valentine bear, but I could tell it was not nearly the hit that the pie had been. We chatted a little via her whiteboard and she showed me a few of the leg exercises they had given her to do.

I wheeled her out by the nurses’ station and told her I would be back tomorrow. We said we loved each other, and good night. She never once asked about when she’d be coming home.

 

 

Not My Lunch

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It took me a little while this morning to gather up Mom’s clothes and put her name in all her shirts, pants, and hamper, plus label all the hangers. I got to the rehab center at lunchtime and found her sitting by the table, her lunch untouched.

“Mom, aren’t you going to eat your lunch?”

“That’s not my lunch. I told them it wasn’t but they left if here anyway.”

“Mom, it is your lunch.”

“No, it’s not. I haven’t ordered my lunch.”

“Mom. You don’t order your lunch here. It’s not a restaurant. They bring everyone the same lunch.”

“Well, I don’t want it. I didn’t order it.”

“Okay, Mom. I ordered it.”

“You ordered it?”

“Yes, I ordered it for you.”

“Well, if you ordered it, you can eat it. Tell them to wrap it up for you.”

Breakfast Conversation

Published on by Kay Shapiro1 Comment

Mom was admitted to the hospital late Monday evening with a UTI and the beginnings of sepsis. She is responding well to treatment and we expect her to come home today.

When I arrived at the hospital yesterday morning to help her with her breakfast, she was dozing. I woke her up, sat her up, and got her bed table set up so she could eat.

When it was all ready, she smiled up at me and then looked a little surprised.

“Are you Kay?”

“I am!”

“What are you doing here?”

“I’m here because you’re here.”

“Well, I’ve been here all day.”

“I know.”

“You always know where I am.”

“Yes, I do.”

 

Mother and the Dementia Paradigm Shift

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This post from four years ago on popped up on my Facebook feed this morning, so I thought I’d just leave it here.

Soapbox By Kay

tia-mri-scan Source: Journal of Clinical Neurology

(Please note: this is a lecture slide, not Mom’s scan.)



This past Tuesday, Mother and I headed over to USF for her first-ever MRI.  She did wonderfully, and they got very good images, which they then handed to us on a CD to carry to our later appointment at the Byrd Alzheimer’s Institute. After a nice lunch at Panera, we were able to make our noon appointment with Dr. Fargher with 10 minutes to spare.

While I waited in the lobby, Dr. Fargher escorted Mother back for an MMSE and evaluation. Afterward, it was my turn in the doctor’s office to talk about the results. Mother scored higher on the MMSE this time than she did when we visited two years ago. This does not usually happen. What made the biggest difference was one item that last time Mother didn’t even try, saying “I…

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“GOOD MORNING!”

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“GOOD MORNING!”

 

“GOOD MORNING!”

 

“What was that?”

“It’s your mom; she’s keeps yelling out ‘good morning’.”

I look at the clock. It’s 4:20 am. I sit up, swing my feet over to the side of the bed, and feel around for my slippers.

“GOOD MORNING!”

Gracie jumps up and starts dancing around as I get my robe and move toward the bedroom door. I’m up–it must be Doggie Breakfast Time! She is very disappointed when I pass by her kennel.

“GOOD MORNING!”

“MOM, WHY ARE YOU YELLING ‘GOOD MORNING’?”

“Good morning! I just woke up and so I got up.”

“BUT WHY ARE YOU YELLING ‘GOOD MORNING’?

“What? I can’t hear you.”

I grab the white board off the fridge and write: Why are you yelling ‘Good Morning’?

“I didn’t know I was yelling.”

“SINCE YOU’RE UP, PLEASE GO TO THE BATHROOM AND CHANGE YOUR DEPENDS.”

“I don’t need to go to the bathroom.”

“OKAY, BUT YOU NEED TO CHANGE YOUR DEPENDS.”

“I will in a little while.”

“YOU NEED TO CHANGE NOW.”

“I don’t want to.”

“DO YOU WANT ME TO HELP YOU?”

“Okay, okay. I’ll go change now.”

I call the PACE On-Call Nurse, and tell her about Mom’s odd behaviors over the past couple of days. We concur that she may have a UTI, which the nurse confirms is something they can check in the clinic after Mom arrives at the Adult Day Center.

No use trying to go back to sleep. I’m up for the day.

Good morning!

Tired

Published on by Kay ShapiroLeave a comment

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This morning’s coffee mug is one of two Valentine-themed cups I found last week in high cabinet and pulled out for use over the next couple of weeks. I have a tablecloth with hearts that I bought to use for Valentine’s, and a welcome sign for the front door with hearts on it, but the new tablecoth is still in the cabinet and the Christmas wreath is still hanging on the front door.

Because I’m tired.

I need 8 hours sleep to be a fully-functioning human, but I rarely get much more than 7, and sleeping in a little on the weekends (the bath lady comes at 9:30, on Saturdays) never quite catches me up. Mom’s alarm goes off at 6:30 every morning, and I’ve been setting mine for 6:00 so I can get finished with the dog circus and get her meds and coffee ready, just trying to be half a step ahead.

I used to get up when I heard her alarm, but now I have to already be in the front of the house to make sure she visits the bathroom and puts on new briefs before coming to the breakfast table. I can’t ask her for confirmation because she tells me she’s done it, whether she has or not. I never know if this is because all the bathroom visits from before have merged to create what seems like an always-recent memory, or if she’s just lying because she doesn’t want to delay getting her coffee and cookies. Could be either one. I can sometimes tell, but it’s just easier if I’m there to witness.

Mom goes to bed around 9 pm, and since I have to witness at least the beginning of her nighttime bathroom preparations to make sure she’s actually done them, I have to be nearby for that, too. If I forget, and she calls out that she’s ready for bed, I can never be sure that her “ready for bed” includes all the things that I think are required, but she feels are optional. What this also means is that I can never go to bed before she does, no matter how much I’d like to.

This week, I have done three loads of her laundry across the mornings, and her shirts and robes from the last load are still hanging in the laundry room. My personal laundry is two weeks behind.

And this is a jumbled mess of a blog post, but it’s all I’ve got for today. At least it’s almost the weekend, for what that’s worth.

 

Neighborly Care Network

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Mom’s birthday at Neighborly in 2014 – Can you spot her?

Mom is now a participant in the Suncoast PACE program, but for almost five years, we were very fortunate to be a part of the Neighborly Care Network. She attended their Adult Day Program from January 2011 through November 2015, and loved going every day.

Mom’s time at Dietert Center had broken the ice on her willingness to attend a day group, but after we moved to Oldsmar in late 2008, we had to start over. Oldsmar has a nice senior center, but it is more of a meeting place and clubhouse, with a calendar of activities for active retired folks. I tried taking Mom up there, but she’s always been pretty shy, and her dementia had by then robbed her of her ability to negotiate new situations and any real interest in doing so. She just sat in a chair by the door, waiting for me to get finished with whatever errand I was doing, with no curiosity about what was going on with the people around the room and no inclination to join in.

I had called Neighborly Care and talked to them about their program, but it took me awhile to find a regular job. Until I was working full-time, we didn’t have as much of a need for Mom to attend, but as soon as I had a job that kept me away from home all day, it quickly became apparent that she needed some outside source of social interaction and enrichment. And Neighborly Care was right there. A nurse and a social worker came to our home to do assessments to make sure she was right for their program. I took Mom over to visit and have lunch (she likes lunch) and meet the staff. They arranged from the van to pick her up one day a week, and then it became available for Mom to attend two and then three days each week.

We are grateful for the PACE program and all the services it offers, but I’m not sure Mom would even be here if we hadn’t had Neighborly Care all those years before.

Thank you, Neighborly Care Network!