Tag Archives: Alzheimer’s Routine change

Care Giver of Care Partner?

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Gerontologist Elaine Eshbaugh’s recent post The Complicated Dynamics of the Care Partnership on her blog Welcome to Dementialand, offers a nuanced consideration of what she calls “the care partner relationship.”  I have been trying all week to get my head around the concept. I can’t say I’ve succeed, but Elaine’s piece sure has got me thinking about Ralph and my interactions.

To be honest, the first paragraphs, in which she described public advocacy by those with dementia as “the most exciting development in the field of dementia,” did not grab me. I’ve never been comfortable with the narrow focus of advocacy for specific diseases, including ones that have directly touched my life like heart disease and breast cancer, given the big existential issues like climate change no one is facing. And Ralph definitely has no interest in advocating or joining any kind of Alzheimer’s community, and the word dementia is not a term he embraces at all

But then Elaine wrote this:

 

In some circles, we are replacing the term “caregiver” with “care partner” to identify the partnership that develops between the person living with dementia and those who care for them.

Yes, it is a partnership. It is certainly a shared experience.

But being a person with dementia and a care partner are different roles.

 

I have to think about what I think about this change in nomenclature. Do I think of myself as a care partner? I am not sure. Marriage is supposed to be a partnership. Ralph and I are married. So yes I am his partner. But that is not what Elaine is talking about. Do I honestly feel like a partner? Frankly a lot of the time I feel most like a caring care manager.

But then again, last weekend we did have a moment of genuine care partnership, in the most literal sense.  Ralph recently had minor surgery ago to remove a squamous cell carcinoma on his arm and I have been in charge of changing the bandage daily. Because Ralph’s skin reacted badly to regular bandage and tape, I’ve had to apply the cotton bandaging with paper tape. Paper tape is a pain. I struggled getting it unspooled smoothly the first day while Ralph stood by patiently with his bare arm lifted until I finally got the tape on his skin. The next morning the damn tape was all stuck back together again. I dug at it with a scissor with little success. Then Ralph, whose natural ability for all things mechanical has been mostly dormant for four years, sprang into action and unspooled the tape in a neat single layer. After I applied the tape to his arm, I and was planning to use a q-tip stick to keep it unstuck.

“No,” Ralph said, “Just fold over the tip and it won’t stick.”

“Wow, why didn’t I think of that?”

He shrugged, matter of fact and clear-headed.

A nice small moment, but it would be dishonest to end here because it was the exception not the rule. Well, not exactly the exception. He will also bring me a cup of coffee in the morning if I ask him to. He will punch in my cell number on his phone so I can find mine. He will take the dishes to the counter by the sink. He will come with me to the dump. They are all small rituals that he will perform if I ask. What was different with the bandage is that he took the initiative to come up with a solution. That is the rare event for us.

But again, Elaine writes about partnership not in terms of equal but in terms of shared experience. And yes, living with a husband who is cognitively impaired is a shared experience. But it is mostly me sharing his experience. Ralph’s interest in my experience of the world is limited. Still, lately I have been trying to create more shared experience. I dragged him out for pizza last weekend and then for Mexican a few days later. Both times we had the same conversation.

“Do I have to go?”

“Yes. I don’t feel like cooking and I really think you’ll like it.”

Each time he did enjoy himself immensely.

I have also given him a new “job” to share. On several occasions in the last few months our dog Lola was caught crossing the busy road in front of our farm; so we (meaning me along with Ralph’s niece who was visiting at the time) decided to put in a newfangled GPS electric fence. Training the dog to know her limits is part of the process and requires once of those weird collars. I have added to Ralph’s daily life list changing the collar batter every morning when he wakes up, putting the collar on Lola before she goes outside, and taking it off every night before she goes to bed in her crate. I watch over the proceedings and make sure the jobs get done—it helps that Lola seems to love her collar and stands close to the counter waiting for it.

In terms of serious decision-making and even companionship, I still can’t say I feel in a partnership with Ralph. But even before his diagnosis, our marital partnership was a struggle because he liked being in charge and I had to fight to be heard; now it is a struggle because I am in charge and he is increasingly disengaged.

But these small acts of asking Ralph to share tasks and experiences have worked, up to a point. At least they give us a sense, however fleeting, of participating together in our life.

Stasis Defines this Alzheimer’s Marriage, At Least for Now

Stasis (from Greek στάσις “a standing still”) may refer to: A state of stability, in which all forces are equal and opposing, therefore they cancel out each other. Stasis (political history), as defined by Thucydides as a set of symptoms indicating an internal disturbance in both individuals and states.” From Wikipedia

Well Ralph and I definitely fit the definition, which I looked up after one of those small moments that clarify the big picture

 

knox toddlerWhile face-timing with me this morning, BabyRalph threw a little tantrum when my daughter wouldn’t let him hold the phone. As he kicked his legs, my daughter laughed, “He is becoming a toddler.” My emotional reaction was “Oh no, I want him to stay an adorable baby forever.” But of course, I also want him to grow up and am excited by every developmental step he takes. Just now, I had the odd and uncomfortable realization that my wishes for Ralph follow parallel lines, only maybe in reverse.

Ralph has maintained his cognitive abilities on about the same level for long while now, around five years. This plateau has been an incredibly lucky break for us. When I read and talk to other caregivers whose loved ones were diagnosed and then nosedived quickly, I marvel at Ralph and my good fortune.

We still live a mostly normal life, at least on the surface. If anything, Ralph’s routine has hardened and within its walls he functions very well. I keep his pillbox filled, his clothes clean, and his meals prepared just as if I were any wife (well any wife in the 1950s, although my housecleaning and disposition fail the Leave It to Beaver test). He spends most of his day in his “office,” even if all he does in the “office” is listen to the radio and talk to his dogs. So I have plenty of free time to carry on my life. We eat dinner together watching Jeopardy and then he goes to bed.

This is not a hard life. Yes there is the underlying stress of his shot memory and his general cognitive decline, the loss of his curiosity and engagement with the world beyond our mailbox. But really, life could be so much harder. Living with Ralph is now like living with a child who is not going to grow up. Whose developmental steps if he takes any will be backward, toward a kind of funhouse version of babyhood.

As much as I want BabyRalph to stay my snuggly grandbaby, it is fun to imagine him big enough to pull that rake in the picture above. I cannot and don’t want to imagine Ralph’s future. And yet I also have to admit an ugly truth. I imagine what my life will be like when Ralph’s cognitive abilities deteriorate with horror but also sometimes with a kind of relief. The urge to get out of the stasis–which in the case of Alzheimer’s includes both standing still and inner disturbance–is real, even when I know the escape will be to a much darker, harder place.

Alzheimer’s By Phone and Life List

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Me: Hey, just checking in

Ralph: Hey, how is everyone.

Me: Fine. We’re all fine. R is working. J is away, remember. That’s why I’m here.

Ralph: Oh that’s right. I forgot.

Me: So what are you doing?

Ralph: Not much

Me: Did you take your pills?

Ralph: Yep I checked them off the life list. Today is Thursday right.

Me: It’s Friday.

Ralph: Oh Right. Well I’ll take them right now.

Pause while he goes to pillbox.

Ralph: I took them and checked them off.

Me: Great. Did you eat dinner (or lunch or breakfast)?

Ralph: Yep

Me: What did you eat.

Ralph: Whatever was on my Life List. How is everyone?

Me: Fine. BabyRalph is asleep

Ralph: How old is BabyRalph now?

Me: One. Remember we came to the birthday last week.

Ralph: Right, right. I forgot. How is everyone?

 

This is more or less the conversation I have three times a day when I am away from home and I have been away a lot lately, on the road between Ralph and BabyRalph, mixing up husband and grandbaby care. I also have a me-time weekend with college friends and a two-day family reunion coming up in the next six weeks. So that’s a lot of travelling and a lot of leaving Ralph at home.

 

I have mixed feelings of course. Travelling to be a NanaNanny is tiring but wonderful. At the reunion I get to take my son as my plus one since Ralph doesn’t travel. My friends and I have already planned every minute of our us-time weekend with restaurants and shopping and even some culture thrown in. l want to go on these trips and I feel guilty about going—but mostly guilty for not feeling more guilty.

 

Because the truth is that Ralph seems to thrive when I’m gone. He loves what he calls his Life List of activities and events to check off once accomplished. He takes his pills, he eats his meals that I have left, he sees the people who’ve arranged to visit. And he can see he has done so. The Life List works much better when I am not home. Ralph loves to check off his accomplishments. He has a sense of being in control of his life. But when I’m home that same checking off has the oppressive and demeaning effect of too much overseeing. He prefers the more passive activity of glancing twenty times a day at the calendar when I am home.

 

Of course, when I say thriving, “seems” is the operative word. Because when I’m gone, my impression of Ralph is based on phone calls. In the numerous phone calls each day he “seems” really pretty happy. And pretty cognitively together. He makes funny jokes and is more engaged in conversation than he ever is when we are sitting in the same room. If I ask a question he has a ready answer. He asks me questions about what I am doing that he never asks when we are together. We actually have fun, especially when I put him on speakerphone with BabyRalph (no face time with Ralph’s flip phone) and he can hear baby babbling and I explain what BabyRalph is doing. He is engaged.

 

Or maybe I am kidding myself to feel better about travelling. After all, I know that when he talks to other people, they find him equally engaging although as soon as he hangs up, he has no memory of what they talked about or often even than they talked. Yet, in the moment he seems engaged. Or maybe he is engaged.

 

In any case, I do know Ralph doesn’t mind getting to sit on the porch with the dogs listening to the news and smoking—or sitting with them in the car as he’s been doing during cold weather—without my nagging him to come inside. I suspect he prefers the simple premade dinners to my salad and chicken dinners and that he sneaks in extra nutty buddies for dessert.

 

And when I get home tomorrow he’ll say he’s glad to have me back before returning to his nap or the porch as if I’d never been away.

From Memoryland to Grandbabyland: Part One

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If I have been absent lately, I have a good excuse: My daughter gave birth to her first child, a baby boy she named after Ralph. BabyRalph is as adorable as every newborn—in other words his parents and grandparents find him an absolutely perfect specimen of infancy and expect everyone we send pictures to agree with us, whatever they really think.

The plan has always been that

1), Ralph and I would drive down to New Orleans once my daughter went into labor and stay for a few days after the birth before I drove Ralph home

2), I would then return to help out on and off as long as needed, having arranged plenty of back up help for him.

Needless to say I was nervous about both parts of the plan.

For one thing, Ralph was less than enthusiastic about going to New Orleans at all. He said babies scared him, and I believed him. He was always more a dog person that a small child person. While he was present as the births of our two kids, he is a proud member of the late sixties generation of macho activist guys that spouted feminism but didn’t actually live it. I’m sure he must have changed some diapers; I just don’t remember when.

As my daughter’s due date approached (and then passed), we all became more and more anxious. Ralph too. His concerns shifted from himself to the upcoming birth and all that could go wrong. He stopped worrying about his own travel. He started calling to check in on my daughter and son-in-law (Flyfisherman) nightly. When are we going down again? Do you know when she’s go into labor? became his new mantra, which he repeated throughout the day several times an hour. When the call finally came that labor had begun, he willingly got in the car, and he barely complained on the six-hour drive.

Once in New Orleans, things got a little trickier. Ralph does not like changing his routine and likes excitement even less. Fortunately the small AirBnB we rented had a little patio where he could smoke. Since labor was going slow and we were asked to stay away until BabyRalph’s actual arrival, Ralph stayed on that patio a lot while I picked up the other grandmother at the airport and BabyRalph’s twelve-year-old half-sister K from school. Fortunately Ralph also napped since we were not summoned to the hospital to meet BabyRalph until late that night.

On that first visit and again the next day, while Baby Ralph’s two grandmothers and an ecstatic K vied for turns to hold him in the little rocking chair the hospital provided, Ralph held back. He would not hold the baby and would only look at him from the small sofa across the room, not up close. The next day was the same until I sat on the sofa with the baby so someone could take a picture of the three of us together. Ralph looked at the baby. Ralph squinched closer. Ralph decided maybe, just maybe he’d try holding the baby.

Ralph took his namesake in his arms. Ralph began talking to BabyRalph. Ralph began singing Dylan songs to BabyRalph.  My daughter,  DaddysGirl, may have teared up a little. I might have too. We all snapped pictures of BabyRalph.Ralph held BabyRalph and held him some more, until it was time for a diaper change. It was a magical moment.

But it was only a moment. Ralph did not show interest in holding the baby again over the next two days before I drove him back to the farm where he greeted the dogs with great joy and relief.

Part One of the Plan was a success.

Part Two…. I’ll let you know soon enough.