Category Archives: Alzheimer caregiving

More on the Terminology of CARE

 

care         In a comment after my last post, my always astute (and caring) friend Mary Smith  wrote that the word “carer” is used in England instead of caregiver. I looked at the word on the screen and had an aha moment of Yes, that’s exactly who I am.

But then she added  “there is a movement against it, saying it is a patronising way of describing the relationship between the individuals involved.” Damn it.! I thought, bemused to say the least.

Language is such a tricky business these days. I don’t care about the “movement” or if I am being regressive. I love the term carer for the layers and nuance it holds. Getting rid of giver or partner, we are left with that fascinating, almost self-contradictory word care.

There is the the noun. Care as worry. The cares we carry with us daily. And must surmount. Actually the first definition that came up just now in my Webster’s Third (a wedding present way back when) for the  noun care is  “suffering of mind.” Wow. Forget those who may or may not be suffering duress from  mental or neurological problem; suffering of mind sums up almost everyone I know who follows the news these days.

To care about someone or something means that person or thing or issue matters. Is important to the carer.

To care for can be physical and practical. That’s the meaning caregiver implies, at least to me. It is how I feel about myself sometimes when I have done a good job of maintaining a steady comfort level for Ralph and me. Also when I am exhausted after managing issues in Ralph’s life I don’t want to or when I am struggling not to react to him with impatience or annoyance (more often than I want to admit).

To care for someone can mean to take care of,  but it can also mean to feel affection, whether that affection is polite and somewhat distant or a bit more intense and romantic (like my adolescent Victorian novel fantasies of a handsome man taking my hand in the moonlight to announce softly, “I have grown to care for you my dearest, very deeply.”

A carer has cares. A carer cares for and about others whom he/she may also take care of.

So basically CARER  pretty much sums up Ralph and me and our situation–the good, the problematic and the bittersweet.

 

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.

TAKING THINGS IN HAND

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So big confession: I have been in a great mood lately.

Is that allowed? I ask.

YES! I answer (except I can’t help that little gulp of uncertainty. Is someone whose spouse has a degenerative neurological condition allowed to be happy?)

Nothing dramatic has changed in our present to make me happier. Ralph seems pretty much the same although he now needs his written schedule of reminders in a way he didn’t a few months ago and I’m including more details. His energy also remains about the same, i.e. low. A glitch in the Emory study has held up his supply of experimental Ritalin but I haven’t noticed any drop—in retrospect I realize that the slight uptake I’d noticed before Christmas was more situational than medical and disappeared once he was home and back in his routine.

The change is in my focus. Facing that we were not going to end up in Apalachicola seems to have opened a door for me. The future may not be the one I planned, but it is lying out there for me to shape. There is a relief in acknowledging what I have to let go. So Ralph and I will not be travelling together (but really he never liked to travel to the same places I did) or going to movies together (see previous parenthesis). And yes, I will be making all decisions about our finances and health and homes and meals for that matter. And yes his location on the Alzheimer’s continuum will slide downward and there will be difficult choices to make. I see the clock ticking.

But taking things in hand has energized me.

I have made some decisions involving our rental properties, our main source of income, including renovations Ralph might not have done but are necessary for our millennial tenants who demand more than the hippies, slackers and gen-xers who used to rent from us.

More important, I have decided about our living situation. I have told Ralph we are moving to Nola in two years. Actually I have told him daily.

Conversation #1:

“In two years I’ll be too old to live isolated out here. The driving will be too difficult. I think we should move to Nola.”

“I don’t want to move to Nola. What about the dogs.”

“We’ll have a yard for the dogs. And think how much you’ll enjoy hanging out with BabyRalph.”

“Maybe.”

Conversation #2:

“So in two years, when we move to Nola…”

“Why would we want to do that?”

“In two years I’ll be too old to live isolated out and doing all the driving will be too difficult.”

“I don’t want to move to Nola. What about the dogs.”

“We’ll have a yard for the dogs. And think how much you’ll enjoy hanging out with BabyRalph.”

“Well, I guess.”

Conversation #3,4,5,6…

“So in two years, when we move to Nola…”

“Why would we want to do that?”

“In two years I’ll be too old to live here isolated and…

 

A real estate agent is coming by Monday to discuss a sales strategy for the farm (not an easy sell). Dreading having Ralph present and running off the agent in some of the ways he has run off various servicemen, I screwed up my courage this morning and told him about the meeting because I’m not ready to not tell.

“Do you want to be there?”

“Not really. You can take notes can’t you?”

So basically, Ralph has more or less acquiesced. I am left to handle the details (and keep reminding him the plan). The thought of moving and all it will take is daunting. But also exhilarating. So yes, I have been on Zillow quite a bit. But ironically, I’ve also found new enthusiasm for my life now. I have more going on in my professional life than in several years. And I’ve started drawing lessons and am sitting in front of pad and pencils instead of the television. I’m even dieting, sort of. Is this joy or an attack of mania, I’m not sure, but I don’t feel manic anxiety.

I know things will get more complicated. I know I am in for sorrow. But right now Ralph and I are traveling more or less together. I don’t mind being his navigator, car mechanic and chauffeur because I still have the luxury of being able to pursue my own interests.  As for Ralph, he’s willing, and less unhappy than I’d expected, to come along for the ride as long as he doesn’t have to drive.

Closing Another Chapter

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Last week I finally made time to check the extent of damage to our hideaway in Apalachicola from Hurricane Michael back in October.

I’ve probably described “The Dollhouse” before, a small garage apartment on a large bay front lot with no house but a gazebo on the lawn and a sturdy fishing dock—so sturdy that it is one of the only docks in town still standing and useable. There’s no house because when Ralph bought the place, he decided he didn’t like the house so sold it for pennies, maybe $1000, to a buyer who transported the house ten miles down the road (I don’t know if it survived the hurricane and don’t have the heart to check). The lot itself had a high price tag when we bought it, against my wishes; he was adamant and in those days it was difficult to win an argument against him, but I now suspect Ralph’s cognitive abilities were already compromised or he would not have insisted on such a blatantly bad deal. Then again, it was 2007 when a lot of stupid investments were being made.

It was a terrible business decision but I grew to love the place. The stairway is long and steep, the rooms are tiny and there’s no central HVAC or Internet. The garage was built in the 1940s and we renovated by returning it as close to what it was originally as we could, complete with a red Formica kitchen counter. Everyone who has visited has fallen in love with the gemutlichkeit/fen shui. Ralph and I figured we’d end up spending more and more time there once we retired, him fishing, me becoming part of the artsy funky community.

I knew two trees fell on and through the roof in October because the contractor who agreed to handle repairs as soon as possible which was not going to be soon, and tarped the roof in the meantime, sent pictures. I kept putting off visiting, though, in part because I figured the locals had enough problems of their own and didn’t need a part resident gumming up the works, in part because I was afraid what I’d find, in part because I couldn’t find the free days. But last week, after a little problem since solved with Apalachicola sewage backing up onto the property, I realized I had to see things for myself.

I went without Ralph because he told me “I don’t think I feel like going.” Frankly, the idea of staying by myself for a night didn’t sound too bad.

And it wasn’t. The town seemed to be doing business pretty much as usual. There were signs of (re)construction everywhere. The shabby chic bed and breakfast where I stayed served late afternoon wine and cheese as well as breakfast. I met with my contractor, walked the property and loaded my car with paintings, linens, sentimentally important knickknacks and Ralph’s fishing journal. I walked around town sipping café con leche from my favorite coffee shop.

I also talked several times with a realtor I trust. She told me the property was worth a fraction of what we paid, but that if I could hold it another ten years, the value would probably rise.

I drove home admitting the reality that I already knew but hadn’t quite faced: The future we’d envisioned involving Apalachicola is not going to happen. Ralph and I are not going to be visiting, let alone retiring to Apalachicola. Once the apartment is livable, I will rent it full time to cover the taxes if nothing else.

I was filling pretty sad by the time I got home.

Ralph was on the porch smoking.

“How was New Orleans?”

“I was in Apalachicola.”

“Oh that’s right. I forgot,” he smiled.

When I explained the situation, he was not perturbed. He was not particularly interested at all. Basically he doesn’t care that he may never visit again. No, before I rent the apartment out I’m going to drag him down there for one farewell reunion visit with our fishing friends from Nashville.

And then I’m going to start discussing with him my plans for the farm, or rather my plans for our leaving it behind too.

Making Change in Dollars and Sense

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Today I sent Ralph on an errand. That’s right, I sent him off to perform a task without me there to oversee him. I gave him a twenty dollar bill and asked him to go to the gas station down the road, buy “something,” ie cigarettes, and bring me a five and 3 singles back with the change.

Asking Ralph to perform tasks is not something I do a lot obviously. He used to handle all the manual chores that required any skill. He did electrical, plumbing, carpentry, auto repair, you name it. He wouldn’t let me hang a picture because he didn’t think I could meet his critical standards. What he never did was run errands. He was not one to go out of his way on the way home from work to pick up milk, or a kid from school for that matter.

Now he is more than willing to do whatever I ask. Willing just not capable.

So my request was an experiment of sort. He still drives to the gas station daily for his cigarettes so getting there and back was not an issue. And willingness clearly was no problem; he offered to leave that minute. But remembering to bring me what I ask for…there we’ve had problems in the past. Even if I call him while he’s at the store or he calls me from the store to double check, he’s still likely to come home empty-handed. In the past he’s resisted taking written reminders but lately he’s become more dependent on his daily written life list.

So I wrote down a note, bring me change for this twenty.

He read the note. I reminded him I needed to end up with 8 dollars and he could keep the rest for his own use (I usually make sure he has about twenty dollars in his wallet at all times.) He looked with worry at the note again.

I took it back and wrote a new note. Bring me three 1$ bills and, one 5$ bill.

He read the note and nodded. I turned back to the stove as he put on his coat and started to the door. He stopped.

I can’t remember where I put the note or the twenty dollar bill.

He patted his jacket pockets. I checked his wallet. No note. I was about to write a new own when I saw a corner of the note poking up from the breast pocket of his shirt. I put note and cash in his wallet. He couldn’t buy his cigarettes without  seeing the note—well, unless he used his credit card, his usual payment method.

I sent him off with misgivings but fifteen minutes he was back. With 3 singles and a 5.He was casual as he handed over the bills, but I could sense he was feeling the same buzz of thrill and relief I was at a job well done.

Success is measured differently these days.

CHRISTMAS 2018: ALICE LESS IN CHARGE AND RALPH MORE ENGAGED (MAYBE)

 

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I admit I was sad not to have our traditional farm Christmas, mainly because I had no excuse to decorate the house with kitschy abandon (although a few, maybe 20, Santa Clauses did show up on shelves and mantles). But gathering with extended family in New Orleans proved much easier.

We stayed with our college age grandkids and our son in a rented duplex literally across the street from my daughter’s house, where she was in charge of festivities. Ralph and I both enjoyed ourselves, albeit separately and differently. While I was busy helping with preparations and messing around with five grandkids from almost two to almost 22, Ralph spent a lot of time smoking on the porch, either at my daughter’s house or the rental, while I could keep an eye him through my daughter’s front window. Therefore when he left the rental porch and headed down the street our first sunny afternoon, I was there to stop him.

“I’m just walking around the corner to buy cigarettes.”

“Not a good idea to go off in New Orleans by yourself.”

“I know the way there.”

He did know the way there: walk to the corner, take a right and keep straight two blocks until he got to the store. It was the way back, past those two blocks with corners that looked just like ours that be the problem. I sent my son to walk with him.

I sighed with relief and became more vigilant. I also made sure he was stocked with cigarettes. There were no more blips (well, except for a little one Christmas afternoon when we had to convince him that the store was closed).

As the holiday drew to a close, both my son and daughter commented that Ralph seemed much better than he had seemed at Thanksgiving. I had to admit I wasn’t sure I’d noticed.

It makes me nervous when anyone, but especially one of our kids, comments that Ralph seems better. No, I don’t get nervous; I get defensive.  Why do they think they can see something I’m missing?

So why did the kids see him as improved?

Well, for one thing they found him frighteningly disengaged at Thanksgiving. And they may be right. That holiday is a blur of houseguests, of cooking, cleaning, entertaining and babysitting while fighting off the remnants of congestion and cough. And given that Ralph was coming down with the cold that put him in bed for days once everyone left, he probably was more disengaged than I noticed–I do have a lingering image of Thanksgiving night, most of us gathered in a relaxed conversational circle in the living room and Ralph sitting alone just feet away in the television alcove bundled in outdoor wear staring at nothing.

Second, while I was focused on how much he slept and whether he drank too much beer at Christmas, they found him more engaged because around them he was. While all of us, Ralph in particular, could move easily back and forth across the narrow street between houses, our separate living space offered Ralph privacy both to nap whenever he wanted and to take the time he needed with his slow wake up rituals before walking over to my daughter’s house to offer everyone with some grandfatherly attention. Because he slept so much during the day, while the kids and grandkids were out exploring the neighborhood, in the evening he was rested enough to participate.

And third, by Christmas Ralph was back on his study meds, which he’d stopped taking a week of so before Thanksgiving due to scheduling issues. The study is on the value of ADHD drugs in treating apathy in those on the Alzheimer’s spectrum, and I didn’t think those little red pills were working, but now I wonder. Or maybe it was just the combination of good weather, good company, and an undemanding change of scenery. As we were packing up to leave, Ralph said how much he liked visiting New Orleans.

“Well, maybe you could start visiting more often with me.” I was thinking ahead to Mardi Gras when I plan to help grandbaby sit.

“I’d like that.” He nodded with what seemed like enthusiasm.

Now we’re home. He’s back in his mostly undemanding routine. When I brought up going back down to Nola, he looked at me askance.

“I don’t think so.”

“But you had such a good time at Christmas.”

“It was okay,” he shrugged. “But I have no interest in going again.”

The Case of the Missing Car Keys: A Clash of Memories

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It’s the unacknowledgement of a reality that is constantly hitting us, as spouses, in the face, but for which reasonable, constructive dialogue is either ineffective or impossible any more. Quite draining, and erodes the bond we knew and loved with our spouses.”–Jabberwalky08, responding to my last post, expresses the predicament of the spouse caregiver beautifully.

 

So Ralph’s car keys are missing. Actually he couldn’t find them the morning after his evening of too many beers, but I didn’t think too much about it when I wrote last because I assumed they’d show up. They haven’t

That first morning I’d already left the house when Ralph discovered he couldn’t find his keys. I told him where the extra set was and he seemed mollified. But that afternoon when he still had not found them, he was upset.

You don’t remember where you put them when you got them out of my car?” Ralph asked as I helped him look. His tone was level and very polite, as if he was trying to avoid embarrassing me.

But I didn’t get them out of your car.”

Ok, but if you had where would you put them?

I would hang them on the key hook with the other key.”

That doesn’t make sense since you’d want to hide themfrom me.”

But I didn’t want to hide them, because I didn’t get them out of the car.

I remember you getting them out of the car. You were afraid I’d drive inebriated.”

No, I had not reason to be afraid because you went straight to lie down. Anyway, I was holding raw chicken breasts when you came in the house. Don’t you remember?” Stupid question to ask, I know.

I remember you getting the keys.”

I didn’t get your keys.”

But if you did, where would you hide them.”

Are you getting bored and frustrated yet?

This conversation, or a longer version, was held and repeated in several variations every time we were together. Ralph always remained remarkably calm, probably because he didn’t remember asking or answering the same questions two minutes ago. I became increasingly annoyed. “Which one of us has memory issues?” I blurted out at one point.

I have learned over time that what is remembered by someone with cognitive impairment can be just as problematic as what is forgotten. But now we were on a new level of looping memory.  We’d become a microcosm of what pundits are so busy discussing about facts, alternative facts, news and fake news. I knew I had not been out to Ralph’s car, taken his keys and hidden them. But he knew I had.

Ralph can be very convincing when he believes something, and his certainty was stronger than mine. After all, I have the niggling awareness that there have been enough occasions when I have done something similar—hiding beer cans for instance on a daily basis. I didn’t take the keys this time, but I could have and might in the future.

So I began to question myself. Could I have done something with his keys and forgottenWas my memory going. 

NO, I really couldn’t have and didn’t. And NO, my memory is not less trustworthy than Ralph’s

BUT there was no reconciling my sense of reality and Ralph’s and no arguing to a comfortable conclusion.

It would have been a darkly depressing state of affairs except that in saying I’d taken his keys, Ralph was also acknowledging that he’d drunk too much–that the drinking caused the loss of the keys, whether by his hand or mine. That knowledge has made him more willing, at least for now, to follow my rules and schedule. Last night as he headed to the porch, I nagged him to make a check on his life list to account for the beer he was holding. He merely shrugged, but a minute later he came back inside.

Thanks for  working so hard to keep me alive.”

I was speechless. For a moment we were living in the same reality. Then, lulled into thinking we could chat, I mentioned that our older grandchildren were arriving on Thursday.

Why are they coming?”

“Christmas.”

“Is it Christmas? Oh so is everyone coming for Christmas?”

“No, we’re all going to New Orleans on Friday.”

“We are? Oh, I forgot.”

It has been twenty-four hours since Ralph has mentioned the missing keys; that’s good news but the bad news may be that he’s forgotten he lost them. And because we live on different planes of communication, I can’t bring myself to ask him.