A Mental Vacation from Memoryland

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You have probably noticed that haven’t posted for awhile. Several friends have emailed to make sure nothing is wrong.

All is well. Everything is fine and as normal as Memoryland gets. No crises. While the slow drip of slippage continues, a little more silence here, a little less appetite there, there have been no significant changes in Ralph’s cognition or his mood. At least none that I’ve noticed.

Really, the truth is I haven’t been paying as much attention to him as I usually do. I was about to add as maybe I should, but the truth is, he seems to be fine without my hovering. What I have been concentrating on instead is

  1. The practicalities of re-directing our lives as I look forward to a move: Dealing with realtors and financial advisors. Overseeing what’s left of our business. Considering needs like doctors and bank accounts that I need to re-order. Wondering how to pare down 40 years of a life to make it transportable to a smaller footprint.             At first I was too overwhelmed to think about, let alone write about, the plethora of business decisions I have to make (ie which of the properties Ralph bought at the end of his career–when his cognitive powers had already diminished–to sell, how to move quickly enough to find a new home if I sell the farm faster than I expect, how to move at all if the farm doesn’t sell in a reasonable time). But while I’m still anxious, I’ve begun to enjoy the challenge of fitting the pieces of our financial jigsaw puzzle into place.  I enjoy the number crunching and I definitely enjoy roaming through realtor.com to look at houses for sale…
  1. Myself. Yep, I admit it. I have been wrapped up my own life.  I’ve been working with a growing roster of clients in my new mini-career as an editor (work I can do as easily from Nola as from here), I’ve been traveling to see kids and grandkids. I have started a drawing class and can’t stop drawing whenever I have a free minute. I’ve been promoting my friend photographer MaryBeth Meehan outdoor outsized portrait project Seeing Newnan, which has the community buzzing. I’ve been writing on my own.

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Of course, I am getting Ralph to his doctor appointments. Keeping track of his meds and his food. Writing his daily life list that seems to be getting longer as I add more activities in danger of being forgotten if I’m not around to nag, like showering. I just have not been obsessing about him while I can afford not to. It’s almost as if I’ve set up a savings account with the energy I don’t need to expend now and may need to call on later. At least that’s what I tell myself when the guilt starts rising.

(losing) Memory and (losing interest in) Food

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My lunch today: a salted dark chocolate covered caramel. And it was just as delicious as it sounds. I am telling you this dirty secret (not that I eat that unhealthily every day, but the caramels were on sale at the store and called my name; plus it was my birthday) because I may not be the best judge of anyone else’s eating habits given that food looms so large in my life. I love taste and texture, salt and fat and sugar and acid. I eat for comfort and I eat for joy. I am as much gourmand as gourmet (and not a little obsessive about dieting as well). My favorite movie may be La Grande Bouffe, about a group of men who eat themselves to death. It’s one of Ralph’s favorites too.

In fact, I would say eating, along with arguing over politics, has been the activity we have most enjoyed sharing as a couple.

When we first met, Ralph was not terribly into food. He liked breakfast, mainly because it was cheap and fast. But he quickly converted. I was a restaurant reviewer for a while, and he loved going with me to restaurants. He loved the ambience of a fine dining establishment and of a funky, edgy dives. He loved experimenting with new flavors and spices. He also loved my cooking. And occasionally he loved to cook—there was a period when he got into soup making and took over making dinner for months on end.

I still love eating.

Ralph not so much.

We all know that in the late stages of Alzheimer’s, eating becomes difficult and eventually impossible. I dread that time and Ralph, thankfully, is nowhere near that incapacity. But day-by-day his eating routine has been evolving that mirror larger changes in Ralph.

He still claims to love my cooking. No matter what I put in front of him at the dinner table, he tells me it is delicious. Even sad leftovers mixed with canned soup. And he always eats his dinner. But he’s never what I’d call hungry. He never asks for a dollop more than what I put on his plate. He certainly never asks for seconds the way he used to every night. He always has a nuttybuddy ice-cream cone for dessert. Even if we have company and I’ve prepared a special dessert, he prefers his nuttybuddy.

This has been our dinner routine for a while. He also has cereal every morning for breakfast and a sandwich for lunch with a glass of milk. He has lost some weight over the last year or so because he doesn’t eat snacks anymore (unlike his spouse who may have put on the same number of pounds he’s lost), but if anything he looks fit and healthy.

The thing is I went away for one of my babysitting stints last week. Before I left I cooked chili and stew and bought a roast chicken. I divided meals into nightly portions I labeled. I filled out his life list in detail, telling which foods for which nights. He looked it over and we were all set.

Our friend R. came to stay with Ralph for the first few days I was gone. Then for the rest of the time I was away, I had arranged for another friend to “drop by” daily. One day she made him banana bread. The next she used up all the salad greens and pears etc. he wasn’t eating and made him a big salad. Every night when I asked him if he’d had dinner, he said yes he had eaten or he was about to look on the list and eat as instructed.

Nevertheless, when I got home all the chili and most of the stew I’d left was still there. So were the banana bread and the salad. And half the roast chicken. And some spaghetti R. had evidently cooked.

Ralph had found it easier to have a peanut butter sandwich for his supper than microwave a bowl or plate from the fridge.

This is not a big deal in the scheme of things. He remains healthy. He did eat. He can make a sandwich and he did heat and eat at least one bowl of stew. And I froze the leftovers to use another day. From now on, if I am gone I will be even more explicit on the life list and will verbally walk him through heating up his dinner every night.

But I feel sad. Ralph’s disinterest seems to be spreading slowly over our lives. I realize I can’t leave him as easily as I have in the past.  That he needs to be watched over, not because he can’t function but because he’s just not that interested.

 

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.