Category Archives: Alzheimer’s Spouse Issue

Leaving Memories Behind Is Hard When Memory Itself Is In Short Supply

 

IMG_0125Ralph and I had one of our increasingly infrequent genuine conversations last night. He was sitting in the porch rocker as usual and I had come out to tell him that I had finally found the courage to warn Manuel that we’ll be moving and have to let him go in the next months. He has worked for us for over 20 years, first as a maintenance man at our apartment management business in Atlanta, then for ten years on the farm. Although we are not moving for awhile, I don’t want to wait until the last minute and leave him in the lurch. But letting him know we are going seems like a defining moment.

You know I’ve never lived anywhere in my life as long as we have out here, Ralph mused as I sat with him. This is going to be a life changing move.

Yes it is, I agreed and meant it.

It will be hard to give up this view. He gestured at the trees, the pasture, the pond. A leafy green and blue postcard picture of rural life.

Yes it willI agreed and meant it.

The truth is that lately I have been feeling like an observer as I go through the motions of handling the various details of our life. Not only watching over Ralph, stepping in to do actual care-giving as necessary—lately for instance, I’ve noticed his worrisome new tendency to skip showering and changing clothes, an issue I’ll explore more at some other time—but also as I go about my own life roaming real estate sites on the internet for a house to buy, going through closets to start winnowing out belongings we don’t need to move with us , focusing hard on what’s left of our business to be as financially ready to move as possible. Is that the same woman who just accepted an invitation to a party of new friends. Should she/I be bothering under the circumstances? But I do attend the party and enjoy my friends with if anything new intensity. because the idea of moving feels slightly unreal. Unreal, it occurs to me,  the same way Ralph’s diagnosis felt to me in the beginning. (I remember we were together in car on some trip, him at the wheel of course as he always used to be, and we began joking about a future when I would have to drive him. Was I at all aware how soon that day would come?)

Sitting on the porch with Ralph at sunset it was hard to imagine leaving. Were we really going to upend our current stability, static yet shaky as it may be?

Of course, Ralph said interrupting my thoughts, when I think about the farm these days I’m mostly remembering stuff I don’t do anymore. Duck hunting, raising cattle.

True. I agreed.

So I went into the house and got my phone.

What’s this? Ralph asked as I hit play on the video of him singing Alouette with BabyRalph.

What you get in exchange for giving up the view, I said.

Of course he doesn’t remember the conversation or the video this morning, but that’s okay. I was reminding myself at least as much as him.

 

 

Ralph–A Change of Perspective

Ralph and I just spent almost a week in New Orleans together babysitting while my daughter and son-in-law were away. With the change of scenery came a change of perspective.

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Here on the farm, life plods along. We get up in the morning and drink our first cups of coffee together and then we go about our days.  I have various deadlines, meetings, and activities at home and around town that keep me active so I’m not necessarily paying attention to how Ralph is filling or not filling his time. Of course I check with him regularly to make sure he is following his life list and of course he calls me repeatedly—whether over the phone or in person from the bedroom to the kitchen or over the phone from the bedroom to the kitchen—to ask whatever question has lodged in his brain for the day. And yes I am increasingly involved in getting him to do small activities (Did you take a shower? is one of my favorite nags and is about to go on the life list) and driving him to doctor appointments. But I don’t yet have to think about him minute to minute.

In New Orleans, we were much more in each other’s faces. While BabyRalph was in pre-pre-school, Ralph and I were alone in a house with an open floor plan where neither of us had space to escape to. Ralph wasn’t tucked away in an office or the bedroom. Ralph actually found the stairs to the bedroom too steep to climb more than absolutely necessary, a fact I have to note as I look for a house for us. He was either on the living room couch “reading” (mostly with his eyes closed) or on the back porch smoking. I was sitting in the kitchen trying to concentrate at my computer as he asked me repeated questions when he wasn’t sleeping.

And then there was the smoking. At home, although it drives me crazy that I can’t sit on my front porch anymore, I can almost ignore his smoking. In New Orleans I was responsible for a two-year-old who cried to be with his Bop. If I said, “Bop is outside,” BabyRalph said, “I want to go outside with Bop.” Of course I couldn’t let him outside with Ralph, or to play in his own backyard where the smoke from Ralph’s cigarettes hung paralyzed in the damp heat.  And each time Ralph came back inside, he had to, or at least had to be nagged to de-cigaretize (i.e., wash his hands, etc.,) before he could be around BabyRalph.

And he did love to be around BabyRalph. In the late afternoon for a few hours, Ralph and BabyRalph were inseparable. While they played, and that is what they did-play—I was free to clean up the house and get dinner ready. Ralph was fully engaged with BabyRalph in a way his own children never experienced him.  Of course, we are all more playful and relaxed with our grandchildren than we were with our kids. But there is definitely added-value in Ralph and BabyRalph’s case. Ralph was energized by BabyRalph because they share sense of presentness. BabyRalph has very little past to remember, while Ralph has very little memory of a lot of past.  And neither thinks about the future.

But I do. And what I have realized is that the biggest reason to move to New Orleans is not that we need to downsize or get and give family support but that Ralph needs to interact regularly with BabyRalph, oops now ToddlerRalph, as much as possible because those interactions bring him to life in a way nothing else does.

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.

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.