AM I TOO TOUGH ON RALPH, OR NOT TOUGH ENOUGH?–THE MCI/ALZHEIMER’S BALANCING ACT

dirty dishesRalph has been skipping the last item on his daily lifelist: putting Lola in her kennel bed before he goes to bed at night.Obviously this is a small issue and I am capable of putting her to bed instead. But I don’t want to. For one thing, I like not having to do it myself, like being off duty all together for an hour or two before I go to bed. More important, I like the idea that Ralph contributes, however small the gesture, to the practicalities of our life together.

The thing is, maybe I need to face that Ralph is no longer capable of remembering to put the dog to bed at night. Maybe his cognitive energy is used up by seven pm and I should not nag him the way I do now (and yes, sometimes if he’s still awake reading in bed, I make him get out and see to Lola).  And this realization makes me re-considering what I should be expecting from Ralph.

Never mind big tasks like running the tractor—our tractor crisis two years ago will never reoccur because Ralph avoids messing with the tractor at all now; thank goodness I have found someone who not only runs it but also can maintain it.  As for medium tasks, like changing light bulbs, I don’t expect Ralph to carry them out any more although once in a while he’ll surprise me like the other day when he was able to attach the propane tank thing to the grill (although he couldn’t remember how to turn on the grill itself).

It’s the small tasks that I’ve been counting on for normalcy. But can I really? It is not that Ralph is unwilling. If anything, he is more willing to than he was in his prime when he downright refused to pitch in any time he found it inconvenient. Now if I ask him to take a turn making coffee, he agrees. If I ask him to help bring in groceries, he agrees. If I ask him to help clear the dishes he agrees. He is happy to help.

But, and it is a big BUT, his ability to follow through can be haphazard. He’ll agree but immediately forget and I’ll be annoyed. While counting to ten I debate in my head whether to nag him or let it pass. Or he’ll agree but do the job halfway. Or look at me with a forlorn expression. The other day when I asked him to unpack his small suitcase after a weekend trip to visit friends (a trip he enjoyed immensely although I dragged him there against his wishes), he gave me that look Unpack a suitcase? Put my socks in the sock drawer? I quickly backed off but he caught my look back and asked outright, “What, you don’t think I can unpack?” “Of course you can.” So he unpacked. But none of the clothes ended up where they belong.

Again, not a big deal. And not that he doesn’t ever follow through, not that he doesn’t sometimes surprise me with his competence, the same way he sometimes surprises me by remembering a conversation I assume he’s forgotten. But there are so many other examples of disappointment. So many times I get annoyed because he doesn’t follow through. So many times I wonder Should I trust him even to try a task he seems reluctant to try? Is he unwilling or unable? So many times I wonder Am I being too tough? Am I being too coddling?

Of course, I am being both and neither. I never seem to calibrate the right balance because there isn’t one. Although Ralph appears more capable and competent some days than others, I have to face that his brain is going through its own climate change, a melting away sometimes indecipherable but undeniable. 

 

 

 

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.

(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.