Category Archives: Alzheimer’s spouse

TRUST and CAREGIVING

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Ralph and I are back into a routine after our rocky summer and landed on another plateau of what is normal. The changes I noted over the last months have set don’t bother me so much. And there has been a positive development. Ralph now plays music not only in his therapy sessions but also once a week with a neighbor our age who has been teaching himself the harmonica. The neighbor and his wife are newcomers to Nola and have become what I never expected Ralph and I to have again—couple friends. While our two husbands play music together, we two wives share a glass of wine around the corner. Having  witnessed Ralph get agitated at an unfortunate outing to a restaurant, the couple seem undaunted, particularly since we usually meet in our sun room where Ralph is much more at ease and therefor his most cognitively alert, charming self.  

So Ralph is happier these days, as am I. So I take more time to ponder the larger issues.  And what I find myself thinking about lately is trust. Trust in a marriage is always an issue. Trust as a caregiver spouse brings up another complexity altogether. 

In our pre Alzheimer’s marriage, we had a lot of problems but trust was not high on the list. We never cheated on each sexually. Even when we hated each other, we used up too much emotional energy in our relationship to have any left over for others. Our general modus operandi was to argue, sometimes with alarming openness. Several friends whose marriages fell apart after seeming much calmer than ours have said maybe being so openly angry at time saves Ralph and me. Maybe?  Ralph was nothing if not straight forward and vocal, sometimes loudly vocal, in his views, but I could be secretive, nursing grievances and fears I couldn’t bring myself to share. As we bickered our way toward making decisions together, I didn’t always trust his judgement and he often ignored mine. What I did trust in those days was Ralph’s competence. If he said he could fix the plumbing or make the business deal, I believed him.

Well now the parameters have changed.

Ralph really has no secrets—he says whatever pops into his head, loving or nasty—but he also has no judgement. I have had to teach myself not to trust him to do anything. I can’t ask him to chores because 1., he won’t remember that I asked and 2., if he does remember he’s likely to mix things up. His once amazing mechanical aptitude in shot, he can’t read directions, and he has no capacity to problem solve.

On the other hand, he trusts me completely, a trust I am not sure I deserve. He assumes I will do what is best for him. I try but trust is a burden. I make sure his daily needs are met, but sometimes I hide in another room when I know he’d like my company. Sometimes I say I am going to run an errand when I am actually having lunch with a friend, or even our daughter. 

And I no longer discuss with him any issue of substance, for instance tax issues, business decisions, or whether we may need to move to a different living situation in the next few years.  He has no idea that I have been looking into options and I have no plan to tell him until such a move in imminent. I know that closing to keep difficult problems from him is largely for his benefit and that discussing decisions would have no actual benefit. He has no capacity to think through or even follow and would only be upset. But I also feel a bit uncomfortable with power I suddenly can wield over his life.

Getting Back to the Old-New Alzheimer’s Normal

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So today is the first day in a little over three months that Ralph and I are back to something resembling what I used to call our new normal but I guess is now our old normal.

First I had hip surgery. For two weeks Ralph was thrust out of his bedroom and his routine. My caregiving kids made sure he had coffee, beer  and his pills daily, but he had to climb stairs for the first time in ages and he had to feed the dog every morning.  He also got to spend more time than usual with his grandchildren. He seemed to thrive.

Just days after  I was up and about, and our lives seemed back on track, Covid struck. The first week we had the the grandkids staying with us while their parents isolated. Then Ralph got sick. He was never dangerously ill but as I wrote about then, having Alzheimer’s made Covid that much more difficult. He was very weakened.

It took days after he was over the actual virus before he could be coaxed up for meals or to sit with the dog at least for short periods. And he was definitely mentally fuzzy, the same way he’d been after his illness two years ago. Then after only a few days of being upright he was back to bed stuffed up and red eyed. My daughter the NP said it was allergies, but fearing he’d had a Covid relapse (and petrified it could be some version of long Covid, which in combination with Alzheimer’s would promise a bad future for us all) I put my mask back on. Fortunately a Zyrtec/Flonase combo kicked in immediately. He tested negative

Unfortunately in a few days I started feeling ill, took a home test and was bright red ]positive. Ralph was still not wanting to get up. As soon as I saw the results, I cooked up a pot of soup, knowing the next few days would be rough. It’s one thing to care for someone sick, it’s another to feel ill yourself but have to care for someone. 

I am lucky because I never did get very sick, but I don’t think I was exactly what you’d call a loving caregiver. I made sure he had his pills and his meals—and his beer—but otherwise he was on his own. Not that he minded. I wasn’t nagging him to get up and about.

I have been out of isolation for two days now. And this morning Ralph went back to music therapy for the first time in close to a month. Last night he asked for a new book to read, again the first time in a month. 

So maybe we are returning to the old normal. 

But I can’t help thinking that ten years ago neither physical nor mental problems were on Rick’s radar, or mine. I had a busy social and creative life. Ralph was revelling in his life as Mr. Outdoorsman, mowing and caring for his cattle on a daily basis, going on fishing trips with his buddies every chance he got. As an empty nester couple we were actually getting along and planning—fantasizing as it turns out—all kinds of adventures.

That life, that normal, is not coming back. 

Post Script: Evacuation Return

Alzheimer's spouse, Caregiver/Spouse Issues, ,

Hurricane Ida did very minor damage to our home, blowing a turbine fan off the roof to create a small hole in the roof which we quickly fixed before the new rains came. And assuming we’d be back in a day or two, we had foolishly not cleaned out the fridge so it was a stinking disaster, but thanks to my daughter’s help it is clean and almost sweet smelling once again. In other words, I have nothing to complain about, especially compared to the suffering of others from this hurricane and from all the other covid and climate disasters the world is facing.

However, I inadvertently planted a red herring in my last post by mentioning the leak in my ceiling the day we left and then never telling what I found when we came home: A large chunk of my kitchen ceiling waiting for us on the kitchen floor.

Ralph had turned off the washing machine (but not the water heater as he thought, a mistake that didn’t matter in the end). The problem was that he didn’t notice that the hose that takes the water to the drain had come loose and disconnected from the drain. When my contractor Enrique–who has finished my renovation but now considers me his customer for life and actually contacted me during evacuation to see how we were– came by to assess hurricane damage, he not only took care of my roof but in five minutes reattached the hose securely. I spent the next day deep cleaning the kitchen, a strangely gratifying chore, and we’ll fix the ceiling once we know its all dried out. Of course, pre-Alzheimer’s Ralph would have figured out the problem before it got so bad, but I have to stop relying on that Ralph and start relying even more on myself (and, thank God, Enrique ).

Changing my Alzheimer’s Mantra

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If I’ve been in a funk lately (and really, who in the United States, hasn’t), it’s been partly because I’ve had trouble adjusting to what I have been in the habit of calling “the new normal”. I see signs of his cognitive deterioration— not only deeper memory gaps but the shuffle in his walk, his disinterest in showering, his more frequent vacant frown—but what also continues to deteriorate is our caregiver/caregivee spouse relationship.

I am beginning to perceive the stages of my Alzheimer’s caregiving in a new light as I look back at each new normal.

  1. Those months (years?) before the diagnosis when no one in the family wanted to takes his memory lapses seriously. How at first we teased and joked until it stopped being funny. How annoyed I’d get at him for not having paid attention to what I had just said. How sick I got of hearing him tell stories over and over. How angry it made me that every morning he worked up claiming no memory of screaming at me the night before for no good reason, certainly none he remembered.  
  2. My secret relief after his initial diagnosis that I hadn’t been imagining a problem. His heightened anxiety led to heavy smoking his doctors said to ignore for the time being. The diagnosis was all we could talk about. And it was still not something I was about to talk about with anyone but my most intimate friends. The future seemed scary but also unreal. Everything felt extreme, heightened. High anxiety but also high adrenaline rush.
  3. Ralph’s new calm once the meds kicked in and the adrenaline rush that had been carry us subsided. His cognitive changes slowed. The problem was mostly memory. Stories told and retold immediately, questions asked over and over, names forgotten, his difficulty following the plots on TV or at the movies, a withdrawal from conversations that only I noticed—all were issues that I struggled with but they did not interrupt the flow of my daily life. Or his, since he still enjoyed puttering and painting class and walk. We adjusted to the altered dynamic in our marriage. He happily/passively went along with decision I made. I still felt resentment but I learned to manage it. His mood and personality softened. Although small changes occurred I thought of our life as the new normal, an ever so slightly slanted plateau. And since five years passed in this state, with small ups and downs—like we were on the kiddies’ rollercoaster of Alzheimer’s—it was easy to become complacent.
  4. Late last fall, the roller coaster took a sharper angle, not so dramatically that I grabbed any handlebars, but enough that I knew my days of leaving Ralph alone more than a day or two were over. The list I kept for him to keep up with daily chores (take pills, feed dogs) grew to include more items (shower, eat lunch). He stopped watching TV. His smoking intensified. Our conversations were limited in private, but he was still charming around other people who found his lapses odd but almost endearing. He seemed sanguine about our coming move.
  5. Then came his hospitalization. Another adrenaline jolt. From his initial severe disorientation that I first assumed was a total slip into Alzheimer’s to the day he came home weak and dazed through four more weeks of daily treatment I wasn’t sure how much of his disconnect, let alone physical weakness, was the result of his infection. I surprised myself, how patient I could be. Once we moved, he grew daily stronger, his appetite improved (at least he wanted his nuttybuddies again). By then Covid quarantine was in place. His isolation and the general isolation everyone was experiencing converge.  And I was so busy with moving in, helping with my grandson, keeping up with editing clients who suddenly had time on their hands so were writing more, that I didn’t pay as much attention to Ralph as usual except when I asked him to do some small task, like taking out the garbage or moving boxes, that he then messed up to remind me each time that I should have known better.
  6. So, here we are, post adrenaline surges–while I share in the national trauma, the result is closer to malaise than adrenaline. My energy, like Ralph’s, has been drained over time.
  7. I suspect Ralph’s recent spurts of belligerence are partly in reaction to my emotional distance: Without that earlier adrenaline rush, I find it hard to generate genuine emotional interest in Ralph as he is, with so little we can share. Not only does a hard edge sometimes creep into my voice, but worse I can seldom generate more than a lukewarm, dutiful tone. Too often I think, why bother trying to explain what will immediately need to be explained again, why tell a joke?

But I also suspect he is also reacting to his own sense of his situation. The anger reared up when he went briefly off his anxiety medication. Now he’s back on a prescription, but he’s not back to the passive contentment that has served him well. I studied his face as he was eating dinner last night, the crease between his eyebrows, the grim set of his jaw, the vacant stare at his plate. He looked angry but was otherwise calm enough. As usual now, we ate in silence with NPR news in the background. He no longer articulates feelings he’s having, let alone thoughts or ideas and I no longer press him. And I am not finding it as easy to get used to the changes as I used to.

I’ve always told myself, Get used to the new normal. I’m dropping that refrain. It’s really just the for now normal. I I don’t think I’ll get used to, but I will adjust, and then adjust again.