Changing my Alzheimer’s Mantra

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.

12 thoughts on “Changing my Alzheimer’s Mantra

  1. I would say that my husband and I are somewhere between your stages 3 to 4. He is mild mannered and most days are ok. As much as I try to remind myself that he has an illness I still find I have to temper my frustration day to day (or sometimes moment to moment). Oddly enough I suffer more after he has a good period. When he lapses back or gets worse it cruelly reminds me of the only direction this disease moves in. Thank you so much for sharing like you do.

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    1. Yes, it’s funny how we get lulled when there is a pleasant moment and surprised all over again when the moment evaporates. And yet we want those moments. Thanks so much for sharing your experience….

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  2. Oh my goodness, apart from the hospitalization, you’ve just described the progression of my life from the lead up to diagnosis right through to now with the emotional distancing. I feel a little guilty about that distancing but it’s the only thing that gets me through from day to day and it seems I’m not on my own. Thank you so much for writing down your thoughts and feelings.

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    1. Thank you so much for this comment. In our daily minute to minute life as caretakers we certainly are alone, so it really helps to know others are having the same issues invisible to the most of the people around us (if there are people around us during covid). Sharing with those who understand really does make a difference

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  3. You have been so strong to have coped with all this for so long and you will continue to be strong and to cope and to adjust over and over. I always used to think we were running one step behind with Dad’s dementia. Just as we learned how to manage things, they changed and we had to learn all over again, never quite catching up.

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  4. I know exactly what you are talking about. It is so hard to maintain a good attitude and not be depressed. There is a lady in England who writes Memories for Two. She seems to have a good handle on changing her attitude and I am trying to emulate her. Good luck and hang in there. This is the loneliest journey ever.

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  5. There was a period of time I felt very angry at Mom, and that led to a lot of guilt. It’s a difficult illness to live with. I can understand the different phases you describe. Covid makes it hard to socialise the person with dementia.

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    1. While anger is sometimes hard to admit, because it feels unfair against a person who can’t help cognitive loss, anger is also healthy in certain situations. And then there is guilt, the caregiver’s frequent unwanted companion. Thanks so much for writing

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