“Does It Get Easier or Harder?”

Accepting one's Alzheimer's, Alzheimer's and illness, Alzheimer's Spouse Issue, , , , , ,

Does it get easier or harder? asked my friend Jane, who writes the daily blog MemoryforTwo. Her husband is where Ralph used to be a few months, or is it years, ago.

Not having a memory is not so bad, Ralph said to me last night as he watched me wash the dinner dishes. (He doesn’t remember that a few years before his Alzheimer’s diagnosis, perhaps presciently, Ralph half-jokingly founded the Lower Expectations Society after therapy helped him realize his demanding nature worked against happiness. LES became his battle cry every time something went wrong.)

In a way it has become easier, in that I have accepted the reality. I answered Jane. But life keeps narrowing.

I remember when I was going through what Jane is now. The daily shock to my system with each change in Ralph I had to face and learn to accommodate. Who is this man? I’d ask myself.  How do I explain him to others? How do we go forward? It felt like being knocked down by one wave after another breaking against me. I’d stand up back up only to be knocked down again. Now the water is deeper; I am at the spot in the water where I can still stand but where the waves are not cresting. 

 Ralph is not typical. His diagnosis was six years ago. By now most people on the Alzheimer’s spectrum have moved further along from MCI deep into Alzheimer’s. Ralph’s slide has been so gradual that I feel boring when I describe our life now. The vise we’re in is tightening but slowly enough that we barely notice.

So acclimating has been dangerously easy. Ralph, originally so anxious and frightened by his memory loss, has been content for a long while. And as more and more memory holes appear, he becomes only more passive. What do I need to remember when I have you? he also said last night. I had a flash of anger; after all I was washing the dishes while he sat watching, just as he had sat watching me prepare dinner.  

But the truth is more complicated. As his short term memory worsens, I expect less from him. Our life together does narrow. But I am minding that less. In some ways Ralph is my excuse to relax into myself a little, to let go of some of the expectations that weigh me down with perpetual guilt–like why don’t I follow a stricter exercise routine or finish another novel. 

The truth is that I am getting more selfish daily. And I don’t mean that in a bad way.  I am typing from the turquoise chaise lounge in my new home office filled with books and pictures and a view of treetops and sky. I makes plans and decisions—how to decorate this new house, where to go with the family bubble for a covid-safe July 4 outing—according to my preferences. I cook dinners I want, and sometimes (this is a bit hard to admit) I keep a best bit for myself because I know Ralph is basically indifferent as long as he gets his nutty buddy for dessert. Of course he is always a major part of every equation: his safety, his personal comfort, his dogs’ comfort.  

I take what selfish joy I can for myself and give what comfort I can to Ralph. But I don’t bring up to him the truth I can’t get away from, a truth he has forgotten and I see no reason to remind him of–that his condition will get worse. And when it does, I don’t know how I’ll feel.

 

 

12 thoughts on ““Does It Get Easier or Harder?””

  1. I’ve been mulling this over for the last two days, Alice, not sure how to respond. Yes, Ralph’s condition will get worse and the worsening may continue slowly or speed up, especially if he gets any infections. Will it be harder or easier for you? I don’t know. Is it harder or easier than it was a year ago, two years ago? Or is it just different? On the comment you made about how to ‘explain him to others’ I was talking to someone recently about Dad and ‘explaining him to others’ and how adults tended to look, realise things weren’t quite right and look away. Children, on the other hand, looked, decided they’d found a kindred spirit and smiled at him. When he smiled back they moved on to talking to him – or somehow communicating. I admire your openness and honesty about your feelings because it’s important for others just starting out on this journey (I actually don’t like that ‘journey’ phrase but it is useful shorthand). I do find myself wondering how I’d cope if it was my spouse – very differently than when it was my father, I suspect. Or, if he has to cope with me. We were about to do our power of attorney paperwork when Covid-19 meant our solicitor closed his office.

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    1. I so appreciate how carefully you articulate not only your response to me, but your response to the situation. You are definitely correct about children vs adults. And you are spot on about a truth I had trouble verbalizing–that easy or hard is less the point than different. Not only does he change but I change too. I age for one thing. But also my interests shift, my emotions about the world at large change, my perspective evolves or devolves. Get that power of attorney sorted out asap.

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  3. You really have described my life and I’m so pleased I discovered you. As you say we are a little behind you on this road but it’s all still recognisable the only thing is sometimes I just want it to be over. The man I loved is long gone and he’s never coming back so this slow decline just seems to prolong the agony.

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    1. Yes, I feel all that you describe, especially the wanting it to be over. I think because we’ve been at this stage so long, it has become my norm and I don’t think as much about the past. I do think about the future, however, and with selfish dread about handling stuff I don’t want to handle..

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  4. WOW… this hits me at a time when my husband is showing signs that his dementia is growing worse. Today I told him “You NEED me!” He said “I agree with you 110%!” True words that are a double edged sword — he’s able to acknowledge his failing mind, and how I come to his rescue more and more, yet sad that I have to be there to rescue him. Strange feeling–I want the acknowledgement of how much I do for him yet feel sad that I’m in the position of HAVING to do for him. Easy? Nothing easy about dementia.

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  5. Thank you for sharing yours’ and Ralphs’ situation and relationship with such detail and honesty. You paint such a revealing picture. It shines a bright light on what being a care giver is all about.

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