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I remember when I bridled at the interchangeable use of Dementia and Alzheimer’s. This was back when Ralph’s diagnosis was MCI, Mild Cognitive Impairment, or may even slipping over in Mild Alzheimer’s. I clung to narrow definitions back then. The plaque build up his tests showed signified Alzheimer’s and served as my point of gravity. I could tell people, i.e. myself, that he had a specific physiological condition. I did not want him lumped into the big vague world of dementia. No, really, I did not want to think of him as “demented” as in the pejorative taunt “You are so demented.”
Now the boundaries between definitions matter less and less. While repetitive questions and conversations are annoying, Ralph’s memory loss feels routine except when a visitor comments and I recognize the behavior afresh through her eyes. As an echo to Ralph, or a habit I’ve picked up from him, I think I also repeat myself more.
As for Ralph’s general behavior, his passive has inertia has become, like the radio he listens to all day, the background noise of my own more active life. I come and go, I clean and cook, I talk on the phone and escape to my office, I mess with the grandkids. He sits and watches. We spend large swaths of time together in near silence.
I find I don’t really want more from him: I find most of our longer conversations, which occur while he watches me prepare his meals, deadening. He usually wants me to clarify some fact from our past that I have clarified many times before. As he gets entangled in what seems simple logic to me, as he repeats the same questions or commentary, I sense his desire to connect on the only wavelengths he has available. But I often resist, am short and evasive. I don’t want to face that he might be lonely and I could make him less lonely if I engaged back, if I were a little more loving and patient. A little less wrapped up in my own anxieties.
As for his dependence on me, it is really just another part of our routine I don’t notice anymore, especially when we are alone and I’m not comparing our relationship to others’.
Ralph’s condition is what it is, ever changing in small increments and this is the life we both lead, one I find myself adjusting to on a daily basis. I don’t have time or energy to worry about definitions now.
Alice in Memoryland 
Hi âAliceâ,
Thank you for your posts. I would like to reply to each one, but life happens.
I just want to say that I feel for you, and relate to all you describe, albeit being further back in the process. Even so, and even with Graemeâs MCI (no further assessments are happening due to Covid so we have no idea where he is at really) some of the issues you describe are so relatable.
The memory loss, as you say, becomes routine! And I have adjusted to it so much that it is now just assumed, so that at times when he does remember things Iâm taken by surprise. This of course is quite discombobulating and keeps me on my toes.
I could say so much, but I mainly that it is so good to hear you speak so honestly. And that being irritated is absolutely understandable!! I work hard at not being irritated – and when I am G really flares up at me. There is only so much energy we have. And at times I am so broken with love and compassion for him.
Another way I related is the impression of the daily pattern of his passivity and my (your) running around doing things. I so relate to that! It is less extreme than in your case, but certainly a pattern.
One thing I have learnt recently is that I was not helping myself by having my head constantly and deeply embedded on everything I could possibly read or listen to about AD or dementia. My own head was stressing me out so much – even though I was (and partly still am) obsessed with doing this, in the hope that it would somehow give me some kind of control over what is happening – or in fact mainly, what I fear might happen. I hit a wall and just emotionally collapsed into a kind of âhappy oblivionâ for a while – in actual fact suppressing the anxiety rather than (what I wish it was) truly accepting reality. This is beginning to wear off however, as I notice more things and alarm bells go off more often.
So, thank you hugely for your posts. They make a real difference to me. And I empathise and feel connected with your life even at such a distance.
Sheila
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I read this note when I woke up this morning and have to say it really touched me. Thanks you so much for writing. I too went through a period of reading absolutely everything and wanting to know everything, but it does become too much. I also went through a period of not exactly denial but maybe avoidance, telling myself Ralph was not a serious case. I don’t do either extreme now. Ralph’s Alzheimer’s defines him now and is part, but not all, of what defines my life.
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At one point, names don’t matter. Call it what you will, but every day is different and presents small changes in our loved one’s ability to function. It’s a waiting game and not a fun one at all.
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So true but sometimes I forget. Thanks for writing
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