I’d like to blame the thick New Orleans heat for my recent silence but that’s not why my fingers have stopped typing. Nor is it the Virus or even my obsession with the current political battle for America’s soul, although they are troubling realities. My malaise, while similar to what so many others are suffering these days, is less a reaction to current events and more a reflection of life with Ralph and the drip drip drip accumulation of Alzheimer’s impairment.
A life in which nothing changes. Everything keeps changing. Nothing changes. Everything keeps changing.
Hard to believe, but Ralph was officially diagnosed over seven years ago, in 2013, and, as my daughter recently pointed out, we had begun noticing lapses when she was a freshman in college three years earlier. So Ralph is already passing the ten-year mark usually held up as a fatal marker on the Alzheimer’s spectrum. And by Alzheimer’s standards he is doing remarkably well in all the ways I’ve described here so many times:
The short and long term memory problems with which he was originally diagnosed continue but are only incrementally worse. Now the repeated three or four discussions center around the tools he wants to get back from the farm (not possible), around whether our older dog Zeus is too thin, around where are savings are invested and if they are safe. He still comes across charming to strangers, not that he’s interacting with strangers or anyone else these days.
But there is something else going on, and I no longer believe strangers would miss noticing he has impairment. There is, if not a slight vacancy, a mental hesitation in his reactions. A disconnect between what I say to him and what he hears.
Trying to articulate Ralph’s current condition to a friend recently, I found myself stating that he has increasing difficulty “retaining information” which is different than his memory problems. I am not sure what I meant exactly in the moment but in intuitively it felt correct. Maybe retaining is not quite it either; maybe the problem is “intake of information.” What I have noticed is that when I make what seems to me a simple statement, he has sometimes has trouble taking in the meaning. He looks at me as if he can’t hear what I am saying—I have considered whether he has a hearing problem and plan to get him checked when it is viable although he seems to hear quite well. If I repeat myself more slowly I can almost see him struggling to get his head around the meaning. But the problem is that I tend to put too many ideas in a sentence.
I.e.:
This morning I said we had a doctor’s appoint with our new neurologist here and that it would be over the phone.
“I have a new doctor? Who was my old doctor?” (straightforward memory issue).
“Stephanie at Emory in Atlanta, but we’ve had to find a new doctor since we’ve moved.”
“So are we going to Emory today.” (not only memory but also comprehension confusion)
Or yesterday, I was on the computer he started asking me questions about his farm tools.
“I can’t really talk now, I’m doing Shipt.”
“What do you mean Shipt?”
“I’m doing a grocery order through Shipt because I realized we’re about to run out of milk.”
He looked at me as if I were speaking a foreign language. Shipt? I should have thought before I spoke because I had thrown three concepts at him, at least two concepts too many. Not only does he not remember why I don’t grocery shop in person these days and becomes anxious when I remind him about Covid (Am I going to get it? is his usual, understandable refrain?) but he has not noticed that our life has been altered by the virus, and he cannot grasp the concept or the steps involved in using a delivery service.
All I should have said was that I was making a grocery list. He doesn’t notice that the groceries come to the front door or that I go through a cleaning process. All he notices is whether there is milk, bread, peanut butter and beer.
These are tiny examples; the moments of disconnect are always tiny, and often much more subtle. But there are so many of them, each annoying and heartbreaking in equal measure.
Alice in Memoryland 
Thank you for putting this out there. I agree with your opinion and I hope more people would come to agree with this as well.One reality about life that you should work on is not becoming blinded by your own emotions of anger and anxiety.
For this blog “Not Letting Anxiety and Anger Overpower in Caregiving”, you will know how to deal with these emotions to achieve great heights in caregiving despite the pandemic. The following are some of the advice you might want to take as a coping mechanism.
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Thank you Eleanor. I certainly work on these issues daily.
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Hello Alice from downunder. I was glad to see your post given everything we are hearing about what is happening in the US and then the hurricane. We are in hard lockdown here in Melbourne, Aus. One hour of exercise within 5k of home and one trip for essentials. It’s not as bad as it sounds as we move into Spring and there is plenty to do in the garden. Your point about everyone else suddenly facing an uncertain future is spot on. My partner, D, turned 60 in lockdown and I secretly wondered whether it would have made any difference to him if we were able to celebrate in a ‘normal’ way. He had a great day, lots of well wishes and none of the stress of a large gathering. The ambiguous loss and anticipatory grief of living with someone who is young and being undone by this awful disease are not new to us. But I wonder if others will understand our situation better once they have pondered how much they take the future for granted. We only have the present moment. Let’s make it the best present it can be x
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Thanks for writing. I think living in the present is what our husbands may do best. And you seem to be doing a good job doing so too.
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This brings back memories of Dad at this stage (a bit later, probably). I would think he had understood what I was saying, there were even nods of the head to show me he understood, then wonder why he didn’t do what I’d asked. It’s not easy remembering to keep everything very, very simple, is it? Even then information may go in but it’s not retained. And then he would confound us by absorbing something we didn’t think he could A support worker used to read short news items from the newspaper. One day she read about how in these days of equality women must be allowed to toss the caber at Highland Games. He laughed and made her read it again. He couldn’t have articulated what had been read but the story really amused him. Good luck with the telephone consultation.
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You are so right about the odd moments when he does absorb or think for himself in some unexpected way. He moved some chairs in our yard to prepare for bad weather yesterday. I’m not sure what caused him to think about it or do it, but I was glad. On the other hand there are so many times I ask him to do something minor, like carry a plate to the sink, and he can’t follow through at all. Now if he were reading about the Highland Games, he would pay attention (have I told you my step-son makes kilts for a living and also plays the bagpipes professionally).
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You’ve just described my life and my husband right down to the realisation that I sometimes give him too many things to process and then have to spend time back-pedalling to get him back on track. It helps so much to know I’m not the only one going through this.
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And of course my first reaction is often annoyance, which I may have glided over.
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Fortunately for me, my husband doesn’t remember that I gripe at him!!
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Neither does Ralph but in the moment he reacts, usually with hurt but sometimes with a flash of his old aggressive anger.
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Thank you so much for this. In reading about Ralph, I realize my husband’s condition is in many ways, still mild. I do notice similarities (unable to recall doctor’s names or why he’s seeing them, for one thing). Hang in there… we are truly all in this together.
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It really helps me to have folks like you and Jane and Mary and all the rest of us as a community. I have never been a joiner, but knowing you all are out there is a true balm.
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OMG I am living with Ralph. How did he get into my house? My husband sounds pretty much the same and on the same timeline. I realized that the country is living our life but when Covid is over everyone else’s life will go back to normal but ours won’t. It is lonelier to be with someone who can no longer carry on a good conversation than it is to be alone. Stay safe in the approaching storm.
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You are right in every way. It is an odd loneliness, though, isn’t it. And normal is so relative as everyone else has now discovered. Thanks so much for writing….
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How alone that must make you feel. Not just alone but sad, as you recognize the increasing distance between you. No matter how well you articulate the condition, situation, and emotions, I doubt anyone can possibly fully grasp the whole picture. That in itself must add to your loneliness. Of course, I am speaking as if I were in your shoes. I will pray for you.
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What a sweet, supportive comment. Thank you so much.
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