I just realized that I began blogging about Ralph and me in April of 2014. Is that only a year and a half ago? It feels much longer, as if Ralph and I have gone through years and years of changes in the last 18 months. At the same time it feels as if the two of us are stuck and not moving forward at all.
FEELS is the operative word. Feelings are subject. Feelings can’t be trusted.
A lot of things happened—deaths, weddings, children moving away, friendships evolving, business crises. The accumulation of events big and small that form our lives. But how much as really changed in terms of Ralph and me. Have we moved deeper into Memoryland.
To gain perspective I went back to my first post to compare and contrast the salient points:
RALPH’S DIAGNOSIS:
Then: He “does not yet have the disease called Alzheimer’s. He has the CONDITION called MCI.”
Now: Still true as of his last test results at the Emory Memory Center
WHAT HE REMEMBERS:
Then: Impersonal facts like those on Jeopardy, His Meds, His Daily Routine, How to Drive
Now: He watches Jeopardy but not so much. He still retains facts, but not quite as many. He still can take his meds from his weekly box. His daily routine looks about the same on the surface although his actual day has shrunk. It is hard for him to get moving before 10 am or stay up past 8 pm. And he does a lot more sitting
WHAT HE FORGETS:
Then: Who people are. Conversations. Memories, especially bad memories…
Now: Fewer conversations are retained. More people and also facts seem lost. Old memories too.
WHO HE IS:
Then: “Sweeter than he used to be; less aggressive; more patient; less easily bored (because he doesn’t remember the twenty minutes of waiting for the doctor once it’s over); more in the moment.
But also less ambitious; less energetic; less adventurous; more passive; more dependent…Passionate about his farm and his dog…able to fix anything with his hands…a voracious reader.”
Now: Here is where the changes start. His personality is if anything even sweeter, even less aggressive. He no longer has an interest in analyzing numbers, facts and human nature. He may still be able to fix things with his hands but he doesn’t have much interest. Changing a light bulb becomes a major occasion, not because he can’t but because “it is so much trouble.” There has been a shift. A subtle withdrawal from the world we share that cannot be measured by memory tests.
OUR RELATIONSHIP:
Then: Eighteen months ago, I wrote, “although I’ve been warned there’s no telling how long before MCI begins chipping more deeply into his identity, Ralph is still himself in the most important ways.”
Now: I don’t know if I can honestly make that statement today. According to tests and my own comparison, Ralph is still functioning adequately with my support, but I have more trouble recognizing the man I married. There is a vacancy, a growing disconnect, that I sense but can’t measure.
Perhaps the greater change is not in Ralph at all, but in me. The relief I felt at first when we finally received a clear diagnosis for Ralph’s cognitive changes has shifted to something between acceptance and resignation. The support he requires weighs heavier.
We get along well on a day-to-day basis We still laugh together, usually in the mornings when he is sharpest, but we have less and less serious conversation either about the world around us or about ourselves. Sometimes, in a burst of ebullience, he’ll declare how much he loves me. And I love him, but the love is different and not exactly ebullient.
18 months ago I was a spouse learning with my husband to deal with his cognitive condition. Now I am not sure how to describe our relationship. I often feel more parental than wifely. But saying so feels (that word FEEL again) inaccurate and unfair. Because whatever we have become to each other and whatever we are becoming together and individually changes every day.
Alice in Memoryland 
I think this is my first on-line comment about anything, ever. I was diagnosed with MCI about 6 weeks ago (don’t be shy about telling me that this is a blog for care givers, and I’ll give you all your well-deserved space) after my wife asked me to discuss her concerns about my memory with my primary care doc last Jan, who referred me to a neurologist, who referred me to a psychologist for 6 hours of neuro-psych tests. 99% of the time I think I’m fine, but then some little memory thing happens and I wonder. And now perhaps I see some parallels between my growing fatigue and Ralph, and maybe just not getting things done like I used to. Mom passed from AD at 87, but heck, I’m only 61! Whether I turn out one of the lucky MCI who never progress or I’ve just started down the slide, your real-life perspectives on MCI add to the scholarly stuff I’ve learned from the zillion of NIH, Mayo Clinic, Medscape articles I’ve force-fed myself this year. But your stories also scare the crap out of me because I just don’t want my wonderful wife – of just 3 years – to have to deal with this. My Dad took loving, wonderful care of Mom to the end, but that was after 60 years together. Maybe because I’m in denial, maybe for some other reason, but the possibility of progressing doesn’t scare me nearly so much as the thought of just destroying what should be my wife’s happy, restful retirement years. Anyway, thanks to all for your posts.
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I am incredibly moved by your response, which is so heartfelt and so honest. I can remember how Ralph felt when we were handed the tests—exactly the same situation with our primary care doctor recommending testing and a neurologist. The fact that you are going on-line puts you way ahead of the game. I wish Ralph would. But I do not want you to be scared by my essays, especially concerning your wife. As I hope I bring across and as oxymoronic as it sounds and maybe counter-intuitive, in some ways my marriage has benefitted. There is a gentleness, a sweetness, a mutual appreciation, we had lost after a long marriage. I realize you are in a newer marriage, but having a diagnosis of MCI does not mean you will not continue to bring a lot of joy into her life. And I hope you do continue to follow me and that you let me know when I get something wrong from your perspective. It is sometimes easier to hear and understand what is going on when the person is not my own loved one…
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Well, although I think it would be a stretch to say my parents’ marriage improved as Dad cared from Mom, I understand what you mean. It was beautiful to see them together and I believe that . My wife similarly is more thoughtful and is taking more on herself that I used to do (maybe because I paid the gas bill twice last spring, and then a couple weeks later noted in the check book that I’d paid two credit card bills – but didn’t pay either). But I’m not sure this brings joy into her life! Yes, I will continue to follow you and the others – and set you straight when necessary. 🙂 But I imagine everyone with MCI is different, every care giver is different, and what is “right” for me and my wife may not be everyone else.
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Absolutely crazy. I sent this text to my friend whose husband shares your exact diagnosis … how it arrived here as a comment is truly confusing. I always send your blog to her as soon as it arrives. What I want to say to you is that every time you write, I feel as if I could have written it. That relationship change, the gradual withdrawal from discussion, from ideas, the loss of enthusiasm and the increase in difficulty of simple tasks, and most of all, the shortening of the day by the lengthening of sleep ….. all are so familiar. Their world shrinks and shrinks. So does ours. The borders of our lives blur and recede too. Nancy
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I too find myself pulling away a lot. But I think it is a matter of priorities. Sharing my experiences and the perspectives of my dementia friends has taken the priority that had been held by other issues. It’s not that I don’t care about those things, but they are no longer MY own priorities. My energy is consumed with simpler things – like getting dressed, and eating, … and trying to remember what I was at the desk trying to accomplish. Politics, sports, and all the greater generalities of life are so big that they are discarded. Right now I can share the experiences of symptoms, and share those of my friends. That is huge output of time and energy and the rest of the world will take care of itself. Some people would say that my interests have changed … but I think it is more that my responsibilities have changed. Maybe his have also. Or maybe he has become despondent trying to deal with all the extra energy consumed by the little things. 😀 http://truthfulkindness.com/2015/07/20/time-energy-consumption-dementia-symptoms/
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I am so glad to receive your perspective. I think your are correct that his energy is going to the moment by moment chores of his life. Fortunately he is not despondent. In fact his enjoyment of being in the present, even doing simple tasks, is something I hope to write about as enviable. But I think he is not quite ready to give up some aspects of his life, at least in theory. So he talks about and even plans activities like fishing trips but when he’s actually about to fish, the reality of the complexity overwhelms him, and that is often disturbing to me. I am aware that my reactions as a wife are different sometimes from my reactions as a caregiver. I so admire and appreciate your willingness to examine your life with the rest of us.
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This article provided a good summary for us who have followed you, in that we are able to more clearly see where you are, and where you’ve been. I am so sorry that this insidious disease has wrapped its tentacles around the two of you. You are indeed suffering what Pauline Boss calls AMBIGUOUS LOSS. http://www.ambiguousloss.com/ Here’s her website with several articles on the subject, as well as her definition of it, located on the left of her Home page. I sincerely hope your journey has as few pot holes as possible.
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Thanks so much for your comment and for the reference to Pauline Boss’s fascinating, thought and feeling provoking site. Ambigous Loss is a concept I want to ruminate on before commenting more.
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Here she is again — I’ll bet this one is on target too. Thanks for coming over … N
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