For everyone who has MCI or Early Alzheimer’s or who lives with someone with these forms of loss THE CALENDAR IS KING (QUEEN).
You don’t have to have memory loss to have trouble keeping up with scheduling complications of course. Dental appointments, meetings, pick up times, they all swirl through our lives and seem to swirl faster now with the advent of electronic calendar keeping. In fact my highly intelligent, mentally acute son texted me two weeks ago to arrange when he would pick me up from the airport that day, only to have me tell him I wasn’t arriving for my visit until a week later. LOL. Haha.
Still, driving Ralph home from his dental appointment yesterday morning, clutching the little card that noted the dates for his next two appointments, repeating to him the dates fifteen minutes later as I wrote them down on our big kitchen calendar, then again last night when he asked, and again this morning when he asked as soon as he woke up, it struck me how much of our daily life now revolves on what used to be a taken for granted detail.
In my first support group for dealing with newly diagnosed Mild Cognitive Impairment at the Emory Memory Clinic, there was discussion of calendar keeping—one man explained that he printed up a schedule daily for his; others had taken classes in calendar keeping—but I didn’t pay much attention. At the time, Ralph, who in his business life was always a stickler for keeping precise calendar records, still carried around his mini-notebook calendar. And frankly his life was not so busy that I thought it would be hard to keep up.
Well, his life is less busy now, so keeping up is not exactly a problem. He gets everywhere he needs to. But keeping track has become an obsession, really for both of us. As soon as there is something coming up, whether a dental appointment or a dinner date, or any other minor routine change of plans, the discussion of WHEN becomes endless. As usual the underlying issue is anxiety. But I think the matter of keeping up with days and calendar dates dominates over every other issue in our lives right now.
I gather many caregivers of those on the Alzheimer’s spectrum, especially spouses and children, deal with this WHEN problem. I am never sure I am dealing with it as well as I should but we muddle along. We have an erasable board that tracks the weekly schedule. And we have a large book calendar that I found at Office Depot; I looked at every one in the store and the best one for our needs includes a monthly at a glance as well as the weekly at a glance. And frankly his week-long pillbox is the best reminder of all what day it is.
Ralph will take his pills and then, sometimes go read the weekly calendar. He rarely looks at the big calendar, but once in a while it comes in handy for him to get a time line straight. He does not have a calendar on his phone and has never learned to use a computer.
The fact is that Ralph doesn’t need to know what day it is most of the time. And he doesn’t need to know when his next eye doctor appointment is ahead of time. But he often wants to know. And then wants to know again and again.
As for me, I am having a little trouble letting go of my need to have him know things ahead. The marital habit of talking about the details of an upcoming birthday party, a worrisome doctor’s appointment, a visit from or to our kids, is hard to break. And I have not solved the basic conundrum:
Does bringing up what is coming up days or weeks ahead creates unnecessary tension for Ralph and is it a waste of time anyway since he won’t remember? Or does carrying on a conversation about future events, even if it means carrying on slight variations of the same conversation many times, have value in maintaining Ralph’s involvement in his own life whether he remembers or not?
Alice in Memoryland 
I can totally relate to what you are saying. I am going through the same questions in my mind. Is it better to tell my husband of upcoming events to have some normalcy in conversation and our lives, or does it just cause him and me unnecessary stress from the repeated questions of when, and what? I do not know the answer.
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Thanks. Received this after particularly intense bout of “when and what” while friends were here for dinner. We all, including Ralph, ended up more confused than ever but also laughing.
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LOL! Caregivee here again to to give some perspective from the dark side.
My wife tells me that she has told me stuff, but I don’t remember that she has, and take no offense when she tells me that she’s repeating herself. In fact, we often laugh about it still.
We are all different, of course. Maybe some of the people for whom you care will be annoyed if you tell them, essentially, “I told you that . . .” But don’t assume that he/she will be.
There has to be dialogue between the care giver and care givee throughout this process. I think I’m still at the left side of the MCI/AD spectrum, where I’m still very aware of what’s happening. I feel myself slipping, but I haven’t slipped that far and so I understand my wife’s occasional frustration when I forget. I am guessing that it is still helpful for her that I am somewhat understanding of her frustration.
Some of you might be caring for people further along the spectrum, and maybe it’s not realistic to suggest that you tell the care givee when you’ve discussed something a half dozen times. However, if I have anything to add to this discussion, it would be to encourage you to discuss with your care givees whatever you’re feeling. I’m sure that there is a point on the MCI/AD spectrum when it is no longer rationale to do that because the care givee simply won’t understand that it might be frustrating for you to have to tell the same thing over and over and over.
But don’t sell us short. Just because the clothes hamper has become the “thing that you put dirty clothes in” doesn’t mean that we don’t understand and empathize with you that we are a bit hard to deal with. And maybe sharing that with us will make your burden a little lighter.
On a topic totally unrelated to your post, Alice, and taking advantage of all of you, I want to share that my wonderful wife, practically a child at a mere 60 years old, has spent the past couple of days in the hospital with a possible stroke. I suspect that everyone reading or commenting on the blog is not a teenager, and perhaps barely remembers the teen years. Many of you probably have gone through similar experiences. Nevertheless, this is a place where I feel that I can share my fears about all of this. At one point, my wife and I agreed that we are perfectly matched. She knows the words she wants to say but can no longer pronounce them; I can’t find the right word, but when I do, I can pronounce it perfectly. She came home tonight. My apologies for adding this to my comment to Alice’s post, as it has noting to do with MCI or AD, but we’re sort of all a (dysfunctional) family.
God’s peace to you all!
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1. You are not on the dark side. You shine a wonderful light with your attitude and the way you express yourself.I can’t tell you how much I look forward to your comments. They also help me gain a new perspective, or help me remember regain a perspective I may have stuffed away and forgotten.(Those of us without the excuse of MCI/Alzheimer’s can be pretty forgetful ourselves.) Ralph doesn’t mind my telling him I’m repeating myself, but I mind when I get frustrated and my frustration at my frustration gets in the way of seeing clearly sometimes.
2. I am so, so sorry to hear about your wife and am honored that you feel comfortable sharing your situation with me and others who read this post. I am sure you are both stressed by the situation but you two clearly have a wonderfully healthy relationship and it is great that you are able to joke. Please keep me up to date on how both of you are faring….
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You described our lives here – large wall calendar in kitchen, whiteboard on counter, and countless daily questions, What day is it?, What are we doing today?, and no matter how many times I say Just look on the whiteboard….all day, every day, the same questions.
It’s the dropping away of a major form of bonding and communicating between us, the talking about what’s coming up, and sharing the planning and the anticipation (or any of the feelings a particular activitiy involves). I really miss those days!
Thanks for writing, Alice.
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Thanks so much. You are so right about why this one small aspect of the memory loss counts for so much. The sharing of anticipation is such a particular kind of marital bonding that is “dropping away” as you say. Why the calendar issue looms so large…
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I can really relate to this post! (Actually I can relate to most of your posts!) I think the biggest challenge we have with my husband is time. I too have started using a big calendar like yours to write everything in so that Jim has his “schedule” under his fingertips. But then he forgets to look at the calendar, or forgets what day it is. Now I’ve started crossing out days as they go by.
In general, I’ve learned that it’s best not to dwell too much on what’s coming up after today because he forgets it anyway. Having said that, I certainly have a desire to communicate what’s coming up, because it seems like the right thing to do, based on the past. The other frustration is that when I remind him too often, he gets irritated with me. Seems like I can’t win sometimes. But that’s something I need to get used to…and try not to get stressed out by these minor things.
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Thanks for sharing this. Glad you can relate (well, not glad for you having to be able to relate). We seem to be in very similar situations. I like your idea of crossing off days. That will definitely be helpful. What you describe about frustration rings true and yet it is hard not to bring up pending events in the course of the day, isn’t it.
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Thinking some more about this, I think if it’s natural to share an upcoming event, we should do it, but caveat is not to expect them to remember it. Because really, most things we tell them will be forgotten, so it’s not like we can/should stop talking altogether.
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You are right, and besides it is impossible not to share in the course of our lives together. The trick is not to get frustrated at having to share again and again. But I also am aware that Ralph gets frustrated himself at not holding on the the dates….
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An interesting post. I have no experience of this – dad never seemed to give a thought to appointments. If I said he had an appointment at the dentist he’d nod, say that was fine and forget about it. Sometimes when it was time to go to wherever it was he had to go, he’d say, “Nobody told me about this.” He didn’t ever seem to worry or fuss about appointments so I’m afraid I have no advice to offer.
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Thanks for your perspective. I’ve assumed his concern has to do with the point Ralph is at in his progression, but I also imagine different personalities/characters influence how Alzheimer’s affects different individuals.
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