This was our big accomplishment of the last few days: changing ten light bulbs (embarrassing to admit how many and never mind for how long).
I realize how trivial changing light bulbs sounds, but that’s the thing. What used to be one trivial, mindless activity handled along with hundreds of other trivial activities in the course of a day has taken on a new distinct weight given Ralph’s memory loss.
Obviously I could have handled this chore mostly by myself but decided I’ve been letting Ralph slide. Knowing how much to ask of him is a delicate balance, but I haven’t been pushing him enough to participate in our daily life, too often accepting his plea that he’s tired, in part because not pushing is frankly easier for me too. So if he’s been sliding, I have too.
It took me five days to corral Ralph’s attention, but the other morning I got him to walk with me from room to room upstairs and down, noting which bulbs were out and what kind of bulbs were required while I took notes. He unscrewed a fluorescent rod in the kitchen and a decorative bulb from the bathroom vanity to make sure we got the correct replacement sizes. Over the weekend we drove to the store–I let him drive while I rode shotgun.
In the parking lot he agreed to bring in the fluorescent but became adamant that he didn’t need to take the decorative bulb because he’d remember it. I acquiesced, but once we were on the bulb aisle, the bulb choices overwhelmed us both (evidently, according to a friend I was telling about our excursion, bulb buying has become more complicated for everyone these days) . Ralph had no idea which decorative bulb matched what we had. Not 100% sure myself and sensing his rising anxiety, I ran back to the car for the example from home. When I got back, Ralph was still in the row where I’d left him and had found a matching fluorescent rod but misplaced the bulbs we’d already picked out (something I might have done myself if if truth be told).
By the time we got home, Ralph was exhausted. I changed the bulbs I could reach. He took a nap. The next morning when I mentioned changing the rest of the bulbs, he gave me a blank look. But once I reminded him that we’d been to the store and here were the bulbs, he happily changed the fluorescent bulb. Then he took a rest. In the afternoon I reminded him again and he willingly changed three bulbs n the kitchen. This morning, I reminded him again and he changed the last ones, including a light on the stairs that was admittedly difficult–especially since one of the new bulbs was a dud–and required a ladder as well as much turning on and off of the switch.
We are now a house of working lights. What a sense of accomplishment!
I’m giving Ralph the rest of the day off, but tomorrow I’m plan on reminding him to change the oil in the lawn mower. It’s been a year.
Alice in Memoryland 
Wonderful post and comments that raise so many issues!
Feeling fatigued may be what I notice the most .When I tell my wife that I’m tired, she often offers to do a chore I might have otherwise done. I find myself more tempted all the time to take advantage of her offers, but consciously try to fight that. At least where I am on the MCI spectrum – and we’re all different – it makes sense for me to use post-its, iPhone reminders, and my wife’s help to remember stuff because I forget more now. But I can take out the trash, mow the lawn, or do the dishes as well as I ever could (note: my wife has always questioned whether I can wash dishes, at least to her standards!), whether I’m tired or not. So I try to push through the fatigue and not let it become an excuse for some extra time in the La-Z-Boy while my wife does stuff I can still do. I don’t think it helps the caregiver or caregivee to go soft on us. Like Alice wrote, you’ve got to keep trying for the right balance, which is different for each of us, and is going to change as the disease progresses or (in some cases) regresses.
So go ahead and freshen up that “honey do” list without any guilt or regrets.
As for the cause of the fatigue, my layman’s understanding is that there are at least two causes. One cause is that your brain simply has to work harder as the pathways get blocked by plaques and tangles (at least for those with prodomal AD). However, I saw my psychologist just yesterday for my 3rd and final session of neuropsychological tests (no results until August 30th & she refused my plea for a “preview”). I mentioned my constant fatigue to her and she told me that she thinks my fatigue is caused by depression, which itself can be a symptom of MCI. So there may not be one cause of fatigue that applies to everyone with MCI and you’ll need to discuss it with your neurologist/psychologist/physician.
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Thank you so much for this comment. It is funny how focusing on the small details brings up such larger issues.
As usual, your insights are invaluable. Re-chores, as I write this, I just asked Ralph if he’d changed the oil in the lawn mower yet. His response, “I thought I’d that today or tomorrow,” is the same as it has been for a couple of days. In fairness, it is incredibly hot outside–and I have noticed sensitivity to heat is much more of an issue to Ralph these days. So I am not going to nag him this afternoon. But tomorrow morning, I am going to make sure the work gets done!
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Hi Alice – This comment doesn’t have anything to do with your post, but I stumbled on a short article (its name and where you can read it below) that I thought might interest you and your followers, and I didn’t know how to get it to you some other way. The article highlights again the important role played by caregivers.
Carers’ diaries in dementia: Is there a role in clinical practice?
http://www.sciencedirect.com/science/article/pii/S2352872916300112
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Thanks, this is very interesting. Will post on my blog for caregivers to look at.
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Lightbulbs are a total nightmare!
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Evidently they are! All I can say is they made me feel depressingly old myself.
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Yep – and as for changing channels on the tv….
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Don’t even go there!!!
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I’ve always wondered about the fatigue factor. My husband definitely is more tired, more fatigued compared to prior years. Is it somehow related to the dementia in some way? If it is, I would be interested in understanding the pathophysiology of it. I think I’ll try to do some reading and looking up to see what I find.
We have cathedral ceilings and one of the bulbs blew. In desperation I hired a handyman to come and replace it. I didn’t trust either of us on a very tall ladder! And oh, I totally understand what you mean about “I’ll remember” when I know he won’t!
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Thanks, Carole. I have never gotten a clear answer re fatigue. I have been told his fatigue does not connect to his meds. What I assume is that trying to fill the memory holes can be exhausting. I know the repetition tires me out. He is not experiencing repetition but is always trying to catch up mentally which has to use energy.
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