His First Year


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August:  The hardest job you’ll ever have

Things are still going more or less OK. The routines you've established still work, though they need to be tweaked from time to time.

But you're tired. So very, very tired. Because Alzheimer's doesn't only operate on a 9–5 schedule. People with the disease need help and monitoring around the clock. Their internal time sense goes completely haywire, and sleep cycles change almost randomly. All of which means that the care-giver suffers chronic sleep deprivation. The disruption to sleep patterns and utter exhaustion – as well as the toll it takes on the system – have a huge impact. You know this, and start trying to secure nap times whenever you can – if you have respite care, or your loved one goes off for some kind of Adult Day program, or you have a spouse with whom you are sharing care-giving responsibility. But doing that means that some things which need tending, don't get it. That can be paying bills, working, doing house cleaning. Whatever it is, you have to decide whether it is more important, or getting some sleep is.

People who have had children will have some idea what this is like. New parents are frequently in the same situation for weeks on end. That is well understood, and people make allowances for it. But with Alzheimer's, it just keeps going on and on and on. And it isn't well understood, so people don't make allowances for it: you're caring for an adult, so what's the problem?

Still, you consider it a moral duty to stick with the care-giving, no matter what. Because now, no one else could do the job you’re doing – they just don’t understand what would be needed. And you said you’d do this. To give up would be a breaking of sacred trust, would mean you were not true to your word, were somehow less of a man. You 'suck it up' and keep going.

One of the things I most enjoyed doing when I had a break – whether Martha Jr was taking over care for her mom for a few hours, or we had a respite care person in to sit with Martha Sr for an afternoon – was to go out target shooting. It may seem counter-intuitive, since I was usually so tired, but this would sometimes be much more beneficial than a couple of hours sleep. Why?

Well, because when you're handling firearms, you have to pay attention to what you are doing in order to be safe. You have to focus your mind on the task at hand – you can't be thinking about what is happening at home, or worried about this or that thing. So shooting would take me completely away from my situation as a care-giver for a few brief hours in a way nothing else, not even sleep, could. And while I would still be tired physically when I got home, I would nonetheless be much more mentally rested.


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