Communion Of Dreams

That’s what the doctor said yesterday.

We took my mother-in-law in for a check-up – first time she’s seen the doctor in almost a year.  Oh, he’s been involved in her care all along, and will usually just prescribemeds or treatment without seeing her, based on our phone calls and stopping by his office, explaining what is going on, what we think she needs.  That may seem unusual, but the truth is that it is easier and safer to do this – means that we don’t have to get her up and off to his office when she is fighting the flu or has been hurt.  My medical skills are very good, and generally we can cope with anything here at home so long as we get the support from him.

Anyway, it was time for him to actually see her, and since she was doing OK presently, we got her off to his office.  Thorough examination, discussion of her condition, confirmation of what we had suspected: that she had a minor stroke three weeks ago which had led to more little complications to our lives, less comfort for her.

And he asked us how we were doing, as he usually does.  Whether we were getting a break now and again, et cetera.  He, perhaps of all people, understands what care-giving at this level demands.  He confirmed that we’re providing about the best care possible, based on what he can see, and make the comment at the head of this post.  We came home.

And since then, we’ve been dealing with the ‘fallout’ of that visit.  People who are living with many forms of dementia, and particularly with Alzheimer’s-type dementia, are disrupted by any changes in their routine.  We’re lucky in that my mother-in-law usually stays pleasant during such changes (visits from people, going out to someplace strange) – many Alzheimer’s patients get very angry or combative during such occasions.  But we always experience more problems in the 24 to 48 hours following.  Last evening she was argumentative and hostile, and overnight she slept very poorly – changing position in her bed about every half hour after about midnight.  And as a result, since I was ‘on-call’ and listening to the monitor to make sure she didn’t need help, I basically didn’t sleep during that whole time.

So this morning I’m exhausted, suffering a very nasty headache.  And wondering just how the rest of the day is going to go wrong.

Jim Downey

I once had a boss who was one of those self-made millionaires, a real classic ‘alpha’ from circa 1965, complete with the mindset and abuse of employees, even though it was some twenty years later. Once, when something I did was screwed up, I went in to talk with him about it. All in a huff he told me “I don’t want excuses.” I looked him in the eye and said “I’m not here to give an excuse. I’m here to give an explanation, so we know what went wrong and can avoid having it happen again.”

Eventually, I got him trained, and when it came time for me to move on we parted on good terms.

Nothing is screwed up, and I haven’t made any big mistakes that I’m here to explain. However, I have commented several times about how tired I am, and how being a full-time (read “around the clock”) care-provider for someone with Alzheimer’s means that I don’t ever get enough sleep. Basically, either my wife or I are always listening to a baby monitor at night, at most dozing lightly. We take turns doing this. The problem is, that even when you’re not ‘on-call’ it is tough to sleep really soundly when your bedmate is dozing lightly. And while I am willing to make many sacrifices to care for my mother-in-law, giving up sleeping with my wife altogether isn’t one of them.

Most parents know what this will do to you, since caring for an infant means this sort of interruption to your sleep cycle for weeks on end. But for us, this has been going on for about three years – it’s been a full year since we had much of a real vacation from it. It means that I operate at a chronic sleep deficit. I feel like I am perpetually at about the third entry in this blog-post about sleep deprivation, with a chronic low-grade headache, lack of focus, shortened temper, forgetfulness, et cetera.

Anyway, there’s an explanation for the next time I say that “I’m so tired,” echoing Lennon’s song of the same title written after three weeks of interrupted sleep cycle when off to Transcendental Meditation camp. When I say I don’t have the energy to do this or that, or that it is difficult to get my focus for accomplishing something, this is what I mean, not that I just didn’t get a good night’s sleep the night before.

Jim Downey