It's a disease that progresses very slowly, at least that is our case. One comment that's common is, "I don't know how you do it." They mean: they find it overwhelming when you begin to talk about what you're going through. Not that the subject comes up often, but when it does, and I tell them what's going on when they ask, "How is Wally," and my answers seem to startle them, I wonder why they feel that way until I realize it didn't happen last month or last year but several years ago.
At first you believe it is a misdiagnosis because there are changes but they are not real big changes. In fact, at first, I thought, Wally isn't that bad, we can still enjoy life, go places, see movies, go out to dinner, have friends over, all the things you enjoy in life. Bridge playing, I think, was the first thing noticeable because bridge playing requires a great deal of memory, and Wally was a very good bridge player, a game he loved to play the most. So, we played Gin instead and Wally loved playing the game. We took walks, rode our bikes, gardened, went to movies, the theater, concerts and dinner, it lasted for quite a while, then card playing, any card playing began to go. The same with everything else. And when I say everything, that is exactly what I mean.
I found out today why Wally has this interest in spicy food. The food censors have began to shut down, leaving a desire for spicy foods he can taste. You're happy he enjoys the fresh hot chilies from the garden but it also means the disease is progressing to its inevitable conclusion. That's the hard part.
Facing the end, that now draws nearer, and the more things he won't be able to do is where we are at. I'm having a hard time holding on at times. It comes and goes, like a tide, in and out, in and out, this feeling of fear and dread hits hard then leaves. It makes the rest of life, the life you have to keep doing to survive in the world, much harder. To plan anything is fraught with peril. It all can change in a blink of an eye with Wally's care. Needs that can and will come up immediately must be dealt with immediately.
To give you an idea of what that's like, today I spent an hour and a half this morning going fifteen miles on the freeway for a root canal. I was a half an hour late but so was the dentist. Once home, I couldn't rest because bills needed paid since it was Friday, shopping for the house because now it is not just me and Wally, but the caregiver and his girlfriend who visits him on the weekend, otherwise the caregiver goes into town to visit the girlfriend. Another helper for the household who is in and out and invaluable in assisting the full time caregiver when I no longer have the strength, plus he helps maintain the house. It all costs money and time and it is all on my shoulders. So after the root canal, the traffic and paying bills it's time to get Wally up for his geriatric appointment and to stop at the feed store afterwards for a hundred pounds of chicken feed, more traffic, then dinner to fix while the caregiver does his job and I feed the animals and us. I'm tired, my tooth aches in spite of the second pain pill, and with it now getting beyond 9 P.M, I'm ready for bed. But sleep is not something I can afford. Taking a sleeping tablet is a very bad idea. If an emergency, and there has been these emergencies that happen at 3 A.M. on a Sunday morning or holiday that has occurred and I've had to deal with them, you can't be drugged or drunk or anything but awake.
It's waking up when he is in discomfort to see why. Is the catheter plugged? His breathing normal? It goes on from there. You wake up so much that it stops bothering you no matter how tired you are. And maybe, you can take a nap now and then. They become a treasure, the naps. If lucky I can take a shower before laying down for an hour unless I'm so tired I don't care and that's, unfortunately, what usually happens.
But it didn't start this way, it took years, and you find you can do it because time smoothed the road to get there. It's why the answer always come out to: "I don't know how you do it," as, "I don't either." You don't know because you haven't thought how it got that way, you've been kept busy while all that happened.
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