Fifteen minutes ago I left J with the kind woman at the Respite Program, who greeted J, handed her her name tag and was helping her hang her coat in the closet as I said, “I’ll pick you up afterwards” and headed out to the car. After a morning fraught with ups and downs – “I can’t go to that program today, I don’t feel well” to “I guess I might as well go to that program and have something to do and get my mind off my problems” – I am exhausted, and still in a state of disbelief that this is really happening. My cell phone is by my side as I write, just in case there is a glitch and they need to contact me.
I decided to start an apple pie this morning, for something to do while listening to J waffle back and forth about the program. The apples were tiny, so there was a lot of patient cutting and peeling involved. I had hoped to get J involved with this project, but she declined, preferring to pace about and worry out loud, “What if I need to stand up and move around? Or need to lie down?”, etc. Now there is a pie sitting on the counter, uncooked, and I am trying to decide whether to start the oven and risk getting called to come get her early, or just wait until she gets back at 3:30 to bake it. Oh heck, just start the oven! Worst that can happen is I snatch the pie out of the oven while I go pick her up, and put it back in when I get home. Fortunately, the program is less than two miles from here, a very quick 5 minute drive.
Everything about this “starting the Respite Program” is so intense for me. “Heavy” is the old hippie word. The reality of our situation is undeniable now. All of the work I’ve done to get J up to the point of actually attending the program has driven home the point that she, my dearest friend, companion & spouse, is the subject of all my hard work, no longer the partner in it.
Another change for us, as our reality changes, has been with the television and radio. We’ve had a tv in the back room, which we watched most evening for a couple of hours – mostly Netflix, discs or streaming. Our news always came in via newspapers, and magazines like the Economist and the New Yorker, the NY Times Book Review, and so forth. Neither of us cared for the barrage of network tv news, or the soundbite delivery. And radio has pretty much been limited to in-the-car.
But now, the conversation in the household is getting thinner and thinner, with big gaps of uncomfortable silence – J cannot generate the type of conversation she used to, and I can’t summon the energy to compensate all the time. Think about what it is you talk about with your partner, or best friend – things that friends or relatives have done or are going to do, plans you are making, things you have done in the past, ways you are going to tackle a household problem, etc. – everything relies on an understanding of context and history, which are the two elements that are fading for J.
So, we got ourselves a tv for the living room – basically, a Christmas present for us – which is big enough to watch comfortably from J’s recliner at one end of the room.We haven’t had cable tv for years because we didn’t watch enough to justify the expense. But I researched indoor antennas (can’t have an outdoor one in this development) and finally got one that pulls in over 20 over-the-air tv stations. And then we got a little radio that has a knob for the dial, and a round on/off switch – a totally non-digital machine. It pulls in the Public Broadcasting station and another classical station quite well.
All of this in the service of having more variety of background sound, or something to look at when the quiet has been long enough. Another objective is to have some easy-to-operate entertainment for when we have some in-home companion services again. Not that tv or radio will ever be a main feature of our home, but that we now have options, and NEED options, for entertainment that previously we could supply with conversation and reading.
Well, no phone call yet, and the pie is 20 minutes from being done….!