April 15, 2008

Update Et Cetera

Last week I called a woman Karen had run into at Office Depot who runs a small operation collecting used items from people who are giving them away and donating them to homeless families who are just getting established in apartments. She, and I, agree that this is a much better way of doing things than donating to Goodwill, where they simply resell everything. Though in fact I think Goodwill is not bad either, since many lower income people will buy from a thrift store but would not accept charity outright, so Goodwill's donations are actually very helpful.

Be that as it may, Nancy not only accepted and hauled away several items, including a large "chair and a half" that was taking up too much room in my small apartment, but offered to find me something upon which I could rest my TV, which at the moment squats on my dresser, having no other place to put itself. She also "donated" to me some much needed heavy duty "push pins" she just happened to have bought herself that she didn't need. I like the idea of second hand goods getting shared around: it is a good way to reduce one's "carbon footprint" on the earth, and not consume anything extra even when acquiring something one needs. Just so I got rid of a large chair and a table and many other things that I didn't need, and thereby ended up with my bed in my living room, acting as a sofa/day bed, and an art studio finally in my erstwhile bedroom.

The arrangement has proven beneficial in other ways as well, seeing as how it forces me to make my bed every morning, since I need to have my sofa available by day! :) The next project is to actually organize my papers and "stuff" so that I know where various important things are...rather than having to frantically search for things at the last moment as I usually have to. I don't have a particular place, for instance, for all the various manuals things come with, so those are scattered in who knows how many places, and I can't find any particular one at any given is merely catch as catch can, and hope that I can find the right one when I need it. Ditto my car and apartment insurance papers, or my various Medicare and Medicaid papers...I have those in a stack with other important ones, but nothing is actually organized, so, every time, I have to go through the entire pile just to find the single paper I need. Not the best way to go, I assure you.

I do have a friend to whom I have taught jewelry making and will do so again, who has offered her organizing skills. I think I will take her up on it next time I see her. Maybe we can spend half the time on jewelry and half the time on getting me ship- shape a bit more.

An update on Joe: His ability to use the letter board is nearly nil. He can no longer point to the letters at all. Instead, we must hold the board over his fingers and try to guide it to where we think he wants it to go. So if he tries to point to K, I say Karen? And he nods Yes. Then he might start by pointing to "w" and I would say"wants" and he might shake his head and I'd hold the letter board over his hands trying out other letters: "a"? No, "i"? No. "o" Yes. Hmmm, what next? "U"? No, "r" Yes. "work" Yes "works"? No "worked" Yes, Yes. And so forth...It can be exhausting for me, but it is far more exhausting for Joe, and frustrating for all of us. Half the time I don't even get most of what he wants to say if he tries to truncate it...That's because he always insisted before in saying every last thing, refused to abbreviate. So now I assume he is NOT abbreviating, when in fact he is. Case in point was yesterday when they brought in 3 Burmese Mountain dogs to visit. I put his hand out for them to nuzzle, which he seemed to enjoy, and after they left and we were "talking" he spelled, "dogs on bed." Huh? "dogs on bed" "What dogs on bed, Joe? There are dogs on your bed?" The nurse didn't understand either. Finally we came to understand that he wanted the dogs to get onto his bed the next time they came...But only after much struggle and misunderstanding. Karen understood immediately, when I told her about it. But she had already seen him with the dogs on his bed, so knew exactly what he was referring to. Anyhow I felt like a fool...But it doesn't matter, except that when I did get what he was trying to tell us, he told me, No, that isn't what I mean! until the nurse asked him the same thing, when he said, Yes, that's it!

So I felt doubly like a fool...Who cares, it isn't a big deal. But I dunno, it was such a struggle to figure it out, and then to have him simply tell me No, you failed, you failed...It ...Oh, forget it, forget it!

Nevertheless,. he does need that ERICA device, the Eye Response technology, so he can actually speak through it again. This whole spelling business is simply not working any longer, and the longer it goes on, the less he is going to be able to communicate at all. He needs ERICA or the version of it that accounts for drooping eyelids and he needs it yesteday. But if the hospital is predictable, it won't come any time soon. I was afraid this sort of situation would develop. They told Joe a week ago that he would have use of the hospital's old ERICA, at least until his personal version arrived. But so far no sign of it. He hasn't even had a chance to try it out more than the one time. They brought it in a second time, yes, but wouldn't let him even use it. So why they brought it then I do not know. Oh, it is so frustrating, and even frightening, knowing he is approaching the point where he could be effectively locked in, unable to communicate, except by blinking or otherwise replying to yes or no questions. Even now, he can no longer talk on the phone, because he has no strength to tap the bell.

In contrast, Cy seems to be getting along better than anyone thought he would. So far. Leila and her partner just left for their road trip so I don't know what things will be like for him now that he is alone, but he still gets a lot of visitors, and I doubt that he will spend a great many days entirely on his own. I cannot see him much this week, as I am swamped to the max with duties of my own. But I will see him on Saturday at the seder, and next week looks much better in terms of visiting. He still cries when I ask him how he is doing, but when I don't bring Lynn up, he seems to do fine and can be persuaded to take walks and to get out of the house much more easily. It has been a month since her death now, and he said he needed that month to give himself over to grief, which I think was fair enough. I think he should take the time that he needs! But he seems to have been able to pull himself together in that time, and to be recovering okay. At least he no longer talks about wanting to follow her. When he did I simply reminded him that I needed him here! He acknowledged that that might be so, and didn't try to press the case for his imminent death any further.

I don't think it helps him to wallow in those kinds of thoughts, frankly. So if it takes my having to pull him back, tell him he can't go that road because I need him, then I will. He doesn't really want to die, I am sure of it, I think he is simply certain that he should not want to live, now that his beloved is gone. That he is not honoring her memory if he continues to live with any kind of contentment or happiness. But he can and should. Lynn would want him to. And so I don't let him get away with self pity or wallowing in thoughts of following her to the grave. He is 88 and death will come of its own accord soon enough. For now, he is healthy and I believe he still enjoys life. He doesn't need to feel guilty for that.

Posted by pamwagg at April 15, 2008 11:00 PM | TrackBack


I think that's great that you now have studio space to work in. Makes perfect sense. I also think it's such a good thing that you are willing to work with others in your home. I hope your jewelry making friend can help you get more organized.

Sorry Joe is having so much trouble communicating. I really don't know how he copes with his situation. I know I wouldn't be half as strong as he is. Definitely get those dogs up on the bed with him. Animals are healing to the spirit. I think pets should be mandatory (except for those who are allergic) in hospitals and hospices. I forget how wondrous touch is, but my cats remind me each day.

I'm glad Cy still has the desire to live and that you are there for him to redirect any self pity towards something more positive.

Posted by: Kate K. at April 17, 2008 12:52 AM

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