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Archive for the ‘Ernie’ Category

Because I know that family and some friends are wondering how Ernie is doing now that I’m 3000 miles away from him, I’m blogging about Ernie.

Here’s Ernie with our friends Yemi and  Ara, the week before I left him there.

Yemi is in graduate school. Ara is a nurse with a bachelor’s degree and the intention of pursuing post-grad degrees.

To recap, Ernie started talking to me about me leaving Charlestown a year or so before the thought was thinkable to me. We had moved to Charlestown so that each of us would be cared for as needed until we died, without having to depend upon our children. Ernie began talking about me leaving Charlestown well before he moved to assisted living in RGT. He saw how sick I was, living there. He worried that I would relapse into ME/CFS. But then the talk was about me leaving when he died.

In 2010 he was thought to be dying. When he didn’t die, we realized that we might be in for a long, slow decline, that he could last a long time. Then in January 2011, he had to be moved to RGT; and I got sicker.

When son Geoff challenged me to think about leaving Charlestown, I told Ernie that I might not last as long at Charlestown as he might. He said I should go. He didn’t want me being sick. That was before I had any intention of acting upon the idea.

You all know what happened next–an excruciating separation with the consequences completely unknowable. It was indescribably difficult, and still is, sometimes. Mostly, however, I am happily settling in to a radically different life, despite occasional bouts of anxiety. My physical symptoms have significantly abated. I’m feeling much less sick. In fact, most of the time, I feel great.

Now, what about Ernie? Every day we talk by phone. We are having as much conversation daily as we had when I was going to be with him in RGT every afternoon–at about the same time (for him). Every evening I send him an e-mail message that is delivered to him the next day. Since his stamina for conversation is limited, he prefers to read; and this way I can tell him more about my life. Every week I send him a letter with lots of pictures, so he can see where I’ve been, what I’ve seen, and what my place looks like as I get organized. I print and mail him my blog posts, so he reads what I write for you, just as he did when he could use his computer.

He assures me that he is okay and that he is very happy, knowing that I am doing well.

There have been events along the way. He has figured out how to deal with situations I would have taken care of had I been there. He arranged to have his laundry done. He found an aide who would trim his hair and beard. When his walker tray got separated from the walker, he got it fixed. He has bought toiletries at the RGT “store”, which is set up in the Activities Room on Tuesdays. When he reported to me that his  hip had begun causing him to limp, I told him to talk to the nurse, which he  did. When he was taken by wheelchair to the Medical Center and became sick and faint sitting in the chair, he told the receptionist who found a place for him to lie down. When his aide took his only blanket to be laundered, I told him to ask for another blanket. Instead, he decided to sleep in his thermal underwear and socks the one night he was without the blanket.

These are all things I would have attended to had I been there, and there have been other such incidents. I have asked him if he wanted me to act. In each case, Ernie has talked with me about it and dealt with it. He is doing more for himself than I was allowing him to do.

The staff have been wonderful. Because they know both of us and our story, and because Ernie is so pleasant and appreciative, he gets extra attention. Just as I did when I was living at Charlestown, I talk with the receptionists who print and deliver my e-mail and with the aides who are sometimes in his room when I call. I’m in touch with his nurses and his social worker. A few days ago, when I phoned him, he was in his doctor’s office for a routine check-up. He handed the phone to the doctor, who also knows me well, and he reported on Ernie’s status–nothing new.

Hearing from me audibly and in writing every day and knowing that I am glad to be here has kept Ernie in good spirits–according to him and the staff.

Of course we know that the status quo will not last. Frequently, Ernie tells me that he notices further signs of decline. He says he is weaker and less able to concentrate. He isn’t reading magazines anymore. It’s all he can do to get through The Washington Post over the course of a day. He still follows sports on TV. More and more of his time, however, is spent on the bed, resting and relieving his constant back pain. As his situation changes, I have no idea how we’ll deal with it.

At present, Ernie seems to be okay. Now it’s time for me to call him.

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RGT 227

My apartment is Parkview 616. Ernie now lives at RGT 227. He’s been there since January 25th. All his furnishings went with him, including his art collection—39 framed pieces, most of which can legitimately be called works of art. It includes 19 etchings, two lithographs, four serigraphs, 12 color photographs (most of them taken by Ernie), one linocut, and one piece of needlework done by me about 40 years ago.

Yesterday son Michael came and hung the pictures. What a huge difference this makes at Ernie’s place.

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Until yesterday these pictures were stacked in boxes and against the walls. The necessary tools, picture hangers, photographs to show where everything was to be placed, and other odds and ends have cluttered Ernie’s apartment—a state very hard for Ernie to tolerate.

Michael efficiently, skillfully, precisely, thoughtfully, and artfully hung those 39 framed pieces. There’s one in the bathroom that I forgot to shoot. After he left, I cleaned up and organized the place, making it neat and orderly.

When I returned to Ernie’s “studio” later that afternoon, it was as though I had come from my bedroom into Ernie’s room at Parkview 616. Ernie commented that being able to see his art was a comfort for him. Since January 25th I have been frantically working at making it more comfortable for him at RGT 227—meeting with staff, following up, bringing things, getting things done, and helping him as much as I can to adapt to assisted living. Now, at last, he is comfortable.

He told me last night that when he returned from dinner and opened his door, he was stunned. He hadn’t been thinking about the difference and coming back into the apartment was “a shock.”. He said he stood there for a long time, looking at everything, enjoying it, enjoying being in his place.

Michael spent five hours of his time (including travel) making every hour better for Ernie. And it’s much more pleasant for me to be there, too.

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Recover-ed

About 90% back to normal vitality. With an interesting story.

As you know, I have been sick with a monstrous viral respiratory infection. (Why wasn’t it called “flu”? No idea.) During Ernie’s first week in assisted living (RGT), I was in bed for three days, leaving him on his own. Probably that was good, in that it may have speeded up his adjustment, forced it. After I could get out of bed–still blowing, hacking, and miserable, I got back to work on all the tasks associated with Ernie’s transition from our apartment to RGT.

For one thing, Ernie needed clothes. For the past year, he hadn’t left our apartment except for medical appointments. We’d given away all his clothes except a couple of shirts and pants. He wore the same four scrub pants and three scrub tops exclusively. At RGT he has to go to the dining room for his meals, out in public. So I had to order more changes of clothing for him, plus a bathrobe and slippers. That required ordering several options from which he could choose, then returning the ones he didn’t want.

I had to get a table and chairs for his room, which I found online after futilely shopping locally. I had to meet with various staff  members. There seemed to be new chores daily. And I tried to take care of myself by doing things I enjoyed–even though I was feeling rotten. In other words, I was very busy and living as normally as I could.

Last Friday I even went back to visiting my clients in the care center, whom I hadn’t seen in five weeks. After which I collapsed on Ernie’s bed.

Nevertheless, on Saturday I went to Michael’s where we chatted in the hot tub for a couple of hours. Sunday morning I could hardly walk to the bathroom, I was that weak. The cough had subsided quite a bit and I wasn’t blowing my nose, but I was SO weak and shaky. I decided that I’d better try bed-rest to get myself well.

I told Ernie that I wouldn’t be leaving our apartment until I felt better and I put myself on a 45-minute interval regimen–45 minutes on the bed, 45 minutes doing what had to be done, 45 minutes back on the bed, using my timer as disciplinarian. By Wednesday I felt no better, a little less coughing but general malaise and shakiness.

As I had about decided that maybe I should call my doctor, my phone rang. It was the receptionist at the Medical Center. “I’ve been thinking about you,” she said. “Dr. C has two last-minute openings today. Would you like to see her for any reason?” Amazing.

After Dr. C. questioned and examined me, she said, in effect, “You’re not sick.” She told me I had pushed myself too hard when I actually was sick, and that was why my body was taking so long to recover. But, clinically, I wasn’t sick. She ordered bloodwork just to make sure.

When I asked her what she thought about my bed-rest regimen, she said she didn’t think it was a good idea. She said, “Does this remind you of CFS? I’m afraid that if you continue resting, you may relapse back into CFS. Instead, be active, just go a little slower and take a break in the afternoon.”

I went back home still feeling just as lousy, but very intrigued by her speculation that I could return toME/CFS by behaving as though I had ME/CFS.

The next morning, I awakened at 6:30 feeling much better. I went and practiced the piano–just for about 45 minutes, not 90 minutes. Then I walked, not three miles, just one mile. I took Ernie’s laundry and snack foods for him, then went to a nearby piano store and tried out some used pianos. In the afternoon, I watched a movie.

I was feeling so much better. It was as though my doctor had said, “You aren’t sick,” and I stopped being sick! A miraculous cure!

Maybe the four days of bed-rest had something to do with it, but the suddenness of my sense of recovery sure surprised me.

Now here’s the paradox. When I had ME/CFS, I had to spend 14 hours a day in silence on my bed to be able to be somewhat active the other hours and to have enough energy for occasional special events. What Dr. C told me was that I should NOT be resting to get well, that I should be more active. And, sure enough, I’m feeling much better.

As for Ernie, he is adapting wonderfully, graciously, to his new environment. It’s a slow process, getting the staff at RGT to adapt to him, getting his person and his room as we want them, waiting for deliveries and installations and so on. But he just called me to tell  me he has passed the test for self-medication. I’ve been working on getting that done for three weeks. Hooray! As of Monday, he won’t have to wait until someone brings him his Tylenol.

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