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.