A year of living on the edge

If you follow my blog, you know that 2010 brought many new, exciting, and enjoyable activities and events into my life. I got a driver’s license and bought a car. I drove to the beach and went swimming in the bay. I spent a weekend at my son’s and his wife’s lake house. I ran a 5K race. I’m practicing the piano 90 minutes each morning (don’t think I’ve mentioned that). I partied at the gala and at the Halloween wedding. There have been many very satisfying experiences.

At the same time, I have been living in a highly agitated, over-active state. My explosive recovery in 2009 left me too energetic, in an ADHD condition, unable to settle down, almost manic. Meanwhile, as I worked on calming myself down this past year, Ernie has been experiencing significant decline and increasingly frequent brain attacks.

In a brain attack in April he had his first fall, as he staggered toward his bed before I could prevent him. That meant a trip to the ER and 11 stitches to close the wound.

In 2010 he had 17 brain attacks, during which I must sit beside him to prevent him from falling while he is out of his mind. He tries repeatedly to stand, and he can’t. He’s confused and disoriented and usually aphasic. Each attack leaves him weaker and less cognitively functional.

On June 27th, after five attacks in a week, he was back in the ER. This time they thought he was dying and he was admitted to the hospital for palliative care only. But a few days later, he began eating. I had been fully prepared for his death and not prepared for ongoing more of the same.

My manic phase became almost constant tremulousness when I am at home, and sometimes when I’m doing something scary for the first time, like driving to the airport to meet arriving family. Especially at home, where I am most of the time, I’ve been extremely nervous and wound up tight.

During November and December Ernie had six brain attacks and I began to feel on the edge of hysteria, all the time. My hands tremble visibly and when I talk to people, I stammer and stutter. I began to fear that, under the stress, I might succumb to ME-CFS again. I knew I was breaking down.

The problem is that Ernie is relatively self-sufficient when he is not in an attack. I don’t need any help and I can leave him at home alone. Anyhow, there’s no one who can come immediately while he’s having an attack, except Charlestown’s Emergency Medical Services. All they can do is take him to the ER, which we agreed not to do again. There is no treatment.  There’s nothing anyone else can do here. Only I know how to manage him. Since the attacks are completely unpredictable, no pattern, I can’t schedule help if I wanted to.

In desperation, two weeks ago I  made an appointment with our social worker. She said, “You can’t handle this. He has to go to the care center (nursing home).” I visit at the care center three days a week, and have been doing so since February 2009. I know how bad it is to live there.

Then I saw my doctor. She prescribed alprazolam to calm me down. She also said Ernie would have to go to the care center. At that prospect, I was feeling even sicker. But what would happen to Ernie if I collapsed?

I had to do something, so I made an appointment with the  Director of Nursing at the care center. After hearing about Ernie’s condition, she said, “He doesn’t belong in the care center. He can go to assisted living.”

Wow! There’s a huge difference in the quality of life possible at assisted living as compared with the care center. He can maintain more of his normal routine, have much more autonomy; and when he’s having an attack, a staff person will be sitting with him.

We (Ernie and I are doing this together) are in the process of “transitioning” him from our apartment to a studio apartment in assisted living. I don’t know how long this process will take. Already, though, I am less “nervous”, not trembling as much, and feeling enormous relief that he will not be in the care center. At least for now.

So all the while that I have been having fun and adventures in 2010, at the same time I’ve been having a really hard time. Joan Didion wrote of the year after her husband died immediately of a heart attack, that it was The Year of Magical Thinking. Queen Elizabeth II spoke of her “annus horribilous” a few years ago. In 2010 I had a year of living on the edge.

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