The End Game March 31, 2012
It's early in the morning, I can't sleep so there is quiet time to write a quick note to talk about how things are going around here during this bizarre, challenging and almost magical time.
The backstory is that the doctors have said very clearly that Ian's heart problems and recovery from his stroke are not going to get better, only worse, and suggested we put him in a long term care facility. None of our family wanted that outcome and Ian would have hated being in what he calls The Waiting Room so we decided to bring him home knowing there is no timeline and that it will be a difficult process to manage but a good one to do.
Thus, I brought Ian home on this past Monday afternoon with hired 24/7 home care help. Rather I hired and he is beginning to accept having "the interloper" (his words) help him get up, bathe, change clothes etc. We installed him in a hospital bed compliments of the Red Cross and he can walk somewhat with a walker in the house, doesn't like it, resists, but we insist he use it, if only to reduce the chance of another fall. Fortunately Sierra is home with me and is a huge help in so many ways, especially decoding what is happening medically. So, I now have a house run by 3 women supporting Ian who is present, sweet, grouchy and funny some of the time each day and off in stroke/dementia/heart failure land much of each day.
One of the things I have observed is that time is completely different for Ian and thus, for us. He will still rise to an occasion and be his usual charming self with a visitor but mostly he sleeps a great deal, moves very very slowly and is eating less and less and drinking very little fluid. My Jewish Mother instincts are to keep nudging him to eat and drink but Dr. Sierra and our GP say, offer but don't keep offering. Hard for me to do after all these years but I promised last night to back off. I gather not eating is one of the ways he can still exert some control over his life. In fact, I think the loss of control over one's life must be the hardest thing about the process of dying from a chronic illness. Little by little you can't do this or that. Must be frustrating. I see that in our situation because the times Ian gets grouchy he is resiting having to accept help.
So our little world is quiet, insular, with bursts of normalcy by times. The ocean is always present, the ducks are here, the weather is still cold and wet for the most part although my daffodils are out, camellias are blooming and the rhodos have big fat buds. I've had two sets of garden angels come and help me turn over my veggie beds and I finally ordered my seeds. Sierra works on research papers and we take a long walk each day. Our helper takes time out to walk and explore the island which she seems to like which makes me think she will stay because it is not easy to care for our patient. It is a pleasant time, almost, but I keep thinking this isn't happening to me, it isn't my life and that I will wake up from this horrible dream. Nice fantasy but untrue.
I read a book a year or two ago by Joan Didion, The Year of Magical Thinking, about Didion's reportage of her reactions during her annus horribilus - disbelief, denial, attempts to go back in time and re-play events so that they turn out differently. This is what is going on inside my mind - the what ifs, the indescribable sadness and the exhaustion. I found a quote in her book last night which so aptly expresses what is going on for me,
Those moments when I was abruptly overtaken by exhaustion are what I remember most clearly about the first days and weeks. I have no memory of telling anyone the details, but I must have done so, because everyone seemed to know them.
I told the other "kids" to come now rather than wait; they start arriving home next week. Cynthia plans to stay for several weeks which will be a help because Sierra and I can use a break. Hilary is coming for a week and Omar for five days so we'll all be together for a bit which they really want to happen. Difficult to get all of us in the same place because we are all so far flung. I have called in help from friends and various children will stay in extra bedrooms nearby. Don't know what we'll do about the noise from all of us but yesterday I did a big veggie shop and Si did an archeological in the back of the fridge clucking about my veggie shopping habits. It felt normal and made me laugh.
So, all this is to say that this is a very challenging time and sad but I am doing okay. By that I mean I am able to put one foot in front of the other, still laugh occasionally, grieving while enjoying the remaining sweet moments. I have help, Peets coffee and hopefully we'll get some sun in April.
The backstory is that the doctors have said very clearly that Ian's heart problems and recovery from his stroke are not going to get better, only worse, and suggested we put him in a long term care facility. None of our family wanted that outcome and Ian would have hated being in what he calls The Waiting Room so we decided to bring him home knowing there is no timeline and that it will be a difficult process to manage but a good one to do.
Thus, I brought Ian home on this past Monday afternoon with hired 24/7 home care help. Rather I hired and he is beginning to accept having "the interloper" (his words) help him get up, bathe, change clothes etc. We installed him in a hospital bed compliments of the Red Cross and he can walk somewhat with a walker in the house, doesn't like it, resists, but we insist he use it, if only to reduce the chance of another fall. Fortunately Sierra is home with me and is a huge help in so many ways, especially decoding what is happening medically. So, I now have a house run by 3 women supporting Ian who is present, sweet, grouchy and funny some of the time each day and off in stroke/dementia/heart failure land much of each day.
One of the things I have observed is that time is completely different for Ian and thus, for us. He will still rise to an occasion and be his usual charming self with a visitor but mostly he sleeps a great deal, moves very very slowly and is eating less and less and drinking very little fluid. My Jewish Mother instincts are to keep nudging him to eat and drink but Dr. Sierra and our GP say, offer but don't keep offering. Hard for me to do after all these years but I promised last night to back off. I gather not eating is one of the ways he can still exert some control over his life. In fact, I think the loss of control over one's life must be the hardest thing about the process of dying from a chronic illness. Little by little you can't do this or that. Must be frustrating. I see that in our situation because the times Ian gets grouchy he is resiting having to accept help.
So our little world is quiet, insular, with bursts of normalcy by times. The ocean is always present, the ducks are here, the weather is still cold and wet for the most part although my daffodils are out, camellias are blooming and the rhodos have big fat buds. I've had two sets of garden angels come and help me turn over my veggie beds and I finally ordered my seeds. Sierra works on research papers and we take a long walk each day. Our helper takes time out to walk and explore the island which she seems to like which makes me think she will stay because it is not easy to care for our patient. It is a pleasant time, almost, but I keep thinking this isn't happening to me, it isn't my life and that I will wake up from this horrible dream. Nice fantasy but untrue.
I read a book a year or two ago by Joan Didion, The Year of Magical Thinking, about Didion's reportage of her reactions during her annus horribilus - disbelief, denial, attempts to go back in time and re-play events so that they turn out differently. This is what is going on inside my mind - the what ifs, the indescribable sadness and the exhaustion. I found a quote in her book last night which so aptly expresses what is going on for me,
Those moments when I was abruptly overtaken by exhaustion are what I remember most clearly about the first days and weeks. I have no memory of telling anyone the details, but I must have done so, because everyone seemed to know them.
I told the other "kids" to come now rather than wait; they start arriving home next week. Cynthia plans to stay for several weeks which will be a help because Sierra and I can use a break. Hilary is coming for a week and Omar for five days so we'll all be together for a bit which they really want to happen. Difficult to get all of us in the same place because we are all so far flung. I have called in help from friends and various children will stay in extra bedrooms nearby. Don't know what we'll do about the noise from all of us but yesterday I did a big veggie shop and Si did an archeological in the back of the fridge clucking about my veggie shopping habits. It felt normal and made me laugh.
So, all this is to say that this is a very challenging time and sad but I am doing okay. By that I mean I am able to put one foot in front of the other, still laugh occasionally, grieving while enjoying the remaining sweet moments. I have help, Peets coffee and hopefully we'll get some sun in April.
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