Rocky Start
I was so optimistic that respite care would be good for both Mother and me. We had a rocky start.
Today is Sunday. Mother has been in respite care for six days. I stopped in Thursday during the dinner hour. She was at a table on the memory-impaired floor. I had thought they were taking her downstairs for meals where she could socialize with those who were not late stage dementia. She was "helping" two women who could no longer eat by themselves. Their heads were down; there was no communication at this stage in their disease. At first, I found it fairly hard to watch. It is my future. I was overly curious at watching my mother. I was reassured by the care managers I saw there. The sleeping disinterested person had been replaced by smiling faces, saying kind words to those on the floor.
Mother was clean and dressed, but the light was gone from her eyes. She seemed depressed to me. I told her again that I was working hard, which was true. That I had a meeting out of town the next day, which was true.
The first night I visited and found the sleeping attendant; she begged me to take her with me. She didn't notice the sleeping attendant; I did.
"I don't want you to just leave me here," she said. Going to assisted living in the early stage was something she simply refused to do. That's why I built an addition for her and for my dad to live with me. That first night I promised her it was temporary; that I needed to do it for a couple of weeks while I worked very hard. As I tried to explain it to her, I was so aware of the limitations of providing comfort through explanations with the memory- impaired. It is so difficult to try to calm and reassure those who can't remember and who are losing cognitive skills.
I got eight hours of sleep Friday night without a mild sedative. Maybe a first in a year and a half... and I felt rested yesterday when I awoke. I wanted to go visit my mother, but I resolved yesterday to do what I believe I need to "restore and renew." I am going to try to stay away despite the guilt I feel.
If I visit her, I will see her sadness at being where she is. I have to believe for my own healing that she will be cared for. Not the way I might care for her... but my way of caring for her has made me a basket case. There may be a lesson there, too.
Coincidentally, there was a story called "Movie Night" in the Washington Post magazine this week. It was good for me to read this. Friends gather for movie night with an ALS patient for an evening of compansionship. Yes, her disease is highly advanced. But, her care network is also extensive.
One brother takes care of the finances; another brother helps with lawn care. Three friends who are master gardeners help with the yard. Six caregivers are on the payroll.
"'One of the nice things about her arrangement is that her family and friends are nearby and emotionally supportive without having to be involved in mundane things like showering or toileting,' says Vern Juel, who is Margy's neurologist. 'It seems there is a lot of stress the develops when that boundary comes down, and unfortunately most people's resources are such that they have to rely on their family for those things.'"
Wow. Maybe I'm not crazy.
I am an only child. My father, who was my mother's primary caregiver, died one year ago. I am doing it all. I use a wonderful day care program provided as a fee-based county service four days a week. But I also work to pay for my own health insurance, mortgage, and lawn care; I do not have the option of not working. I was hoping respite care once or twice a year could be one of my supporting elements. Now, I don't know. Today, I am not ruling respite care out despite my mother's personal distress at being there. I don't know how I will feel about it tomorrow or next week. When I see her, I have learned that I will feel a tremendous sense of guilt.
If I back off a little bit, will she adjust and become her happy, sweet self in that environment? Or, will she become angry, distrusting, and depressed? I don't know. I know I need this time away and the only way I may be able to manage it is by not seeing her for the next week.
I was so optimistic that respite care would be good for both Mother and me. We had a rocky start.
Today is Sunday. Mother has been in respite care for six days. I stopped in Thursday during the dinner hour. She was at a table on the memory-impaired floor. I had thought they were taking her downstairs for meals where she could socialize with those who were not late stage dementia. She was "helping" two women who could no longer eat by themselves. Their heads were down; there was no communication at this stage in their disease. At first, I found it fairly hard to watch. It is my future. I was overly curious at watching my mother. I was reassured by the care managers I saw there. The sleeping disinterested person had been replaced by smiling faces, saying kind words to those on the floor.
Mother was clean and dressed, but the light was gone from her eyes. She seemed depressed to me. I told her again that I was working hard, which was true. That I had a meeting out of town the next day, which was true.
The first night I visited and found the sleeping attendant; she begged me to take her with me. She didn't notice the sleeping attendant; I did.
"I don't want you to just leave me here," she said. Going to assisted living in the early stage was something she simply refused to do. That's why I built an addition for her and for my dad to live with me. That first night I promised her it was temporary; that I needed to do it for a couple of weeks while I worked very hard. As I tried to explain it to her, I was so aware of the limitations of providing comfort through explanations with the memory- impaired. It is so difficult to try to calm and reassure those who can't remember and who are losing cognitive skills.
I got eight hours of sleep Friday night without a mild sedative. Maybe a first in a year and a half... and I felt rested yesterday when I awoke. I wanted to go visit my mother, but I resolved yesterday to do what I believe I need to "restore and renew." I am going to try to stay away despite the guilt I feel.
If I visit her, I will see her sadness at being where she is. I have to believe for my own healing that she will be cared for. Not the way I might care for her... but my way of caring for her has made me a basket case. There may be a lesson there, too.
Coincidentally, there was a story called "Movie Night" in the Washington Post magazine this week. It was good for me to read this. Friends gather for movie night with an ALS patient for an evening of compansionship. Yes, her disease is highly advanced. But, her care network is also extensive.
One brother takes care of the finances; another brother helps with lawn care. Three friends who are master gardeners help with the yard. Six caregivers are on the payroll.
"'One of the nice things about her arrangement is that her family and friends are nearby and emotionally supportive without having to be involved in mundane things like showering or toileting,' says Vern Juel, who is Margy's neurologist. 'It seems there is a lot of stress the develops when that boundary comes down, and unfortunately most people's resources are such that they have to rely on their family for those things.'"
Wow. Maybe I'm not crazy.
I am an only child. My father, who was my mother's primary caregiver, died one year ago. I am doing it all. I use a wonderful day care program provided as a fee-based county service four days a week. But I also work to pay for my own health insurance, mortgage, and lawn care; I do not have the option of not working. I was hoping respite care once or twice a year could be one of my supporting elements. Now, I don't know. Today, I am not ruling respite care out despite my mother's personal distress at being there. I don't know how I will feel about it tomorrow or next week. When I see her, I have learned that I will feel a tremendous sense of guilt.
If I back off a little bit, will she adjust and become her happy, sweet self in that environment? Or, will she become angry, distrusting, and depressed? I don't know. I know I need this time away and the only way I may be able to manage it is by not seeing her for the next week.
posted by BK Kincaid at 6:56 AM
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