I am Exhausted and Feel I have Used a lot of my Life on my Parent...
by Mary Grace
My mother, whom I (and many others) consider a great artist, has dementia... I don't know if it is Alzheimer's or not. She recognizes me and everyone else, etc. But, she is very demanding, partly out of necessity as she also has ankylosing spondylitis (Rheumatoid Arthritis of the spine, very painful, inhibits walking, etc).
She imagines things and projects realities that she either fears or desires. At times she will focus into reality and understand that she is exhausting my family and me and we need a rest, and that we are caring for her in the best way we possibly can. (She does have outside caregivers, bathers, etc., as she won some money in a legal negotiation some years ago that permits her to be cared for at home and mostly in the way she prefers).
I am the primary caregiver in terms of directing her care, hearing her demands, trying to convince her of the necessity of various acts, etc., though my cousin and many others also give her help and probably feel they are equally worn out by the caregiving they provide. They do receive pay for this and I occasionally will permit my mother to give me a gift of money for an occasion (birthday, anniversary, etc.) as I did before she was so "out of it," as one might say.
I love her, of course, and I admire her work as an artist, which is unlikely to be produced very much or for very much longer (I really ought to try to get her to do more work, though not sure she can). She did draw for a while last year. Periodically she gets pneumonia and has to go into the hospital for a few days-- we are going there today to get her out after about three or four days' stay.
My daughter is her agent for decisions relating to health care (i.e. if she is found in a coma, or her heart stops, my daughter is to make the decision). They agree that her life ought to be prolonged as long as possible, and I suppose she does not believe that I would honor her wishes in this regard, though I would in every respect-- because I have said, and she's probably heard me say, "I would not like to live in a coma, or in a state of profound dementia, or in pain, or in any way in which I would be a huge burden to my children." I wouldn't but I would honor her wish to remain alive as long as possible, as we did with my stepfather, who died in 2009 (He was hemiplegic and finally aspirated some food and seemed to be unable to breathe for long on his own after that).
I want to try to keep my mother going as long as she enjoys and wishes for her life to continue, but I am also exhausted and often feel that she does not notice or care that I am not as joyous about being her crutch as she is about my being there to support her. Part of it is that she abandoned me when I was 2 and a half to go off with another man, not my father, who cared for me most tenderly (Prospero to my Miranda), and then again when I was fifteen she had a nervous breakdown, and lay all day on her bed reading magazines and paperbacks and smoking.
I was very worried about the smoking, and both my father and I-- and even my younger brother-- would get up in the night to make sure she was not dropping her burning embers into the bed.
Often she did and burned herself on several occasions... a long story-- we lived in a house with a wood burning stove...
So, there is a background of my having been a caregiver to her at rather young ages before, and it makes the expected, or reasonably expect able, caregiving now more difficult. I do care for her and want her to be well, but I do not know how to manage the whole situation at times.
Yesterday my husband and I were away overnight for the first time in months (planned), and as she was ill, I called back. She expected me to come and get her yesterday (though the expectation was that she would leave today) and was very unhappy to learn that I did not plan to come and get her. I did go to the hospital to visit her as a result, and brought some magazines and so on which helped... but I was completely exhausted by the venture.
Now, today, my cousin and I are going to get her and bring her home. I hope all will go well, but am not sure how to try to manage the situation.
There is a fellow (caregiver, trained to care for persons with emotional and educational deficits)living in her basement who listens for her at night and comes out when and if she seems to need help.
She has LifeLine but I do not know if she would use it now or know how. I plan to show her again when we get home.
Are there such things as courses to train sixty-year old caregivers in helping to look after ninety year old parents and how to do this without losing one's calm and sense of sanity? I want to be kind and yet not be enclosed by her entirely. Would be grateful for any advice.