As I watch my Dad slowly slipping away, I realize that each moment with him is more precious than the last. Today I spent an hour with him alone and I can still see remains of his humor, his wit and his sweetness. I still see the man that I adore in every fleeting glances. I live with the fear that I will walk in my parents home one day and he will look at me strangely, not realizing that I am his daughter.
I mentioned this to my husband one evening and he said, "I understand what that is like and I am sorry." My husband's father lived with us for ten years as he slowly but steadily loss his memory and gradually died with Alzheimer's. It is such a heartless and cruel disease. Not only does it take your memory, at the same time it takes your loved ones away. You become fearful, alone and scared because you do not know the people around you, where you are or what is happening to you.
What is happening to your body in the beginning is so disabling. My Dad is very weak, stumbles and really needs to be in a wheel chair now. However, neither him nor my mother are ready to face that fact. On Saturday while in our home he slept sitting on the sofa for about three hours. When my mother came to pick him up after working at the church, we could hardly get him up off the sofa. He was dead weight. My mother is a very small woman of approximately 80 pounds. My son had to help us to get Dad to the bathroom. I am very afraid that he will start to fall and pull my mother down with him.
I recently was part of an Alzheimer's panel for caregivers and have conducting many workshops for caregivers. I try to reach out to others in the community and share what I have learned. It is the hardest job in the world to care for someone who is suffering with a terminal disease. Alzheimer's is especially difficult because the patient has many years of being ambulatory and still communication is so difficult.
I am working on a article for caregivers for our local paper for the elderly caregivers. I am also volunteering next month to do art therapy at the Alzheimer Association. I will attach a link to my article here when I get it finished. I also will be writing an article that I hope to get printed on tips for caring for Alzheimer patients. I am trying to get more information out to the medical community because doctors, nurses and health care workers are still struggling with handling patients.
My Dad's brother is in a nursing home setting and his care has been terribly mishandled due to the medical staff ignorance. They have drugged him to suppress his behavior with very powerful meds. This would not be necessary if they understood the disease or were trained in how to handle patients. I have tried to intervene but have found that my involvement at this time in his care is more than I can take on. I love my uncle and he has no children but my parents and his brother are the ones in charge at this time. I can not take on that battle currently which I deeply regret. I just have to deal with my parents and there health problems as I can. We visit them everyday and do what they let us do.
I only hope for more moments with Dad, like I enjoyed today and record those in my memory to last a life time.
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