Alzheimer’s Disease is often called THE LONG GOODBYE and that is such an appropriate name. I have called it the slow death also. Carol has had beginning symptoms of AD since 1996 but real debilitating and visible actions of her daily life since about 2003-4. She first started with just short term memory but long term memories also came along and that was probably began THE LONG GOODBYE. But I could not carry on a conversation with her on our beautiful past activities. Names of people, places, things, etc. were a daily occurrence. This was when I first began to really feel that we were loosing part of her living person. I no longer had the girl I had married. A new girl was beginning to take shape. I inherited a great love for this new person but there is no doubt that it is a new person. Or at least a new personality.
A book has been written by this same name, “THE LONG GOODBYE”, written by Patti Davis about losing her father, Ronald Reagan to AD. I have not read it but will try to do so. So many illnesses take away only physical things but do not really affect the personality of the patient. AD strips the patient of their cognitive abilities as well as all the personal attributes. They also loose smell, taste, and later even hearing, and eating.
Some of the other caregivers I communicate with talk about being a “married widow”. Carol and I no longer talk about husband/wife things like the children, grandchildren, vacations, movies, entertainment, etc. We are no longer a typical husband and wife. I will never leave her and I have trouble hoping for a cure. I do hope for some kind of breakthrough that could return some of the brain functions that have been severely damaged. She takes medications to slow the disease down and I sometimes wonder if she would really have wanted to drag out what is now considered inevitable. But I continue to dance with the girl what brung me to the dance.
A book has been written by this same name, “THE LONG GOODBYE”, written by Patti Davis about losing her father, Ronald Reagan to AD. I have not read it but will try to do so. So many illnesses take away only physical things but do not really affect the personality of the patient. AD strips the patient of their cognitive abilities as well as all the personal attributes. They also loose smell, taste, and later even hearing, and eating.
Some of the other caregivers I communicate with talk about being a “married widow”. Carol and I no longer talk about husband/wife things like the children, grandchildren, vacations, movies, entertainment, etc. We are no longer a typical husband and wife. I will never leave her and I have trouble hoping for a cure. I do hope for some kind of breakthrough that could return some of the brain functions that have been severely damaged. She takes medications to slow the disease down and I sometimes wonder if she would really have wanted to drag out what is now considered inevitable. But I continue to dance with the girl what brung me to the dance.
Bill, lmohr from Joan's site. You are doing a good job informing the public about Alzheimers disease. I wish you both well.
ReplyDeleteThe Long Goodbye. Yes, it does seem that way at times. However, sometimes we just have to embrace where my Mom is NOW. Sometimes we feel that if we read ANY book on toddlers, it would relate with where she is right now. Today is Mother's Day. My Mom loves looking at pictures, and will look through magazines, photo albums and the newspaper throughout the day. It gives my Dad time to be on his computer, which is great! So, for Mother's Day I bought her 3 children's books. One with all sorts of pictures of cats, and places to pull and push which move parts of the cats. The other two have pictures of babies. They were a HUGE hit, especially one with babies. When my son and I picked them out, we almost felt a little insensitive towards my Mom - buying her little toddler books. But, it was a HUGE hit. She loved them. I think what it showed me is to embrace whatever stage we're in, go with it, and make the most of it! We feel guilty when we laugh, but we HAVE to laugh! The main thing is that I still have my Mom here. Would she want to live like this? No, not at all, but like my Dad said, we do our best to make her happy! God has allowed her to still be here with us, and we are blessed in so many ways because of that. Probably blessed in ways we don't even know yet!
ReplyDelete