Without being arrogant I consider myself somewhat of a pioneer. When my Dad was diagnosed with Alzheimer’s disease I knew nobody who either had it or had a close relative with it. A few friends of my mother had it but that was over 20 years ago. The closest I had to a connection was my friend Joseph from work who had a parent go through it. He warned me that it was a slow and horrible disease (I don’t know any “good” diseases) and that it was going to be rough. In fairness I already knew it would be rough because I paid attention to news reports and other limited literature on the subject. It was how I recognized the signs in the first place and why I initially took Dad to the doctor. That’s another story though.
My point is..I had no support group. I had a few family and friends who would ask from time to time how I was and a few who would look out for Dad. But I had no group of people to bounce ideas and experiences off. My therapist was pretty good in letting me know what to expect and directing me in the right direction. However I was not able to join the groups. Between work and home life and in trying to keep my own sanity I never got around to officially joining Alzheimer groups.
I am writing this from Florida. My mother is recovering from something that robbed her of her hearing. Now she has been showing signs of gradual hearing loss for the past few years but if you talk to her WE don’t speak clearly and I talk too fast (funny, that’s what Dad said). Thankfully Mom was treated for an infection and regained some of her hearing. I am realizing again the importance of support groups. Mom had picked up a virus or something in May and couldn’t even hear me when I called. I had to stay in New York during this period and it was killing me. I will tell you, a parent dying is bad but dealing with them sick and suffering is worse. During this past month I could have used a support group on elder care. It sounds hokey (and forgive me if this entry is choppy but I have had several distractions) but trust me they work. I think my blood pressure would be about ten points lower if I had a network of people who have been in my shoes.
I recently suggested support groups to a man who is probably my best friend. His mother, a lady I consider my adopted godmother, was diagnosed with vacuolar dementia. The symptoms mimic Alzheimer’s disease. She is showing some of the signs for Alzheimer’s. Even though I have only known this lady for about 14 years I don’t think she is the same personality wise. I have seen the changes. She is still the same wonderful person I met but she worries a lot more about things that shouldn’t matter. What really alerted me to a problem was a conversation I had with her this past Friday and she thought I was in the service. She couldn’t remember putting money in her top pocket. She kept asking if I was stationed in New York, then made a reference to her oldest child being dead (my friend reminded her that the son is alive). My friend is dealing with his own health issues and does a lot to care for his 77 year old mother, but the combination (with other things) has him stressed out. His doctor and I suggested support groups that could help him.
Support groups are nifty because they enable you to network and bounce ideas off another person. Most importantly they remind you that you are not alone. You will find people from all walks of life who are coping with the same (or similar) situation you are coping with and they can offer you advice as to how to make your experience more bearable. Like I said I had no group. I dealt with Alzheimer’s mostly by myself. I am dealing with elder care issues mostly by myself. This is not good because I am stressed and I honestly feel I am suffering with anxiety and mild depression. I cannot focus to do the things I really like (like writing).
As soon as I fully learn the technical parts of blogging I will post some links to support groups and have them all listed hopefully in my profile for easy access. In my sister blog on the homeless I will do the same for networks relevant to that subject.
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