Reply to Norman's question
Dear Helen,
Apologies for the "hijack" on your thread and for this second response.
I may be "overreacting" to Norman's message, but as he addressed his post only to me, "what is your experience", I feel I am being challenged rather than you being offered his reply to your thread. It is not my intention to offend, just responding to Norman as he asked.
My experience? As a grandchild of 8 I went to visit my grandfather in his nursing home and at 10 my widowed grandmother both at her home and in the nursing home. I was living abroad but had a close relationship with my grandparents and saw them regularly several times a year. This was in 1964 and 1967.
My parents had sat down with me to explain, using photographs of my grandfather (in his healthy days) to explain how AD deteriorates an individual and how he had physically and mentally changed. They talked about the place his was in. They spoke about what he could and could not do for himself, what equipment was needed to nurse him (wheelchair, hoist, hospital bed, commode etc) and described his personal effects in his room etc. Having told me all this, a few days later (time to digest the information), they showed me photographs they had taken of their visit with my grandfather, mother sitting next to him. He looked a whole lot thinner, his eyes more set as his face shape changed. A couple of days later, we went to visit him. He clearly did not remember me, could not speak well, needed spoon feeding and wiping as he dribbled. He shouted and screamed - I knew about that. It was not nice at all, but I held my father's hand. I could see my mother was upset - she was crying, silent tears running down her cheeks. She just sat and held her father's hand, stroking his forehead with the other and whispering comforting words to him. When we said goodbye to my grandfather, outside the room my mother turned to me and through her tears hugged me and said "thank you for coming to see my father. Even if he did not recognise you, it means a lot to me". I was 8 years old. My special grandfather died a few months later.
When my grandmother was "unwell" and still living in her own home, my mother explained that her mind was sick but her body was still well enough to live at home a while longer but that she needed everyone to help in looking after her. By then I could "compare" my grandmother's illness against my experience of my grandfather's. I had a lot of elderly relatives (my grandparents were born in 1878 and 1881) and became quite used to visitors who included "galoshes", extra spectacles, walking sticks and wheelchairs with blankets. I was given the role to make sure the blankets did not get stuck in the wheels, run and fetch whatever was forgotten etc and to turn a blind eye when shouting started.
When my grandfather died, my mother spoke of the good days of the strong man, talked about his life and kept alive the man that he had been. Of course we touched on the illness but it did not take over the fond memories. I learned an awful lot about patience, other people's pain (and my own).
By the age of 12 I had been to 6 funerals of people I loved, including my father who died whilst I cuddled in his arms. It was unusual, up to a point, but then again, that was life...
There was a woman neighbour who was a "raving lunatic" inasmuch as she was constantly bursting with anger and fired on a short fuse. She had no dementia, just a really foul temper. I could "avoid" getting in her way, because she wasn't family...
My grandmother? More of my grandfather's situation more prolonged, more intense, more painful. I was older, I saw more and understood more. I went to friends' houses where there were senile relatives, rocking endlessly in their chair, drooling, repeating the same words, over and over and over again. They didn't know me, but I remembered them when they used to peel an apple for me or fetch my friends from school...
Now I am 53, my children are 21, 23 and 25 and my granddaughter 8 months. They have all been included in my cousin's AD journey, 11 years of awareness and interaction for them. Sometimes, several months have elapsed between visits and the deterioration has been impressive. Even the baby is part of the situation: she cried at first when my cousin screamed but after being comforted and reassured, she has got used to the screaming.
I have learned a lot from my childhood and am still maturing...
How are we ever going to get rid of the stigma of Alzheimer’s unless we educate ourselves? Knowledge is power and “charity” starts at home. Of course, it is not for everyone, but this is “my experience” with my grandparents.
Martina