A personal story of sadness
When my Dad suffered his stroke he remained in hospital for 6 months due to his quite serious condition. His release was predicated on his home being made accessible for him in his wheelchair; his paralysis was on his right side and walking was very painful for him. Complicating things was the fact he had been scheduled for hip replacement at the time of his stroke and that of course would not be happening now. So he was in pain when he walked - yet walk he must to maintain circulation and try to get his life back.
Mother finally agreed to let them build a ramp up to the front door so a wheelchair could gain access. She agreed to have her little tables and other items moved out of the rooms Dad would be moving through so his wheel chair could manoeuver. She agreed to pull up the carpets exposing the gleaming hardwood floors, she agreed to everything they asked of her in order to get permission to bring Dad home again. He was released from hospital, he was brought home and as soon as the last person left - she returned everything to its original position. So Dad could hardly, if at all, get around in his wheelchair and thus was totally dependent on her.
The large workshop located at the back of the property was where Dad had enjoyed the best days of his life. Now he would dream of the things he had made there; he visualized his tools, the workbench, the chair he sat in when friends would come to visit and look at the wonderful things he made. He would have been so rejuvinated at being able to go out to the workshop, maybe stand at the workbench and do a few of the things he could still do. It would have provided him stimulation, occupation, made him feel like a normal person for a while. But to get out there would have required opening a door in the wall of the den, building a ramp down to the ground and then a walk way to the door of the workshop. Actually this would have been a very simple thing to do - but it would have upset the house and so it was not done. The doorways were not widened either because that would have upset the house and so Dad couldn’t get into any rooms other than his bedroom and the kitchen and living room. The bathroom was off limits unless he walked and that was difficult for him. So Mother had him use a commode. This was humiliating for him but he had no choice, she was in charge of his care and claimed she didn’t mind.
They had arranged for a nurse to come in the morning to help Dad get up, dress and to the table. At night he came to help him undress and into bed. Every few days he was given a bath and once a week a physical therapist came in to work with him. Every six weeks he went back to the hospital to give mother respite from his care and during that time he was given a full battery of tests, all the therapy he needed and counsel. However the therapy stopped when he went home; it was just so much easier for Dad to sit at the kitchen table keeping Mother company while she puttered around with her cooking. I bought them a small tv to mount on the wall so they could watch their soaps; Dad had a small radio by his side and he read the paper, read his books - and sat there all day.
As time went on Dad because less and less fun to be around. He had always been a man of humour and people were attracted to him for his wonderful stories and his gentle, elegant manner. He spent more and more time alone as his mood darkened and he was depressed much of the time. He was ashamed to be seen in a wheelchair so refused to be taken for rides around the neighbourhood. His life had become reduced to 2 rooms and what he could see out the window. Mother had refused to allow them to take part in any stroke counseling so they never knew how much help and support was available to them. Dad could have learned this feeling of helpless despair was natural for someone in his condition. that there was hope and things they could do to make their lives easier.
It broke my heart to visit my parents and see Dad deteriorating. I tried everything I could think of; the medic alert for when Mom had to leave him alone to go shopping, a reclining chair so he could relax and watch tv in the living room. I tried to move furniture around so he could get around in his wheelchair; I moved stuff off the shelves near where he sat so there would be room there for his books and his cup of coffee. Nothing worked. By the time my plane had left the ground the medic alert had been cancelled, the recliner was used for something else, the shelves were jammed with trinkets again and the little table of nick nacks was back against the wall where the wheelchair would hit it. So I gave up.
This went on for 7 years and in 1998 my Dad decided he had had enough; he died in his sleep one night in August. He had been running a high temperature but Mother had decided it would go away, she could take care of it herself. When she wakened to find him cold beside her she refused to believe it and waited, as she had when she first saw his stroke symptoms. When they finally took Dad away that morning something broke in my mother and she could no longer create her own reality as she had done for so many years. Two months after he was buried she was diagnosed with 4th stage ovarian cancer and was gone 6 months later.
I have written of many other aspects here of how to address aging. This has been a very personal exercise. It has been so very clear to me how different my parent’s lives could have been; how much happier, lighter, joyful those last years could have been for them. Instead they were burdened, isolated, fearful and defensive. Fear and suspicion were what had moved and controlled my mother all her life and that affected very negatively how they lived their final years together.