Secrets, Lies & Chat

Tuesday, December 06, 2005

The Curse of Dementia

6 December 2005 – Today was just another day in my life. Up early, off to work, doing my best to concentrate on the jobs at hand whilst my mind wandered to a place where there is no light, no hope, just total frustration.

My mother, aged 88, resides in a nursing home Wellington Point, on the coast out from Brisbane. Wellington Point is a lovely place and, as you could judge by the name, the main street in Wellington Point leads down to the point, where Moreton Bay is on both sides of the tract of land. That part of Wellington Point is picturesque; a place where fishermen take their boats out to try their luck, where others fish from the small jetty, and where countless others sit on the grassed areas either inside gazebo like constructions or on the grass, and gaze across the Bay.

The tides are quite huge in this part of the world and can be treacherous. The water recedes quickly leaving many a hapless fisherman sitting in his boat on a sandbar, stranded until the tide turns and he can be freed. If you walk out to the edge of the water at low tide and the tide changes, you have to run to try and keep ahead of the water as it rushes back to shore. Wellington Point is also a haven for people of all ages who flock there with those kites on skis that fly across the Bay in the wind. There’s a restaurant that’s open long hours and it’s a beautiful place to sit and eat and drink and just gaze.

The nursing home isn’t on the point; it’s about 5 kms south of there (I think). I’m not from Brisbane so my sense of direction isn’t very great. It’s a shame the nursing home doesn’t have a water view as I’m sure it would enhance the lives of the inhabitants who all go there for the few years or months or weeks before they pass over to the next life.

When my mother became a prisoner there, in 2000, she had mild dementia. She had suffered a series of strokes in September 2000 and was assessed 24 hour care. As most people would realise, there are few families that can afford the money or the time to care for a loved one on a 24-hour basis. That’s where my brother and I found ourselves; in a position of having to allow our mother to be committed to a nursing home for the rest of her life.

When I first visited the nursing home I was appalled. It was in a very old Queensland mansion type home and because of the wooden floors and the age of the building, the smell of stale urine was always in the air. Visiting there was certainly no pleasure, living there must have been a nightmare. My mother wanted to go home most of the time during her first year there, and yet there was nothing my brother or I could do about having her go home to either of our homes. I lived in another state, in Sydney NSW, and although my brother lived quite close to Wellington Point, he knew he couldn’t take care of our mother. She had to be lifted as her ability to walk was limited after the strokes, and he knew that he couldn’t handle it. Two people always moved her around at the home.

In the beginning Mum was alert, taking in a lot that went on around her. She wasn’t like most of the others who sat around with their mouths open, eyes closed, like they were doped out of their minds. She watched the traffic of people who passed by her bed and she knew who did what and when in the home. The conditions were not the best, and yet we counted ourselves lucky that she had found somewhere to be placed that was close to my brother, as many people were being shunted off to homes that were an hour or more from their loved ones.

No one appeared to have any privacy, just a curtain pulled across between the beds on a veranda. What the conditions were like in other areas of the home I don’t know; I didn’t venture to find out. I would fly up to Brisbane, stay with a cousin, and visit my mother a few times over a few days before I had to fly home again. She was doing okay in the beginning and would read the magazines I bought for her. She loved flowers so I always arrived with the brightest coloured flowers I could buy. She had a TV set and watched and actually enjoyed watching shows that she knew.

Those days were short lived. With each visit I noticed my mother deteriorating. Where once she was alert and interested in her surroundings, she was now withdrawn and becoming more withdrawn each time. She rarely spoke or made any indication that she knew me. A new nursing home had been built just down the road from the old one, and now Mum had a lovely room of her own, with a window looking out on a garden, and a bathroom she shared with the person in the next room. She wasn’t reading anymore by this time, and she wasn’t doing much walking anymore either. My brother bought her a ubeaut airmchair that is electronic and would place her in a standing position with the push of a button. It didn’t get used much at all except as a place for her to curl up in the tv room where all the inhabitants were lined up daily so they were out of their beds. They stared at the TV, I’m sure not really knowing what they were looking at, and then at other times they would all be asleep, mouths open, in a state of comatose.

Each visit to see my mother became a nightmare for me. There were times when I would be at my cousin’s home for a day, even two days, before I would get up the courage to go and see Mum. When I did go, I couldn’t stay long. The walls closed in on me together with the despair and total frustration I felt at a situation I couldn’t change. I didn’t want her there and yet where else could she go where she was looked after 24 hours a day? She didn’t know me and in fact, thought I was her sister. She asked me how our parents were (my grandparents) and of course they had been gone for many years.

She called me by my aunt’s name, Joy, and she even showed me a photo of my aunt and uncle and said, “See, I have a photo of you and Doug”. When I tried to talk to her about my childhood she closed down the shutters. When I spoke of my children, the children she spent so much time with and loved, she thought they were her sister and brothers. I would always return to Sydney depressed and guilty that I was so useless to my mother and that I was so insignificant in her memories that she had totally forgotten who I was.

My brother, who visited our mother regularly, became her brother Eric. He and my mother had always been so close and I guess if any satisfaction could be gained from any of it, it was that she had forgotten who he was as well. As each visit came around, communication with my mother disappeared. I sat in her room with her, or in the TV room staring at the walls. Sometimes she would look at me with dead eyes, other times she would just look. Most of the time she looked away from me and would even turn her head away. If the TV were on in her room she would stare at it the whole visit and never look at me. When I first started to visit she would wave to me as I walked down the corridor. Now there was nothing.

In 2003 Mum, in her many attempts to escape from her bed (forgetting she could no longer walk) fell heavily onto the floor and broke her hip and her arm. My daughter and I flew to the hospital as soon as we received word of the accident and we stayed a few days. They intended to operate but because of her state of health, the operation was delayed. We returned home and some days later her hip operation was carried out. She had a broken arm for weeks before they attempted that operation. Remarkably, as close as she looked to death when I visited her before the operations, she recovered and her wounds healed quickly. Now she was almost totally bedridden as it was impossible to get a woman her age, and in her frail state, back up on her feet.

She was now lifted around with a big belt that went around her middle. It had two handles, one each side, and a nurse would get on each side of her and lift her. Once her arm healed she could once again feed herself, but the decline in her health began in earnest. Each visit from then on was a bigger nightmare for me. She was wasting away before my eyes, and with about three month spaces between visits, I noticed it dramatically. There was little if any communication then. She suffered another stroke before, during or after the fall and lost the ability to swallow. She had to be taught to swallow and gradually she spoke a few words again, a very few.

Three weeks ago tomorrow I received a phone call at work, mid morning, from my brother. He told me our mother was not expected to live long and that perhaps I would want to go to see her. I packed my bag at work, excused myself, and left. I rang my daughter on the way home and later that day the two of us climbed into my car and started the 1100 km journey to hopefully see Mum before she passed over. My one wish was that I could be with her when she left, as I didn’t want her to be alone. In spite of all the differences between us throughout my lifetime, now was a time to forget all that and be there for her. We left home at 4.30 pm Sydney time on the Wednesday and arrived at the nursing home at 4.30 am Queensland time (5.30 am Sydney time) on Thursday. My daughter rang the home a few times during the course of the trip and was told that they couldn’t say that Mum would be alive when we arrived.

We saw Mum as soon as we arrived and then pulled some chairs together and laid down best we could to try and get some sleep. We saw the doctor at 9.00 am and he told us it wouldn’t be long, but how long he couldn’t say. We visited Mum twice a day most days for eight days and some days she looked good, other days she looked terrible. It came to the crunch. I had to get back home and to work and my daughter had to get back home to her family and her work. And so, with heavy hearts, we packed up and drove home. I felt that during the eight days we had made contact with Mum. She actually held our hands and squeezed them, something she hadn’t done for a long, long time. She seemed as though she was pleased to see us walk in, even though there was no communication from her. She watched us quite a lot when she was awake, and if I was sitting in the corner of her room and my daughter was standing by the bed, I would see her moving her head so she could see me.

While we were visiting Mum we were told she had gangrene in her right foot, in a toe, and that it needed to be amputated. But the doctor told me he would not be doing the amputation as it would be too cruel when there was no future for my mother, she was after all dying. I despaired about her being left to die with her foot rotting off and I believed, and still do, that the kinder thing would be to prepare her for the operation and hopefully she would go to sleep and not wake up again. I was told emphatically no, it would not be done. Last week I learned that my mother has gangrene in her other foot, and much more advanced that in the foot where it’s in a toe. I was told today that she is being administered morphine so that the nurses can turn her in the bed and tend to her without causing her extreme pain. Again there is no chance of operating.

I know I’m not the only person to have to live through something like this and I won’t be the last. But I ask why? She is dying, there is no hope, and yet they let her lie there rotting from the feet up until she dies of natural causes. How can they call that natural? If she was a pet animal she would be humanely put down. But she is a human and therefore we can’t be humane.

I tried to speak to my brother about our mother and how I felt, but he became very upset, angry even, at me. How could I possibly think that putting her through an operation was the answer? I told him that as he was the eldest, and he was there close by Mum, it had to be his call. He wasn’t happy with that either but I had no intention of having an argument with him as I knew, from my visit and spending the eight days with him, that he wasn’t handling things very well at all. I didn’t wish to add to his pain knowing that both options are not options at all.

My mother would be devastated if she knew what she looked like now. She is like a child, a baby even. She is fed, bathed in bed, changed, her nappy changed, and she sleeps. That is all her life comprises of and they call it the right to life? I call it the right to die with dignity and without pain when there is no hope.

When will the world decide that euthanasia is acceptable and indeed, humane? I guess not until a long time after my mother dies and many more like her. I can fully understand now why people who realise they are terminally ill take their own lives. They are brave for everyone else who is a coward, and if there is a God, then I hope he blesses them with eternal peace. A nursing home is really just a waiting place for death, and those that reside therein have already left their bodies. My Mother left quite some time ago. The body I visit sure isn’t hers.

God save my mother because no one else is going to do it for her.

Vena McGrath
6 December 2005


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