I have two different stories to tell about life and death.
My daughter Jos was in her thirties, living alone on Vancouver Island when she developed Frontotemporal Dementia (FTD). FTD is a brain disease that causes dementia. It is a different type of dementia where she lost her ability to speak, facial expressions, and to feed herself.
It started out with her behaviours changing. Her friends thought that she was becoming a negative person and didn’t want to be around her much anymore. One day they got together to discuss how Jos was changing and came to the conclusion that there must be something wrong with her. Two of them went to talk to her and found that she was sending large amounts of money to Nigeria. I figured it was around $50,000. She did not understand that this was wrong, and she was being scammed. Her friends decided to take her to the hospital. They admitted her under the Health Act. Her friends were not allowed to see her and that is when they contacted me. I flew to the Island right away from Saskatchewan.
The doctors, by then, believed that her problem was neurological and not mental and made arrangements to start testing her. They recognized the seriousness of her health and with me coming from two provinces away, they gave her top priority for testing to determine what was wrong. The neurologist advised us that it was a degenerative brain disease but was not sure which one. He tested for Huntington’s disease.
I packed her up and moved her back to Saskatchewan with me. The disease had progressed to the point where she was no longer able to care for herself. Two weeks later, the neurologist got back to me to say that it was not Huntington’s disease but it was a degenerative brain disease and referred her to a neurologist in Saskatchewan. After not hearing from the doctor for several months, I started calling his office. Jos’ behaviours were becoming more difficult to deal with. Eight months later, he agreed to see her. He said that she had a mental health issue and sent us to the hospital emergency to talk to the mental health specialist. He spent a little time with her and said that her problem was neurological and went to talk to that doctor. When he came back, he said that they could admit her to the mental health ward. I could not agree to this and drove the three hours back to our home. We were left with NO help and NOWHERE to go.
My daughter was exhibiting more and more strange behaviours. Some were dangerous and scary. She could not be left alone and it was difficult to take her anywhere because we never knew what she would do. I decided to take her to Edmonton, where we had family and had grown up. I took her to the emergency department. After 12 hours a doctor came to see her and advised that it was a mental health problem, no matter what I said. A neurologist also came and said it was mental health. They were not going to help so I went to the nurse in charge who also noted that it was a neurological problem and told her that I was leaving, and they would have to deal with her. It was hard to leave her there, but I had become desperate.
The next morning, I phoned to find out that she was admitted to the neurological ward for testing. After two weeks we finally received the correct diagnosis - Frontotemporal Dementia. We were told she had maybe six to eight years to live.
With prescriptions from the dementia clinic at the University of Alberta Hospital, we went home. I was fully prepared to care for her for the rest of her life. It was so much harder than I anticipated. After several months, I needed a break. I contacted social supports and was told that I could bring her to Battleford long-term care facility for three weeks. This was over two hours from our home. I brought her there and immediately they started to have problems with her behaviour. They started giving her meds. So much that she ended up in the hospital with her heart being affected. I found myself driving back and forth all the time. When we started to talk about her coming home, they said that I could no longer care for her alone and made arrangements to permanently keep her. This was too hard for me. A wonderful social worker suggested that if Jos could be cared for in a long-term care facility in Battleford, then the long-term care facility in the village where I lived should also be able to care for her. She required one-on-one care. Someone needed to be with her all the time. Arrangements were made and she was transferred to the facility in our village. I was happy that I could see her every day and know that she was getting good care.
As she started to lose more abilities, the staff in the facility did not like having to care for special needs and started to treat her poorly. When I spoke out about this to the manager and other Saskatchewan Health Care Managers, I was deemed as much a problem as Jos. They decided that they no longer wanted to care for her and wanted to send her back to Battleford long-term care or the Saskatchewan Mental Health Hospital. These were not acceptable options at this point. She had been in care for three and half years and I had noted that her disease had progressed quicker than anticipated.
We decided that the best option was to bring her home and do the best that we could. My husband quit his job and we hired someone to come into the house two days a week to help. We were able to get some home supports but everything takes a long time when you live away from a city. Jos had a Nurse Practitioner that prescribed medications recommended by the long-term care staff. No one who knew anything about FTD. Nothing was helping.
Jos was a person who lived every day to the fullest. She backpacked through 12 countries. She worked as a kayaking guide on the ocean in summer and on the ski hills in winter. She climbed mountains, mountain biked, skied, kayaked, hiked, whitewater rafting, even jumped out of a plane. Living the way she was with this disease is not what she would have wanted. She was not living, she was just existing painfully.
The last six months of her life were at home. She eventually forgot how to swallow. Watching her choke every time we tried to feed her or give her something to drink was heart wrenching. She eventually starved to death. This does not happen as quickly as you would think. I wanted so badly to end her suffering, but we had no options. We had looked into medical assistance in dying (MAID) but she did not qualify.
This is so important! I know she would not have wanted to live the way she was - no hope, no cure, no treatment.
Eight months later my father was showing signs of illness. He lived in Alberta and was just about to turn 88 years old. I left my husband and moved in with him to help him out and allow him to stay in his house until the end. The doctor said he had stage four cancer and had very little time left. The pandemic arrived while I was staying with him. The stress of losing my daughter, caring for my difficult dying father, being away from my home and husband and the pandemic became too much for me. We looked into LTC but with the pandemic, it would have meant sending him away to die alone. He probably didn’t have more than a month left to live. Dad wanted to end his life. I told him about MAID and contacted the local coordination team so he could learn more about this option. I had to leave, and my sister and her husband came from B.C. to help him out until the end.
With the help of MAID, my father was able to die at home with dignity, his family close by and on his terms.
Thank you so much for what you do!
I hope the advance request for MAID initiative goes ahead for the sake of people like my daughter and others in similar situations. We need options so we and our loved ones don’t suffer needlessly.
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