Timeline overview into deep caregiving


We did not know what we were getting into. 

We knew that Mom was aging out of her place in the mental health group home she had lived in for forty years. We knew that she had been assessed as mentally competent enough to become a resident in a long term care facility, if that was to be her next move.

In 2016 Mom had a health crisis. She was losing weight and complaining of stomach pain. My sister and I assumed the responsibility of getting Mom's paperwork in order - Power of Attorney, Will, and Representation Agreement. She ended up in the hospital and was diagnosed with an ulcer. After she was released from the hospital she had a bad fall and had to go back in for an injured knee. At that time we learned that Mom would no longer be able to go up and down the stairs to her second floor bedroom. Luckily, the bedroom on the main floor of her group home was made available and Mom moved in and stayed another six years in residence.

In late 2020 (Dec 16, 17) Mom had two falls in a row. She had to go into hospital for rehabilitation again, to recover her ability to walk. We knew that Mom was going to age out of her group home in a matter of months, not years, and started actively planning.

At this point we had decided that we were going to bring Mom home if it was at all possible. Throughout 2020 we had been dealing with Covid and accessing Mom in the group home to be able to help her with personal care and socializing. We renovated the bathroom in our basement suite for a low barrier shower and worked to finish other renovation projects upstairs to be ready for Mom to move in.

We notified Mom's doctor of our plans to bring her home and asked if there were other families bringing their frail elders home. The doctor said it was something that he was seeing and he started to make plans with us to switch her medical records, pharmacy deliveries and plan for upcoming medical tests after she moved home.

We notified administration at Mom's group home and they expressed sadness that Mom would be leaving, and helped us to prepare for her departure.

Mom moved home on November 1, 2021, her 91st birthday. She had been in a mental health residential group home since November, 1982.

Her doctor ordered a chest x-ray to check the condition of Mom's COPD. At this point Mom was still smoking a pack a day of cigarettes and was extremely weak and labouring to breath. The x-ray revealed suspected pneumonia and Mom was put on the Palliative Care Registry. As of the end of November, Mom was very ill with pneumonia and needed intensive nursing care from me. There wasn't anyone else to do it and I had moved her home. I was her primary caregiver, so I also became her nurse.

That was November 27, 2021. In the intervening year we got Mom to quit smoking, she was doing her exercises, and she was enjoying life at home with dogs, her grown children coming and going, and the day to day activities of an active family life.

I have been responsible for the overall program of care and support that keeps Mom in good shape. We have restored her hearing by getting her ears cleaned out, she easily weathered a bout of Covid last November, and we are now coping with a very sore, arthritic shoulder. There is a team roster of family trained to help Mom after she has a bowel movement.

Now we are entering our second year of full time family caregiving. Our. family is weathering the impacts of socio-economic vulnerability that come with taking on the health and well being of a frail elder without adequate external supports.

Given Mom's current state of health and strength, she will likely be removed from the Palliative Care Registry in May and put onto Long Term Care In-home Support. We have no idea what this change will entail, apparently there is a financial implication that will no doubtably have an impact.

All this is to say that the caregiving journey is mysterious, unpredictable, and apparently there aren't any professionals in the medical system that can provide support to prepare for the changes that lie ahead.

We have millions of caregivers in Canada. Surely we can do better to help them prepare, support them to do the work, and help them navigate the difficult path when their caregiving is no longer needed.

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