Making the best of it

 

We didn’t plan to become unpaid family caregivers. Forty-five years ago, as we plotted our careers for early retirement, we didn’t factor in taking care of our 92 year old, mentally ill, developing dementia, end stage COPD, arthritically disabled mother. We may not have had concrete plans at that stage of our lives, and we also did not know what caregiving was, what it meant to be a family caregiver, or what it meant to be an unpaid family caregiver.

This is family life. This is the life of a family over decades. This is the end of a long life that waited many years to come home from the mental health group home system.

We thought we were prepared for Mom to come home. We tore out the bathtub and installed a no barrier shower. We emptied out our basement suite and set up a new bedroom for Mom and a guest room for unpaid family to come and stay with Mom. We knew that Mom could not be left unattended for any extended length of time. We knew that Mom was too frail to continue living in her group home and her next step was to be placed in a government-funded long term care facility. We talked to her doctor about our plans and asked if this was something other families were doing. He answered us in the affirmative, this was something other families were doing, bringing their frail elders home instead of putting them in an institution.

We did not know that Mom would be diagnosed with pneumonia within two weeks of moving home and put on the palliative care registry. We did not know we were going to fill out the forms with Mom for an “Expected Death at Home”. We knew Mom did not want to go into a hospital, or any other institution. Now that she was home, this is where she wanted to stay. She insisted we fill out the Do Not Resuscitate form so that no one would take her to the emergency room if she was in difficulty.

We did not know that over the first year of having Mom home that she was going to recover from pneumonia, that she was going to quit a forty year pack-a-day smoking habit, that we were going to recover her hearing, that we would finally remove the fungal infection from her feet, that we would restore her digestive regularity and end both the issues of constipation and heartburn. 

We did not know that she would be diagnosed with dementia at the same time we found the pneumonia. We did not predict the progress of her dementia, especially in relation to her pre-existing mental illness. We did not know how to help her when she felt agitated, or weak, or had an accident at the toilet, or had difficulty turning over in bed.

We did not know that she came home with a urinary tract infection that cleared up with the pneumonia. We did not understand the relationship between the pungent smell of urine and the presence of bacteria in an elderly body. We had to learn how to manage the life around the commode, keeping an inch of water with a squirt of dish soap to reduce the smell. We learned to mop the floor at least once a day, sometimes more.

We did not know how disabled Mom’s knees and feet were by arthritis, that she could no longer walk very far without experiencing excruciating pain. We learned how to use a wheelchair, how to navigate stairs, how to get in and out of vehicles, the limitations of the wheelchair taxi, and the best ways to use the local walk-in clinics instead of making the difficult trip to her doctor’s office. We learned how to help Mom in and out of chairs, what seating was most safe and comfortable for her.

We did not know the toll unpaid family caregiving was going to take on our household, on our capacity to earn wages, on our ability to find employment.

This dispatch has gone on longer than I thought it would. This does not address all the dimensions of unpaid family caregiving, it only scratches the surface of a few things that came to mind as I set out to write this piece.

The main point is that we did not plan to become unpaid family caregivers when we set out on our life journey. But that is what we are now. And so we make the best of it.