Invisible no more

Mom is learning to use her iPad to have face to face conversations with her children. "I love to hear my children's voices". She is always calm after she spends time with one of her kids.

Invisible no more.

I am not angry at my Mom. She is aging and losing ground with each passing day. She is aging as gracefully and with as much good humour as she can muster. She works hard to maintain her independence, even as her strength declines, and she copes with more aches and pains. I admire my Mom and I am happy to take care of her.

The fact is, though, that I don't have much choice. My Mom is utterly frail and vulnerable. If she was left in the care of an institution, she would not be able to defend herself, or activate necessary services on her own behalf. She would be a dependent of that institution, its policies, its governance, and the ethical and moral values that guide the employees that are paid to provide services to my Mom.

My beloved Mother-In-Law was diagnosed with Parkinson's while she was still working full time. She was determined that she would not be a burden on her family (bookmark that point) and made all her own arrangements for her care as her disease progressed. She had health insurance and retirement benefits and she planned carefully for the days when she would no longer be able to care for herself. We talked to her about coming to live with us instead of putting herself into an institution, but she would not hear of it. We acquiesced to her wishes and eventually she gave up her apartment and moved into an assisted living facility.

My strongest impression when I visited her was heavy pungent odour of the air when I entered the facility. It was as if a window was never opened, and there was a pervasive smell of urine. I did not understand at the time, that the smell of elder urine is so strong because it is full of bacteria. It is strong smelling and the only way to keep the smell of urine from dominating the atmosphere is to empty the commodes and mop the floors, make sure the trash is sealed, and open the doors and windows regularly to let fresh air in.

My Mother-In-Law had not power to make sure the air smelled clean and fresh in her facility. It was heartbreaking to see her in this situation. She was a very dignified, refined, educated person with fine sensibilities and aesthetics. She was an accomplished amateur musician and a Dickens scholar. I could not ignore the smell of her surroundings and I could not forget.

It is the combination of those first hand experiences (of the smell of an eldercare facility, the depression I saw my Mother-In-Law live with as her life space became smaller and less personal), in combination with stories I read (of institutional failure to protect and care for the residents - elder abuse, failure to maintain life during a natural disaster, or isolating elders from their families during covid), that has contributed to my perception that there is no institutional setting that would give my Mom the health and well being that she gets from being home with me. I am not angry at my Mom. And I do not regret the decisions I have made to this point in time. However, I am angry at the paucity of choices and that the choice I made renders my work invisible in an economic and social system that puts high value on the visibility of work.

My work as a caregiver is invisible no more.