Can We Please Advocate For Caregiver Support Without Demeaning Our Loved Ones?
On the eve of the first day of National Family Caregivers Month, I've decided to plant a stake in the ground for the dignity of our stories in the media. Here's what I read in my news feed this morning and what I wrote in response.
Although Francine Goldberg was once director of an Alzheimer’s support group in Montreal, nothing prepared her for her own mother’s dementia. Her mother Lily, now 91, was diagnosed with Lewy body dementia about three years ago, and by then was no longer able to live independently.
When Goldberg, an administrator of a downtown Montreal health clinic, brought her mother home to live with her, the learning curve was steep and the costs high, both financially and emotionally. She wished someone had warned her to get a mandate and a power of attorney to look after a parent’s affairs.
“The moment she came to my house, I was afraid to leave her alone,” Goldberg said, because of the unpredictability of the illness, which can cause psychosis, hallucinations and bizarre behaviour. For example, her mother sometimes threatened to break windows and slash her wrists. Goldberg has called the police out of fear for her mother’s life, and Lily was admitted to a hospital for emergency care more than once.
No one told her, Goldberg says, how to live with an appalling disease that changes a once kind and loving mother into an aggressive, hysterical woman, who throws things and yells obscenities and threatens to tell everyone that she is kept in jail against her will.
No one talked about the dirty diapers on the floor. No one mentioned the possibility of having feces thrown at you, no one explained how to coax a crying mother into the shower. She never foresaw having to rush home from work because the hired caregiver couldn’t cope.
Lily was rejected from a private nursing home because she was a difficult patient. Goldberg tried a public long term nursing facility, or CHSLD, but took her mother home again after she curled up on the bed and refused food.
Lily now lives in a public facility, which she believes is a lovely hotel.
“No one tells you about the overwhelming guilt,” Goldberg says.
I have been a family caregiver all of my adult life and I am the author of a book titled The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving. I applaud this series for shining a light on family caregivers and our need for greater support. I'm disappointed though, that existing bilingual supports such as The Caregiver Network (http://thecaregivernetwork.ca/) weren't mentioned and I'm especially disappointed in Ms. Fidelman's decision to highlight the sordid aspects of caregiving life and exclude the intimate, joyful moments such as this one where an Alzheimer's sufferer recognizes her daughter and tells her, "I love you." https://www.youtube.com/watch?v=xKBcE4KhFPc. A life of caregiving includes the full range of human emotion and we must tell the whole story - the difficult and the deeply wonderful. Caregivers need support and we need all levels of government and society to give us that support, because as Rosalind Carter said, "There are four kinds of people in the world: Those who have been caregivers, those who currently are caregivers, those who will be caregivers and those who will need caregivers." But in advocating for ourselves and our loved ones, we must uphold the dignity of our vulnerable family members whom we love and protect.