We know that 76,000 Canadians are diagnosed with dementia every year and that one in five of us have experienced caring for someone with dementia. The Eusanio sisters share the story of their father’s suffering through dementia and why they now advocate for advance requests for MAID.
Three years ago, we were thrown onto a ‘path of chaos’ that we were unprepared for.
Our father was diagnosed with Lewy Body Dementia and, since then, the road has been filled with heartache, frustration, anxiety, and fear. He regularly experiences traumatic hallucinations where he believes he is in danger, has lost much of his mobility, and now is restrained in a wheelchair in a long-term care facility. His dementia has progressed to where he often does not recognize us and his speech is impacted, causing further isolation.
This seemingly impossible situation motivated all of us to speak to our health care providers about options, should we ever receive a similar diagnosis – could we put in writing that we want a medically assisted death (MAID) if we too develop dementia? Each of us were met with the same response: “Advance requests for MAID are not legal in Canada.”
So now, we advocate for change. While it is too late for Dad – he will continue to suffer this frightening disease – we want advance requests for MAID permitted under the law as soon as possible.
We have written to every newly elected MP and shared the DWDC Advocacy Toolkit and letter writing tool with many others who also believe that advance requests for MAID should be legal.
Dad lives mostly in isolation at the facility and in his own mind. He has regular outbursts, and the medications are not controlling his violent hallucinations. The most we can do at this stage is sign a directive that allows Dad to die a natural death, possibly prolonged, such as not treating an infection or injury.
Amongst many diseases and catastrophic accidents, it is dementia – including Alzheimer’s - that people are most fearful of, and which motivates their desire for legalizing advance requests.
Without legal advance requests, the current laws do not allow us to be humane. There is an urgency for advance requests to enable people to make a choice before it is too late.
Tanya, Laura and Natalie Eusanio