A marriage is a partnership for life. All the good and all the bad. Micheline and Fernard have had a good life, traveling the world, having adventures. There has been a lot of good.
Two years ago at 85 years old, Fern fell fracturing his ribs and a vertebrae. While he was recovering in the hospital he was treated by a geriatric specialist who diagnosed him with dementia. Since being discharged, life has been very different for the two of them. Now living in an apartment in the East End of Ottawa they are receiving support from Carefor personal support workers (PSWs), three mornings and four evenings per week.
In that time, Fern’s dementia has accelerated causing him to become more dependent on Micheline and her on the PSWs for support. “He thinks that (the PSWs) stay too long, but for me it’s too short”, says Micheline. Her attention is now devoted to making sure he doesn’t fall, that he is fed, that he is safe. They have gone from eating and living in synch to two people on different rhythms, one reliant on the other. “I’m stuck. I have much less independence. I had friends, but I have to think about him all the time…This is why PSWs like Elisabeth are so important,” she says. “I can go out for coffee. I need that. I need some time off.”
Micheline’s reality is that of many caregivers of people living with dementia. The love is there, but the person the love is for has changed, causing the relationship dynamic to change. What was once a partnership has become a relationship of dependence with Micheline’s attention changing from the world around her to her husband. She has to monitor him while doing simple tasks and admits to getting frustrated when he does things so differently than he used to. “I have to remind myself, it’s not him. It’s the dementia.”
Although Carefor’s personal support workers come to their house and work with Fern, so much of their work is in support of Micheline, allowing her a moment to reconnect with herself and her own life. It’s these moments that are a lifeline to caregivers that allow them to return home with a fuller tank, ready to continue to care for their loved ones. “I can go out and know that he’s safe and not going to fall. (The PSWs) really take care of us. They’re out of this world.”
So much of the challenge that comes with being the caregiver for someone living with dementia is acceptance of a new reality – remembering the past without being bound by it; not feeling like what you had is what you’re supposed to always have. “He was a brilliant man,” remembers Micheline. “He was a whiz with computers, but now he doesn’t understand what the internet is.”
It is obvious that Micheline struggles with what the past two years have given her, but she also accepts it. “It’s hard not to share my life with him like I used to. I know he’s not going to get better,” she resigns. But follows with, “I’m as happy as much as I can be. I accept it.”
When dementia visits upon someone, it visits upon a family. It requires relationships to change. Those who do well with these changes are those that accept them and find the beauty in the moments they have. They might come with decreasing frequency, but they are there. One thing that makes them easier to spot is a break to change your perspective.
Carefor’s PSWs offer that break. They give caregivers and loved ones a moment to fill their cup, to take care of themselves and return ready to keep giving. Carefor may be contracted by the Local Health Integrated Network to support people living with dementia, but we know to do that we must support their caregivers – so they can keep finding the good in their lives.