Taking care of a loved one living with dementia is truly heroic.
Caregiving in general is so undervalued in our society. Our childcare workers and nurses are often underpaid for their work, but unpaid family caregivers are even more overworked and underappreciated. Whether their family members are living with chronic illness or disability, unpaid family caregivers take on a burden of responsibility that far outweighs that of paid caregivers.
Unpaid family caregivers generally observe no shifts, nor are they granted holidays. Their commitment is often 24/7, 365 days a year. Even if they are fortunate enough to be able to employ paid caregivers sometimes, they must carry the burden of responsibility for their loved one. The emotional labor of managing care and decision-making encompasses guilt for not doing or knowing enough, and shame for not being enough.
Neurodegenerative disorders like Alzheimer’s disease lead to unpredictable behaviours that make it difficult to ensure safety, even with the best of intentions. Our loved ones gradually lose the ability to take care of themselves, to make decisions for themselves, or even to recognize us. Which means that each time we see them, we are painfully reminded of how they used to be.
Caregiving requires sacrificing time, freedom, and opportunity. We family caregivers often have to defer or even give up on our own dreams, or even relationships. Sometimes we do so willingly, and sometimes out of a sense of duty or obligation. But either way, such sacrifice almost always goes unacknowledged.
Our commitment to caregiving is sometimes seen as noble, but more often family caregivers are marginalized. Or even pitied. In fact, there’s such a fine line between being noble and being a victim, that one could make the argument that they are not different.
In my experience, it comes down to our own attitudes. We get to choose to see ourselves as being worthy, and to embrace the lessons that caregiving teaches. Such as how to have compassion for ourselves, how to love unconditionally, and how to be proud of how we have chosen to show up for ourselves and our families. Choosing to play the victim only serves to give away our power to others.
Caregiving for a loved one living with dementia is inherently about uncertainty. And uncertainty is brave. What we know represents a tiny fraction of what we don’t know. We know that their condition will worsen, and we know there are no treatments or cures at present.
There’s an overwhelming amount that we don’t know, like how quickly they will progress, how soon we may need more help, what fresh disaster is waiting to happen, how long will this go on for – months, years?
To be a caregiver is to have hope, and being hopeful in the face of dementia is incredibly brave. We cannot know for sure, but we hope that we will be able to cope with the next health, behavior, or logistical problem, whatever that may be. We hope that our family members will be appreciative and sensitive, rather than critical and micromanaging. We hope that our finances will hold out, and that we can find the support we need, when we need it.
We hope that our spouses/families and employers will be understanding when we have to take the time to deal with crises. We hope that we can continue to find the patience and presence to be with our loved one, even when we are grieving on the inside. We hope that we can find ways to seek solace when we feel alone, overwhelmed, beset with cares and woes. We hope that we won’t also be afflicted with this devastating condition, with known genetic risk.
Having hope allows us to make plans. But hoping that others will step up to help is not enough. We have to be brave enough to admit that we can’t do it all, all of the time. We have to be willing to be vulnerable enough to ask for help. We are allowed to request that our family members share in the responsibility for financial support and respite time away from care responsibilities.
Hoping that we won’t get dementia ourselves is not enough. We must be proactive in taking care of ourselves, by ensuring that we are moving, sleeping, and nourishing our bodies and brains. We must recognize the occupational hazards inherent to being a caregiver – rates of physical and mental health disorders are considerably higher in caregivers, compared to the general population. Which means that we need to make an extra effort when it comes to doing what it takes to ensure our mental well-being.
As a caregiver, it has not been easy for me to set my boundaries nor to make requests. I believed the voice of my inner critic Milly when she kept telling me that I wasn’t doing enough, or that I should be doing a better job as a caregiver. But then I realized that listening to Milly just made me feel guilty or ashamed, without actually solving anything.
I began to recognize that actually Milly reflected the voices of cultural oppression that I had internalized from prior generations. And I realized that my grandma had raised me to be different, she had bitterly resented the sexism that had kept her from getting an education as her brothers had. She had been the only one to believe in me when I said that I wanted to be a doctor when I grew up, and she was so proud when that wish came true.
I have come to see how much better of a caregiver I can be, when I have compassion for myself and when I allow myself to grieve losing my grandma. I am more accepting of myself and others when I can mom my brain, bringing my best self to be present with her, even when I miss her so much. I know that she would have wanted me to be the most powerful caregiver I can be, and to help other caregivers to take care of themselves. My work is a tribute to her.