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Fifty Shades of Caregiving

It’s taken me a long while to get used to the idea of calling myself a caregiver. I’ve written about how even though we doctors do like to think of ourselves as taking care of patients, we don’t tend to think of ourselves as caregivers.

And if I’m being completely honest, it’s because we don’t like engaging in the hands-on care that we typically associate with nursing. The truth is that daily care tasks like giving medication, feeding, bathing, and toileting, are unglamorous at best and downright messy at worst.

As healthcare providers, we are trained and licensed to provide services within specific scopes of practice that can sometimes overlap. But for the most part, our professional boundaries are intended to allow us to develop depth of expertise and experience, so that we are a stronger team of care providers for individual patients.

All kinds of caregiving

The thing is that family caregivers don’t always get to choose whether or not to be a caregiver. Nor do they have a choice in terms of scope or responsibility. Family caregivers tend to be volunteers who gradually take on more and more, often without being aware of what’s happening. Until one day, they realize that the responsibility for their loved ones seems to be squarely in their lap, as others may have slowly backed away or “gotten busy”.

It starts out innocuously. I would come to visit with my grandmother, to have dinner or lunch with her. Just to keep her company and hang out. I didn’t call it caregiving then, but now I’m seeing that it was. This kind of social engagement turns out to be extremely important for seniors, who tend to become increasingly isolated as they get older.

Most of us don’t even consider running errands to be caregiving, whether it’s grocery shopping or picking up prescriptions. Cleaning, repairs or yard work often just seem to be little ways for us to help out our elders. And then there’s transportation, or maybe even doctors’ appointments.

At first, it’s a matter of time and effort, which we are happy to expend on behalf of our loved ones, as long as it doesn’t get in the way of our own lives. But then as our loved ones begin to require more and more help, it may begin to impact our work or relationships.

Family caregivers don’t always get to choose whether or not to be a caregiver

It’s never easy or convenient to find out that grandma hasn’t been taking her medications right. And as we shift from prepping meals to making meals, from buying clothes to helping them dress, there’s often a hesitancy to intrude on their privacy, their dignity. Especially when we have to help with money or assets. It doesn’t feel right to have to violate so many personal boundaries.

All kinds of feelings

There may be personality changes in the mild cognitive impairment phase of disease, as our loved ones begin to recognize that memory has become a problem. This can show up as gradual withdrawal or more dramatically with anxiety and/or paranoia - as in, “Someone is stealing from me.“

I remember sitting and looking in helpless disbelief at my mom as we watched my grandma searching yet again for hours, looking for her lost handbag, jewelry, money, whatever. We would spend hours combing through drawers and under the bed. Where could she have hidden her valuables, in the attempt to keep them safe? And how on earth did we end up in this situation that was simultaneously comical and tragic?

After the anger of grief burned itself out, there was no choice but to accept reality

I was so frustrated with myself in those early years, watching my grandma change into someone who was familiar and yet barely recognizable. I felt like I should know better than to get frustrated - after all, it was no one’s fault that her brain was sick. But that sickening sense of dread and sadness was impossible to shake. I wanted to find someone to blame, and when it couldn’t be her, it became me. I made it my fault that I couldn’t help her get better,

In retrospect, it was ridiculously arrogant of me to believe that I could be responsible for making my grandma better. After all, decades of research and topnotch minds have been working on dementia for decades.

And after the anger of grief burned itself out, there was no choice but to accept reality. The emotional labor of family caregiving permeates our existence. Our worry about loved ones is mixed with helplessness, uncertainty, indecision and self judgment.

Turns out that there is no way to get it right. Whether we are living in the same house or halfway around the world, whether we are taking care of them in their own homes or in a senior home, whether we are hiring other caretakers or taking on the hands on care ourselves. We still get to feel all the guilt, grief, fear and shame.

Caregiving is love

Chances are that you are either engaged in some form of family caregiving for an elder, or that you know someone who is. It’s good to remember how important it is

for family caregivers to take care of themselves. They need emotional support and respite breaks. They need to be respected and recognized for their sacrifice. Caregivers often aren’t good at asking for help, nor do they make their own health a priority.

Caregivers need to be respected and recognized for their sacrifice

It takes courage to face up to the uncertainty of day-to-day care. We want to keep our loved ones safe, and to protect them while still honoring their autonomy. We want to respect their decision making capacity, as long as it isn’t endangering them or their assets. And it often takes tremendous patience to sort out whether they can continue to be responsible for their own property, debt, taxes, or finances.

The good news is that there are more and more resources out there for family caregivers, to support them in having difficult conversations and in helping them to assert healthy boundaries.

Photo by Josh Appel on Unsplash

I’m learning that I have to be able to love and trust myself, in order for me to be the best family caregiver possible. That means that I don’t get to dismiss what I’m doing as unimportant. And it means embracing the mess and drama that are occupational hazards. But perhaps most importantly, it means that I have to be intentional in setting boundaries around my time and resources. Because while sacrifice sounds good and noble, dementia rolls right over such petty human constructs, flattening everything in sight.

What matters most is that I’m going to do all that I can to ensure that I am healthy of mind and body so that I can continue to be a family caregiver, whether that’s for my 103-year-old-grandma, or my unborn grandkids.



Downloadable PDF with tips for how to have conversations with loved ones about decision making, when there is a concern about cognitive function.

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