Difficult and Beautiful Caregiving

I’ve been thinking a lot about caregivers lately.

Caregivers who live at home with their loved ones and are overwhelmed due to social distancing guidelines. Caregivers that cannot visit their loved ones who reside in a nursing home or assisted living due to COVID-19.

Being a caregiver isn’t easy in the best of times. It’s even harder right now.

I work most frequently with caregivers of those with Alzheimer’s and related dementias, but these challenges are not unique to a specific illness or disease. Cancer. Brain injury. Parkinson’s. Amotrohyphic lateral sclerosis (ALS).

Caregiving is rough.

Caregivers come from all socioeconomic statuses, political parties, and ages. We don’t give them nearly enough support in our society. I would be thrilled if a woman caring for her mother with Alzheimer’s was given the same leniency in the workplace as a woman caring for a sick child. I wish more workplaces were supportive of employees caring for adult children with intellectual disabilities. I wish we knew what to say to caregivers who are struggling in the same way we know what to say to new parents.

However, our policies often limit “family” to adults with young children–and do not provide the same accommodations to those caring for spouses, parents, and grandparents. And, to be honest, people just don’t know how to support caregivers through the duration of their journey.

We struggle, in particular, to support those who care for adults who have dementia, brain injuries, and intellectual disabilities. We don’t know what to say so we often fade away–hoping people don’t notice we are avoiding them.

Trust me. They notice. They see you hiding in the next aisle at the grocery store. They realize you don’t call them for wine night anymore. And they know you can’t end the conversation fast enough when you run into them at the Home Depot garden center.

I talk a lot about the challenges that caregivers face, particularly in the age of COVID-19. And those challenges are real. We need to do better to provide services to this population. And I teach the college students who will someday provide these services to caregivers….so it needs to start with me.

But there’s something else I don’t talk about much, and it was thrown in my face tonight by someone who is far more eloquent and insightful than I am.

You see, my friend is faced with the possibility that she will be a caregiver for her husband. She doesn’t know exactly what that will look like, but her life has been turned upside down in the last several weeks by his change in health status. She has no false reality that her old life will suddenly snap back into place.

Tonight, during a long Zoom call with me, she said, “I know this is going to be hard, but it could also be beautiful.”

She reminded me that difficult things can be beautiful. She reminded me that, while caregiving isn’t easy, it can be rewarding. She even described a couple of medical caregiving tasks as fun. Yes, she used the word fun.

I think a lot about the tough pieces of caregiving, but maybe I’m missing the boat. Caregiving can be frightening and amazing. Caregiving can be painful and fulfilling. Caregivers can be awful and wonderful. It’s not one or other. There’s plenty of room in caregiving for the good and the bad.

It is common for a caregiver to feel relief after their loved one passes away. It’s also common for a caregiver (even the same caregiver) to miss caregiving.

Some people get really good at caregiving, and they take pride in their skill, as they should.

Some people find a sense of purpose in caregiving. They find meaning in it, and that meaning sustains them.

Some people find that that their relationship with their loved one changes. Sometimes they find that it becomes a stronger, more fulfilling (although different) relationship.

I have done research on depression among those care giving for those living with dementia. As you might expect, the rate of depression in this group is greater than that of the general population.

And, yet, perhaps my research is incomplete. What do people enjoy about caregiving? What is rewarding? What about caregiving makes people feel like they are making a meaningful difference? What are the positive aspects of caregiving that keep caregivers going when caregiving is rough?

Acknowledging these positives takes nothing away from the stressors that caregivers experience. We must work to identify stressors and provide services support caregivers.

However, maybe discussions with caregivers should also visit the benefits of caregiving. Caregivers should not have to be apologetic for the pieces of caregiving that they enjoy.

We should do a better job celebrating victories with them.

 

 

5 Comments

  1. I agree – people do need to talk about caregiving more and be more supportive in the workforce. I’ve watched so many family members be secluded from society because they aren’t getting the right supports. It kills me! Let’s all try and talk about it more and spread love by offering to help others and give friends and family a break here and there so that they can go out with friends.

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  2. Yes yes yes and yes. Thank you for this. My heart hurts for all of the caregivers who are struggling at home in seclusion right now. In the years that I cared for my mom, it was our daily outings and adventures (which often included little trips to neighboring towns, coffee shops, libraries, and stores), that kept us fulfilled and content. I can’t imagine trying to do this during a pandemic. Also, caring for my mom was the hardest thing I’ve ever done and the greatest privilege of my life. It grew me in ways I didn’t know was possible and gave me skills I will use long into the future. My only regret is that my mom has had to suffer through this marathon of a disease for me to receive the incredible blessing of caring for her.

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  3. It pleases me to be able to be there for my husband (early stage Alzheimer’s related dementia) and I know that one day he won’t be able to acknowledge all that I do for him, so for now, I enjoy caring for him and being there for him as much as possible. I’ll never forget the video I saw of a woman delivering a eulogy after her husband had passed. She remarked that she would give anything to be able to hear his irritating snoring or his passing gas in his sleep as she laid in bed beside him. I know that some don’t realize that what they will miss about their loved ones is the very thing that irritates them now.

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