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How I Kept My Grandad Laughing (and myself sane): Self-Care for Caregivers Series

We’d like to introduce Self-Care for Caregivers, a series featuring real-life caregivers sharing their stories and their advice as they learn to navigate their caregiving stories.  Our goal is to show family caregivers they are not alone – and that in each unique caregiving story there are techniques learned for improving one’s resilience. We hope to spread these valuable bits of wisdom with other family caregivers. 

Today, we will meet Marcia, who changed her perspective on everything when her independent, quick-witted Grandfather suddenly transformed.

I remember when I first got the call from my grandmother to tell me that my dad was in the hospital, having suffered a stroke.

I felt completely helpless. They lived in New York, and I was in Liverpool, England. Being thousands of miles away, I knew there was very little I could do in that moment. When someone you love is suffering, you are overwhelmed with an urge to save them, to fix everything. That all-consuming urgency can make it harder to take the first step toward giving them the help they need.

A couple of months later, I flew to New York to see him and assist my grandmother in her new role as a caregiver. We were together again, but our circumstances were profoundly different.

My grandad has always been a self-sufficient, independent person who was never still, always on the move, chatting with everyone and making people laugh. When I arrived at my grandparents’ home, I found him learning how to walk and talk all over again, like a child. At this stage, he could not articulate a single word.

And yet, I could still see the vivacious man he was, and is, beneath the surface. The bonds of blood were stronger than ever.

Mentally, my grandad is sound. The doctors have assured us he is fully conscious, and understands the world as he did before

This only compounds his frustration. He needs help with all the basics. And he knows he needs the help. We feed him, dress him, bathe him, and help him on his feet. And we help him remain himself, in spite of his reduced physical faculties.

The man who was never at home now cannot be left there by himself. He needs 24-hour care to assist him in his many daily activities, including going to the bathroom. As his caregiver, I exist somewhere between a child and a parent.

My grandparents have recently moved back to the UK, which means I see them on a weekly basis. I now spend a few days each week staying with them and assisting my grandmother. Once a week, a professional carer from the National Health Service comes to spend eight hours with my grandad, which allows my grandmother some time to herself. Spending some time alone and maintaining a sense of independence makes it easier for her to stay strong and whole.

Since they are close, I try to help as much as possible. I found it challenging at first – particularly with some of the more sensitive activities like bathing him and helping him use the toilet. Sometimes he has accidents and I need to clean him up. I am sure it was degrading for him, and at first it was embarrassing for me. But, even here, there is an opportunity for bonding.

When people lose the use of one sense, sometimes their remaining senses seem to sharpen. My grandad has always had a ribald sense of humour, and after his stroke, it became even stronger to help him deal with his new challenges. By engaging with him in a joking, fun-loving way, I can make these awkward situations more bearable. More than that, I can help keep my granddad’s sense of independence alive. I help him find the humor in our new shared experience.

As much as we’ve gained from being geographically close, the internet is still a crucial presence in our lives. Online grocery shopping has helped us get the essentials without leaving home. And we have realized that we are part of a growing and thriving worldwide network of family caregivers, supporting and learning from each other.

Here are a few things I learned through the caregiving process that I hope you can take to heart:
  1. Don’t put too much pressure on yourself. At times, you may feel guilty for not doing more or being a better carer. However, you are doing your best. Be patient with yourself. Allow yourself to learn. 
  2. Make time for yourself. Do activities outside of caregiving. Try to relax, see friends, or read a book.
  3. Ask others for help. You can’t do it all. If you try, you will collapse. You have a larger and stronger support system than you may realize.
  4. Find the helpers. Make use of community caregiving services. Reach out to caregiver groups and find out where you can seek help. Consider the possibility of adult day care. An adult day care center can provide you with needed breaks during the day or week. It can also give your loved one some recreational time. 
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