Caregiver’s family inadvertently triggers feelings of guilt and failure
"Minding Our Elders" columnist Carol Bradley Bursack says there are two choices: ignore it, or tell your relatives to stop.
Dear Carol: I’ve been caring for my mom with dementia at home for five years. Social media is a blessing because online caregiving groups allow me to feel supported and even socialize without leaving Mom. The problem is that my family also uses social media, and they think they are helping by tagging me with all of these “every day is a good day” memes.
I appreciate their good intentions, but dementia care is hard. Many days are a struggle, so well-intentioned as they are, instead of helping me they just end up making me feel guilty for failing as a caregiver. How do I them know that these are just hurtful without making them mad? — LF.
Dear LF: First things first, you are not failing. Dementia caregiving can be exhausting and even the most determinedly positive person will have days when finding something to feel positive about is out of reach.
It may help you to know that forced positivity is a frequently mentioned frustration. While a positive attitude overall is healthy, being positive takes different forms. I like the word "gratitude." Nearly everyone has something for which they can be grateful, even if it’s as simple as a place to live.
I agree that your family means well, and they think that they are cheering your days, but they are adding to your burden. As I see it, you’ve got two choices. One is to ignore the tags. The other is to tell them to please stop.
It’s too bad that this situation puts even more on your plate, but perhaps being frank with them open their eyes. Tell them that you appreciate that they want to cheer your days but that the memes are just making you feel worse. You could add that if they really want to help, they could sit with your mom a few times a week while you have a break.
Another thought about words: Caregivers would do well to find alternative words for the “guilt” we too easily feel both while caregiving and after it ends. This guilt is unearned. How about sadness? We can feel unspeakably sad when we think of what our loved one’s life could have been if not for dementia. Then, there’s regret for the times when we haven’t quite known how to deal with an upsetting dementia challenge or when we weren’t as patient as we feel we should have been. Let’s get rid of these self-accusations.
If most of your days lack even the tiniest amount of positivity, LF, that is not because you are failing. It’s because your mom has gotten to a stage where the only way to help her without your own health deteriorating is to have a range of people available for her care. What would this look like? Hired in-home care or memory care, most likely.
I’ve thrown a lot at you, but the takeaway that’s important is that you are not failing in any way. No caregiver should feel pressured to pretend constant positivity.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of “Minding Our Elders: Caregivers Share Their Personal Stories.” Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached through the contact form on her website.