Your loved one has dementia.
You know you should be patient. You know it’s not their fault.
But sometimes you aren’t that nice. You aren’t patient. You aren’t loving.
And then it sets in. Guilt. Shame. Regret.
Recently a gentleman visited our Dementia Simulation House. After doing the simulation, he sat in our living room. My students and I sat on the loveseat and couch, prepared to do our standard debriefing after the simulation.
It became obvious that he didn’t need our standard debriefing.
“I am just horrible,” he said. “I am mean and horrible.”
He told us he wasn’t always kind to his wife when she was repetitive or confused. He said that he had always tried to be patient, but doing the simulation really affected him—and made him realize that he was, in his word, a “bad husband.”
I had met the guy 20 minutes before, but I doubted he was a bad husband. Bad husbands usually don’t drive across the state on a Sunday to learn more about how to support their wives with dementia.
However, he was a husband who needed help. He needed support. He needed respite. He needed sleep. He needed exercise and a better diet. He needed a friend.
He had given everything he had to being his wife’s caregiver.
When he gave everything he had, he had nothing left to be the kind, caring, and patient husband he wanted to be.
I didn’t know this guy well enough to know what he needed. Someone from his church to stay with his wife a few times a week? Home health care? A counselor well-versed in caregiver? A support group? A meal delivery service? A house cleaner? More financial resources?
He felt like he was failing his wife. But we (meaning the field of health and social services) were failing him. We were failing to connect with him and talk about resources. We were failing in helping him make a plan so that home care was sustainable. We were failing in so many ways to help a good husband who was struggling.
We do a ridiculously poor job of connecting with caregivers and those living with dementia at diagnosis and early in the disease process. The medical profession offers a diagnosis but little to no information on how to actually live with dementia. (Trust me when I say—-my team and I are working on this, but it’s an uphill battle.)
It’s funny how this works, but when we provide more support to caregivers, they are more patient and resourceful caregivers. When we provide support to caregivers of those individuals with dementia living at home, those individuals stay in the home longer.
Caregivers, you are human beings. I spend a lot of my day talking to people about being more empathetic to those with dementia, but I am not grading you. And I don’t judge.
You are a human being. And dementia is a lot. Sure, I lecture on maintaining calm and patience with those with dementia, and I hesitate to say it’s “okay” to ever be unkind to those individuals. It’s not “okay,” but perhaps it is human to have those moments when you spend most of your time caregiving.
Snapping at someone who has asked you the same questions 25 times in an hour doesn’t make you a bad person. It just means you are human. And we need to knock it off with the shame and guilt. They don’t help you and they don’t help your loved one.
If that lack of patience becomes a pattern, consider it a cue that you need support. You are a good person who needs help.
Maybe you are not failing. Maybe you are being failed by a system that doesn’t acknowledge those who give care to adults, especially adults who have cognitive impairment.
When Dementia Knocks 
Yes. Yes. and Yes again.
I work in an assisted living community with a secured memory care wing, often we encounter families who are pouring every ounce of the life they have, over multiple generations, to provide the best care they can to their loved one with dementia. Sometimes, it is not enough, for the loved one or the caregivers. Unfortunately, as a society, we do not support the caregivers enough, and often it is the caregiver that passes or becomes incapacitated prior to the loved one living with dementia.
I often discuss with families how allowing help, either in a residential setting like ours, or with the addition of a Home Care assistant or a companion attendant, can free them up to go back to being the spouse, sibling, son, daughter, grandchild, etc of their loved one. They will always be a “caregiver”, by visiting, praying for, loving on, honoring and providing for their loved one, but they can return to a more natural relationship. They can take the opportunity to refresh their pre-caregiver life; see their friends again, spend more time with other family members, and improve the quality of their time spent with their loved one.
Caregiving is never a zero-sum game, there are always needs and reasons to flex. Give yourself Grace.
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As a husband who went through this for several years and lost his wife last March, I can tell you those feelings of being a “bad husband” will persist even after your wife is gone. Despite having given your all, you may feel as though you failed. I know I have at times. Even with assurances from the writings of understanding people like Dr. Eshbaugh and conversation with family and friends and the passage of seven months, there is not a day that goes by that I do not wonder “Did I do enough? Should I have done something different?” To say nothing of the “Why did this have to happen to her?” question. Most days, I think over those questions and am at peace after reflection. But yes, caregivers need support of all kinds throughout their journey with their loved one and for a long time afterwards too.
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You did enough. But I know I won’t convince you even if I say it 100 times. I’m sorry for your loss.
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Thank you. I do know that I did “enough.” At times, it just feels as though I could have done more. And there is regret over things that I did do and said. I have come to believe all of that is a “normal” (if there is such a thing) part of the grieving process for a spouse caregiver who has lost their spouse. More and more, I remember her with fondness and less and less with sadness. I still miss her terribly, but I am increasingly at peace.
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