The B Word in Dementialand

Burden. It means hardship, mental weight, or strain.

It’s a word caregivers at dementia support groups dance around awkwardly.

Caregivers vent. They talk about their lack of privacy or their dearth of support. They discuss their frustrations and challenges. They say they have no time to care for their own health or spend with friends. Every once in while, someone cries.

But then it usually comes back to a statement that goes something like this: “But it’s not a burden. I love her and I’d have it no other way.” Then they all nod knowingly in a sterile way.

One day, a woman made what I thought may have been a total support group faux-pas. She said it was a burden.

Let me start by saying that she was in her late 30’s with a couple of kids and a full-time job. Her mom had younger-onset Alzheimer’s and had moved in. For a few months, her mom had been able to contribute around the house. She cooked and did dishes. She could watch the kids for short amounts of time. She kept the house clean and pulled weeds. But lately her mom needed so much support to provide help that it really wasn’t help at all.

“Caring for mom is becoming such a burden,” she confided to the group. Everyone cringed at the word burden. “This disease is such a burden on our whole family but most of all it’s a burden on Mom.”

Although some members of the group seemed uncomfortable with her using the word burden, there was something about what she said that made me think. The disease is a burden, she said. The person isn’t a burden. And the disease is a burden to the person who has it even more than the caregivers.

We often say that we don’t mind caring for those we love when they are ill, whether that be with Alzheimer’s, cancer, or another disease. We tell others that we do it out of love. We say we wouldn’t have it any other way. I don’t doubt that this is the truth.

Yet, we wish that we didn’t have to do it at all. We don’t like it when our loved ones need care. We want to see people we care about doing the things that they enjoy. We hate seeing them in pain, whether it be physical or emotional. And that’s why we should hate Alzheimer’s…and cancer…and ALS…and cystic fibrosis.

What this woman acknowledged was not that her mother was a burden but that Alzheimer’s was a burden. And I agree. Alzheimer’s is a burden in a million different ways. Sometimes I feel like caregivers want to deny that the disease is a burden because if they use the word it means that they don’t love the person who needs care.

You get to love the person but hate the disease. In fact, I encourage you to hate the disease and to tell everyone you know how much you hate it–because we’ve spent too long ignoring the challenges this disease presents to individuals, families, and society.

I talked to a family a few months ago who had lost their father to Alzheimer’s before his 60th birthday. They had been through a lot. He had been asked to leave (in their words, “kicked out”) of several assisted livings and memory care communities for aggressive and inappropriate behavior. They had gone through his savings and the savings of his children to try to secure him decent care. Although they weren’t entirely sure, his family thought he died because he had aspirated food into his lungs and developed pneumonia.

“Is all of this normal?” one of the daughters asked me. “I feel like our experience with Alzheimer’s has to be worse than the normal experience. If it’s like this for everyone, people would be fighting harder for a cure.”

I’m not sure there is a “normal” with Alzheimer’s, but I hear a lot of stories like this. The disease can be a real nightmare. They didn’t want to care for their father. They’d rather he didn’t need care in the first place. We care for people because we love them but it’s that love that makes caregiving so difficult. And it’s okay that sometimes we get angry and sad because we have to be caregivers, particularly when the person who needs care is young enough that they really shouldn’t need care (in a perfect and fair world, anyway). It doesn’t mean that our loved one is a burden. It means that caregiving is hard.

I’ve talked with many individuals who have an Alzheimer’s diagnosis. Keep in mind that this is a life-limiting illness. Eventually Alzheimer’s progresses to the point where life is not sustainable. You will die from the disease or with the disease. I know I may sound harsh in pointing this out, but I still struggle to get individuals to understand it. Life doesn’t end at diagnosis (and I know many individuals living and living well with the disease), but Alzheimer’s is terminal.

However, I’ve never had someone after their diagnosis mention to me that their greatest fear is death. Never. When I talk to individuals who are newly-diagnosed, they almost always say that their fear is becoming a burden to their family. Their family usually jumps in and insists that they could never be a burden.

Sometimes it’s better to acknowledge that they will all be burdened by the disease itself. And they will all be burdened together because that’s the way love works. They didn’t ask for this disease and it’s not going anywhere.

At a memory care community recently, a woman with dementia walked up to me and said, “My brain has a clog and I’m carrying around a ball and chain.” I didn’t ask for further explanation, but I sent a text to myself immediately so I would remember her exact words. It struck me as a better description of dementia than anything I’d read in a textbook.

Her clog? Her ball and chain? Those are her burdens. People with dementia are not burdens. They are burdened.

6 thoughts on “The B Word in Dementialand

  1. Thank you Elaine. Yes the “B” word hurts. Actually hearing the word hurts no matter the context because my brain transfers it. DING !!! “Yes; that is the perfect word to express my fear. I am always looking for words and had forgotten this one, it is the perfect word for my concern. My fear is how long and how severe will be the burden created on my loved ones.” Somehow my thoughts grab the term “burden”, no matter the context, and hold it with a fierceness that simultaneously adds and subtracts from the ball and chain; Lessens because I had forgotten the term and am reminded that the fear has a name so that is the start of dealing with the fear, but adds because every time the word is spoken (again no matter the context) it reminds me of that fear. This entry reminds me to put that term in a larger context; burden of the dementia disease itself — for all of us including the patient. THANK YOU 😀 — Tru

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    1. I cannot thank you enough for sharing this. What your perspectives add to the conversation in the dementia community is so incredibly valuable. I am sure the B word must trigger so many complex emotions for anyone with a serious illness, especially those with dementia. Your comments are really helpful to me.

      Liked by 1 person

    2. It’s funny; late stage is so incredibly emphasized with dementia issues in comparison to my prior disAbilities. When I had already been in wheelchair for several yrs but with constantly changing “diagnosis”, we designed this house in such a way as to try to prepare for whatever my “progressive neurological conditions” might be finally diagnosed. But other neurological diseases don’t have the strong emphasis on end-stage, so the concern of being a “burden” was already in a much larger context.

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  2. “Life doesn’t end at diagnosis (and I know many individuals living and living well with the disease), but Alzheimer’s is terminal.”

    Exactly!! And, it is entirely appropriate to refer to this disease as burdensome. Trying to change the semantics of a disease is ridiculous. Taking offense at the words that swirl around the disease is a waste of time. Folks, this is what it is….let’s feel free to call it, describe it…as it is. A nasty, inconvenient, confusing, frustrating, BURDEN….for the caregiver and the diagnosed. My feelings don’t get hurt and I am the first person to point out what a burden I am with this disease, not seeking sympathy, but acknowledging reality.

    I’m 3 years into a confirmed diagnosis of early onset Alzheimer’s disease. I was 55 when I was diagnosed. I have managed to live a happy and content life since diagnosis. But even now….I am a burden to my husband. Whether it’s a simple burden…. driving me (because I no longer drive) to the neurologist for check- up ….or the complete loss of comprehension of something I once knew well….it’s a burden…..and that burden is going to get worse….for him as my caregiver, for me as a diagnosed person.

    Truthful Kindness, if you are so insecure about adjectives used in the topic of dementia, it’s your problem….not society’s. Changing the adjectives of this disease to make it more palatable is like trying to put lipstick on a pig.

    I’m not sure why you are even commenting on this topic as you do not have a confirmed diagnosis of dementia. You say you have MCI but even by the definition of MCI by “Healthline” and a review by George Krucik, MD, MBA (you are familiar with this organization and name):
    ‘Mild cognitive impairment is not considered a form of dementia…’

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  3. I have feared being a B-word (both B-words, I guess) for most of my life. This is eye-opening in that the situation, not the individual, can be burdensome. I think people also avoid the word because it implies a certain level of self-importance, like, “Well, let’s talk about how this affects me.” Great post!

    Like

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