aging, alzheimer's, dementia

What It’s Like to Live in Dementialand

A cure will be found for Alzheimer’s. I won’t find it. I’m not even looking. My mission is different.

I go to fundraising and advocacy events. Most of the talk is about finding a cure. It’s a great cause, a good goal. We give money so that people in the future won’t know Alzheimer’s. And I hope they won’t. I write my check.

And yet I sometimes feel like those who currently have the disease are lost in the shuffle. We may hold them up to other people and say, “We must cure THIS. We don’t want people to be like THIS.” They are our greatest fear. That are what spurs us to donate money to help find a cure.

But in all the fundraising and public relations work, we sometimes do little to try to understand the people with the disease. We can’t decipher their words, but we nod as if we can. We talk about them like they aren’t there, and then we speak to them like children. We scold them, correct them, make comments that imply they are stupid. We don’t stop to think what they might be going through. I hear, “Oh, it’s so much harder on the family,” and “Grandma doesn’t know what’s going on anyway.”

I know this disease is hard on families. I speak at caregiving conferences and support groups. I have family members eloquently tell me (sometimes with beautiful analogies) how difficult negotiating Alzheimer’s is. Some have even written poetry about the “long goodbye” or the “cruel beast of dementia.” It’s rarer to have a person with Alzheimer’s so eloquent in their description of what they are going through. Just navigating life with Alzheimer’s is hard enough. Most people with Alzheimer’s do not have enough left over to explain what it’s like to navigate Alzheimer’s.

I once heard a person say, “I have this Alzheimer’s thing. It’s a real catastrophe.” Then she lost her train of thought and started talking about something unrelated.

Family members have every right to complain about Alzheimer’s. But it’s not a picnic for the person diagnosed. Many times they act as if they are okay because they aren’t sure exactly what’s wrong. Nothing makes sense. Sometimes isn’t right. But they’re not sure what so they bury the anxiety inside and smile. If they tried to explain it, it wouldn’t come out right anyway. We wouldn’t listen. Or we’d make them feel stupid.

I gave a presentation once that focused on what it’s like to have Alzheimer’s. There are some fancy ways to simulate dementia, but I didn’t use those. I had people pair up, designated one of them to have dementia, and had the other pretend to be a caregiver. Usually, the person with dementia gets annoyed with the “care” that I prompt the caregiver to provide. And everyone laughs.

A guy came up to me afterward, and he said that his mom had been diagnosed with Alzheimer’s five years earlier. “In the last five years,” he told me, “I’ve never once thought about what it’s like for HER to have Alzheimer’s.”

What?

He said, “No one has even talked to me about what she’s going through.”

We’re so focused on curing a disease that we often forget about the people living with it.

21 thoughts on “What It’s Like to Live in Dementialand”

  1. A very thought provoking post, I work in the realm of Dementia/ End of Life Care, what a lot of people don’t realise is that Dementia is presenting earlier and progressing faster, the youngest resident I’m fortunate to assist is is a mere 5 years older than myself.
    Not all journeys of Dementia are the same either how I connect with one person may have no effect with someone else, yet one aspect prevails, the joy of human contact and laughter, two things I ensure to provide every single day with each person during my working day

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  2. Thank you for sharing, Elaine. I am now in my 2nd year as an administrator of a retirment community. Today I was called down to our memory care building to read something discovered by one of our dementia care specialists. She found dozens of folded paper place mats inside of a walker of one of our residents. This resident, who learned to speak 5 languages in her lifetime, had been busy hand writing poems. Even though most of her poetry was difficult to read and understand (the lines intersected and several words were crossed out or had food smeared on them), we were brought to tears.
    We learned that she felt like she was a heavy burden on the people around her. She felt she was trapped. She talked a lot about her lost youth and freedom as well as happiness that she once had but couldn’t hang on to anymore. She questioned her faith and wondered if she brought ‘this’ all on herself.
    I had no idea she was writing since she was barely speaking to us anymore. My sad tears turned into happy tears when I learned that we can use her words as an opportunity to change and improve the way we care for her. We started by buying her a journal with actual pages!

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    1. Thank you for sharing this. That is absolutely incredible. And I would guess that you can use her words as a way to improve the way you care for her and also the way you care for and think about all people with dementia. Sometimes it amazes me what may be going on inside someone’s head after we think they have “shut down.” This is an excellent reminder for me. And I LOVE that she now has a journal!

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  4. Good post. Too much health discussion these days is pharmaceutically driven, it’s about a battle, rather than how to live with it, to be within it. Because there is not a cure for everything, and never will because everyone reacts differently to a disease. .

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    2. Thank you Elaine. I am working on it. (In fact, someone asked so figured it out this morning … I spend ~60hrs/week on dementia issues and goals. Between Dementia Mentors, Dementia Alliance, Blog, PWD Perspective NewsLetter, and my newest project Dementia Success Stories. (Oh & have not begun preparing oral presentation for ADI conference in Perth Australia) Busy busy busy. But my abilities have dramatically dropped in the past year, and I know my window of opportunity is limited, so very very motivated to do what I can do, while I can do it. 😀 — Tru

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  6. I read Still Alice after a car accident left me in a bad state cognitively. Actually, I couldn’t even read it. I listened to it on audio – each page, over and over. I told my family then that if I did turn out to have Alzheimer’s, I needed them to read that book.
    As far as I know, I don’t, but I still think anyone who cares about someone who has it – no matter what stage of the disease – should read that book. Or see the movie. I understand Julianne Moore does a fabulous portrayal.

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  7. Good point. My Mom was diagnosed with Alz in 2010, and I had to put her in a nursing home in 2011. I agree that not enough people try to understand what it’s like for the person afflicted with the disease. I have learned so much through listening to her, watching her, reading, and once being part of a caregivers support group, The most important thing I have learned is to always stay in the moment with her. It’s like an improv exercise (having done comedy improv) that never ends. Luckily she is in a very good residence in an Alzheimer’s unit. I look forward to reading more of your posts.

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    1. I really appreciate your comments! I have said before that interacting with people with dementia is like improv, but I’ve never heard anyone else use that analogy before. I am glad to hear someone understands where I am coming from!

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  8. I cared for my demented father for a year after my mom died. She had been covering for him and I didn’t realize how bad he had become. I got him into a senior day care, which he really liked. We had painting and poetry sessions. He forgot how to read; he didn’t change his clothes unless I laid them out for him. He wasn’t hungry anymore, would just eat maybe a donut for breakfast. It broke my heart completely, but I’m sure his was broken even more.

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  9. It is not easy to live dementia

    Thank you on behalf of Daylight Tune Ministry to like our ministry guest blog. May our poetry bless your hearts and minds 🙂

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  10. My father at 89 has been suffering with dementia since his early 80’s. Having been a very analytical and precise person, watching the change has been very disheartening. He shows zero frustration and always seems happy. He has been in a home now for two years. I remember a discussion I had with him early on. He said his memory wasn’t like it use to be and he couldn’t recall things easily. It didn’t seem to frustrate him, he acknowledged it as fact and that was that.
    Having watched our mother slowly die of cancer at an early age and my father with this at an advanced age…tough to say which is worse for the person and family. I have three other siblings and we each have a different way of processing what we see happening to our father. Thanks for sharing and what you do!!

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  11. Reblogged this on Smorgasbord – Variety is the spice of life and commented:
    A very interesting blog is you have family members who have dementia but also if you would like to know more about one of the greatest fear that someone in their 70s and 80s has.. disease is almost an expected part of getting older but to lose the essence of who you are is very frightening.. hard as it might be for us who have cared for loved ones with dementia it is far, far more stressful and distressing for those with the disease.

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  13. I am very much enjoying your posts. Thank you. When we go to my dad’s doctor’s appointments, three years since diagnosis, their family doctor asks dad how he is doing and dad always tells him fine. And then the doctor turns to my mom and they carry on a conversation as if he was not there. The doctor asks mom how he is really doing and mom lets it rip. After the second visit like this, I told them to stop talking in front of him as if he was not even there and the doctor told me not to worry, that he wouldn’t remember anyway. I was furious! I told them that they needed to confine their negative comments and analysis to times when he was not present and that was non negotiable. Even if he does not remember everything, I feel that he may remember how he felt or how they made him feel. Everyone needs an advocate.

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  14. I often think about what my brother is going through with dementia. I had to make some hard decisions at the nursing home for my brother yesterday. I hate controlling someone else’s life because they cannot do it. I left the guilt behind, but the saddness of the situation is eating me alive. I pray they find a cure and as soon as possible. I know it is too late for my brother, but I hope others will benefit. Good article

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