Out of Sequence in Dementialand

Someone once told me, “When you assume, you make an ass out of u and me.”

But a while back, I did make an assumption. And I was wrong.

I was visiting a memory care community. Two women were chatting in the common area. I would estimate one of the woman at about 55 years old, and the other woman at about 75. (I must admit, however, that I am terrible at estimating ages, although you might expect a gerontologist would have a special talent in that area. Nope. But I’ve learned to error with lower estimates if I must error.)

The women were laughing a lot. I couldn’t hear their conversation, but it seemed pleasant and upbeat. I watched out of the corner of my eye as both women stood and hugged. The older women had tears in her eyes as she said goodbye to the younger women. I made an assumption that they were mother and daughter. That assumption would turn out to be correct.

I was absorbed in my own business for a few minutes. I used the restroom and set up for a presentation I was doing for staff. Then I noticed the older woman exiting the facility through the front door.

Here’s where I made the assumption that was not correct.

Thinking the older women was a resident with dementia, I found an employee and told her that I thought one of their residents had left the building. Understandably, she did a panicked speed walk to the front door. Then she looked at me.

“Um. Where?” she asked. I pointed at the older women, who had almost reached the parking lot. The employee gave me an annoyed look.

“That’s Donna. She’s not a resident. Her daughter lives here,” she said. I must have looked skeptical because she added, “Her daughter has Alzheimer’s.” (By the way, Donna is not a her real name. I’m using a pseudonym to protect her privacy and also because I’m somewhat bad with names. I don’t remember her real name.)

I had correctly assumed they were mother and daughter. I had incorrectly assumed it was the mother who had dementia. I felt a bit embarrassed for causing a panic. Then I thought about how I had fallen prey to one of the myths of Alzheimer’s and related dementias.

We tend to think dementia is only about old people. And it’s not. There are people who can say, “My daughter (or son, for that matter) has dementia.”

Between 5% and 10% of individuals with Alzheimer’s have the younger-onset variety, which manifests before age 65. I once met someone who was diagnosed with Alzheimer’s in their late 30’s, and I’ve met many individuals who were impacted in their 40’s and 50’s. Other types of dementia can also affect younger individuals.

I once had a strange conversation with my mom. To be fair, I’ve probably had many strange conversations with my mom, but this one comes to mind today.

I can’t remember how we started the conversation or even the specific topic, but the following words came out of my mom’s mouth: “If I die before you do….”

It was a very matter of fact statement thrown into a practical conversation–not meant to be dramatic in any way.

I continued her statement naturally without much thought “….and I hope you do.”

On the surface, it might even seem to be a not-very-nice thing to say, but I meant it. I hope my mom dies before I die because the alternate scenario would be a million times more difficult for my mom. And I think she’d agree. I hate the thought of grieving my mother but I’ll take it as a natural part of life…because it’s better than the thought of my mother grieving me. And I don’t mean that selfishly. I hope to be able to accept the loss of my mom when she gets old…really really old… I don’t think my mom could ever, under any circumstances, accept losing me. (Does that sound egotistical? I don’t say this because I’m great. I say this because she’s a mom.)

Most of us expect to lose our grandparents and parents. That’s the normative sequence of events. Of course, we hope that they are here long enough to see us well into adulthood. We want them to see us accomplish things. We want to become people that make them proud. But we know that they won’t be around forever. It’s not a fun thing to think about it, but it’s life. We expect to grieve grandparents and parents after they pass away in old age. We don’t expect to grieve our children and grandchildren. That’s not supposed to be part of life. We aren’t supposed to outlive people we produce.

My grandmother passed away from cancer in 2012. Her son, my Uncle Terry, died of cancer about six months later. There was a lot of loss in my family in a short time. Looking back, I am thankful that my grandmother was not on this earth to see Uncle Terry pass away. He was there the last few days in the hospital to say goodbye to her. I’m sure it wasn’t easy for him, but I will forever be grateful that the roles weren’t reversed. After all, no one wants to outlive their kids.

We associate Alzheimer’s with aging. We think of dementia as something people get when they are nearing death anyway. Yet, dementia is not normal aging. Dementia is caused by various diseases, and we need to find a cure for those diseases. I hate dementia when it happens to anyone of any age. There is a certain level of acceptance when it occurs in older adults–and there shouldn’t be. Sometimes people don’t think your quality of life matters when you get to a certain age. I think that’s bullshit. It’s a statement made by people who cannot wrap their minds around the possibility that they will someday be “of a certain age.” I often think we have more empathy in our society for injured puppies than for older adults who may be suffering.

I found something particularly heartbreaking about a woman visiting her daughter who had dementia. I’m sure part of that sadness was because the woman with Alzheimer’s was fairly young, but it was more than that. I see plenty of daughters visiting mothers with dementia, and many of those mothers are in their 50’s or early 60’s. Younger-onset dementia isn’t as rare as I wish it were.

This may have been the first time I’ve seen a mother visiting a daughter with dementia (with the exception of individuals with Down’s syndrome who have dementia–which is common), and I couldn’t get the image out of my head. Is it harder for a mom to see her daughter struggle with dementia than vice-versa? Or is it just hard to see someone you love negotiating Alzheimer’s or another dementia–no matter who it is? I’m not sure it’s worth a philosophical debate, but there is something that seems extra unfair about watching your child, even if that child is grown, on a journey with dementia or another serious illness.

Several years back, I struck up a conversation with a resident at a nursing home who was a very sharp and aware 80 years old. She had lost her only child in a car accident many years ago. She explained to me that her life had been divided into three trimesters–just like her pregnancy, ironically. And, at the age of 80, she realized that her three life trimesters were pretty much equal in number of years. The first trimester was before she was a mother. Her second trimester was when her daughter was alive. Her third trimester was after her daughter passed away. From her perspective, she was an entirely different person in each trimester. She had spent the entire last trimester wishing she, rather than her daughter, had been in that car.

She told me she was ready to die because she did not want the longest trimester in her life to be the trimester after her daughter died. Then she told me that sometimes she wished she had “that Alzheimer’s” so she could forget the pain of losing her daughter. I told her that, unfortunately, she seemed sharp as a knife and I didn’t see any type of dementia in her near future. That probably wasn’t the right thing to say, but I didn’t have anything better.

I don’t have a prescribed message for you today. But here’s what I know…. In a perfect world, grandparents would die before parents, who would die before their children…And everyone would get old before they die. That’s how it’s supposed to be. But it doesn’t work that way. And we want to think that these people we lose “out of sequence”–who we aren’t supposed to lose–are in a “better place.” But isn’t the best place right by our side? (And no, we aren’t selfish to want them to stay.)

In a perfect world, if some people had to get dementia, those people would be in their 90’s or maybe even 100’s, but that’s not the case. Dementia isn’t just about our parents and grandparents. It’s also about our siblings and spouses. Sometimes it’s about our children. We have to stop thinking it’s about the generations above us. Really, it’s about all of us.

We think about dementia and old people come to mind. And I can’t criticize people for making this association.

After all, when I saw a mother and daughter in a memory care community, it never occurred to me that the daughter could be the one with dementia.


6 thoughts on “Out of Sequence in Dementialand

  1. I too have seen in the last 25 years, the age decline of residents in NH. The increase of residents under the age of 55 is quite daunting, or it is to me, that many are younger in their 40s.
    But I must agree it has to be hard to get out of the normal sequence of life as we know it. Anything otherwise just appears to be more difficult to live with than the norm. (I have told many moms and a few dads, that it is not supposed to happen for a parent to bury a child, regardless of age.) It is (I wonder) where & when do the norms get changed, if they do?

    Love your writing. Well done!


  2. My husband was diagnosed at 58, my dad passed in 2006 and my mom also has Alzheimer’s, she lives in a nursing home, thank God they take such good care of her, my husband is at home, never thought I would be spending my life dealing with this horrible disease. Love your blog it helps a lot


  3. This is one of my all-time favorite posts on your blog. I was feeling stressed and overwhelmed about the demands of graduate school this morning, but reading your blog made me take a 10-minute break to video call with my Grandma. Thank you! Please keep blogging! 🙂


  4. You are right in the money. My 49 year old husband, thankfully outlived his parents who passed away from cancer a number of years ago. It would be heart wrenching for them to watch him decline.

    Thank you for your your thoughts and input. I look so forward to reading your posts.


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