There will be some big changes coming for my blog. I’ll be asking for your help in this process so keep checking back for updates.
Just because I like suspense…you’ll see I changed the title of the blog to Welcome to Mysteryland. Aren’t I clever?
DRUM ROLL PLEASE.
Human beings continually amaze me.
They amaze me in how inhumane and cruel they can be.
And they amaze me in how wonderful they are.
A few weeks ago, someone amazed me in how wonderful they were.
I was doing a presentation at a dementia conference. The vast majority of attendees were professional or family care partners. As I was chatting with people before my presentation, I asked some of the participants what they wanted to learn.
I want to learn to understand my husband better.
I want to understand what my mom is going through.
I want to learn how to calm my residents when they get upset.
I want to have a friend with dementia over for dinner and I need to know how to make it the best possible experience for her.
Wait. Rewind. What was that last one?
An older gentleman was attending a dementia conference for the purpose of learning how to make a dinner party more enjoyable for a friend with dementia.
That’s it. That’s the whole reason he spent an entire day at this conference.
He didn’t have a family member with dementia. He didn’t suspect he had dementia.
He just wanted to make a pleasurable evening for someone living with dementia and happened to see the conference advertised. He signed up.
Here was the story…he and his partner had been friends with another couple for decades. The wife had Alzheimer’s and the disease seemed to be progressing quickly. He still wanted to spend time with them. He still wanted to invite them over. He just wasn’t sure of a few things.
What do I do if she doesn’t know my name?
Does she have any dietary restrictions?
Is it okay if we have music playing?
Do we stop her if she’s telling a story and rambling on and on?
Is it okay for her to have a glass of wine?
All good questions.
We chatted for a bit after my presentation. In short, I told him to keep inviting his friends over. I said he should be prepared to roll with the punches. I said he shouldn’t pressure them to stay too long. I told him that his friend could still enjoy his company even if she couldn’t remember his name. I also suggested he work on getting his friend’s husband out to go fishing or have a few beers without his wife, if possible.
He seemed confident when he left. He seemed excited about the opportunity to have his friends over for dinner when others might be excluding them for social events.
As he walked away, I just shook my head.
People are amazing.
Recently I found myself talking to the daughter of a nursing home resident. We were discussing why nursing home staff should avoid calling residents “sweetie,” “honey,” “dear,” and similar terms. I’ve read quite a few articles arguing that such language can be demeaning when used toward older adults. I mean, you wouldn’t call your boss sweetie, right?
The daughter agreed with me.
Then her mother, who was sitting nearby, piped up.
“I like it when they call me honey. It makes me feel loved,” she said.
And I was reminded of something.
I don’t speak for all people living with dementia. In fact, I don’t speak for any of them. I speak based on my own background and knowledge. My views are shaped by my perspective on the world and my personal experiences. Sure, I listen to people living with dementia and do my best to process their experiences and feelings. But even if I were to be 100% accurate in my perceptions of where someone is at, that’s one person with dementia.
If you’ve met one person with dementia, you’ve met one person with dementia.
I stand in front of groups and talk about what you should and shouldn’t do when you interact with someone who has dementia. But is every person going to agree with my recommendations? Nope.
I recently watched a video of a man with cerebral palsy. He was talking about what annoyed him…being patted on the head, people pushing his wheelchair without asking…but then he said something interesting. He reminded everyone that he’s just one person with cerebral palsy. He doesn’t speak for everyone with cerebral palsy. Something that might be frustrating to him might be welcomed by another person.
An African-American colleague and I were chatting a couple months ago about bias, discrimination, and micro-aggressions. He mentioned that he might perceive a comment made to him as biased, whereas another African-American individual could hear that same comment and think nothing of it. There’s not an official list of what offends every African-American because African-Americans are individuals and do not share a collective brain.
My friend, Drew, has cystic fibrosis. My education would tell me to refer to her as a person living with CF. We call that “person-first” language. She’s a person before anything else. However, she refers to herself as a CFer. And who I am to explain why that’s incorrect? She gets to call herself whatever she wants.
I live in a university culture. I am constantly made aware of preferred language and current trends in political correctness. I follow the tips I’m given. I call students what they prefer to be called. (This was a particular point of emphasis when our university realized we had an increasing number of transgender students. A student whose legal name was Michael preferred to be called Lucinda. And I have no issue with that.)
It’s in my nature to prefer things to be black and white, so I like to be given rules. Either I’m right or I’m wrong. And I can point to a piece of paper to show someone that they’re wrong. But I’m not sure it’s so simple here.
Recently I wrote about why we shouldn’t refer to people living with dementia as dementia sufferers. Sure enough, I heard from a few people with dementia who preferred to be called dementia sufferers. They felt like saying they were living with dementia rather than suffering from it painted too rosy of a picture. They wanted the world to know how challenging dementia was—and they felt like using the term dementia sufferers was the best choice to really represent dementia.
And that’s their experience. I can’t argue with their experiences.
We make recommendations of what to call individuals and how to interact with them, but we do this at the group level. And people living with dementia are just as diverse as people living without dementia. They have different preferences. They have different likes. They have different needs.
This isn’t about me. It’s about them. So I need to adjust.
I was talking to a woman in early-stage dementia about this a while back. I asked her if she considered herself to be a dementia sufferer or a dementia patient or a person with dementia or a person living with dementia….
She laughed and said, “I don’t know. You can just call me Clara.”
I wasn’t sure what to make of this–because her name was Sue. I wondered if she’d had a cognitive lapse.
“I’ve always wished I were named Clara,” she said.
From then on, I called her Clara.
My name is Elaine and I hate jeans.
I’ve always hated jeans. When I was kid, I never wanted to wear jeans when my mom helped me get dressed. She’d remind me all the other kids would be wearing jeans. I didn’t care. I didn’t want to wear jeans. I wanted to wear sweatpants.
Actually, I wanted to wear sweatpants and a jersey. The jersey had to have a number on the back. And this was my uniform through most of my childhood.
Unless my mom made me wear jeans. I’d ask her why I had to dress up. Yes, I considered jeans dressy. Mostly because they were stiff and uncomfortable and I only had to wear them when sweatpants weren’t appropriate.
I hate the texture of denim. It’s not cozy and soft against my skin. It’s just annoying.
I do wear jeans sometimes now, but I still don’t like them. I’m particular about the texture of the denim–some are better than others. But they just aren’t comfortable to me. Why don’t we just make pants out of sandpaper?
I’m not sure my husband has ever actually seen me wear jeans within the walls of our house. I put them on immediately before I leave the house and take them off about 12 seconds after I get home. I know some people might sit on their couches in jeans and watch TV. Just thinking about that makes me cringe.
About a year ago, a woman told me about her husband who has Alzheimer’s and would continually take off his jeans in the house. She’d find him in the kitchen, the living room, the dining room, even on the deck…in his boxer shorts. He’d worn jeans pretty much every day of his life, but now he didn’t seem to want to wear them.
My first thought was, “Well, yeah, because they’re not comfortable against your skin.”
He obviously would agree. His wife noticed he didn’t do this with pajama pants, sweats, or even dress pants. Just jeans.
She asked why. I explained that sometimes people become more sensitive to textiles against their skin when they have dementia. And their preferences for different fabrics and materials may change.
A woman I know in the early stages of dementia bought all new bedding. She couldn’t figure out how she’d slept on those sheets and with that awful comforter previously. They weren’t soothing. They were abrasive. She went to Bed, Bath, and Beyond to touch bedding before purchasing. Although her husband couldn’t tell the difference between dozens of bedding sets, she would touch some and grumble. It took her a while to find a texture that appealed to her.
A young man recently told me about his grandfather with Alzheimer’s who decided he hated all the blankets in their house because they were “too heavy.” When they reminded him that he’d used these blankets for years, he seemed confused. There was no way he could’ve ever tolerated those heavy blankets.
A woman who always wore pants doesn’t like having anything pressed against the skin on her legs. She prefers skirts now.
A guy doesn’t enjoy sitting in his recliner anymore. He’s suddenly convinced that the fabric is cheap and scratchy.
Sometimes we think these people are just being difficult. They’re like the Princess and the Pea. They’re too sensitive. Finicky divas.
But those changes in sensitivity to texture are real. And, as dramatic as sounds, they can impact quality of life.
I mean, if I had to sleep in jeans, that would impact my quality of life. Honestly, I can’t even think about it without my contorting my face into some weird expression.
There are a lot of reasons that people with dementia might take their clothes off (and be perceived as “inappropriate”). Sometimes it’s because the fabric is abrasive to them. Someone might throw off all the blankets at night because they’re warm–or because the blankets are “too rough” or “too prickly” or “too heavy.” Maybe a leather recliner doesn’t work anymore because the feeling of the back of your thighs on the leather when you’re wearing shorts is just “too sticky” or “too suction-y.”
As for me, it’s late Friday afternoon and I’m writing at my favorite local coffee shop. I’m wearing jeans and thinking about fabrics has made them even more annoying than usual. I’m going home to put on sweatpants.
True story.
I was recently introduced to the term “toxic positivity.”
I instantly knew what the term referred to, and I could relate.
I see it on social media….Positive vibes only…Think happy thoughts…There’s always a silver lining…It’s a great day to have a great day.
And I can remember times when I was struggling and someone shot that toxic positivity crap at me.
Years ago I was dealing with ongoing anxiety issues when a friend told me, “Just go to your happy place.” I wanted to respond, “Just go to hell.”
Then she wanted to remind me of all the blessings in my life. She was trying to help, but the message I received was that I was a failure for struggling when I had so many good things in my life.
Yes, I have a million positive things in my life, and I’m grateful for those things. I still have bad days. I shouldn’t have to feel guilty for that.
Positive thinking is great. But it’s human to feel a wide range of emotions—and not all of them are going to be positive. You are not doing something wrong if you can’t see the silver lining. Maybe your situation really does suck. And maybe in time a positive lining will come into focus, but perhaps you don’t see it now. And that’s okay.
The problem with toxic positivity is that it makes us feel like failures if we can’t maintain a smile in the face of adversity. Guess what? You don’t HAVE to smile through adversity.
A woman I know told a friend that her husband had been diagnosed with Alzheimer’s. Her friend’s response was “At least it’s not cancer.”
Way to look on the bright side….except the bright side sometimes fails to acknowledge that humans experience loss, and we are allowed to grieve those losses.
You are allowed to cry in your car in the Target parking lot. You’re allowed to yell as loud as you like in the shower. You’re also allowed to do these things in public for that matter. Maybe it will make others uncomfortable. So what.
Let’s talk about death and toxic positivity.
You should be thankful he lived such a long life.
We should all be grateful he’s in a better place.
You should be glad he’s not suffering anymore.
Sure. But someone you love is dead and that’s hard. Comments like this minimize loss. I don’t care if the person was 98 years old and the happiest son-of-a-gun you’ll ever meet. You get to experience that loss without someone telling you how grateful you should be.
Sometimes we all feel sad. We feel cheated by the universe. We get pissed off. That doesn’t mean we have a bad attitude. It means we are human.
I overheard this conversation at a nursing home recently:
Woman 1: It’s so hard that Dad’s here.
Woman 2 (Woman 1’s sister, I assume): But there are much worse nursing homes.
Woman 1: I know, but it’s so sad seeing him here.
Woman 2: Yeah, but we should be grateful the nursing home is so close to Mom.
Woman 1: Yes, but it doesn’t make it any easier.
Woman 2: I’m just saying we should look on the bright side. We are blessed.
Spoiler alert—Woman 2 is one of those toxic positivity mongers.
The bright side. The silver lining. There’s always someone worse off.
It’s okay to not focus on the bright side. It’s okay to not look for the silver lining. It’s okay to be sad.
And feeling sad doesn’t mean you aren’t blessed. It doesn’t mean you’re not grateful for those blessings. It doesn’t mean you’re ungrateful or unappreciative or that you lack empathy for other people’s struggles.
It just means you’re sad.
You’re allowed to be sad.
Somehow I’ve managed to send you a blog post that has WHITE font on a WHITE background. Don’t be too hard on me. It’s Monday.
If you received a blank email from Dementialand this morning…you can access the post here:
The Meaning of Life in Dementialand
Just kidding. (Keep in mind this is from the same woman who last week completely skipped #3 on a list of 10 things care partners need to know. I don’t know the meaning of life; I can’t even count to 10.)
I consider myself more practical than deep. I’m not a pastor and I’ve only taken one philosophy class—and that philosophy class wasn’t my favorite class of my undergraduate career. In fact, I took it only because my boyfriend was taking it.
But let me start with this…
I was reading a story online a few weeks that gave me pause. A woman was told in the middle of her pregnancy that her child, according to the doctor, had “no chance at a meaningful life.” She and her husband had to make some difficult decisions. To be honest, I don’t remember what they decided and I can’t recall the outcome of the pregnancy.
What I do remember is that I stopped for a moment at “a meaningful life” to contemplate what that meant. Could someone live for only 30 minutes and have a meaningful life? Could someone be on a ventilator and have a meaningful life? Could someone without brain development have a meaningful life?
I am not proposing an answer to those questions. I get enough emails with negative comments about my blog….I’m not planning to venture to discuss a topic that forays into the pro-life/pro-choice debate.
But what is a meaningful life and what qualifies this doctor to answer that question?
Could the parents perceive a meaningful life when the doctor doesn’t see it?
Is what qualifies as a meaningful life subjective? Or individual to each person? I mean, there’s no rubric for whether or not someone is going to live or is living a meaningful life.
This doesn’t just apply to pregnancy, of course.
A woman I once met at a speaking engagement had a sister, whom I will call Elizabeth. Elizabeth was a career-oriented lawyer who had never married (or even had a romantic relationship) or had children (or had any interest in her nieces and nephews). She was independent, educated, wealthy, and a pretty big deal in the city in which she lived.
Elizabeth watched her mother decline and pass away from younger-onset Alzheimer’s and frequently made comments like “I’d rather be dead than live in a nursing home” and “Please shoot me if I get Alzheimer’s like her.”
This frustrated her sister, who interpreted these comments as “Mom is better off dead” and “I’d rather be dead than be like Mom is now.”
As luck (or genetics) would have it, Elizabeth was diagnosed with younger-onset Alzheimer’s. She retired from her legal career earlier than planned and spoke pessimistically of her future.
“I am not going to be one of those aimless idiots wandering around the nursing home with no purpose,” she’d said. “I’ll kill myself before that.”
As it turns out, Elizabeth’s Alzheimer’s progressed quickly and her sister made a decision that she could no longer live alone. Elizabeth and her family arrived at the nursing home with a few suitcases and a recliner. Elizabeth seemed sad but resigned to her new living situation.
But a funny thing happened.
Although she dreaded becoming someone who was purposeless, Elizabeth’s sister saw her develop a sense of purpose like she never had before. Elizabeth might have lost her identity as a high-powered lawyer, but she gained an identity as what nursing home staff referred to as a “cheerleader.”
No matter who came in her room, Elizabeth told them that they were smart, good-looking, loveable, and many times “perfect.” Nursing home employees said that they argued about who got to work her wing because being around her was such a joy.
Elizabeth’s sister couldn’t have been more shocked. She had never received a compliment from Elizabeth in all her life, but now when she visited she was told her she was “a ray of sunshine” or a “gorgeous woman.” More than anything, the anxiety and stress that had plagued Elizabeth during her life seemed to melt away. She seemed happier than ever. Joyful as a child without a care in the world. Was this is the meaningless life she had feared?
Elizabeth had given her family strict instructions to pursue limited medical inventions when she no longer had quality of life. When they had to make decisions, they struggled. She developed an infection and needed IV antibiotics. At one point, she broke her hip. Then she started experiencing respiratory issues. And heart issues. They evaluated whether or not to put in a pacemaker.
Elizabeth was unaware of the details of her health challenges. She remained positive and upbeat….and, according to her family, happy. Her family was left to determine when they should seek care and when they should not.
While she had expected that dementia would lead her to a life without meaning, her family saw that her life had meaning in a way that it hadn’t before.
But who decides when life has meaning? And who decides when it no longer does? Or, perhaps, life always has meaning no matter the circumstances.
If pre-Alzheimer’s Elizabeth could take a sneak peak at post-Alzheimer’s Elizabeth, what would she think? Would she still want someone to shoot her? Or would she recognize that she was making a positive difference in the lives of family and nursing home staff? Is that enough to qualify life as meaningful?
Would Elizabeth think so?
