When Dementia Changes Personality (and Why Sometimes That’s Not All Bad)

A college friend of mine, Holly, reached out to me recently about her grandparents, Nina and Del, who had just moved into assistant living. (I’m changing their names here because Holly worries about what her family might think of her perception of the situation.)

Nina has Alzheimer’s, and Del has a disease that caused paralysis in his lower body. Neither were excited about the move, but Del knew that his physical limitations meant he couldn’t care for Nina at home any longer.

I remember Nina coming to visit the residence hall often. What I remember about her is that she was one of those people who had an opinion. Anything you talked about—she had an opinion. It didn’t matter if she knew anything about the topic.

I have one vivid memory of Nina visiting our residence hall. It was during the Clinton impeachment, and she had opinions. I kept trying to delicately change the subject. It didn’t work. Holly and I laughed about it after.

On a different visit, Nina unclogged the sink in my dorm room. Then she gave me a stern lecture about how to avoid getting that much hair in my sink again. Her suggestion? A haircut. She told me my hair was unnecessarily long. In my defense, it barely skimmed my shoulders.

In appearance, she was “simple.” And I don’t mean that she wasn’t attractive. It was just that she limited herself to the bare minimum. Jeans. A t-shirt. Nothing frilly. Her hair was cut short, almost in a buzz cut. She wore no makeup and no jewelry. There was nothing unnecessary about her appearance.

Holly went to visit her grandparents a few weeks after they had moved into assisted living. She went to their room, and Del gave her an exasperated look.

“Wait until you see your grandmother,” he warned.

And just then Nina walked in…in full makeup. And full might be an understatement. Perhaps extraneous would be a better description.

Black liquid winged eyeliner. Bronzer that made her look somewhere between sun kissed and orange. Eyebrows painted on. And the lipstick.

“What do you think?” she asked excitedly. “I feel BEEE-YOU-TEEEE-FUL.”

Once a month, the assisted living hosts a group the female residents call “the beauty shop girls” once a month. They’re students at a local cosmetology college and volunteer their time to do makeup and nails for the residents.

Del told Nina it wasn’t something she’d enjoy, but a few female residents came around to invite her and away she went. Del was convinced she’d be back in the room in a few minutes…once she figured out that this activity wasn’t for her.

One of the cosmetology students asked Nina if she liked to wear make up. She said she had never tried it.

When asked if she’d like to try it, Nina told the student, “Yes, do it like yours.”

And so she did. Nina ended up with the trendy make up style you might expect to see on a college student going out for a night on the town. She was so proud.

Despite her stopping to look in every mirror to admire her new look, Del was not impressed. He kept telling her that she didn’t wear makeup. He even told the staff that she shouldn’t be invited to this event next time.

When staff told him how much she seemed to enjoy the makeup, he said that he didn’t care.

“She wouldn’t want this,” he kept saying. “She’d be embarrassed.”

She participated in a few other events that she would have had no interest in before. She did crafts…which her family found ironic because Nina had always said that crafts were for people who didn’t know how to do real useful things with their hands. She sang along in the music activities, something she wouldn’t have been caught doing years ago. She even did the hand motions that went along with the songs.

Del kept saying, “She doesn’t do this. It isn’t her.”

The family was frustrated that Del couldn’t see that she enjoyed these activities. He told everyone she’d be embarrassed if she could see who she had become. It wasn’t her. 

Del was prepared to the memory challenges that Nina’s diagnosis would bring. No one told him this would change her personality. No one told him she’d be doing things she wouldn’t have been caught dead doing just a few years before.

A few family members from out of town came to visit. They hadn’t seen Nina for a couple years, and they were stunned at the progression of her disease.

But there was something else….they liked the new Nina (as they referred to her). Nothing against the old Nina, of course, but new Nina had a certain lightness and joy about her.

Old Nina and new Nina had some things in common, but it was apparent that they were different.

To my friend, loving her grandma meant letting go of the old Nina. The family adopted that terminology…new Nina and old Nina. I’m not sure I would suggest using that terminology, but it helped to free them from comparing Nina to who she was in the past and accept who she is now. It helped them to accept that Nina had changed.

The new Nina is open to wearing winged eyeliner. She has fun doing elementary craft projects. She convinces everyone to join in the sing along. She dances. And—although she had never let her family have a dog because she just didn’t like them–she has become quite attached to the dog who lives at the assisted living. Yes, new Nina is dog person.

New Nina gets confused. Sometimes she wanders the halls looking for family members who have passed away. She struggles to remember why she lives in this place and where her family is.

But most of the time she seems happy.

My friend confided in me that new Nina is in some ways more likable than old Nina. Old Nina criticized her for not having a clear career path. New Nina tells her she is beautiful and can’t remember what she does for a living. Old Nina made strong and sometimes rude criticisms about her parenting. New Nina just giggles with her kids.

Holly took Nina to get a pedicure, which they both enjoyed. One day they went to a paint-your-own-pottery place, and Nina excitedly painted a dog dish for the dog at the assisted living. 

“Is it bad that I enjoy being around new Nina more than old Nina?” Holly asked.

She didn’t say she loved new Nina more than old Nina.

There’s nothing wrong with enjoying the person in front of you right where they are in that moment. Black eyeliner and all.

Del isn’t there yet. He needs old Nina. That was his Nina, and he’s not interested in getting to know a new one.

I can’t blame him. I can’t imagine how hard it is to see your partner change so dramatically.

But I hope he comes around. New Nina sounds fun, and I don’t want him to miss out.

 

 

 

 

What to Buy People Living with Dementia for Christmas

A few years back, I got an email from someone who worked for a website that provides resources for seniors. She asked me to write a short article on holiday gifts for people living with dementia.

She suggested that perhaps I could make a list of items, maybe with links to purchase those items, and describe why those items would make good gifts for those with dementia.

When I received the invite, I was feeling overwhelmed, so I declined citing my busy schedule. I also have a firm rule about not promoting certain products and services. That’s out of my comfort zone. (I’ve been approached many times about mentioning products in my blog…and I just can’t enter that realm.)

However, there was another reason the project didn’t appeal to me…writing an article with specific gift suggestions for those living with dementia implied that those living with dementia want the same gifts.

I frequently remind myself and others that people with dementia don’t share a brain.

Once I told a group of people that individuals living with dementia don’t like to be called “honey” or “sweetie.” A few weeks later, I met a woman with Alzheimer’s who said she knew the nursing home staff loved her because they were always calling her “sweetie.”

My statement had been proven false. Not all people living with dementia dislike being called “sweetie.”

I had done something I try not to do; I had made a blanket statement about people with dementia. While I don’t recommend we make calling those with dementia “sweetie” our protocol, I can’t speak for all people with dementia. I do not know the likes and dislikes of every single person with dementia.

To assume these individuals are alike denies that they are diverse humans who have lived interesting and rich lives. They’ve been impacted by genetic, familial, and societal factors since before birth. They have been impacted by dementia, of course, but dementia doesn’t negate the impact of other factors.

I should also add that a person with dementia doesn’t speak for all people with dementia. If one person with dementia tells me that they don’t enjoy live sports because they are too anxiety-provoking, I shouldn’t assume that all people with dementia avoid sporting events. If one person with dementia tells me that they prefer to not be hugged, I shouldn’t assume that all people with dementia will be upset by a hug.

People with dementia are just as different from each other as people without dementia are from each other.

Different backgrounds. Different religions. Different political views. Different hobbies.

So what do you get someone with dementia for Christmas?

I know someone with dementia who ran a half marathon in the spring. I know another person with dementia who gets up every morning at 5 am to go to work at a local bakery. I recently met a guy with dementia who spends his time traveling around with his wife in an RV. And then there’s a woman with dementia at a local nursing home who is now in hospice.

I know people with dementia who are in their 40’s. I know people with dementia who are centenarians.

People with dementia live at home with their families, alone, in memory care communities, in senior apartments, in nursing homes.

How do I write a top ten list of gifts for a group this diverse?

And how do I suggest gifts for people I’ve never met?

Dementia is an umbrella term. Under this umbrella, we have diagnoses like Alzheimer’s, Lewy-Body dementia, Parkinson’s disease with dementia, frontotemporal degeneration, and vascular dementia. Dementia itself isn’t actually a diagnosis. It’s a constellation of symptoms involving deterioration of the brain.

So what Christmas gifts do you buy for someone who has a condition involving deterioration of the brain?

Let’s talk about a different medical condition. For the sake of discussion, let’s talk about anxiety. I was diagnosed with an anxiety disorder about 20 years ago, so I decided to do a web search to see what gifts are recommended for those with anxiety. After all, these should be things I want for Christmas, right? Maybe I can find some stuff to put on my Amazon wish list.

Here’s what I found:

An assortment of soothing teas. (I hate tea. I think it smells like urine.)

Dark chocolate. (I can’t say I don’t like dark chocolate. But if you know me, you know I try to keep sweets and candy out of our house.)

Cuddly plush toys. (If you give me a cuddly plush toy, I will give you a funny look. What exactly am I supposed to do with this stuffed tiger?)

A poster that says “F*ck Anxiety.” (To be fair, I don’t hate this. But I don’t know where I’d hang it.)

A self-help book on reducing anxiety. (I might actually be angry on this one. So you know what I need to do to cure my anxiety? So you’ve got all the answers?)

Therapy sessions. (Oh my goodness. Don’t you dare even try this. I’m picturing a group of friends at a holiday party saying, “We all went in together and made you an appointment with a psychologist!” No. Just no.)

Gift certificates for massage. (Okay. Yes. This is right on. Please buy me this for Christmas, everyone.)

Lists of this type imply that: 1) It’s your job as a gift buyer to help me me cure/treat my medical condition (it’s not), and 2) You should choose a gift related to my medical condition rather than choosing a gift based on what you know about me as a human being.

Since I was asked to write an article about gifts for those with dementia, I assumed that other people had written similar articles. I googled, and I was right.

There are quite a few suggestions for gifts for dementia patients…and I have a problem with that terminology. You don’t buy a gift for a patient. You buy a gift for a person. And a person’s diagnosis should not be the primary factor in what you buy that person.

Nevertheless, the internet suggests the following gifts for people with dementia: Classic movies, CDs of favorite oldies music, shoes with velcro ties, sweatsuits, dolls, fluffy stuffed animals, large clocks, giant calendars, location devices for someone who wanders, and automatic medication dispensers.

I’m just going to go out an a limb here and say that an automatic medication dispenser is not a good gift for anyone at any time. If someone needs one, buy it for them. Don’t count it as a gift. You might get the same response a friend of mine got when he bought his wife a Swiffer mop for her birthday.

As for the location device….Ugh. Can you imagine being excited to open gifts and realizing you’ve been given a tool so your family can track you? Think about that for a minute.

Oh, I’m so grateful you gave me this gift because you don’t think I’m capable of being responsible for myself. And now you’ll know where I am ALL the time? Merry Christmas to me!

Many people with dementia don’t like the idea of being tracked. And I can’t blame them.

If it’s tool that might be helpful, buy and buy it now. Don’t wait until Christmas. Trust me–it doesn’t count as a gift.

I know a lot of people with dementia who do not wear sweatsuits. I know plenty of people with dementia who would take those velcro shoes straight to Goodwill. I also have a lot of friends with dementia who no longer have a CD player because they use their iPhone or computer to play music.

Making a list of gifts for people with dementia implies that people with dementia are similar and have similar wants and needs.

A person’s medical diagnosis should not define an appropriate gift. We don’t buy gifts for patients. We buy gifts for people.

 

 

Dementia, Know-It-Alls, and Unsolicited Advice on Fixing Dementia

Sometimes I think I should rename this blog “Things That Frustrate Elaine.” And that’s being gentle.

For the past nine months, I’ve struggled with nerve pain. More recently, I have some level of numbness in my hands most the day. I’ve had an MRI. I have a diagnosis, two prescriptions, and a referral to physical therapy. This is something that will be chronic, but it seems like my health professionals are confident we can keep it under control.

In other words, don’t y’all be worried about me.

Yet, the input keeps rolling in…

They say that cherries are really helpful for inflammation. ( I want to ask, who is “they?” Are we talking about researchers at a university? Or people in the Facebook group “Cherries for Inflammation?”)

I know someone who had nerve pain and it was actually a tumor and then they died.

I heard that nerve pain has a lot to do with gut health. Do you drink apple cider vinegar?

I started doing (insert: yoga, meditation, inversion, Cross-Fit, prayer, supplements, special diet, cartwheels) and my pain got better. 

What you really need to do is retrain your nerves and teach them to be calmer. (This makes me picture myself doing a Powerpoint presentation in front of a hyper classroom of nerve roots.)

Ugh.

If you or a loved one has dementia (or cancer or a peanut allergy or Lyme disease, for that matter), you can relate.

Has someone made a ridiculous suggestion to you about how to fix the problem? Perhaps they implied that there was a simple solution…and you just hadn’t identified it yet. You might have been insulted, and you were justified.

I read an article about a woman with dementia who changed her diet and she got her memory back. (This article is currently circulating on Facebook…don’t get me started.)

They keep my great-aunt who has Alzheimer’s really stimulated by making her do puzzles all day. It keeps it from getting worse.

My grandma had hardening of the arteries. It got better when she stopped drinking.

You know you won’t get that Oldtimers if you have a glass of red wine a day, right?

Have you tried coconut oil or vitamin E? (Or milk thistle or lavender or iron pills?)

These comments come from well-meaning individuals who typically know next to nothing about Alzheimer’s and related dementias. In fact, they likely do not know the difference between the terms Alzheimer’s and dementia. And they often place a mysterious “T” in Alzheimer’s, referring to it as Alltimers.

Let me be clear here. If you haven’t had any education on Alzheimer’s and related dementias, I don’t expect you to be well-versed. I’m not judging people for their ignorance. I’m merely suggesting that those who are not well-versed in this area should refrain from giving advice.

Furthermore, when you tell someone that you or loved one has been diagnosed with a dementia-causing condition, you aren’t asking that person for a fix. You didn’t ask for advice. You aren’t expecting that person to give you a magical dementia cure.

You didn’t say, “Please vomit up every single thing you’ve ever read on the Internet about dementia.” You didn’t ask, “What outdated Facebook articles can you tell me about so I can cure myself?”

These people might be distant acquaintances, but they are often close friends and family. Maybe you’re caring for Mom, but your brother keeps calling from across the country with ridiculous “solutions.” Perhaps it’s a family friend who once read a book on Alzheimer’s and now has all the answers. Maybe you delete their texts because you don’t have the energy to respond. Or maybe you get in arguments because you think their ideas are off-the-wall.

Perhaps you feel like they just don’t understand. That’s the other thing about offering unsolicited magic cures…what you’re really saying is, “Your problem isn’t a big deal. It can be easily fixed. You just haven’t been smart enough to find the solution yet. But I have it.”

It’s dismissive.

When I lived alone in a house that was built in 1942, I used to go to Home Depot every other week with a house problem. I’d explain it to the Home Depot employee in their orange apron, and I’d expect them to give me a fix. There was one older guy in particular who seemed really invested in me not hurting myself or burning down the house.

They didn’t need to come to my house to physically fix the issue (although I would’ve paid top dollar for that), but they did need to walk me down aisles, tell me what tools to use, and give me a specific fix for the problem. And, bless their hearts, they’d do their best to give me useful instructions and send me on my way.

In this situation, I wanted someone to say, “Your problem isn’t a big deal. It can be easily fixed.”

But dementia isn’t like a leaky toilet or clogged gutters. There isn’t one simple solution out there–and if there were a solution, it would probably not come from a know-it-all who isn’t educated on dementia but spends a lot of time on social media and once knew a person whose mother’s uncle had a type of dementia that they can’t remember or never knew in the first place.

Why do know-it-alls do this? Why do people think they need to give us advice that is at best useless and at worst harmful when we mention we have a health issue?

I’m going to give people the benefit of the doubt here. They’re not trying to be jerks. I think we want to be helpful. We want so desperately to fix a problem. Let’s just solve this dementia thing so you can get on with your life.

If someone tells you that they have Alzheimer’s, Lewy-Body dementia, frontotemporal degeneration, cancer, HIV, arthritis, or osteoporosis, resist the urge to regurgitate every thing you’ve ever heard related to that condition. It’s not helpful. And it typically makes you sound like an idiot since you have not become an expert on this condition in the past five seconds.

If you think about it, so many problems in life are not fixable. That doesn’t mean we can’t help. Help is listening. Help is being supportive. Help is offering to watch someone’s kids or mow their lawn. Help is sending a random Starbuck’s gift card just because.

Dementia is degenerative. We may not know how to fix damaged brain cells, but that doesn’t mean we can’t help. It’s just that sometimes helping doesn’t involve fixing.

Unless you work at Home Depot.

I expect solutions from them.

 

 

 

 

Loving Someone Where They’re At: A Story About Marriage, Napkins, and Pens

My husband did an Ironman triathlon in 2014. I was proud of him, and I’m sure you could tell that in my voice if you were to hear me talk about it.

A 2.4 mile swim. A 112 mile bike. Then a 26.2 mile run. I can’t wrap my brain around it. Why anyone would choose to pursue an Ironman triathlon for the sake of a hobby is beyond me. But it does make me proud that my husband chose to do so.

I heard the same pride in someone else’s voice recently when he was talking about his spouse’s hobby. It was an older gentlemen I met at conference put on by the Alzheimer’s Association. He came up to me, holding hands with his wife. She smiled but remained silent. He let go of her hand only momentarily to give me an enthusiastic handshake.

He introduced me to his wife. He mentioned she now had Alzheimer’s, and she lived at home with him. I smiled at her, and she smiled back despite seeming that she wasn’t following the conversation.

“Do you know what she really loves doing?” he asked me with a giant grin of proud excitement. “She loves rolling up napkins and wrapping them around pens! And she’s good at it!”

I felt like he was almost bragging.

I was a bit taken a back. Here was a guy who was telling me that his wife wrapped pens in napkins with the same pride I had when I told people that my husband did an Ironman triathlon.

People frequently tell me about the “odd” behaviors of their loved ones with dementia.

My wife puts dishes in the dishwasher, even if they’re clean.

My husband does laps around the basement all day.

My mom likes to play in the kids’ sand box.

Typically, there’s a question that follows. The question is: “What can I do to get them to stop?”

And no one has ever bragged to me that their mom is good at playing in the sand box.

But this man wasn’t asking how to get her to stop wrapping pens in napkins. He wasn’t considering this an odd or annoying behavior. In fact, he asked me what other activities she might enjoy if she got such a kick of out of doing that.

I found a napkin and a pen (ironically)—and I wrote on that napkin a list of supplies he could get at Hobby Lobby or Wal-Mart. Crepe paper. Metallic wrapping paper. Fabric scraps. Shiny pipe cleaners. Colorful bendy straws.

We decided he should put all of these new supplies out of the kitchen table and sit with her. Then he’d see what happened.

And he was excited. I don’t even know how to convey how genuinely enthusiastic this man was about the plan we had created. He told me he’d go shopping the next day if he could get a ride.

I wish I had gotten his contact information to follow-up. I don’t even remember his name or his wife’s name.

But I’ve thought about them a lot.

I’m not an expert on love, but there’s something to be said for loving someone where they’re at. I’m sure he loved his wife when she didn’t have Alzheimer’s. I’m sure he loved her when they could have interesting conversations and go on adventures together.

But when I spoke to him, he wasn’t focusing on what she couldn’t do. He wasn’t focusing on who she no longer was. He was focusing on who she was now.

And, when her abilities were becoming more and more limited, he looked at her and saw a strength. He could’ve focused on a million weaknesses. He could’ve told me about the struggles and challenges of Alzheimer’s, but on this day he told me about her potential.

She was really good at wrapping napkins around pens. He celebrated that. He loved her where she was at.

And when she sat down and concentrated on wrapping those pens, it made him so proud.

Sometimes the people I meet are pretty dang amazing.

Dementia Isn’t a Marathon

I used to say something that makes me cringe now…I used to say “Dementia is a marathon, not a sprint.”

I would use that statement to encourage people with dementia and their care partners to practice self-care. You have to take care of yourself if you’re running a marathon, right? You have to accept water at the aid stations, just like you should accept help from family and friends if you or a loved one has dementia. You need to not push yourself too much because you’ve got miles to go, and you need to be strategic about how you use your energy.

See? Dementia’s like a marathon.

Ugh.

If I spoke to you years ago and made that statement, please forgive me. It was a dumb thing to say. It isn’t the dumbest thing I’ve ever said—because I say lots of dumb stuff—but it’s pretty dumb.

Here’s the thing, friends. I’ve run a marathon. I decided to do it in the summer of 2012. I knew I’d have a flexible schedule that summer. I had undergone knee surgery the previous year and was feeling like a new woman. I was looking for a challenge.

I signed up for a marathon. I mean, what else do women in their 30s do when life gets stagnant, right?

It was on a particular date, obviously. I knew how my time I’d have to train.

I reserved a hotel room for the nights before and after the race. I looked up restaurants for the night prior to the marathon. I did those things about three months before the actual marathon. You can never be too prepared, right?

I finished that marathon. I wish I had been faster, but I finished.

I’ve heard people say that you’re a different person after you complete a marathon. I wasn’t. I was just me…with a marathon under my belt. That felt good, of course, but I can’t rank it among my most life-changing events. I might run another marathon someday. I might chose not to.

How, my friends, is running a marathon anything like dementia?

Both can be long, obviously, but I can tell you exactly how long a marathon is. It’s 26.2 miles. And then it’s over. Done. Where are my post-race snacks?

I’m sure everyone who has done a marathon counted down the mileage. 13 miles to go. 8 miles to go. 3 miles to go. And then .2 miles to go. If you’re a marathoner, you know that .2 is not insignificant.

If you’ve run a marathon, you know that well-meaning people shout “You’re almost there!” at mile 8 and you want to punch them. You’re not almost there. You know exactly how many miles are left.

Let me ask you this….

How long is dementia? How long will a person live with dementia? How long will a carer caregive? Exactly how long is this journey?

Although a marathon has an exact distance, dementia doesn’t.

I chose to do a marathon. As much as I complained about bloody blisters, lost toenails, chafing, and 4 am 15-mile runs, I made the choice to do a marathon. I wondered at times if it was a great decision, but it was always my decision. When I complained to a friend that I had to get a run in at 8 pm on a Saturday night, he told me I didn’t have to. I was choosing to do that run. He was right.

But dementia isn’t a decision. It’s not a choice. You don’t get to plan to get dementia at the “right time,” like I decided to run my marathon at the “right time.” And, if I had decided to sit down on the curb on one of those early morning 15-mile training runs, I could have sent my husband a text and he would have come to pick me up…well, as soon as he woke up.

You can quit a training run. You can drop out of a marathon. Sure, maybe it doesn’t feel great to quit, but you always have that option.

I wish you could quit dementia. I wish you could say, “Eh. This is really hard today. I’ll come back to dementia tomorrow when I’m more rested.” I wish you could say, “Dementia, this isn’t really working out. I’m done with this.”

Whether you’re a care partner or a person living with dementia, you can’t quit dementia.

Everyone made a big deal when I finished a marathon. In retrospect, the marathon was easy compared to the training, especially since I did most of the training solo.

But the second I crossed that finish line, I started getting voicemails, texts, and Facebook messages. I got a medal. More importantly, my husband drove me directly to Dairy Queen where I ordered a large Blizzard. It’s the only time in my life I’ve let myself order a large Blizzard.

You don’t get a medal when dementia is done. You don’t get to go to Dairy Queen. A guy I know recently lost his wife to Alzheimer’s. He had hoped for dementia to be over. He didn’t want her to struggle or live in pain any longer. But after she died, he said, “I wanted this phase of my life to be done. But now I just feel so empty.”

That’s the opposite of a medal.

I had a conversation with a close friend a few weeks ago. Her husband was diagnosed with cancer in May. He had inpatient chemo for 30 days and is now finishing up (fingers crossed) outpatient chemo.

She confirmed that cancer is no more like a marathon than dementia is. She and her husband did not, in fact, sign up for cancer online. They did not choose the date and place they wanted to experience cancer.

They did not, and still do not, know where the finish line is. Or if there even is a true finish line. Even if chemo does its job, there’s always a chance cancer will return.

My marathon might return, too. But only if I sign up for it.

And let me close by saying this—with the hope it won’t offend anyone.

Running a marathon is challenging, but if it’s the most difficult thing you’ve ever done, I’m glad for you.

Dementia isn’t a marathon. It’s not a sprint.

Turns out, it’s not a running event at all.

 

 

See You Later, Alligators!

Good morning, my friends!

It’s time for me to take a break. I’ll be back in the fall. In the meantime, I’ll be running some of my favorite older posts on the Facebook page.

I’ve got a report at work I need to focus on. After that, we will be headed to the beach for a week.

While I’m gone, don’t forget to be kind to yourself.

I leave you with one of my favorite quotes:

“She believed she could so she did but then she needed a break.”

Maybe I added that last phrase.

See you later, alligators.

 

 

Dementia, Unscripted Conversations, and How Much I Sweat

I had driven across Iowa on a hot and humid summer afternoon to give a presentation to staff at a memory care community. I couldn’t park close, so I had to walk for about five minutes to get to the building.

By the time I entered the lobby, I was sweating. Not sparkling or glowing or any of those other words women who don’t sweat much might use. I was sweating.

And I sweat a lot.

A friend of mine goes to a workout class with me and walks out looking refreshed. I walk out looking like I’ve been stranded on an tropical island for weeks and someone just rescued me…except I’m not that skinny. Ten minutes of exercise and my hair is drenched, my mascara is dripping down my cheeks, and my shirt looks like it’s just been pulled out of the washer.

I know there are medical conditions that cause excessive sweating, but I don’t have one of them. I’m just a woman who sweats a lot.

As I entered the memory care community on this particularly sweltering day, I saw a bench. I decided to sit for a minute and attempt to stop sweating before I walked in to do my presentation.

An older woman with a walker slowly made her way up to me. I greeted her, but she didn’t respond. She sat down next to me.

I figured she didn’t want to visit, so I pulled out my phone to check for messages.

Then she said, “You sweat more than the average girl, don’t you?”

I put my phone down. I hadn’t realized I was sweating quite that much. I told her that I did sweat a lot.

“It’s good. You get the bad stuff out faster so you can be a better person,” she explained.

I hadn’t heard that before, but I was intrigued. In fact, it was the most positive interpretation of extreme sweating that I had ever heard.

“Like toxins?” I asked.

“Oh no,” she said. “Like old boyfriends.”

“You sweat out old boyfriends?” I asked.

“Unless you want to keep them inside,” she answered.

I nodded. I certainly didn’t want to keep old boyfriends inside. I mean, let’s sweat those guys out and be done with them.

There was a short silence as I pictured tiny versions of my old boyfriends sitting on my skin until I wiped them off with a towel.

I asked her if she had sweated out all her old boyfriends.

She said, “No, I don’t sweat so much.”

Then she got up and shuffled on.

And somehow, I didn’t feel so self-conscious about sweating.

There’s something about this conversation that I love.

This woman didn’t introduce herself. She didn’t try to make small talk. She wasn’t commenting on the weather or complimenting my dress.

She went straight for my sweating.

Perhaps it wasn’t appropriate. Or maybe it wouldn’t be appropriate in most settings. Most of us understand that you shouldn’t go right up to someone and comment about what might be making them self-conscious in that moment.

But it’s par for the course when you sit down in the atrium of a memory care community.

If this woman hadn’t had dementia, we probably would’ve had some generic scripted conversation like “Hi. Hello. How are you? Good. And you? Fine. Isn’t it so hot out? When will it cool off?”

Sure, I’ve had lots of people with dementia make comments to me that aren’t kind.

A guy at a facility that I frequently visit often tells me I’m looking fat. Once a man with dementia told me my hair was scroungy like an alley cat.

I know that sometimes people with dementia lose their “filter” or social judgement as the condition progresses. This can mean hurt family members and awkward situations.

Yet, there is a part oft this departure from typical conversation that I enjoy.

When the person with dementia doesn’t follow the “social script,” I feel like I don’t have  to either. And there’s some barrier that breaks down.

A woman with dementia commented on my sweating. She didn’t ask me how I was or why I was visiting. She went straight for the sweating.

I didn’t expect that to come my way, but I leaned in. I didn’t just nod and smile. I wanted to engage.

And I got a reward. Now when I am sweating a lot I picture my old boyfriends squeezing out of my pores.

There’s something strangely fulfilling about that.

 

 

 

Why It’s Okay to be a Proud Caregiver: A Story About My Grandma

This is a story about caregiving.

And it’s a story about my grandmother, Betty Catherine Terry Vickers Mohesky.

She was a caregiver, and she rocked it.

Let me acknowledge that loss is undeniably linked to caregiving.

My grandpa had multiple chronic illnesses. He had cancer. He had diabetes. He eventually had his leg amputated. For ten or so years, we watched his functionality and independence decline. He passed away when I was in grad school.

It is not my intent here to focus on that loss. It’s my intent here to focus on what I saw as a gain.

My grandmother didn’t finish school. Throughout her life, she was a hard worker, but she never had what I’d call a career. It was rare to see her dressed up. She loved fishing, and you’d often see her in stained jean cutoffs or what she called her “highwaters.” When capri pants came back around 2000, she joked that she’d been wearing them all along.

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She wasn’t sophisticated, fancy, or educated, but she was fierce.

My uncles were in an motor vehicle accident that she attributed (and rightly so) to a poor designed bridge. She pestered the state legislators to modify the bridge. After a young woman died on the bridge, they finally made the changes. After my grandma died, they named the bridge after her. If you are ever driving near Cuba, Missouri, keep your eyes open for the Betty Vickers Memorial Bridge.

But here’s what I want you to know about her…

Caregiving made her better. She learned about blood sugar and the pancreas and blood thinners and kidneys and dialysis. She drove my grandpa an hour each way several times a week for kidney dialysis. She kept up communication with several specialists. She got him to every medical test and procedure and appointment.

When I visited their house, I would scope out this calendar by the house phone (which was just known as “the phone” at the time). There was no Google calendar, just this free calendar that the bank distributed yearly.

It was stacked with medical appointments–sometimes more than one in a day. The wall by the phone was also plastered with business cards of medical offices and services. She kept everything straight. In fact, she made it look easy. I’d hire her as my personal assistant anytime.

When it was time for my grandpa to do home dialysis, she became the master of the equipment and procedure. She would proudly explain to us the steps she had to take to make sure it was sterile. And I’d think it was weird that this tube ran straight from my grandpa’s bladder into the house toilet at night.

Over her years of caregiving, she was forced to learn about a multiple of health conditions. But forced isn’t really the word I’m looking for…she didn’t go looking for these challenges but she embraced them.

She obviously didn’t want my grandpa to have increased medical needs, but she took pride in how she’d learn the ins and outs from his doctors and share info with us. Caregiving threw her into this new world, and she was pretty damn good at navigating this new world.

At the doctor’s office, they called her “Nurse Betty.” And she loved it. She gained a sense of confidence about her knowledge and ability in the area of health care.

It’s only years later that I can see the irony of this…My grandpa’s increased health needs led to a sense of accomplishment for my grandma.

Maybe it’s bittersweet, but when I think of my grandma during this time, I smile with pride.

She took on the challenge. It wasn’t one she was prepared for. She didn’t have the knowledge or education to read medical records, but she figured it out. She asked questions. She advocated for my grandpa. Through the process, she made friends with nurses and the families of fellow patients.

She left the hospital at one point to run to Walmart. A nurse had just complimented a pair of sandals she was wearing. It was important that my grandma proceed to Walmart immediately to buy her an identical pair.

I know she didn’t enjoy my grandpa’s health struggles, but she excelled in the environment she was put in as a result of them. She was a rock star in the caregiver world. She developed new skills. She met new people. In fact, she saw her role as to take care of not only my grandpa but also every other patient, family member, and nurse in that hospital. She’d never call it caregiving. She was just being herself.

My grandma died in 2012. When told she had cancer and had limited time, she responded, “But what will people do without me?”

Then she asked about someone she knew who had recently been admitted across the hall on the palliative care floor.

“That’s just terrible. I hope they are going to be okay,” she said. This was about 72 hours before she passed away.

She taught me a lot of things…but what stands out to me is that she thrived in a world she never asked to be a part of and would have exited in a minute given the opportunity.

She never wanted to provide care for my grandpa. She never wanted him to be chronically ill in the first place. But she didn’t have a choice.

And she was amazing.

She had every right to be proud.

And, those of you who are carers, you have every right to be proud as well. I know you may not feel like you’re rocking it every single day, but you’ve developed skills. You’ve solved problems. You’ve advocated.

Maybe you thought you could never give a shot to a loved one, and now it’s second nature. Maybe you didn’t cook before your wife had Alzheimer’s, and now you can cook a pretty decent meal for two. Maybe you’re a shy person who doesn’t want to bother anyone, and now you’ve learned to tell the nurses when they need to pay more attention to your mom.

Perhaps you feel like a different person than when you started. Maybe you’re more tired and stressed. But maybe, just maybe, you find a sense of accomplishment when you do something as a caregiver that you didn’t think you could do. And you shouldn’t apologize for that.

Caregiving is tough. Don’t feel bad about claiming a reward when you get one.

You got your dad an appointment in neurology when the receptionists originally said they were full. You learned to read that MRI by Googling “how to read an MRI.” You drove to Mayo Clinic and figured out where to park and what building your appointment was in. You convinced your insurance company your wife needed that CT when they originally wouldn’t pay for it. You talked Mom into taking a shower when she hadn’t done so in a week. Yes, those are accomplishments.

Caregiving is full of small–and large–accomplishments.

I give you permission to feel that sense of accomplishment as a caregiver. I know you didn’t want to be here….I know you would prefer if you didn’t need to be a caregiver.

But now that you are here—feel free to admit that you are pretty dang awesome.

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Dementia and Tent Families: Stepping into Someone Else’s Reality

I was shopping at Target when I ran into a woman I know. Her mother-in-law has dementia.

If you’ve read my blog for a while, you might think I hang out at Target a lot. This isn’t the first time I’ve written about a conversation with someone I ran into there. In fact, I think it’s the third. I don’t really even go to Target that much, although it sounds like I have a booth there to answer questions about dementia. (Side note: If Target wants to pay me to pick up a side gig at such a booth, I’m open to it. I mean, they have optical. Why not a dementia question booth?)

In this case, the woman was upset because her mother-in-law, Beth, was more interested in another family than their family.

You see, Beth lives in a nursing home, and a family of four resides in a little tent in the corner of her nursing home…at least that Beth’s reality. Beth’s family’s reality is different. They don’t see a family living in a tent. They see a small table with a few figurines and a lamp on it.

“What should we do?” the woman asked me.

I asked if the tent family seems agitate Beth or make her angry or sad.

“No,” the woman said to me. “It’s annoying that they are all she wants to talk about but she seems to like them.”

I said that I didn’t see a problem…that perhaps this family kept her company…that maybe she found a sense of purpose in looking after them.

“How can you say there’s no problem when my mother-in-law is obsessed with a made-up family supposedly living in her nursing home room?” she asked, a bit frustrated with me.

I get why she was surprised when I said I didn’t see a problem. I get why she didn’t accept my answer. And I regretted how I worded my response.

I understand that this situation as a whole is less than ideal. I understand that Beth is a woman in her 70’s who is supposed to be enjoying her grandchildren. Instead she didn’t know their names. This was a woman who used to be everyone’s confidant. Now she rambled on about the tent family and couldn’t follow a conversation. This was a woman who ran her own business, and now she couldn’t even remember what she sold.

But she remembered the details of the tent family.

The dad was a doctor. The mom was a nurse. They had two kids–a boy and a girl. Beth said the kids were doing well in school. The boy even played baseball. The girl was sweet but absent-minded. She always forgot her jacket on chilly mornings unless Beth reminded her.

Beth’s daughter-in-law was resentful of the tent family–as resentful as you can be of a fictional family that lives in the corner of a nursing home room (which was actually pretty resentful). She saw the tent family as an obstacle in communicating and connecting with Beth. And she was frustrated that Beth could remember details about the tent family but couldn’t remember that any of her kids were married or that her own husband had passed away.

I tried to reframe it for her. Maybe the tent family was an opportunity. Maybe the tent family was a way to connect with Beth.

I suggested asking questions about the tent family and making them the center point of conversation. If they were the only topic that engaged Beth, it seemed like talking about them was the best way to engage her.

I want to be clear that I don’t think every problem is an opportunity. I’m not that person who minimizes problems and tells you they make you stronger and contribute to your personal growth. I’m your realistic friend–not your sunshine positive rainbows friend.

Sometimes you have mean, awful, ugly problems and there’s no way to reframe them more positively.

But once in while…once in a while…we see something as a problem when it’s not a problem.

Dementia is problematic, to be sure. It creates challenges and it hurts people and it limits lives. It can be one of those mean, awful, ugly problems. Obviously.

But the tent family? I didn’t seem them as a problematic. In fact, I felt like everyone should just accept and makes friends with the tent family.

I didn’t think the woman would take my advice. She seemed resistant to accepting the tent family as part of…their family.

But then I got an email from her a few weeks later. Here’s an excerpt:

I asked Beth about the tent family and we connected like we haven’t in a long time. She was so excited to tell someone stories about them. Each time I go, I get excited to hear what she is going to tell me they are up to. Last time she told me that dad was cheating on the mom and she was planning to tell the mom. She also said the boy got caught kissing a girl behind the school and he was grounded. The girl was twenty years older, so the parents weren’t happy at all.

Sometimes what we view as a problem isn’t such a problem. And sometimes stepping into someone else’s reality–especially when it’s quite different than our reality–is where we connect.

 

Dementia and Mental Energy: How Do You Choose to Spend Your Limited and Precious Mental Energy?

Mental energy. Why are we not talking more about mental energy in relation to dementia?

A few days ago I listened to an insightful and unexpectedly funny panel of individuals living with dementia talk about their experiences. The entire conference was great, but no other speakers could really compete with the panelists.

As they sat on a stage in front of a decent-sized audience, they talked about the importance of their advocacy on behalf of people living with dementia. A few mentioned that their advocacy work gave them purpose. All of them described events that they had taken part in and, in many cases, organized. They talked about the public speaking that they do. One man described how he and his wife put together a fundraiser on the fly…and it was overwhelming successful.

Then one of the panelists mentioned that it comes with a cost.

It’s tiring.

Individuals with dementia have limited mental energy (which leads to limited physical energy, by the way).

Let’s say I have 100 units of mental energy. (Actually, I know of no metric of mental energy and I’m making this up as I go.) I can put a lot of mental energy into a few things, or I can put a little mental energy into a lot of things. It’s my choice.

But when my mental energy is gone, it’s gone. And you’ve all been there. A long day at work. The day you took your SATs or GREs or LSATs or had to do a test or evaluation for your job. Just a day when nothing went quite right and you had to spend your whole day fixing stuff.

You’re irritable. You’re frustrated. Maybe you have an outburst. Maybe you withdraw. Maybe you just close your eyes are go to sleep at 7:30pm.

As dementia progresses, those units (you know, the ones I made up) decrease. If a person with dementia used to get 100 units a day, they may get 90, 80, 70….but it’s not consistent by the day. One day you may have more units, and the next day your units are depleted.

Oh, and you can often roll over those units. You can rest one day to have a high energy day the next day because maybe your grandkids are coming over. You can also try to steal from the next day. Maybe today’s the 4th of July and you are committed to going to four cookouts and then the fireworks. If you can’t move tomorrow, you don’t care. We have to be careful with that strategy because sometimes we intend to steal a tiny bit from the next day but end up decimating the whole week’s energy units. (These energy units are starting to sound a bit like Weight Watcher points, aren’t they?)

There are other principles for these energy units. You may know some vampires who steal your mental energy. Maybe a co-worker. Or a family member. Or a really disagreeable checker at your local Target. When you try to steal your energy back from the vampires, you end up wasting additional mental energy. You can and should do your best to protect your mental energy from these vampires.

I will add that I am a work in progress when it comes to not spending mental energy on vampires. Today I let a disagreeable Delta gate agent steal about 27 of my mental energy units in the process of getting a seat assignment.

I spent a lot of time thinking about the panelists living with dementia and their commitment to educating us. And I was grateful to them for using their limited energy in this way. When your energy units become limited for any reason, how you use them needs to become even more intentional. And these individuals chose to spend their mental energy educating folks like me.

One of the principles I cling to in this field is that people living with dementia and their care partners have the right to navigate this disease however they choose.

If you want to spend your precious and limited energy on a cross country camping trip, it’s yours to spend. If you want to spend your precious and limited energy on continuing to work at your job, it’s yours to spend. If you want to spend your precious and limited energy on cooking and keeping your house clean, it’s yours to spend.

Just be intentional. And when you find you’re running out of mental energy too often, it’s time to prioritize.

I realize that I’m not just talking about people living with dementia. I’m looking at everyone….including family care partners who often forget that they can’t do everything, be everywhere, and fix everything.

We all have precious and limited energy. When we can’t increase that energy, our only option is to be wise in how we spend it.

I have a challenge for you this week. When you realize something is taking up too much of your mental energy….when you realize that the cost is too high…just walk away. Or maybe run.

Yesterday I considered buying a sweatshirt at SoulCycle. I looked at the price tag. It was almost $200.

I walked away. It was too high of a price to pay. It wasn’t worth it. It just wasn’t in the budget.

If only I could be so intentional with how I spend my mental energy….