Dementia Isn’t a Marathon

dementia

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!

dementia

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

dementia

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 of 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

alzheimer's, alzheimers, cancer, caregiver, caregiving, dementia

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.

Gallery Photo

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

dementia

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?

alzheimer's, alzheimers, caregiver, caregiving, dementia

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….

When Dementia Knocks: Update

alzheimer's, alzheimers, caregiver, dementia, frontotemporal dementia, lewy body dementia

Hi friends! Just a bit of a blog update. You can now find me online at WhenDementiaKnocks.com. Tell your friends.

In addition, I started a Facebook page with the title When Dementia Knocks. This is a place to post my blog as well as provide some other dementia resources. If you’re a Facebook person and you feel compelled to “like” the page, you can find it here: https://business.facebook.com/DementiaKnocks/

If you aren’t a Facebook person because you think it’s catty and are sick of seeing your relatives argue about Trump, I get that. Good for you.

It appears in the “business” section of Facebook but don’t worry–I’m not selling you anything (except some bad humor). As you may have realized, I’m seriously opposed to pushing products and services or even recommending them.

AND (man, I’ve been busy) I know have a Twitter handle (@dementiaknocks) for the blog. You can find that here: https://twitter.com/DementiaKnocks

I am hoping that being more involved in social media will reach some individuals I am currently not reaching. I guess this is how the youngsters do it nowadays.

In other blog news, I have a new favorite coffee shop to write. It has a latte called the Optimist–which is blackberry mocha flavored. I feel like I’m getting more optimistic just by drinking it.

 

Hey Dementia Community: Stop Telling Me Your Challenges Aren’t a Big Deal!

alzheimer's, caregiver, caregiving, dementia, lewy body dementia

If it wasn’t a big deal, why was she telling me about it?

She said that having to cancel lunch with a friend because her husband (who was living with Alzheimer’s) was having awful anxiety was no big deal.

She said that her friend could stop by later. That she wasn’t that thrilled with the restaurant (Olive Garden) her friend picked anyway. That she had gone out for lunch with another friend a few days ago. She even made a joke about her weight and said maybe not going out for lunch is best.

Again, she said it was no big deal.

But here I am at this conference chatting with a family care partner who sought me out. We probably have about four minutes until I have to get to the next session.

In this limited time, she’s not talking to me about financial care planning or her husband’s diagnosis or her worry that one day he will walk out the front door and be lost forever.

She hasn’t told me about her feeling of disconnectedness within her marriage or how her kids are in denial that their father has a progressive disease.

She’s telling me she had to cancel lunch with her friend.

It’s a big deal.

I said, “I’m so sorry you couldn’t go to lunch with your friend.”

I said it with the sincerity I would say, “I’m sorry your husband died, ” or “I am so sorry to hear about this diagnosis.”

I really was sorry, and I felt for her. She had to give up something that was important to her. We’ve all been there–whether due to dementia or other life circumstances. It’s hard when you aren’t able to do what you want to do. We’re allowed to be upset about that.

She nodded and said, “Thanks but it’s no big deal. I mean, there are worse things.”

Of course there are worse things. There are always worse things. I’d have nothing to talk about in life if we were only allowed to complain about the things that are truly the worst.

Just because something is not the absolute worst thing to ever happen in the history of world does not mean it’s not difficult. And it doesn’t mean it’s not a big deal. As I sit here right now, I am declaring a new life rule–YOU GET TO DECIDE WHAT IS A BIG DEAL IN YOUR OWN LIFE. And you don’t have to apologize for what is a big deal in your life at any particular moment.

People living with dementia and care partners often tell me about some of the challenges in their lives and say then follow up by implying those challenges are small and insignificant.

Sometimes I get confused when I’m getting ready in the morning and trying to figure out what’s the toothpaste and what’s the deodorant and the hairspray. But that’s just a small thing.

I can’t do my crafts downstairs anymore because he comes down and needs my attention a lot. I know people have it worse. At least he’s home. I can deal with not crafting.

I want to make the same stuff I always make for dinner but now stuff tastes different to him and he won’t eat what I make. I am stuck making pasta every night because he says other stuff is gross. But I don’t want to complain. Pasta is okay.

I used to be able to sew but now it’s just frustrating because of Alzheimer’s so I gave up. It’s not the end of the world.

I’m guilty of saying something isn’t a big deal when it is, in fact, a big deal to me. I’ve been known to go on a monologue complaining about a problem or talking about a difficult situation. Then I tell everyone it’s not a big deal and dismiss it.

Elaine, why would you go on diatribe if it’s really no big deal to you?

And I say the same thing to those of you who reach out to tell me about challenges but then downplay those challenges because they are no big deal.

It’s okay for something to be a big deal. And it’s okay to say it’s a big deal. You realize that it is not a big deal to everyone in the world and that maybe it won’t be a big deal forever, but it’s a big deal right now. Sure, maybe you’ll get over it. Maybe you won’t even remember it in a year. That doesn’t mean it’s not a big deal right here in this moment.

It doesn’t make you self-centered or whiny. It just makes you a human being.

So care partners…I know the world expects you to be upset when your loved one is diagnosed, forgets your name, or passes away. Those are big deals, but please know that there are other moments that might seem inconsequential to others that are big deals to you. Stop telling me the things that are bothering you aren’t big deals because those things matter, too. Stop minimizing the loss you feel when you can’t go to Olive Garden with your friend. It’s loss. Loss is a big deal.

To the care partner who had meltdown in front of me because her husband could no longer handle the recycling and had thrown out a lot of plastic silverware. Maybe it’s not entirely about the recycling. Or maybe you’re really environmentally-conscious and it is. Either way, you’re struggling with it and it’s important.

And for my friends living with dementia…I’m looking at you as well. You deal with many challenges. Some of you are thriving. Some of you are struggling. I’d say quite a few of you are thriving and struggling even at the same time. Sometimes when I talk to you I hear you dismissing frustrating pieces of dementia as if they don’t matter. Your friends leave, but you tell me it’s fine because now you know who really cares. Your wife won’t let you mow the yard, but you say it’s okay because it’s too hot out there anyway. You can’t volunteer at the humane society anymore because you don’t have the energy. That’s loss. Loss is a big deal.

If you are struggling with something, that thing matters. Maybe it won’t matter so much tomorrow. Maybe it won’t matter in ten minutes. But right now…it’s a big deal. Stop telling me it’s not.

I don’t believe you anyway.

 

 

 

 

 

 

When Dementia Knocks

dementia

We have a winner, folks.

Bill Bass, Cedar Falls, Iowa (should I be inserting his age here as well?), suggested When Dementia Knocks and this title was the runaway winner by vote.

To clarify, I used popular vote and not the electoral college. And it was all online—so no hanging chads. I can’t make any conclusions about Russian collusion at this point.

I can’t speak for all of you who voted but I’ll tell you why I think the new title is a fit.

Dementia knocks…

Dementia knocks quietly on the door. Maybe you ignore it for the moment.

Dementia knocks and you open the door. You adjust to its company.

Dementia knocks and then forces its way when you don’t answer.

Dementia knocks you on your butt. You get up. But sometimes it takes a while.

Sometimes the knock is gentle and even kind.

Sometimes the knock is brutal.

And then it’s gentle again.

But it never really stops knocking.

So here we are…a few years into this blog and still going strong (well, most days). A new name. A new layout (if you use the actual WordPress site).

And an upcoming FREE dementia conference with a FREE lunch–but you have to register in advance. If you are in the vicinity of Northeast Iowa on July 19, check it out:

https://www.eventbrite.com/e/uni-gerontology-conference-building-a-dementia-friendly-community-registration

In closing, I’m going to share–with the permission of the writer– an excerpt from an email I received this week. I’ve read it about 439 times. And I’ve obsessed about my inadequate response.

Here’s what new friend had to say in that email:

I’ve just received a shiny new Alzheimers diag. Sad but relieved. I’m not going crazy it’s my brain that has broken. It’s better to have a name for the enemy. Maybe I can turn him into my buddy. I feel like I have a few years when I can still be me and do my things. After that I hope she can put me in a nursing home and move on with herself But for today I am okay. Just gotta try to be okay tomorrow and the next day and everyday. All I want to do is keep being okay and not be a bother. I think life still can be good. For now anyways But I am so scared.

I’m humbled that someone would reach out to me hours after an official diagnosis. But my response about new challenges, new goals, planning, maintaining relationships, realism, hope, and how it’s okay to not be okay fell short.

How could it not?

I can’t fix dementia and my typed words from 2000 miles away can only be so supportive in such a situation.

But when you find yourself with that “shiny new Alzheimer’s diagnosis,” you should know you’re not alone. Until there’s a cure, there’s education. There’s support. There’s life to be lived. And professionals like myself need to keep working hard to send those messages.

And when there’s a cure, I’ll happily find another way to spend my time. Maybe I’ll start that doggie daycare for senior and disabled pooches. If you think that’s a joke, you don’t know me.

But for now….I’ll keep writing because dementia keeps knocking…. (was that too corny?)

 

Why We Fall

dementia

I recently went to Wisconsin for a speaking engagement, and I went out for Chinese food with one of my most ambitious former students. She shares my passion for improving dementia care, and she’s not afraid to be straightforward in her advocacy for residents that live at the nursing home where she works as an assistant administrator.

She said, out of the blue, “You know what you should do? You should do something on falls and dementia.”

When someone tells me I should do something, I’m usually pretty unlikely to do it. However, it occurred to me that I’d never written about dementia and falls before. My former student was onto something. And I credit myself, really, because her brilliance is a direct result of my excellent teaching and advising.

Just kidding, Taya. You were brilliant before you were my student.

As you might know, dementia increases a person’s risk of falling. And falling is a big deal. A person can break a hip or get a concussion. Nursing homes and hospitals have an incentive to minimize falls…they don’t want bad press and they don’t want to get sued.

I have said for years that I could run a nursing home and guarantee zero falls. I’d just keep people in bed on sedatives all day. It’s a great solution, right?

Obviously not.

Here’s the thing about caregiving–and it’s not so different from parenting in a way. We want to minimize risk and maximize independence. But where is that balance? How can we encourage as much autonomy as possible while limiting risk?

Well…let’s start with talking about why people with dementia fall.

First of all, balance is a brain function. Dementia is a condition of the brain. In fact, it’s the cerebellum that controls balance, fine muscle movement, and coordination. When dementia impacts that part of the brain, it’s no surprise than balance is affected.

So, yes, dementia itself brings challenges with balance. Once again–louder–for the people in the back….DEMENTIA ISN’T JUST ABOUT MEMORY LOSS. (Should I make t-shirts that say that? I’m sick of saying it, and people still aren’t getting it.)

There are other ways in which dementia increases a person’s risk of falls.

I talk a lot about how dementia changes how an individual experiences the world. Dementia literally changes how you see the world. It’s not that someone is wrong with your eyes if you have dementia, but your brain may be less effective in interpreting what your eyes see.

Someone with dementia might not interpret stairs correctly, leading to a fall. Perhaps their brain doesn’t correctly interpret food that has fallen on the floor, and they slip. Maybe they don’t notice the guide bar on the wall because it’s the same color as the wall, so they don’t use it, which increases the risk of a fall. Hey–interior designers–you can help reduce falls by making some small changes to homes and facilities. Seriously, we need so much help in this area.

Fatigue among those living with dementia increases falls. It’s tiring having dementia, and we are all more likely to fall if we are exhausted. I don’t have dementia (that I am aware of), but I have a bad habit of stumbling at night because I’m too tired to pick my feet up.

People with dementia may be more tired during certain times of day, and–no surprise–falls increase during these times of day. A person with dementia who is allowed adequate time for rest is less likely to fall. In addition, falls are minimized when we allow a person with dementia to create their own daily rest and wake patterns rather than dictating these patterns. If your loved one struggles with fatigue in the afternoon, try to structure their day so they can nap or at least rest quietly during that time.

People with dementia, just like the rest of us, need to eat, to drink, and to use the restroom. If people are hungry, thirsty, or need to relieve themselves, they are likely to try to get up and meet that need solo when perhaps a little bit of help might be useful. If we regularly ask people if they need to use the restroom, for example, they might be less likely when they try to get up to do this without assistance. If we keep water nearby so they don’t have to get up and find water when they are thirsty, they might be less likely to fall.

Memory impairment itself can result in falls. Sometimes dementia (or another condition) takes away the ability of someone to walk without assistance, but if they don’t remember this they may get up and try to walk anyway. Someone once told me that she didn’t know why her dad kept trying to get up after he had knee replacement surgery. In fact, he didn’t remember that he had undergone the procedure. People forget they have walkers or canes. I once met a guy who was a lower limb amputee. He couldn’t remember why he was in a wheelchair. He was surprised every time he tried to stand up and realized he only had one leg.

“What’d they do with the other one?” he’d ask.

Sometimes poor judgement leads to falls for people with dementia. I know that I’m not stable when I walk on ice, so I avoid walking on ice. If there’s a slick floor, I walk a different way so I don’t slip. I’m a relatively clumsy being, so I try to set myself up for success. (In this case, success means not ending up on my read end on the ground.) I may be a klutz, but my good judgement keeps me from frequent trips to the emergency room.

But what if my judgement became compromised? What if I lost that inner voice that told me it’s likely I will end up on the ground if I try to walk across ice? Well, that’s what can happen with dementia. People with dementia might lose the ability to instantaneous assess the risk of a situation and therefore put themselves in environments that can be risky.

A guy recently told me how he recently took his father who had Alzheimer’s on a fishing trip. He looked over at one point and saw his father standing of the edge of a cliff, inches from a fall that would have certainly ended his life. When he was told to back up, he shrugged and told his son to stop trying to control him.

I would be negligent if I didn’t mention the role of medications in falls. I would argue that many individuals with dementia are over-medicated. There are times when residents in nursing homes and assisted livings are given medications when a change of environment, a modification of caregiving strategy, or a simply friendly conversation might have done the trick. Medications should absolutely be an option in treatment of the symptoms of dementia, but I promote the idea that medication shouldn’t be the first intervention strategy.

Why? Medications have side effects. Those side effects can include dizziness. They can include orthostatic hypotension. What is orthostatic hypotension? You know that feeling of lightheadedness when you stand up after sitting or lying down for a while? It’s due to low blood pressure. I recently learned that this is called orthostatic hypotension. It’s a common side effect for many medications, including anti-psychotics. It’s also what happens if you stand up too quickly after a 90 minute massage, get dizzy, and accidentally knock over a vase–not that I’d know.

I recently visited a nursing home and met a man with Parkinson’s who told me his hobby was going outside in his wheelchair and collecting rocks. I told him that I thought this was fantastic way to spend his time and encouraged him to keep at it. He mentioned that the nursing home staff wasn’t fond of his rock collecting. I was puzzled.

Later, someone who worked in the nursing home told me that his rock collecting often resulted in him falling out of his wheelchair. In addition, he was bringing dirty rocks inside the nursing home–not exactly a great thing for a setting where staff worked hard to create a sanitized environment.

That’s the hard thing.

We want people to be able to make their own decisions. We want them to be independent and to participate in their own self-care. We want them to feel like human beings rather than caged animals. We want people to do what makes them happy.

But we don’t want them to fall. And falling here is meant both literally and figuratively.

So we try to find that balance. And sometimes we make the wrong call.

We think Dad can take a shower without help and he falls. He breaks a hip.

We think Grandma can still go up and down the stairs to do laundry. She tumbles down the steps and is on the ground for over 24 hours before someone stops by.

We think our friend is still okay to drive but he gets into a fender bender. We think our wife can go to the dinner party she wants to attend but she leaves in tears because it’s so overwhelming. We think Grandma can make the potato salad for the 4th of July Celebration, but we realize later that she made it a week in advance and let it sit out. And the whole family celebrated the 4th by fighting over the bathroom.

These are real stories of care partners who errored on the side of autonomy. And later felt so guilty, so dumb, so ineffective.

We sometimes get burned when we try to maximize independence.

Yet when we try to maximize safety people living with dementia feel limited and argue that their quality of life is being compromised.

When do we step in?

When do we step back?