Caregiving Heroes and Saints

Doris is a hero. That’s what people tell her anyway.

When her sister’s Alzheimer’s disease progressed enough that she could no longer live alone, Doris moved her into the spare room. After all, she had experience as a caregiver. Her husband had passed from cancer the year before.

Doris had already given up a lot to care for her husband. She took early retirement from a job she loved. She quit volunteering at the hospital. She stopped paying for her gym membership and gave up her passion for yoga.

When her sister moved in, Doris found a routine that focused on the essentials. Grocery shopping. Errands. Meal planning. Doctor’s appointments.

As time progressed….Medications. Baths. Toileting.

Doris’s sister starting getting up in the middle of the night, and sleeping most of the day. Doris slept enough. But not really enough. She stopped scheduling herself appointments at the dentist and the doctor. She stopped going for her daily walk. Her interactions with friends and neighbors became limited.

Her family calls her a hero. Or a saint. They act like she’s Mother Theresa.

But the problem, according to Doris, is that they forget that she is a freaking human being. They seem to think she has magical super powers that make her an amazing caregiver.

But she doesn’t. She’s just a 55-year-old Midwestern widow who is doing her best.

And she’s tired.

She didn’t want to quit her job. She misses yoga class and her friends. She wishes her sister could carry on a decent conversation, and she’s sick of cooking.

She promised her sister that she’d never place her in a nursing home, and she’s starting to wonder if she will regret that promise.

She loved her husband. She loves her sister.

It’s important to her to care for those she loves, but it’s exhausting.

She does a lot of laughing, and she does some crying. Some days she thinks she’s doing well. Other days she wonders if she’s failing. Every once in a while, she gets a good night’s sleep and feels like herself. Most days she feels like someone took her brain out of her head and her body just carries on.

A while back, she took an online quiz that claimed to diagnose her with “mild depression.” She had expected “moderate” or even “severe” depression, so she found it reassuring. She had promised herself if it hit the “moderate” category she’d consider counseling. Maybe telehealth. She’s not sure if someone could come stay with her sister while she went to an appointment.

She feels it’s a privilege to care for others, but it’s hard. And when her sister in gone, she’s not sure what will be left of her.

Because she’s a human being. Just a regular human being.

Home for the Holidays

You fly home for the holidays. You think Mom is doing okay. Dad has said she’s hanging in there.

You realize she is hanging in there but only because your dad has started doing most things for her. He cooks (not well, but they are fed). He does laundry (you didn’t know he knew how). He goes grocery shopping and feeds the pets and even makes the bed.

Those text messages your mom sends? That’s actually your dad texting you using her phone.

Your Christmas gift this year was a gift card. You don’t mind that, but it seems off. You realize Mom didn’t have enough energy to do the shopping. She used to love doing Christmas shopping for her kids and grandkids. Now you’ve got a $100 gift card to the Home Depot. It’s not a bad gift, but your mom never would have purchased that.

You realize your dad is a rock star, but he’s also a poor communicator and super defensive when you try to have a conversation. In addition, he’s had two heart attacks and doesn’t take care of his Type II diabetes. You think denial isn’t just a river in Egypt.

They are planning a trip to Hawaii. The mention of it makes you stick to your stomach. You don’t think it’ll go well. What if they get separated and she wanders off? Can the two of them get through airport security without a debacle? Who will they call if things fall apart? You aren’t sure if you can step away from your job to go get them if there is a crisis.

Your sister thinks everything is fine. She says your dad should have been doing all of this stuff around the house for years, and it’s good to see him stepping up in retirement.

When you ask your dad if Mom needs to go to the doctor, he asks, “What are they gonna do for her?”

He also insists she’s been to the doctor recently and the doctor didn’t notice a problem. Of course, this was a visit to urgent care for a sinus infection.

He keeps saying you shouldn’t worry. He tells you that they are managing “just fine.” He assures you that he has it under control, but you also see in his eyes that he’s tired. Tired of answering the same question repeatedly. Tired of reminding his wife what day it is. Tired of getting up at night when he wakes up and she’s not beside him. Tired of losing her a little bit more each day.

But they are still having fun. They go for walks. They watch movies. They play cards. You can’t say Mom has a poor quality of life. She’s not ready for a nursing home. You aren’t about to offer that they could come live with you out of state.

So what do you do with this? You feel like you know there is a bomb under your family home but no one else will acknowledge it. You feel gaslighted.

You fly home. You had planned to come back for Easter, but you book a flight in early February.

Having Dementia is Scary

It is scary to have dementia.

It is frightening to live in a world that doesn’t make sense and be surrounded by people you don’t know.

It’s alarming to realize that you no longer are able to read a clock.

It’s terrifying to know you might forget those you love the most.

It’s upsetting to not be able to come up with a common word, like bath or fork.

It’s difficult when people get frustrated with you and you don’t know why.

It’s scary to not remember how to do basic tasks, like putting out the trash or pumping gas.

It’s hard to process why you’re not sad when you should be (like when a loved one dies) and why you’re not happy when you should be (like when you have a new grandbaby).

It’s worrisome when you don’t have the mental energy to watch a TV show or follow a conversation.

It’s challenging when you’re trying and people think you’re not.

But we still say it’s harder on the family. We still say it’s easier to be the person living with dementia than the caregiver.

I don’t know why it’s a contest. There’s no easy role here.

As a professional, I see that there are more resources available for family caregivers than for those living with dementia (and I’m not saying there are adequate resources for family caregivers). Perhaps family caregivers are more likely to be able to express their needs, but those with dementia have needs as well. And, to be honest, some of my friends with dementia are incredible advocates for those living with dementia.

I think empathy changes everything.

When we think about creating more dementia-friendly communities, we must think of ways to increase empathy for those with dementia. We need our families and communities to understand that dementia is more than just old people forgetting stuff.

First, it’s not just old people. And second, it’s not just memory loss.

People with dementia experience the world differently. And the way they experience the world can be intensely scary. When we say they are “giving us a hard time,” they are acting out of fear. Considering their experience of the world, their response is reasonable.

But are their needs that different than the needs of someone who doesn’t have dementia? They need to be listened to, to be cared for, to be understood. They need to laugh and to connect.

And we need to step into their world to make that happen.

It’s About the Heart

Sometimes we overcomplicate things. We talk about theory, policy, and research. It’s all good stuff, of course, but maybe sometimes we need to back up.

Here’s a short video clip of my friend, Kevin, who lives with Lewy Body Dementia. Maybe, like he says, it’s about heart.

Dr. Eshbaugh’s Christmas Letter (aka Give Yourself a Break and Change Your Expectations)

Dear Friends,

This is the closest thing to a Christmas letter I will write this year, and it is to those of you who live with dementia and those of you who are caregivers.

First of all, it doesn’t matter to me what you celebrate. Hanukkah. (Obviously I don’t celebrate Hanukkah because I looked up how to spell it and it still doesn’t look quite right.) Christmas. Winter Solstice. Festivus. National Eggnog Day. Maybe you don’t celebrate anything, and that’s fine with me. Maybe you usually celebrate something but don’t feel like celebrating this year. I’m not here to judge.

If you choose to celebrate something this year, I encourage you to be flexible. I encourage you to be patient with yourself and with others. I encourage you to accept that life is changing. Perhaps some holiday traditions will continue, whereas others will not. That’s okay.

Remember you can say no.

Yes, I am talking to YOU. You can say no.

If someone invites you to an event, you get to decide whether that event is going to work for you. Maybe it will be too loud, too crowded, too long of a drive, too time-consuming, too intense. Maybe it’s at night and your loved one with dementia typically goes to bed early. Perhaps you’re a caregiver and you just don’t have the energy. All of those are legitimate reasons to say no.

You can say yes–and then change your yes to a no when your loved one with is having a rough day. If someone judges you, they don’t understand dementia. People living with dementia have bad days, and on bad days some things might just not be possible.

Church services, especially crowded ones, can be stressful for someone with dementia. (Not to mention that whole COVID thing, right?) Can you live stream the service? Or organize a short candlelight service for your family at home? Maybe your family has gone to Midnight Mass every Christmas for 40 years. Perhaps that just doesn’t work this year. It’s okay.

Maybe you don’t need to volunteer to host the family holiday party. You say you’ve hosted it for 30 years? Sounds like you’ve paid your dues and it’s someone else’s turn. You know what’s great about NOT hosting? You can leave!

On that note….

Have an exit plan. If someone with dementia is having an off day, they may only be able to stay 30 minutes at family Christmas. This is why you always drive separately. Don’t ride with Aunt Jean and Uncle Tony. They might want to stay all day. Don’t let anyone guilt you for an early exit. I give you permission to pull one of those sneaky exits where you don’t say goodbye. If you need to leave, just leave.

Is there a place you can crash for a quick break or nap if the gathering is overwhelming? Can you escape to the basement for a deep breath if the grandkids are out of control with their ridiculously noisy and obnoxious toys? Don’t be afraid to step away. Keep in mind that a gathering like this can be anxiety-provoking for someone with dementia who may not recognize everyone (who are these people and why do they want to hug me?) and be sensitive to noise.

Giving cash or a gift card always works if you aren’t up for shopping. It is okay to order pizza on Christmas Eve. I am guessing no one will miss your holiday card that much if you don’t send one. And those delightful platters of high calorie treats that you bake and deliver to your neighbors? They will survive without them.

Not that I speak from experience or anything, but if you aren’t up for wrapping gifts, gift bags are great. I’ve also been known to just hand people their gifts in a plastic Target bag. Tacky? Maybe. But I’ve never had anyone refuse the gift because it wasn’t wrapped.

Maybe this is the first year that you celebrate the holidays at the nursing home with Grandma because taking her home causes too much confusion. Two or three of you visit at a time. Having a large group seems to cause anxiety. And then you have your family Christmas bash at home without her. You feel like an awful person, but you’re not. Sometimes your best option just isn’t all that good. We do the best we can.

So that’s it. Give yourself a break. Change your expectations. And, happiest possible holidays!

XOXOXO,

Elaine

The Forgetting and the Remembering and the Forgetting

I often talk to loved ones of individuals with dementia. They tell me that one of their biggest fears is coping with the moment when their loved one no longer knows who they are.

But it’s seldom a single moment in time.

Typically, it goes something like this:

They blank on your name and need a reminder. They think you are someone else. They know your name. They don’t know who you are but then suddenly they do. They know everything about you but call you by a different name. They stare at you blankly and ask who you are. They know your name. They don’t know your name.

Maybe all of that happens over a day, a week, or a year. Dementia isn’t something that pulls off the band-aid quickly.

I was spending time with a group last week. After more than an hour of visiting with her, a friend living with dementia took a look at the woman next to him and retreated backward.

In a panic, he asked, “Now who are you?”

When he searched for our names and our relationships to him, they just weren’t there. Why did they disappear at this particular moment? We don’t always know. But they came back in about two minutes.

And does it make sense that they remember your brother (who comes around once a year–either for Thanksgiving or Christmas but never both) but they don’t remember you (who sacrifices much of your time, effort, and finances in the name of their care)? Nope. But sometimes life doesn’t make sense and getting mad at it doesn’t change anything.

You’re allowed to be mad, though. It’s maddening.

Dementia’s progress isn’t linear nor is it predictable. People living with dementia don’t start forgetting people in the order of “not significant in my life” to “has always been my favorite although I’d never admit it.” People with dementia don’t forget loved ones because they are mad at them. REPEAT THAT TO YOURSELF.

People with dementia don’t forget loved ones because they are mad at them.

And it’s not that people exit the mind in a moment and never return. You can be forgotten and then remembered and then forgotten and remembered.

In addition, knowing when you’ve been “forgotten” isn’t always so clear-cut.

People have told me that Mom remembers their name but not that they are related. Or that Dad recognizes them as his son but is never sure which son. Or, wait, maybe he’s a nephew.

Several people with dementia have told me that they seem to remember people with their hearts even though they may not remember them with their heads. Sometimes they feel a sense of familiarity or even love when they don’t know who someone is. To be remembered by someone’s heart doesn’t sound all bad, does it?

But I am not Suzy Sunshine. You probably know that by now.

How can someone who gave you your name forget your name? I won’t try to talk you out of being sad.

Like many things with dementia, it’s not one moment. It’s a lot of moments.

“Behavioral Problems” Are Symptoms (AKA Why You Shouldn’t Use the Term “Behavioral Problems”)

I was on a zoom call with our state’s most passionate and educated dementia advocates. And I heard it.

Behavioral problems.

Some nursing homes don’t let in people with dementia because they are behavioral problems.

I cringed, and I pointed out that we should change our language. And then the meeting continued. I wondered if my point had registered. Probably not, but I’ll keep making it. This is the hill I will die on. One of a few, actually.

As professionals in the field, we need to do better.

You see, I think that language matters. How we speak about something impacts how we think about it and act upon it. People with dementia are NOT behavioral issues. In fact, I won’t even say that they HAVE behavioral issues. Let’s strike the term entirely.

What they have are symptoms. Symptoms of a disease.

It would be cruel to get visibly annoyed with or to deny care to someone with lung disease because they coughed. What if we asked them to leave a healthcare facility because other individuals were frustrated with their cough? We would think someone was a jerk if they complained that an individual who had just had a leg amputated took longer to get from the parking lot to the building. We accept that it will take them longer and accommodate that.

Yet it is commonplace to see symptoms of dementia as behavioral issues, personality defects, or just people set out to make others’ lives difficult.

We say that people with dementia “act out.” I disagree. They aren’t acting at all. They are scared. And, if you consider their perspective, they have reason to be. Imagine if some people you’ve never met (even if they were in your room yesterday) showed up in your bedroom and asked you to take off your clothes. What if they wanted to watch you go to the restroom? Give you a shower? How would you react?

I sometimes hear people say that someone with dementia is giving them a hard time. When we say someone is giving us a hard time, we make it about us. It’s not about us. It’s about the person with dementia…and they may be having a hard time. They are not intentionally being difficult.

A couple of years ago I met the wife of a man living with Alzheimer’s at an educational event. She invited me to meet him after my presentation. His room was in an adjacent building. As we walked there on a beautiful day, she said she needed to ask me a question that she couldn’t ask anyone else.

She stopped walking and turned to me. With shame in her voice, she told me that her husband sometimes made sexually inappropriate remarks to the young women who cared for him. This was obviously something that had been weighing on her. She knew her husband would be horrified if he understood what was happening, and it was not something he would have done before he had dementia.

My heart sunk.

I was successful in explaining that this was a symptom. It wasn’t a character defect. I explained that changes her husband’s brain were responsible for this. We discussed how she could not take on responsibility for these comments. She couldn’t stop them. I used my go-to line….”You can’t fix dementia.”

She told me that, fortunately, her husband’s caregivers were typically able to ignore these comments and divert him. They frequently spoke about what a kind and gentle person he was and how much they enjoyed caring for him. (Please note—the facility that her husband resided in prioritizing education for employees.)

I know that nursing homes and other facilities may decline to admit some people with dementia because they are labelled as “being difficult” or having “behavioral problems.” Can nursing homes do this? Absolutely…they can and they do. Many people are ignorant of the fact that a nursing home can say “thanks but no thanks” to your loved one. And then what?

If a nursing home makes a certain amount of money for each resident, it’s appealing if they can fill those beds with individuals who require less time and effort. It makes sense in terms of staffing and economics. It’s a flaw of our system.

Not surprisingly, it is creating a challenge. There are people with dementia with nowhere to go. I wish this were something that happened occasionally, but it’s not.

As people live longer and more individuals are likely to have dementia, we have to find a way to do better. We have to find a way to serve individuals who are experiencing symptoms of dementia, even when these symptoms aren’t pleasant. We cannot turn our backs and (literally) put vulnerable people out on the street.

It’s a human rights issue.

Mahatma Gandhi Quote: “The true measure of any society can be found in how  it treats

Caregiving is Hard Because It’s Hard

I want to acknowledge something that we “professionals” do to dementia caregivers.

We have good intentions, of course, but you have every right to roll your eyes at us. We preach taking a break. We tell you that respite will do you well. We say that you need to reward yourself with some self-care.

Great recommendations, obviously. But perhaps it sounds like we don’t know your life.

A break? I am supposed to take a break from what….my life? I don’t see anyone waiting here that’s ready to take over my caregiving responsibilities.

Self-care? How can I take a bath when my husband who has Alzheimer’s might wander out the front door and get lost?

A vacation? What a joke. I would be so stressed out being away from my loved one. And my partner had to quit their job when they were diagnosed so we don’t have the money.

Sure, I recommend you do your best to set up some supports so you’ll have more options. An alarm system? A neighbor to stop over? A short weekend trip if you can find a family member to stay with your loved one?

But I get it.

It’s not that easy.

Meditation? Yoga? Great options. But, as a women once told me, “Meditation is great…until my husband starts screaming and crying because I am in another room and he can’t find me.” The reason you most need meditation may be the reason you can’t make it happen.

As a dementia caregiver, you tell people you’re struggling, and they tell you to get a massage. Or maybe a facial. Or to go shopping to relieve some stress. They tell you that you look tired and you should work on getting more sleep. Ha. These people mean well, but I worry their message carries blame.

You are stressed because you’re not doing these things.

Yep, caregivers, just another thing you are messing up.

But, my friends, you are not struggling and stressed because you’re doing something wrong. It’s because….dementia isn’t easy. Your life isn’t easy. And that’s the nature of the beast here.

Caregiving is hard. You are not stressed because you need a nightly bubble bath and a yoga class. You are stressed because caregiving is hard.

That deserves to be acknowledged.

Hello, I am here.

Here I am.

After a hiatus, I finally sat down and decided it was time to write.

Why did I stop? In short, I needed a break. I needed to take something off my plate.

I had a few people attack me on Facebook messenger and was just over it. Not even angry. Just over it.

Throw in three back surgeries in 2021, the death of two of our pets, and a spoonful of depression and generalized anxiety.

And I’ve been struggling with what to write. I carry some COVID-related anger. Mostly, I am angry that our society isn’t more empathetic toward older adults.

We’ve all heard sad tales about nursing homes unable to allow families in to visit. That’s devastating, but it’s not the whole story. It’s also that a nursing home resident can’t see her friend down the hallway. Because of HIPAA, they may not know if they are well, dead, or in the COVID wing. A nursing home resident sees residents being relocated. Who is going where? Will they come back? And who is in that body bag that I caught a glance of when my door was opened?

Some residents are in the know about the pandemic. They watched the numbers rise on the scroll at the bottom of their TV. They hear people on the news say “Old people are the only ones who die” and realize that much of society thinks they are disposable.

A friend’s grandma was quarantined in her room at a nursing home for 10 consecutive months. No group activities. No congregate meals. No visitors. She had a roommate during this time. Her roommate was woman who often cried out in pain, although staff couldn’t find any physical problem. At the begin of the pandemic, she could have an intelligent conversation with the roommate. After a few months, the roommate could no longer carry on a conversation. She was only able to grunt and cry. My friend’s grandma started to resent her and would often lose her patience.

Now I am hearing that the pandemic is over and “We made it.” First, many nursing homes are shut down right now due to outbreaks. Residents in some places are not sure they will be able to see their families for Thanksgiving. Also, I struggle when people say “We made it.” Not all of us did make it. Many of us died. What you mean is that you made it.

I used to spend time in nursing homes, assisted livings, and memory care communities to do education and programming. I’m not back yet. My college students often work in nursing homes and they give me updates on morale among both residents and staff. It’s been rough for both. (So rough that a colleague at the university and me are in the midst of a study looking at post-traumatic stress and post-traumatic growth among nursing home employees.)

I am frustrated at the lack of mental health services available to nursing home residents. I’ve said this for several years now…but after COVID? It’s heartbreaking. Residents have negotiated trauma, loss, and grief. And there’s no counselor available to these individuals. My colleague and I are working on this, as well. How can we get counseling interns and practicum students into nursing homes? How can we work to meet this need rather than ignoring the terrifying roller coaster nursing home residents have been on?

I’m back because I’m a gerontologist, and gerontologists have a lot of work to do right now. COVID has reminded me America doesn’t care about grandmas and grandpas unless they are your grandmas and grandpas.

I’m back because some of you reached out to me. Sometimes I reached back, and sometimes I didn’t. But your acknowledgement that my blog has been helpful to you has brought me back to doing what I love to do when I couldn’t find the energy.

I’m back because I follow a woman living with dementia on Twitter. Her name is Janice. She is honest about her wins and losses, and she’s made it clear that we have a long way to go in promoting quality of life in those with dementia. And I want to be a part of this.

I think I have something to offer.

When I was a kid, I wanted to be a writer. I even had a pen name, Keisha Pulliam. You know what you have to do to be a writer? You have to write.

See you next week.

Mr. Jay and the Bad Driver

Do you ever wonder if you did the right thing?

I woke up in Memphis at a Hilton this morning. I had to catch a flight back to Iowa. The hotel employees told me that my best bet for getting a ride to the airport was to contact a guy called Mr. Jay—since Uber and Lyft have stopped operating in Memphis (and no, I don’t know why—everyone gave me a difference reason).

I called Mr. Jay last night and he said he’d pick me up at 7:30. I got a text at 7:15. He was waiting for me downstairs.

When I got to the vehicle, Mr. Jay was talking to an older gentleman. I couldn’t hear the conversation, but when Mr. Jay got in the car he sighed.

“Dude ain’t got a chance in making it there,” he said. He explained that this guy was looking for the Marriott, but this was the Hilton. He had been trying to give him directions to get to the right hotel.

I’m not sure of the details of the conversation, but Mr. Jay was concerned about the guy. He seemed confused. His questions didn’t make sense. He couldn’t seem to process the directions. The man also looked a bit disheveled and seemed anxious.

As Mr. Jay tried to pull out the hotel, the older man’s car was blocking the way. He was trying to turn around, we thought, but seemed unable to judge if he had the space to do it. Other people were getting frustrated because they were stuck behind him—but scared he’d hit them if they tried to go around.

Finally we got out of the parking lot, and I looked out the back window of the SUV to see the guy driving slowly, swerving, and struggling to change lanes.

To be clear, I don’t know if he had dementia. I don’t know if he’s taking a medication that makes him confused. I don’t know this man’s situation or condition, but when Mr. Jay said he shouldn’t be driving…I agreed.

Mr. Jay turned out to be a good guy. He slowed down and stayed ahead of the man—in an attempt to lead him to the Marriott. I looked out the back window and cringed when he nearly swerved into other cars on the highway. He was driving about 30 miles per hour on a highway. We slowed to his pace to see if we could guide him to the Marriott. A few cars honked at him or us–or maybe both.

At one point, I heard Mr. Jay say under his breath: “Come on, buddy. You can do it.”

I turned around and tried to wave and point when we got close. Mr. Jay turned on his blinker to tell this guy where to turn.

It wasn’t pretty, and I think he hit a curb, but the older guy did end up in the Marriott parking lot.

Mr. Jay said “He’s in!” and I clapped. For a moment, I felt a sense of accomplishment. And an attachment to my teammate Mr. Jay who I had only known for 10 minutes.

Sigh.

At least we got him to the Marriott.

But, what should we have done? What should I have done?

If he were my grandpa, what would I have wanted to someone to do?

Should we have called the police and given them his license plate number? Perhaps at some point we could have intervened to have a conversation with him and asked if there was someone he could call for assistance. Should we have followed him into the Marriott parking lot?

Of course, I did have a flight to catch. And Mr. Jay was getting paid to deliver me to the Memphis airport.

As a gerontologist, I feel a sense of responsibility to intervene in situations if I see older people struggling. But sometimes I don’t know the right thing to do. Or I don’t recognize the need for action in a situation until it’s over.

Many times, like today, I look back and wonder if my I could have done…more.

I gave Mr. Jay a $20 tip because he seemed like a good human. Then I moved on with my day.