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.

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.

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.

Dementia Caregiving and COVID

I haven’t given COVID as much attention in my blog as it deserves. I’ve started many posts and abandoned them because they felt inadequate.

To be fair, I have gotten a bit of hate the few times I’ve written posts about COVID.

Examples:

I thought you were smarter than this. COVID isn’t any worse than the flu.

You are brainwashed just like everyone else. I expected more.

I think you are being overly negative about this. I read your blog for positivity.

I need to develop a thicker skin, I know. And if people don’t want to read my blog, they should move along.

I expect to get some negative comments about this post as well. Unfortunately, COVID has become a political issue in the United States.

But I need to say something…

COVID is impacting all of us, but older adults and those with other health conditions are at higher risk. (Obviously it is not just these populations that are at risk.)

Yet, I am sick of people saying, “I’ll be fine if I get it. COVID really only affects old people.”

It’s the only that bothers me. Only old people.

Because old people are disposable? Because they don’t matter? Because they aren’t productive and valuable members of our communities?

I can’t help but feel like we don’t care about old people unless they’re our old people.

I know someone whose grandma died of COVID in a nursing home. I can’t say she was alone, or even that she was surrounded by strangers. Her family takes comfort in knowing that the nursing home employees who took care of her for a few years were with her.

The family would have come to the window but she was on the 2nd floor. They were grateful the nurses were able to Facetime so they could say goodbye. After she passed, they waited in the parking lot for the funeral director to come. They were grateful they were able to touch her body before they put her in the car.

But is that the way you want to leave this world?

When I worked with hospice, we used the term “good death” a lot. It sounds like a contradiction, right? But it’s the goal. A death that is as pain-free as possible. For most people, a good death means being surrounded by those you love. It means getting to say goodbye to those closest to you.

It’s not only that death occurs…it’s how it occurs that haunts me.

It’s not just that older people are dying from COVID. It’s that COVID is preventing them from having a good death.

And that matters.

As most of you probably know, I’m a college professor. I coordinate the Gerontology program at my university. The students in my major and minor often work in home care or at nursing homes, assisted livings, or memory care communities. Many of these same students live in the residence halls.

While many college students may not be worried about COVID (because they will be “fine”), my gerontology students are terrified of inadvertently bringing the virus into a facility and infecting residents. They take all the precautions they should be taking…but they can’t control what their roommates and peers are doing.

Many people tuned in to closely follow our President’s battle with COVID. I don’t care what news channel you prefer…all of them are talking about COVID (although with somewhat different perspectives).

It’s not that we’re not talking about COVID, but we aren’t talking about the tremendous and life-changing impact this virus has had on caregivers, those who live in nursing homes, those who receive care at home, and those living with dementia. But we seem to care a lot about the politicians and celebrities who test positive….

I haven’t written a lot about this (although I think about it a lot). I haven’t written much because I can’t write much that’s solution-based.

I get questions like:

Should I continue to do window visits when they seem to agitate my mom?

Should I take my mom out of the nursing home for a while so she doesn’t get COVID?

What can I do to encourage the nursing home my loved one is at to expand visiting options?

How can I have better visits with my mom on Facetime when she can’t seem to focus on the conversation?

Here’s the thing….I DON’T KNOW.

They don’t teach this stuff in grad school. I am at a loss when I try to give advice. All I can tell people is to control the things that are controllable, and stop guilting yourself over stuff that you can’t fix.

Despite having little useful advice, I want to acknowledge how this has changed many of your lives.

To those of you struggling through this pandemic, I see you.

I see that it’s brutal to not being able to see your mom and dad for months.

I see that “window visits” can be bittersweet, especially if your loved one can’t understand why you can’t come inside.

I see that Facetime and Zoom are great for some nursing home residents, but others are confused by seeing people they can’t reach out and touch.

I see that phone calls are fine for some but just don’t work as people progress toward the end stage of dementia.

I see that it’s hard when you are home 24/7 as a caregiver with no options for respite.

I see that it’s hard when you caregive for your loved one at home but can’t take them to the grocery store or out to eat like you used to.

I see how difficult it must be when you live at home with a loved one with dementia–who has no idea why the grandkids can’t visit anymore.

I see how challenging life must be if you have a loved one with dementia who has anxiety about COVID and asks the same questions over and over again.

I see that it’s stressful for those of you who have children who are now homeschooled…and a loved one to care for.

I see that you might be depressed. I see that you might have increased anxiety. I see that you might have trouble sleeping. I encourage you to seek help during this time.

I also encourage you to credit yourself for getting through the day. Stop beating yourself up over what’s not going well because it’s likely a result of something you have no control over. As a caregiver, you might not get a lot of positivity thrown your way. It’s okay to pat yourself on the back.

Don’t be afraid to give yourself some kudos for surviving–even when survival is messy.

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 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….

When Dementia Knocks: Update

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!

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 was 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.

 

 

 

 

 

 

Dementia, Big Stick People, and Little Stick People

Someone I met recently had a stroke years ago, and doctors are now telling her she has dementia. She lives on her own, and within the walls of her apartment, she feels quite capable.

She can cook. She can clean. She takes care of her cat. She can even work her own DVR. But things take her a bit longer. She says she messes up a lot.

One day it took her several minutes to figure out which bottle on the ledge of her bathtub was the shampoo. That’s didn’t bother her though–because she wasn’t in a hurry and she figured it out eventually.

When she leaves the house, her anxiety level increases. Doing tasks slowly and messing up is fine at home, but it’s a bigger deal in public.

One day she walked to a local coffee shop and struggled to pay for her latte. She thought she’d pay cash but had difficulty deciding if she had enough money. Then she figured she’d use her debit cared but couldn’t process which, of all the cards in her wallet, was the debit card.

In the end, she paid for her coffee with her card and all was fine.

That’s not the way she saw the situation, however. She felt she had inconvenienced the several people in line behind her. She knew they had to have been frustrated by her, and she swore she could hear a few of them sighing behind her back. As she sat down with her coffee, she thought some of them might be shooting her dirty looks.

She wished she had stayed home.

She decided she should start going out less often, and maybe only during hours when places wouldn’t be crowded.

People know themselves, and I didn’t want to judge whether or not her decision to stay home more was a good one. And I didn’t necessarily think venturing out during less busy times was a bad idea.

But what bothered me was that these thoughts were not based on the progression of dementia. Instead, they were based on her perceptions of others’ reactions to her dementia.

She felt she frustrated and annoyed people. She thought they were judging her for being slow. She perceived herself as a nuisance who was in the way.

I wasn’t with her, so I can’t say for sure, but my guess is that the people in line behind her at the coffee shop didn’t notice her in the way she perceived that they did. She explained the scene as if she was the central character, if you will, and everything that happened in the coffee shop at that moment was focused on her inability to promptly pay for her coffee.

I just don’t buy it.

In those situations where you feel embarrassment or shame, when you feel like everyone  is judging your shortcomings, when you feel like your faux pas or misstep is the central plot in a scene, remember this….

You are the big stick figure in your every scene. No matter where you are in life, you are the big stick figure and all the other characters are little stick figures. You see what you do as being bigger than what everyone else is doing because you see yourself as bigger. It’s just how humans see the world.

It’s not because you’re arrogant or self-important. We all see ourselves as the big stick figure because we can only see the world from our own perspective. We are aware of what we are doing, but we are less aware of what others are doing because they’re the little stick figures.

As the woman with dementia tried to pay at the coffee shop, she saw herself as the big stick figure. She thought everyone was aware of what she perceived as incompetence because she was the big stick figure and it would be impossible to not notice her.

Of course, she wasn’t the big stick figure to the people in line behind her. She was the little stick figure to their big stick figure. They might have been noticing that their pants didn’t fit right or that they wanted whipped cream but knew they were on a diet or worrying that they had lipstick on their teeth, but they probably weren’t taking that much notice of her.

To think people noticed her incompetence was to assume that people noticed her…and perhaps that is giving us too much credit when people spend most of their time noticing what they are doing.

At most, she was a role player, or a supporting actor, in someone else’s scene.

Let’s say I happened to be behind her in line at the coffee shop that day. I hope that I would’ve been patient and maybe even helpful, but let’s say I was annoyed. Still…I maintain that I’m the big stick figure and she’s the little stick figure in my scene. If my husband had asked how my morning was, I might have responded with something like this:

Well, I was running behind for that 8:30 meeting and it was taking forever to drive across town because got stopped at every red light but of course I had to stop for my coffee. Unfortunately this woman ahead of me in line was taking forever to pay for her coffee and I was getting more and more anxious that everyone at my meeting was going to be passive-aggressive that was late so I kept trying to will that lady to speed it up. 

You see how the woman with dementia isn’t the star of the story? She’s not the big stick figure. You know who the big stick figure is in my story? It’s me. It’s all about me. Because I’m the one telling the story.

Whether you are a person living with dementia or a care partner who might feel like the world is scrutinizing you when you assist your love one in the grocery store or a person like me who does embarrassing things in public regularly, keep in mind that you’re only the big stick person in your own head.

You are a little stick figure to the rest of the world.

 

 

 

Anticipatory Grief and Dementia

Anticipatory grief.

I first learned the term when I was in graduate school. I threw it around a lot when I was volunteering for hospice. Now that I work with families impacted with dementia I apply the term frequently.

It could be described as the emotional response to the pending death of a loved one–but I know people who have a loved one with dementia that have experienced anticipatory grief when death was still years away. It’s seeing someone you care about slip away little by little. It’s looking at someone right in front of you who doesn’t recognize your presence–and you know they never will again.

I’ve heard Alzheimer’s called the “long goodbye.”

That’s anticipatory grief.

Sometimes we think an extended period of anticipatory grief means that we will be prepared for a death. But I don’t buy that. Sure, maybe there’s some relief when we’ve been processing the loss for some time. Yet we can’t pay our dues with anticipatory grief…grief after a death still comes for us.

We grieve our loved ones when we lose parts of who they were–when they no longer recognize us, when the lose the ability to communicate verbally, when they can no longer drive, cook, or mow the yard. We grieve bit by bit. You’d think we’d be all out of grief at some point, but it doesn’t work that way. Grief is a lot like love (and closely related to it). It’s pretty limitless.

It’s okay–and normal–to grieve someone who is living.

But we can continue to enjoy the moment even when we are experiencing anticipatory grief. We can grieve what our loved one has lost while appreciating what is left. Grieving someone doesn’t mean we finalize our relationship with them. It doesn’t mean we write them off.

It just means we mourn what we’ve already lost while preparing for more loss. In our heads, we may be composing eulogies and visualizing funerals. And many of us live like that for a long time. We get through by hoping for a “better” day even when we know someone isn’t getting better.

A few months ago, older gentlemen who attended a dementia support group I spoke at asked me if it was normal that he visually rehearsed his wife’s death. At night, he would sit in his recliner and practice what he wanted to say to her as she neared the end. He had found some CDs he’d like to play for her in her final hours. He’d written a short script of what he’d say when he called family to let them know she was gone. He knew exactly who he wanted to stay at his house in the days after she died (and who he didn’t).

“That’s morbid, isn’t it?” he asked me.

In order for something to be morbid, it has to be abnormal and unhealthy. (I know this because I just looked up the definition of morbid.) And this isn’t abnormal or unhealthy.

Death, like birth, is a part of life. And we rehearse births in our society. We decide who we would like to attend a birth. I know plenty of couples who have had “birth playlists.” Mother are encouraged to make birth plans. We anticipate birth and we make a plan.

Why should death be any different?

Someone who lost their wife decades earlier–and was happily remarried–once told me that there is no finish line to grief. Sure, you develop a new sense of normal and you do your best to move forward, but the grief doesn’t have a definitive end date.

Perhaps grief doesn’t always have a clear start line either.