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.

Grandmas, weddings, and dementia

I feel like this needs some attention because I get a lot of questions about it.

Dementia and weddings.

Grandma has dementia. Should I take her to her grandson’s wedding?

Obviously, lot of people with dementia go to weddings and it’s a non-issue. People living with dementia even get married. However, as dementia progresses things become more complex.

It’s a fair question for someone who is moving toward the final stages.

Will grandma understand who is getting married? Will she be able to sit through the whole ceremony? Will the reception be overwhelming to her? Will she struggle to remember all the people at the wedding? What will we tell people if she says something that doesn’t make sense?

I don’t know if you should take your grandma to the wedding, but I can present some food for thought in the form of a question….

…Will grandma enjoy the wedding?

If she won’t enjoy the wedding, think twice about taking her.

Our first priority is to make sure that people with dementia are safe, happy, and have minimal pain–and this includes emotional and physical pain.

Will she be safe at the wedding? Will she be happy? And will she be free from pain?

We often think of this wedding question as an all or nothing, but it’s not. Can grandma go to the ceremony but not the reception, or vice-versa? Can she watch on Zoom at home with a friend? Can someone be prepared to take her home when she becomes overwhelmed? Can she sit in a quiet room at the reception facility where people can stop by and say hi in small groups?

Let’s face it.

Weddings are a lot for all of us. And they are certainly a lot for people with dementia. The marathon of the wedding is emotionally exhausting. People with dementia have limited mental energy.

When that mental energy is depleted, they may become agitated, more confused, or withdrawn. You know, that’s the same thing that happens to me when my mental energy is sapped. It’s just that my energy usually lasts a bit longer than that of someone with dementia.

You are not a bad person if you don’t bring your grandma to a wedding. Make her part of it in whatever way is possible, but don’t put her in a situation where she is not set up for success.

A while back, a friend told me that her grandma who has Alzheimer’s recently attended a family wedding. My friend told me it didn’t go well. I asked why.

Grandma hadn’t understood she was supposed to throw the rice as the bride and groom passed. As soon as the container was handed to her, she opened it and showered herself in it while gleefully wishing herself a happy birthday. (No, it wasn’t her birthday.)

At the reception, she had a long conversation with the bride and told her she was the most beautiful bride she had ever seen. She gave her some advice about marriage–mostly about sex–which the bride took very well after a couple of glasses of wine.

Grandma kept saying how excited she was that she had been able to see her sister at the church. In fact, her sister had passed away years earlier. They weren’t quite sure who she misidentified as her sister, but Grandma just kept saying how young and healthy she looked.

On the way home, Grandma sat in the backseat and said, “What a beautiful birthday party!”

The next morning, Grandma’s caregiver asked how the wedding was….and she said she hadn’t been to a wedding in years.

I asked again, “Why didn’t this go well?”

My friend told me how disappointing it was that Grandma didn’t remember the wedding.

I didn’t see it that way. Grandma enjoyed herself. And that’s what weddings are about, right? (And birthdays, for that matter.)

And you aren’t disappointed that your kid doesn’t remember their first birthday party. You are just glad they seemed happy at the time.

It’s not about the memory. It’s about the moment.

Louder, for the people in the back….

IT’S NOT ABOUT THE MEMORY. IT’S ABOUT THE MOMENT.

If your loved one is in a place to go to a wedding and enjoy the moment, they should go. But have a back up plan. If they are overwhelmed, stressed, or anxiously confused, get them out of there, even if it’s just suggesting a stroll outside to regroup.

And change your expectations. Perhaps Grandma can’t play the role in your wedding that she would have played years ago. Dementia forces us to adjust. Be creative.

As always, meet people where they are.

Limitations, Loss, and What is Left

“Don’t let what you cannot do interfere with what you can do.”

This one of my favorite quotes, and I try to follow the advice within.

Last weekend I ran a half marathon.

I almost didn’t. I had a few injuries. I hadn’t run for a couple weeks due to nerve pain. I knew the weather was going to be cold and rainy.

I run at least one half marathon a summer, but I was resigned to the streak ending. However, I woke up that morning and my body felt pretty good. My ever-supportive husband and I got up early and headed to the (social distanced) start.

I almost didn’t run because I knew it wasn’t going to be a personal best. I knew it would be slower than my last race by quite a bit.

I couldn’t run a half marathon fast (for me) but in the end I didn’t let it interfere with what I could do that day—which was run 13.1 miles.

We do this a lot. We let not being able to do something well stop us from doing anything at all.

We realize we cannot clean out our basement junkroom (Does every have one of these? Or just us?) in one afternoon, so we don’t start the task at all. We could commit to working on it an hour a day, but we don’t.

We see our neighbor going for a daily walk. We want to be a person who goes on a daily walk, but our life isn’t at a place where we can commit to everyday. Instead of walking 2-3 days a week, we don’t walk at all.

I knew a guy with dementia who talked a lot about what we used to be able to do. He was a great bowler and a real good dancer. He would talk about it in this sad tone, but then he’d break into a smile.

“But I can still talk!” he would exclaim.

He missed doing the things he used to do but he appreciated what he was still able to do.

People have dementia have a better quality of life if they focus on what they can accomplish rather than what they can’t accomplish…and, while we’re on the topic, this applies to all of us, especially you, caregivers.

Maybe you live two hours away from the nursing home where your grandma lives. You want to visit her everyday. You know it’s just not possible. You stop going at all because you feel so guilty that you can’t go everyday. It’s okay to go once a week. Or even every other week.

“Don’t let what you cannot do interfere with what you can do.”

You can’t go everyday, but you can go once a week.

Here’s a big challenge for a lot of caregivers. Perhaps you can’t visit with your dad like you used to. You can’t have the same relationship with him that you did. But you can have a relationship with him.

Dementia is full of loss. The loss of abilities. The loss of skills. The loss of memories.

I know it’s hard, but we need to look past that loss to focus on what is left.

Maybe a person with dementia progresses enough that they must quit their volunteer position at a childcare. It’s a loss, but what is left? Can they find a new volunteer position that is a better fit for their abilities? Can they play with a neighbor’s children while the neighbors gets some work done?

And caregivers…you have loss as well. You are no longer able to visit with friends because your loved one needs 24/7 care. You let your friendship fall by the wayside, and you become isolated. You can’t visit with friends in person, but you can call one friend a night for 10 or so minutes. And you can send your friends texts and emails–or even cards in the mail.

It’s not that easy, I know. And, for both persons living with dementia and caregivers, the loss is progressive and you see the pile of what you can’t do getting bigger and bigger. I hate the way that dementia limits the lives of those impacted. I am not trying to convince you to “look on the bright side.” Suzy Sunshine I am not.

I am not dismissing that growing list of what you cannot do. You get to grieve those losses. But don’t let those things paralyze you or stop you from doing what you have the potential to do.

I am about to give some advice that you probably never thought you’d hear coming from a college professor:

It’s okay to give 50% to something when you can’t give 100%.

It’s okay to hold yourself to lower standards than you have in the past.

It’s okay to set your goal based on your abilities and skills in that minute rather than challenging yourself to do the best you’ve ever done.

It’s okay to do something and realize it’s not going to work, AND THEN QUIT. (If we never quit at anything, we’d never accomplish anything. Think about it…you have to quit something that isn’t working to start doing something that is, right?)

It’s okay to accept mediocrity. I’d like for to strive to be the best you can be, of course, but most of us are average at most things. I strive to be the best college professor, gerontologist, and wife I can be, but mediocrity is acceptable in many areas of my life—-like cooking.

Accept that there are some things you cannot do. Maybe you could never do these things. Maybe you could do them before dementia or before becoming a caregiver. Maybe there is a point in your future when you can do these things again, or perhaps not. There’s a good chance that you can’t do some things due to the COVID pandemic. Perhaps you cannot do some things right now due to mental health concerns.

But today we just have to do what we can do.

And it’s enough.

Dementia, Attachment, and Unrelated Questions

“Can I ask an unrelated question?”

I often get this question as an appointment with a college student is wrapping up. It is one of my favorite questions.

It’s like that Forrest Gump box of chocolates deal. You never know what you’re going to get.

Sometimes students want to know where I get my hair cut in our college town (and I’m flattered for days). Sometimes they want to talk to me about whether they should make an appointment at our counseling center. Sometimes they have seen pictures of my dogs on Twitter and want to know what vet we use (Den Herder in Waterloo, IA…this is not a paid ad but they are great). Sometimes they want to know who to contact in Financial Aid if your parents got laid off due to COVID and you can’t pay your U-bill.

Here is her unrelated question: “How do I keep from getting attached to all the people while I work in memory care?”

She is a freshmen and just moved into her residence hall a couple weeks ago. She applied at a local memory care community and got the job. She’s only worked a few shifts in training. She tells me she’s already attached to the residents. (As a side note, she’s not a Gerontology major now…but I hope she is soon.)

I was startled by how difficult it was for me to answer this question. I don’t know how you keep from getting attached. I had no tips or expert advice to offer.

I am attached to the adults with dementia that I’ve gotten to work. For that matter, I have an attachment to students I get to work with.

I don’t cross boundaries, but I’m a human being. And I care. I think’s probably hard to care and not become attached.

Then it occurred to me that maybe I should think about the question. Maybe we should ask whether or not it’s okay to get attached to the residents.

I starting thinking about family members who have loved ones in facilities and cannot visit due to COVID. I realized that many of those families are surviving only because they know there is an employee in the facility who is attached to their loved one.

Imagine if you couldn’t see your mom, dad, grandparent, spouse, sibling, or friend for months and you felt that no one was attached to them during that timeframe.

I understand professional boundaries. I understand burnout. I understand that you should be able to let go after your shift. I know that professional caregiving is stressful and you need to step away, relax, and regenerate. I encourage you do all these things and understand you are only one person who can only do so much.

But I’d worry about a professional caregiver who wasn’t attached to residents.

And I have a suspicion that professional caregivers are even more attached now that family visitation is limited.

As a director of nursing at a nursing home recently told me, “It’s the residents and employees against COVID. We are all on the same team, and we’re in this together.”

Whenever I post something positive about nursing home employees, I get some messages from you all to remind me that not all nursing home employees are great. Before you email me, know that I get it. If you’ve had a loved one in a nursing home or assisted living, you’ve likely run into caregivers who weren’t up to par. You have every right to speak up and voice concerns. We have to advocate for our loved ones and I support you in doing so.

But, please, if there is a nursing home employee who takes good care of your loved one, mention them to management as well.

Many of the gerontology majors that I work with are employed at nursing homes. You know those pictures you see of college students out at bars and parties without masks…you won’t see them in those pictures. They sacrifice parts of college life because they can’t get COVID. They’d be devastated if they infected nursing home residents.

As for my college freshmen, she had some great questions about how communicate with her residents. She wanted to know if it was okay to imply that someone’s loved one was still alive when they were wandering around looking for them. She wanted to how to calm someone down when they were agitated. She wanted to know what to tell residents who wanted to go home.

She’s going to be great.

See Ya Later, Alligator!

Hi friends,

I wanted to let you know I’ll be taking my summer break from blogging for the next month or so. In August I’ll be doing a few Zoom presentations, so be looking for some info on that.

If you need me, I’ll be teaching summer online courses, prepping for fall classes (whatever that looks like), kayaking, biking, running, and–most importantly after all of that other stuff–napping. If you know me, you probably know how much I love a good nap, the kind that leaves those pillow lines on your face for a good 30 minutes after you get up.

In the meantime, be safe and be kind (to everyone–even yourself). If you are going through something challenging…and who isn’t right now…please know I’m rooting for you from afar.

As one of my friends has been saying, stay positive and test negative!

Elaine

Image result for im rooting for you

“Solo” Walks (aka I Walk Alone But It’s Fine You’re There)

When I was in my 20’s, I spent a lot of time volunteering for hospice. One of my first hospice patients was a woman in her 60’s who had dementia. Her son lived with her, but he needed a weekly respite.

I was told she was active and liked to go for walks. In fact, that’s one of the reasons I volunteered to spent time with her. After all, who couldn’t use some fresh air?

On my first day at her house, she announced she was going for a walk and started putting her shoes on. I started to put my shoes on.

“Now where do you think you’re going?” she asked.

I told her I was going for a walk with her.

“I walk alone,” she said bluntly.

I wasn’t exactly sure what to do. I couldn’t really walk with her if she didn’t want me to, but I knew hospice and her son wouldn’t be thrilled if I lost her.

I let her walk out the door and quickly put on my shoes to follow her. She walked about a quarter mile, and I hung out about half a block behind her the whole time. When we got home, she went in the back door and I snuck in the front door.

“How was your walk?” I asked.

“None of your business,” she responded.

Okay, then.

I realized she wasn’t going to make this easy on me. I wasn’t sure if dementia had made her more irritable or changed her personality. Maybe she just didn’t like me.

I wasn’t sure if she couldn’t remember my name or just didn’t want to acknowledge my presence. She didn’t talk to me unless I spoke to her first, and she usually gave me one word answers. I had a goal of getting invited on a walk with her, but it never happened.

One day she said, “You know, you can sit in the other room while you are here. We don’t have to be in the same room.”

Ouch.

But I kept coming back.

And I kept following her around on her walks.

In a way, it was a fun game. I had to keep her in sight, obviously, but I didn’t want her to see me. Occasionally I had to duck behind a tree or crouch behind a bush.

Over the next couple of months, I saw her once a week. Her walks become slower and her gait changed, but we kept with our routine. Her confusion increased, but she never struggled to stay on her route.

One day she got ready to leave for her walk and took a look at my shoes that were sitting by back door. Normally I wore tennis shoes to her house, but I had an event to go to after I visited her, so I had worn dress shoes on this particular day.

“Can you walk in those shoes?” she asked. My heart leapt. I thought maybe I had finally won her over and she wanted to invite me to walk with her. I asked if she wanted company.

“I walk alone,” she said. I gave her a quizzical look. “But it’s fine that you follow me like you do.”

I was shocked that she was aware I followed her. Maybe I wasn’t as sneaky as I thought.

Then she said something that resonated with me: “I walk alone but it’s fine you’re there.”

I walk alone but it’s fine you’re there.

I could have said the same thing to my family and friends so many times throughout my life. I’m an only child, and my husband says I am “100% only child.” I like to make my own decisions. I don’t like to ask for help. For better or worse, I do things my own way–even if it’s proven to be the wrong way. Above all, I like to spend time alone.

I appreciate now that my hospice patient was perhaps similar in her need to spend time alone. She wanted to go for a walk. By herself. I get it.

But, in the end, it was fine I was there. She didn’t want to interact with me. She didn’t need my conversation. But it was fine I was there.

It was better if I sat in the other room…but it was fine I was there.

After a few months of weekly visits, she moved to a memory care community.

It made me sad that she could no longer go on “solo” (note the quotes) walks, and it bothered me that she had a roommate. Actually, it probably bothered the roommate as well.

I went to visit after she got settled.

“It’s fine you’re here but you can sit in the other room,” she said.

Strangely, I took that as a compliment from my fellow introvert. She didn’t need to talk to me. We didn’t need to play board games or do a craft. It was enough that I was there….in the other room.

I walk alone but it’s fine you’re there.

 

 

 

Zoom “When Dementia Knocks” Presentations: Tell Me What You Want and I’ll Do My Best!

Hi friends!

I want you to know that I appreciate you. Whether you found me recently on social media or starting following me when I started writing this blog in January of 2015 (oh, wow, back when I was in my 30s!), I am flattered that you tune in every Monday morning to see what I have to say…even though sometimes it’s just a ramble with little direction and an occasional typo.

I am considering doing some free zoom presentations as a thank you gift for all the encouragement and support you have given me. This is not–at this point–a well-defined idea. In fact, I’m looking for you to shape it. What do you want to hear about? What are common issues you have as people living with dementia and as care partners? What times and days work best? Would you be willing to give me some feedback in the comments?

I can’t please everyone (God knows I’ve tried and failed), but it’d be cool to get an idea of how I could be most helpful.

This is a crazy time. Since my schedule is typically a bit more flexible in summer, I usually do a lot of dementia education presentations in June and July. Obviously, I’ve been grounded a bit this year. In some ways, I feel like my wings have been clipped.

It hasn’t been all bad. I mean, I just bought a stand up paddleboard and I’ve been out on the lake two days in row.

Yet, I’d be lying if I said I didn’t miss speaking engagements and dementia education sessions. I don’t know when life will get back to normal, but it’s about time I start launching myself back into long-winded and sometimes disjointed monologues about what we are getting wrong regarding dementia.

You gotta get back on that bike, right?

Perhaps planning a series of zoom presentations would fill that void. Tell me what you want to hear about.

I suppose I could put that stand up paddle board in the garage for a day or two.

 

 

Truth, Lies, and Dementia (aka How Many Times Can You Tell a Guy His Dog Died?)

Our dog, Karl, died a few years ago. His mind was willing, but his back legs and hips had enough. He lived to the ripe old age of 14…which is a ridiculously long time for an English mastiff to live. We adopted him when he was 6. I don’t know what his life looked like before we met that day at the shelter, but I am affirm that he lived his best life once he ended up at our house.

We made the choice to euthanize him after he could no longer walk on his own. We stopped at Burger King on the way to the vet. He put down a whole serving of chicken fries in the backseat. At the vet, they gave him EZ cheese (you know, the kind in a squirty can) as they injected the medication.

As far as pet deaths go, it was among the best. He lived a long life. He died eating EZ cheese.

But it sucked.

Losing a pet sucks.

And that’s why I had a hard time with this story.

I was presenting for a class at a local nursing college when a student told me about her neighbor with dementia. His dog, Daisy, had passed away a few months back. Every morning he woke up and looked for Daisy. He’d ask his wife where Daisy was.

And everyday, he was told that Daisy had passed away.

Every. Single. Day.

He was told everyday that his dog died.

You know the day we lost Karl? He lived that everyday.

And he cried. Every. Single. Day.

This pain of losing his dog was inflicted upon him each day. However, he was unable to process that information. And he’d ask again the next day.

It’s like giving a shot. You feel the pain. Except with this shot…the medication wasn’t injected. So, really, it was just like stabbing him repeatedly with a needle.

His family thought that, in time, it’d stick. He’d remember that Daisy was gone. So they kept telling him, time and time again. And he cried, time and time again.

His family didn’t want to lie. I mean, honesty is the best policy, right? Isn’t that what our parents taught us?

Except…maybe there are exceptions. Maybe dementia changes the rules.

We don’t like to call it lying. In my field, we call it therapeutic fibbing. It makes us feel better.

So where is Daisy?

She’s on a walk with a friend.

She’s at the groomer.

She’s visiting another family member.

She’s at doggie daycare.

Sometimes we feel like we are breaking a rule of ethics when we fib to someone with dementia. If someone with dementia is unable to process our reality, let’s step into their reality. If their reality suggests that Daisy is still alive, let’s be a part of that reality.

I frequently am asked the question: “Is it okay to lie to my loved one with dementia?”

I used to dance around this a bit. I’d talk about stepping into their reality. I’d mention therapeutic fibbing. I once read this philosophical piece about when lying is okay, and I’d tried to awkwardly paraphrase it. It was like a sub-par mini Ted-talk on the ethics of lying.

After going through all this, family members would give me a confused look and say, “So you’re saying it’s okay to lie? Or not okay to lie?”

Now I just say yes.

When the truth causes pain and the information won’t stick anyway…it’s okay to lie.

 

 

 

Dementia, Love, and Forgetting: Can You Be Loved by Someone Who Has Forgotten You?

Once an older guy told me, “My wife has Alzheimer’s and doesn’t know who I am, but I still love her.”

It struck me that he used the word but to connect those two statements–as if it were surprising that he still loved his wife.

I didn’t find it surprising, of course. We don’t stop loving people when they forget who we are.

And…when someone forgets you…what does that mean?

Does that mean they don’t remember your name? Does that mean they don’t remember their relationship with you? Does that mean they perceive you to be someone different than who you are? Does it mean they have no clue who you are but seem to have a sense of comfort when you’re around?

Like so many things in dementia, forgetting isn’t black and white.

The man who told me that he still loved his wife said that he didn’t know if his wife still loved him or if she was even capable of love at this point in her disease process. It made me sad to hear him say that, and I told him that I knew she still loved him even if she couldn’t express it.

“I guess there’s just no way for that love to get out of her. It’s stuck in there,” he said.

Then he shrugged and said it didn’t really didn’t matter…as long as he loved her. He said he’d gotten enough love from her over the last 30 years to last him for a while.

I didn’t know what to say except to smile and tell him I had a feeling he’d been a pretty good husband over the last 30 years.

But, dementia aside, it’s hard to be forgotten. We want to be recognized by the people we care about. We want people to remember what we say and do. We like it when people remember our likes and dislikes. Remember when that friend or family member gave you a gift because they saw it and remembered you?

If my husband is going to grab dinner on the way from work, he remembers what I usually order at all of our favorite restaurants. He remembers I won’t eat curry or malt flavoring–as inconsequential as those preferences are to everyday life. He also remembers that I prefer Luden’s cherry cough drops when I have a sore throat but he’d better buy the sugar free because he also remembers I’ll eat the whole bag in three hours.

I could give a run down of all of the small things that my family and closest friends remember about me. It’s not rare for a friend to buy me something because they remembered something I said that I don’t remember saying. I’ve got a couple of friends who are absolutely gems at making me feel special by doing this.

It’s fair to say that people show love by remembering.

I show love by remembering when I ask a friend about a health concern that she had briefly mentioned weeks ago. If I mention to my husband that I am going to make him dinner twice a week (and that’s A LOT for me), I remember to buy groceries so I make those meals…not that they’ll be any good. I’m not known for my cooking.

Many aspects of our relationships are built on remembering. Remembering to do what we said we’d do–you can’t fulfill a promise if you can’t remember it. Remembering people’s preferences so we can treat them like they like to be treated. If I stopped remembering, all the important relationships in my life would fall apart.

And then comes dementia.

Can people love when they can’t remember?

I think the answer is yes, but dementia can change what that looks like. Maybe love is expressed differently as dementia progresses. Perhaps we need to become more flexible with what love looks like.

Someone with younger-onset Alzheimer’s once told that she would wake up in the middle of her night and look at her husband sleeping next to her in bed. She knew she loved him but she had no idea who he was. No clue what his name was or even that he was her partner. But an overwhelming sense of well-being because this person loved her. And that she loved this person.

It bothered her that she could forget her husband….but maybe you can forget someone’s name and their relationship to you without really forgetting them. Perhaps remembering isn’t dichotomous; maybe it’s more complex than remembering or not remembering.

I’ve heard many people living with dementia say something to the effect of, “I don’t know who you are, but I love you.”

It seems as if you can remember your love for someone without remembering their identity. Maybe you don’t have to know someone to love them. Perhaps it’s enough to have a feeling that maybe you used to know them.

I once spoke to a woman who found some solace in her husband’s forgetting. With dementia, he had forgotten to continue their ongoing nitpicky arguments. He had forgotten that they weren’t that lovey-dovey couple, and he’d even started holding her hand in public. She was thinking that perhaps dementia wouldn’t be so hard on their marriage when one day they were out to eat at a restaurant.

“You’re great, but if my wife ever learns we’ve been doing this, she’d kill me,” he said.

“Do you love your wife?” she asked. He paused for several seconds.

“Not really,” he responded.

She was devastated, understandably. She sobbed the entire night.

Then she spent some time processing. She decided that maybe it wasn’t important that he loved his wife if he couldn’t identify his wife while she was sitting right in front of him–but the woman sitting in front him was someone he thought was pretty great….and that was her. Maybe she needed to find a way to embrace that.

From that point forward, she decided to appreciate that he enjoyed the woman in front him no matter who he thought that woman was. If he thought she was his mistress, so be it.

It’s not easy to identify all the ways in which dementia and love are intertwined.

I don’t think dementia erases love.

But it does change love.

And perhaps those of us who have a loved one with dementia need to be open to receive love in unexpected, and sometimes strange, ways.

 

 

 

 

 

 

 

 

Why Dementia Means Letting Go (and Why My 2020 Theme is “Let Go”)

So what’s your personal 2020 theme? (Can you answer this question without using a four-letter word that would’ve gotten you in trouble at recess?)

You’ve got your personal and family challenges, which likely include dementia since you are reading my blog.

You’ve got whatever chaos is happening in your community. Maybe people are arguing about defunding your local police. Perhaps you don’t feel safe on your streets. Maybe you own a local business that is struggling in these times.

Then there’s the national and political scene–and negotiating your perspectives with family and friends who might disagree.

Oh, and COVID. The coronavirus is still hanging out, making all of the above just a bit more complicated.

I read an article a few years ago about creating a personal theme each year. It should be preferably short and to the point. Something like Elevate. Grow. Strength. Persevere. Love. Focus.

You are supposed to come up with that theme before the year starts, of course. And I didn’t create one as we rung in 2020.

However, as the year goes on, I feel like my personal theme of 2020 is becoming let go.

Let go.

I’m not good at it.

In 2020, I had to let go of the vast majority of work and social plans I had made.

In 2020, I had to let go of my goals (at least some of my short term goals) because I wasn’t set up to achieve them for reasons that were out of my control.

In 2020, I had to let go of some of my self-criticisms because what is going on in the world (and in the lives of those I am close to) is so much larger than my concerns about gaining 10 pounds or not finishing that research article I started. I had to admit that many of the things I hate myself for are really just small potatoes and not worth my mental energy.

In 2020, I had to let go of the notion that I am in control. I’ve always felt I could make things happen out of pure will and hard work. In the past, I’ve been pretty effective…but so much has happened that I’ve had to throw up my hands and walk away. So many projects derailed. So many tasks abandoned. I’ve struggled with feeling inadequate and unproductive, and I’m still working on letting that go.

In 2020, I also let go of a relationship with a family member in a way that was messy and complicated. Actually, I can’t say I let go of that. I’m a work in progress. Aren’t we all?

I don’t know what your 2020 theme is. Maybe at this point it’s survive. And that’s okay. If your goal at this point is just to make it to 2021, I’m right there with you.

But I find myself coming back to let go when I talk with caregivers and those living with dementia recently.

I’m telling caregivers to let go of their guilt for not being able to visit their loved ones at nursing homes during COVID. It’s out of your control. This is a reminder that you can’t control COVID. (In fact, if you can control COVID but you haven’t been doing that, you’re a real jerk.)

I’m telling people living with dementia to let go of their expectations of themselves. The world is overwhelming right now. Maybe you feel like those added stressors are sapping your limited mental energy and your brain is just tired. Be patient with yourself. And don’t be afraid to rest.

I’m telling caregivers who provide in-home care to let go of the anger they feel at themselves when they aren’t at their best. Being a caregiver is demanding, and today’s climate has created more challenges. Maybe you aren’t always as calm and composed as you wish you were. It’s okay. Let go of it. Move on.

On Friday, I gave a socially distanced presentation to a group of future nurses. One of the nursing students asked me what I found to be the biggest challenges for family of those living with dementia.

Without thinking, the words that came out of my mouth were letting go.

There’s a lot of letting go that happens when it comes to dementia.

For caregivers, it’s letting go of the person you used to know and embracing the person in front of you. It’s letting go of your past mistakes as a caregiver. It’s letting go of your feelings of inadequacy and knowing that what you are doing is enough. Maybe it’s letting go of your previous social life and friends that no longer make an effort to see you. Perhaps you had to let go of your job or your hobbies.

Many caregivers have to let go of their idea of what their future might look like. As one dementia caregiver once told me, “I had to let go of thinking we’d be that cute old couple eating ice cream together on a bench.”

For those living with dementia, it’s letting go of what you used to do and finding new things to do. It’s letting go of parts of your identity that were important to you. It’s letting go of control of some of your decisions and passing them to people you (hopefully) trust.

Maybe you had to let go of your career, your car, and your household responsibilities. A friend of mine with dementia was devastated when he had to give up mowing the yard because he could no longer safely use a mower.

Dementia caregivers and those who have dementia live in a world that forces them to let go everyday. Sometimes that letting go occurs gracefully, and sometimes we fight it. Sometimes what we let go of is replaced by something better. Sometimes other people see and acknowledge when we let go of something, but often it’s something that occurs privately. Sometimes we grieve for five minutes. Sometimes we grieve forever.

As for me, I didn’t choose let go as my 2020 theme. It just developed. I’m good at hanging on. Letting go is harder for me, but I’m up for the challenge.

 

Quotes about letting quote with pics and sayings