Category Archives: dementia

Dementia and the Tired Brain

alzheimer's, caregiver, caregiving, dementia

This blog post was a struggle to write.

It usually takes me about 45 minutes to complete a post. Today I’ve been sitting here for well over two hours. And I am on the second paragraph.

You see, it’s the week of finals at the university where I work. It’s stressful for college students, of course. It’s also stressful for professors.

My brain is tired.

I considered taking a week off from writing, but I’m pretty committed to releasing a blog post every Monday morning. I’ve started this post about seven times. Maybe more. I keep writing a few paragraphs that just don’t work…and then I delete them and start again.

There’s also been a lot of staring at the carpet and thinking I should get up and get a snack but not having the motivation to actually do so.

I can’t decide what I want to write about. I started a post about end-of-life decision making and dementia. It’s an important topic, but I decided it was too much of a downer for me to tackle today. I’ll save it for another week. I can’t do it justice right now.

Then I started a post that was intended to be more light-hearted and positive. However, I couldn’t pull off light-hearted and positive today. I just didn’t have it in me. You get it, right?

Most weeks I write easily. I enjoy the process. I sit here in our family room with my laptop on my lap and our dogs by my side—and it’s fun. I look forward to the time I spend writing.

Today is different.

My brain is just exhausted.

Last week was full of emails from students who aren’t pleased with their grades. Have you heard the term “grade-grubbing?” I have sent at least ten emails in the last three days explaining that grades aren’t negotiable. And no….I will not create an extra credit opportunity just for you because you didn’t complete your assignments during the course.

It was full of catching up on evaluating student essays. It was full of students panicking because they are not yet registered for spring classes. It was full of all the typical end of semester stuff. Nothing horrible has happened…just a series of very, very minor crises that must be dealt with.

I’m not complaining. It’s my job, and I like my job. I work with some of the most inspiring, grateful, and promising young people. And you can’t be a professor if you can’t handle finals week. This is not me asking for sympathy or pity. All is good.

More than anything, this is a reminder of how compromised the brain can be when it’s tired. Right now, everything is harder than it should be. Last night I was watching TV and realized I had no idea what I was even watching, even though I had been “watching” for 20 minutes. I also tried to open a new bottle of facewash and couldn’t get the lid off. I just gave up and decided I didn’t really need to wash my face.

I’m also indecisive. The other day I stood in the kitchen staring at the countertop because I couldn’t decide what to have for lunch. I just wanted someone to give me a peanut butter and jelly sandwich on a paper plate. Making a decision just seemed to take more mental energy than I could muster.

This is a reminder of what my friends with dementia struggle with on a much larger scale than I do.

The dementia brain has to work hard to accomplish tasks that most of us consider to be mindless. To scroll Facebook. To carry on a conversation. To wrap a holiday gift. To make coffee. To shower and get dressed.

Those of us who care about people with dementia sometimes place unnecessary stresses on the dementia brain. We don’t introduce ourselves when we enter a room—forcing the dementia brain to waste precious mental energy figuring out who we are. We love to quiz people. We ask Grandma if she knows what holiday is coming up. We ask her if she remembers how many grandkids she has. The purpose of the quizzing is to make us feel better. I mean, if Grandma knows Christmas is coming, she’s doing okay, right?

We take Mom to the grocery store. It’s a bit chaotic—but we don’t think it’s a big deal. Later in the day, she gets a bit testy. She can’t tell you she’s tired. We just know she’s “being difficult.” We don’t make the connection that the trip to the store was just too much. And now her brain is just—-done.

We all know that feeling of being mentally exhausted. We all know that feeling of having a really hard day when nothing seems to go right…and then having someone ask you to do something very simple…something that would be no big deal 99% of the time. And you just can’t handle it. Your brain is tired. Maybe you say something you regret. Maybe you have a minor (or major) meltdown. You get teary. Perhaps you want to punch something. Or someone.

It’s just that the threshold is lower for people who have dementia. The dementia brain takes longer to regain the mental energy it takes to do even simple tasks. And instead of us realizing the person’s brain is fatigued, we get frustrated and say they are “giving us a hard time.” In reality, they are having a hard time.

I can’t say that I know what the brain fatigue that comes along with dementia is like. I know what it’s like to have “normal” mental exhaustion—and I understand how that mental exhaustion can compromise my thought processes, my mood, my ability to converse, my patience… Yet, I know that my brain will recover after the crazy rush of the end of the semester and a little bit of rest.

The dementia brain also functions better with rest—except it needs more rest than the typical brain to function at its best possible level and its best possible level isn’t what it was before the onset of symptoms. The compromised mental energy that comes with dementia isn’t something we can change. It’s something with which we have to cope. And we can do so by structuring the days of people with dementia in a way that provides adequate rest and helping them to avoid unnecessary mental stressors. Sometimes that means keeping our visits with them shorter.

I have told many people with dementia that their mental energy becomes more limited and precious as dementia progress. They get to decide how to spend that mental energy.

A woman that I know who has younger-onset Alzheimer’s recently spent a few hours each day for a week writing and addressing holiday cards. This activity was tiring for her, as she expected. But it was worth it. Sending personal holiday cards to friends and family is an important tradition for her, and she wasn’t willing to give it up, even if it meant she’d be able to accomplish little the rest of the day. Good for her.

In writing this post, my own brain stalled a few times, and I googled “dementia mental fatigue” (and a few differently worded terms) to see if I could find anything to stimulate my thoughts on the topic. Unfortunately, the top few hits referred me back to my own previous blog posts. This reinforced to me that fatigue in the dementia brain is a subject we aren’t giving enough attention. I have no idea why mental exhaustion isn’t discussed more frequently. We are missing the boat on this one, folks.

Dementia isn’t just about memory loss. (I don’t make any money from writing this blog, but I’m beginning to wish I made a dollar each time I could work that exact sentence into a post. I feel like a dang broken record sometimes.)

Here is the take home message…. Sometimes when we spend time with people who have dementia, we think they just aren’t trying. We think they’ve given up. We think they don’t care about their interactions with us. Sometimes we even think that they’re plain rude.

The truth is that their brains are compromised and have to work much harder than a typical brain in everyday life. They are trying. And they are tired.

So there it is–the best post my finals week brain could muster.

Please forgive any typos or grammatical errors.

Loving Two Women in Dementialand

caregiver, caregiving, dementia, marriage

A few years ago I met a couple who made me think a bit differently life after loss.

Art had been married to his wife, Ann, for almost forty years when she was diagnosed with Alzheimer’s. After her diagnosis, he learned everything he could about her disease. He read articles online. He ordered books from Amazon. He watched YouTube videos. He joined a couple of support groups.

When his wife moved to a nursing home, he was a constant presence there. Not only did he spend time with Ann, he dedicated himself to visiting with residents who didn’t have family and friends. When I asked him how many hours he spent each week at the nursing home, he shrugged. Maybe 30?

“I didn’t have anywhere else to be,” he told me.

At some point, he was approached by the local chapter of the Alzheimer’s Association, and he began volunteering at their fundraising events. He even overcame his lifelong fear of public speaking to tell Ann’s story.

Late one night, he got a call from the nursing home that Ann had passed away. Although she was approaching the end stage of Alzheimer’s, her death came earlier than Art expected. He will never forgive himself for not being with her.

Yet, life continued for Art. And it continued much like it did while Ann was alive. He still spent time at the nursing home to see his friends (maybe “only” 20 hours a week). He still volunteered with the Alzheimer’s Association. He even continued to attend support groups two or three evenings a week.

“I’m retired,” he said to me. “What am I supposed to do? Watch soap operas? I don’t even like golfing.”

Fair enough.

Then…one day about four months after Ann passed away…without meaning to…Art met someone.

It was the sister of an old friend. Her name was Juanita. He didn’t intend to start dating her. In fact, he never saw himself in a relationship after Ann’s death. But he liked Juanita.

He continued to go to the nursing home. He expanded his volunteer role with the Alzheimer’s Association. He even became a leader for one of his support groups. And he was dating Juanita.

Often, Juanita went to the nursing home with him. She had to, Art said, because he wanted to introduce her to his friends. Juanita even started volunteering with the Alzheimer’s Association. Eight months after Ann’s death, Juanita wore a shirt with Ann’s name on it and marched in her honor at the Memory Walk.

It was obvious to me that Art wasn’t “over” (as if that’s even a thing when you lose a spouse….) Ann’s death when he met Juanita. It seemed like has unwilling to give up pieces of his life related to Ann–the nursing home, the support groups, the Alzheimer’s Association. And Juanita jumped right in. They were married less than a year after Ann’s death. Instead of gifts, they suggested donations to the Alzheimer’s Association.

As I’m learning, life isn’t black and white. It’s not like your spouse dies, you grieve, and then you wake up one morning having completed your grief and ready to date.

In talking to Art, it was very apparent that he loved two women–one dead and one living. I’m sure this makes some people uncomfortable. I’m sure there are many women who would not want to marry a man still in love with his deceased wife.

Juanita has a different perspective.

She wants him to keep Ann’s pictures around the house. He took off the wedding ring from his first marriage, and Juanita put it in a shadow box along with a picture of Ann on her wedding day.

At Art’s request, Juanita made Ann’s favorite meal on her birthday. They even set a place for her at the table that night. (I’m going to be honest here–I might have cringed just a bit when they told me about this.)

Art also tells me that Juanita was about the same size as Ann. He took some of Ann’s clothes to Goodwill when Juanita moved in, but Juanita kept most of the fancier blouses and sweaters. (And–yeah–I did cringe here as well.)

“I bet you think it’s odd I wear her clothes,” said Juanita. I know that I was supposed to jump in and say I didn’t think it was odd….but I really wasn’t sure….so I didn’t say anything.

When someone dies, their spouse doesn’t stop loving them. There’s a difference between living in the past and continuing to love someone who’s gone. Juanita doesn’t see Art as living in the past–and she respects that he still loves Ann.

In a way, I feel sorry that Juanita–who has never been married before–has to share her husband with a woman who is deceased. She visits the nursing home and listens to everyone reminisce about Ann. She goes to Alzheimer’s Association events and listens to Art speak about how Alzheimer’s stole his wife. And once a week she watches Art walk out to the door to go to a support group, where he will focus on Ann’s journey with dementia.

Truth be told, there’s a part of me that is uncomfortable that so much of his focus is still on Ann.

But it’s not about me.

I watch Art and Juanita together, and they seem happy.  If Juanita is jealous or resentful that Art’s life still seems to centers on Ann and Alzheimer’s, she doesn’t show it.

“I’m lucky or maybe tricky–I’ve tricked two wonderful women into marrying me,” Art said, and Juanita laughs.

“And I’m lucky Ann trained him to be such a great husband,” Juanita tells me.

As they walk away holding hands, I notice they are both wearing their Memory Walk t-shirts with “Ann’s Army” and a giant photo of Ann on the back. I can’t help but think Juanita looks more than a little like Ann.

There really are three people in this marriage, I think to myself.

I can’t decide if the whole thing is totally weird or absolutely wonderful.

Maybe it’s both.

I allow my mind to wander, just for a second, and think about whether or not I could be in a relationship with a guy like Art. Could I set a place for my husband’s dead wife at dinner? Could I wear my husband’s dead wife’s cardigans? Or look at photos of her all over the house?

Then I shut down that internal conversation.

Because I’m not Juanita.

And it doesn’t matter if I could do it.

Juanita is doing it.

Last I heard, she and Art had started teaching a monthly cooking class at the nursing home where Ann lived. They continue to raise money for the Alzheimer’s Association in Ann’s name, and recently Juanita hired an artist to paint a large portrait of Ann to put over the mantle.

 

Love and Renovations in Dementialand (aka This One is For the Dementia Spouses)

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

Romance isn’t really my genre, but I’m gonna tell you love stories today. In fact, I’m going to talk about marriage.

In the US, about 40% to 50% of marriages end in divorce, and the percentage increases in subsequent marriages. Furthermore, the divorce rate among the over 50 crowd have doubled in the past few decades. It’s tripled among those over 65. (Sources: Pew Research Center & National Council on Family Relations)

You’d guess, by looking at those numbers, that Americans—particularly older Americans—don’t have great marriages. In particular, data suggest that our Baby Boomers aren’t that good at marriage.

However, I have a front row seat to some marriages that remind me that love isn’t just what you see in romantic comedies. Love isn’t about having a perfect life or a perfect marriage—which is a good thing because (despite what you might assume from a Facebook or Insta scroll) none of us have either.

A few weeks ago, I was talking to a gentleman whose wife has dementia. In the middle of the conversation, he drops this crazy statement matter-of-factly: “Moving wasn’t such a big deal for her because I got the same countertops and all.”

He continued for a few seconds until I interrupted.

“Wait. Stop. What about the countertops?” I asked. “You did what?”

He explained to me that he worried his wife would be stressed by transitioning to a new environment, so he completely re-did the kitchen in their new home to resemble the kitchen in their old home. Countertops. Cabinets. Backsplash.

To me, this was much more impressive than any renovation by Chip and Joanna Gaines. I had a moment where I fantasized about starting a new HGTV show called Dementia Reno, where people with dementia would move and I’d redo their new homes to look like their old homes. (Then I remembered that I once tried to use spray paint to paint my oven hood. Yeah, I know. You can’t do that.)

This man didn’t seem to think this was a big deal. He told me about it as if every guy who has a wife with dementia does a kitchen reno so his wife has less anxiety and confusion about their new home.

I do understand that not everyone has the resources to do this. Finances matter when it comes to dementia. More money means more options. This man had the money, he had the option, and he made it happen.

He didn’t see himself as a hero. He was just trying to make life a little bit easier for his wife. It worked.

I meet people like this all the time. Sometimes we use the words caregiver, care partner, or carer—but many folks don’t identify with those terms. In fact, I’ve done seminars for caregivers and struggled to attract a crowd. People tell me they care for their spouses because…well…they love them, but they don’t label themselves as anything other than a husband or wife. And they’re just doing what husbands and wives do.

I know a man who struggled to find a way to engage his wife as her dementia progressed…until he made a work desk and placed it in their basement. Every morning she goes to “work” and he gives her a task. Maybe it’s putting stickers on envelopes. Or filing. Or signing letters. A former secretary, she has a sense of purpose again. He was very excited about the Black Friday sale at Office Depot. He presented her with a new office chair as a reward for her hard work. He’s not sure if she knows he is her husband, but she says he is the best boss she’s ever had.

“Tell me when it’s boss’s day,” she once said. “I’ll make you cookies.”

I know a woman who drives her husband around in the Iowa countryside for four hours every Sunday. He loves to visit his old farm, which is a couple hours from where they live now. The people who now live at the farm let him walk around the property. Sometimes he thinks he still farms there. His wife says it’s the only time he seems genuinely happy lately. She’ll do it every week until it no longer brings him pleasure.

There’s also a woman in our community who has been known to “stalk” her husband, who has dementia, when he goes on walks. He enjoys solitary walks, but she worries he’ll get confused and not be able to make it home. She follows about an eighth of a mile behind. If he should turn around, she ducks behind a tree or bush. She told me she occasionally worries some observer will call the police.

I asked this woman how long she and her husband had been married. She surprised me when she told me they were married only five years ago—after he had starting showing dementia symptoms. She said she worried he’d forget her earlier in his disease process since they’d been married a shorter time.

“I’ve been wondering,” she said to me, “Can a person still love you when they don’t know who are you?”

I’ve been asked this question before, and I always answer with a definitive yes.

I once heard a man with dementia tell his wife, “I don’t think I’ve met you before, but you are always so nice to me.”

Maybe there are times when the head doesn’t remember but the heart does.

So this is for all of my dementia spouses…

I want you to know that I appreciate what you are doing day in and day out.

I know you get tired. And I know you get frustrated. But you get out of bed every single day and roll with the crazy life that dementia creates. Sometimes you laugh and sometimes you cry—maybe you’ve done both at the same time. You work really hard to create moments of joy that your spouse may or may not remember, but you think it’s worth it all the same. And you’re right.

Some of you have spouses who are able to thank you. Some of you have spouses who cannot show their gratitude. If your spouse can’t thank you, I want to thank you on their behalf.

Maybe you’ve had to learn new skills. Perhaps your spouse always managed the finances, and now it’s in your lap. Maybe your spouse was the cook, and now you are learning how to throw together crockpot meals and use the George Foreman. Or perhaps you had to take over mowing the grass, managing car repairs, or changing the cat litter. It’s not only that there’s an emotional toll…there’s really just a lot to do. Your load is heavier.

A guy once told me he never knew how much his wife accomplished in a day until she was diagnosed with Alzheimer’s and was unable to do what she had done for the previous thirty years. He told me that picking up the slack was a big challenge for him.

“Dementia doubled my chores,” one woman told me.

Stop. Take a second right now. Pat yourself on the back for the added responsibilities that you’ve mastered.

And—if your spouse isn’t able to buy you a gift this holiday season, do me a favor and buy yourself a little something. If you don’t have the time to go shopping, no worries. I mean, it’s Cyber Monday. They are practically giving stuff away online. And you’re reading this blog, so I know you know how to use the internet. Do it now. (Well, after you’re done reading this.)

If your spouse is in a nursing home or memory care community, stop feeling guilty you aren’t there more. If you raised your voice at your spouse recently because they asked the same question for the millionth time, stop beating yourself up and move on. If you’ve made what you consider to be a poor decision in regard to your spouse’s care, let it go. And if you let your frustration get the best of you (which we all have), take a deep breath. It’s okay.

You didn’t have a perfect marriage before, and you don’t have one now, but you get yourself out of bed each and every morning and continue to do the best you can in circumstances that you would have not chosen.

And that’s enough.

Saying No and Leaving Early in Dementialand (aka I Wish You the Best Possible Holidays)

alzheimer's, caregiver, caregiving, dementia, dementialand, families, nursing home

If you’ve read my blog for a while now, this post might seem somewhat familiar. Every fall, I feel the need to kick off the holidays with a bit of advice for my readers with dementia and for those who love them.

If you live in America, you know that Thanksgiving is approaching. And then Christmas is right on its heels. I know that our belief systems and geographic locations dictate which holidays we celebrate. And I don’t care what holidays you celebrate….Hanukkah, Winter Solstice, Kwanzaa, Boxing Day, Faux Fur Day (which is on December 1 and is seriously a real thing)… I know I’m missing dozens. Don’t hold that against me.

My message is intended for you no matter your religion and cultural affiliation. Just change the customs and rituals. Insert your own. If there’s one thing I know about dementia, it’s that it doesn’t discriminate based on ethnicity or religion (or sexual orientation or political party, for that matter). It’s all about equality here in dementialand.

Here goes:

You do not have to do every single thing you’ve done on every holiday in the past. Yes, you can skip the community tree lighting. No, you don’t have to serve the holiday meal at the Salvation Army just because you’ve done it five consecutive years. Yes, it’s okay to give cash as gifts so you don’t have to brave the madhouse of humanity know as the mall. No, the neighbors won’t judge you if you don’t put up lights this year (and if they do, screw them).

If Grandma seems stressed out by being around the chaos that is the family holiday gathering, it’s okay to take her back to the nursing home earlier than planned. If your mom–who is approaching end-stage dementia–doesn’t have any interest in eating the turkey or ham, it’s fine to let her have a few cookies instead.

Grandpa has always made it a point to go to the kid’s holiday programs at school, but we may have to accept that it’s just too much this year. Or maybe we can take him for the 10 minutes his grandkids perform and then get him the heck out of there before he has what his family refers to as a “meltdown.”

We love our family rituals. And family rituals can be fantastic–but we can’t be so tied to a ritual that we force a person with dementia into a situation that isn’t a good fit.

One of my friends told me that her extended family goes to a holiday parade in Chicago together every year. It’s a long drive and a lot of walking. And—this is a part that many of us, even those without dementia, struggle with–lots of people in close quarters. Her mother, who has younger-onset Alzheimer’s, refused to miss it.

To make a long story short, her mother was exhausted by the time the parade started. The sights and sounds were just….too much. Her exhaustion resulted in frustration. Her frustration resulted in some uncharacteristically mean comments directed toward family members. At one point, she told her grandchildren that they were bad children and they would be getting boxes of rocks for Christmas.

She even picked up a piece of candy that had been thrown in her direction by a parade participant and put it in her mouth….without taking off the wrapper. In retrospect, my friend wonders if they could have found a smaller parade that was closer to home, but they were so tied to their ritual that it never crossed their minds.

Many people with dementia love being around children. However, we have to understand that being around children can be exhausting for all of us –especially those with dementia. The dementia brain struggles in chaotic environments, and I don’t know of many environments more chaotic than holiday gatherings with cousins running around like unruly punks. Oh, add in their new toys, especially those toys that happen to be ridiculously loud. The dementia brain is going to tire quickly. Heck, my brain tires quickly. (Give me a break here. I am a childless gerontologist.)

And then we say the person with dementia is “being difficult”–when in fact we have put them in a difficult situation and they are having a difficult time. It is okay to limit the time someone with dementia spends with children. If you have dementia, it’s fine to say, “I really enjoyed hanging out with the kiddos, but I think it’s time for me to leave.” It’s okay for you to slip into a spare bedroom and take a break.

You don’t have to apologize. You don’t have to feel guilty. You don’t have to explain. You have my permission to remove yourself from a situation before it becomes anxiety-provoking. And you have my permission to preserve your mental and physical energy. The holidays are a marathon, not a sprint.

There’s a simple little trick that works for my husband and me around the holidays–and it also has some usefulness for dementia carers. It’s pretty simple: Always drive separately.

Your sister could pick up you and your spouse, who has Alzheimer’s, and give you a lift to the holiday gathering. It’s nice she offered. You appreciate that she’s thinking of you.

But…consider how long your sister might want to stay. If your spouse starts showing signs of stress, you might want to hightail it out of there. That’s harder if you don’t have your own vehicle. No matter the event, always have an escape route–even if that escape route is an Uber or a Lyft.

There are going to be these people who don’t understand. Maybe they are family. Maybe they are close friends. They are not going to get why you need to leave the party early. They are not going to comprehend why you can’t attend an event that you’ve attended every year for 20 years. They are going to think it’s weird that you are giving out ten dollar bills instead of thoughtful gifts this year. They are going to question why you showed up at Christmas dinner and contributed red Solo cups instead of a gourmet dish. (To be fair, I do the last one and I don’t have dementia, nor am I a caregiver.)

You can explain it to them if you want. If you have a need to sit them down and tell them about the challenges of dementia, go for it. You can show them this blog post if you like. But….don’t expect them to get it.

Sure, it’d be nice if they’d understand. It’d be great if everyone respected your limits and encouraged you to listen to that voice in your head that sometimes chimes in and says, “Too much.”

Even if people are well-meaning, they often don’t understand how tiring it is to have dementia. They don’t understand that holiday rituals practiced for many years just may not be realistic this year.

The good news is that you don’t need their permission to take a break. You don’t need their okay to exit the party or to not show up in the first place. They don’t have to be cool with your holiday plans. This isn’t about them.

So do what you’ve got to do to this holiday season–even if what you’ve got to do is different than what it used to be.

I give you permission to say “No, thank you,” this holiday season. If that doesn’t work, I give you permission to say “Hell no!” I also give you permission to say “Yes,” and then later on say, “Nope, it’s not gonna work.”

And I give you permission to leave the party without saying goodbye to each and every person there. Sometimes it’s just time to go.

So let go of those rituals. Forget those expectations.

You do not have to buy a present for every single person you’ve called a friend since middle school. If you don’t have the time or energy to send out holiday cards, then don’t do it. Maybe Midnight mass just isn’t in the cards this year. By the way, no one ever died from only having one choice of pie at a holiday dinner (unless it’s pumpkin pie, which is disgusting since pumpkin is a decorative item and not a real food–just an opinion).

It’s okay to not put up a Christmas tree. It’s okay to put up a Christmas tree and leave it up until March. Also, I promise your kids and grandkids can grow up to be functional adults if you don’t participate in that weird Elf on the Shelf deal. Oh, I can definitively prove that the world doesn’t end if you don’t have time to wrap gifts and just give people things in plastic Target bags. I don’t think I’ve used wrapping paper since Obama’s first term. Think about all the money I’ve saved to spend on wine.

And always keep in mind that Chinese restaurants are open on Christmas Day. In a jam, you can never go wrong with some takeout moo shu pork and eggrolls. On a side note, I googled which wines pair well with Chinese food. Go with the Riesling.

I said something really dumb a few days ago. It wasn’t the first time and won’t be the last, of course, but I keep thinking about it.

A woman was telling me about her challenges as a caregiver. Her husband, who has frontotemporal dementia, is about to get “evicted” from a nursing home for being “disrespectful toward staff.” (Don’t get me started.) In addition, she’s been diagnosed with lung cancer. After I listened to her talk about how she can’t sleep at night, we wrapped up our conversation.

“Happy holidays,” I said. Yeah. That was stupid.

She laughed. We both realized how idiotic, although sincere, my holiday wishes were. Sure, I wanted her holidays to be happy, but it seemed a little pie-in-the-sky. I tried to recover.

“Well, best possible holidays!” I said.

So that’s it. Best possible holidays to you.

Maybe that means you’re gonna thrive this holiday season. Maybe you’re just gonna survive. But either way….

Best possible holidays to you, my friend.

 

 

 

Dementia and the Gift

alzheimer's, caregiver, caregiving, dementia, dementialand, frontotemporal dementia, lewy body dementia, nursing home

I get a lot of gifts from people with dementia. And I’m not talking about abstract and intangible gifts. I’m talking about actual stuff.

Sometimes they are gifts “stolen” from another resident at a memory care community. Sometimes they are pulled directly from a dirty clothes hamper. Sometimes they are things that aren’t really useful to me–like a used lipstick.

I have been given family heirlooms only to return them to family members at a later date. People have insisted I accept horse figurines, gently used toothbrushes, expensive and inexpensive jewelry, cat beds, and rocks. People color me pictures. Once someone gave me a photo of their grandbaby so I “wouldn’t forget what babies look like since no one has them nowadays.”

My mom worked in activities at a nursing home when I was a kid, and I spent a lot of time running the halls (literally). Many residents kept candy in their rooms to offer to guests. Mostly those butterscotch discs. Sometimes root beer barrels. Often the candy was old–really old. I always took it anyway. I’d put it in my pocket and say I was saving it for later. Spoiler alert: I didn’t always eat the candy.

Once an old guy with dementia gave me his John Deere hat because I said I liked the color green. Later, I gave it to my mom, who put it back in his room. Ironically, those John Deere hats are really in with the hipsters nowadays. Maybe I should have kept it.

I have heard from families who are frustrated that when they give their loved one with dementia a gift they often find it was been re-gifted. Someone I know bought her mother a colorful holiday wreath for her nursing home door and found it hanging on the door of another resident. She thought the other resident might have nabbed it…but realized later that her mother had gleefully presented it to her as a gift.

I was talking recently with a woman with younger-onset Alzheimer’s. She confided in me that the hardest part of having dementia (for her) was the feeling that she was no longer able to give. She hated that she couldn’t contribute to her family and friends the way she used to. She struggled with the idea that she being taken care of and had little to offer those who gave her so much.

As human beings, we want to give. Despite all the frightening and disheartening stuff going on in this world, I believe that most people are good, kind, and have a need to help others. Human beings have a need to make a meaningful difference in the lives of fellow human beings. Dementia can make it harder to meet that need.

To be clear, people with dementia make valuable contributions in this world. On a personal note, my interactions with friends who have dementia are some of the richest and most satisfying interactions I have. When people with dementia say they aren’t making a positive difference, I want to argue with them….but I have to allow them to mourn because they are not able to contribute in the way that they used…and that’s tough.

I know a woman whose family has told her that she won’t be making Thanksgiving dinner for a mega-clan of family and friends this year. In the past, she’s had up to 30 people at her house for the meal. It seems obvious to her family that her dementia has progressed to a point where she’s just not capable of this anymore. She is heartbroken.

Who is she if she can’t feed a crowd for the holidays? What good is a grandma who can’t pull together a Thanksgiving dinner? The ability to give that gift has been taken from her. They’ve told her they will buy the ingredients for her to make the jello salad (if you’re not a Midwesterner, jello salad is marshmallows and random canned fruit suspended in jello–and yes, we call it a salad).

As dementia progresses, people can’t give in the manner that they used to. And that’s hard. When they want to make a difference…when they want to make people smile…they look around for a gift to give.

One man unplugged the alarm clock in his nursing home room and handed it to me. He said, “Here. I know that you really need this.” He was so emphatic that I was pretty sure I did need a used alarm clock.

A woman once insisted I take her walker. I used it to walk out of her room–saying I was so grateful because I had recently hurt my knee (which wasn’t a lie). When she was napping later, a staff member put it beside her bed.

I used to argue when someone with dementia tried to give me a gift.

“Oh, I can’t take that. You need that,” I’d say.

What I’ve learned is that my acceptance of their gift meets a need for them. It meets their need to play the role of giver–a role that dementia can really diminish.

My briefcase is full of pages torn from coloring books. (“How old are your kids?” someone at a conference recently asked me when some fell out as I grabbed my laptop. “I don’t have any,” I said with a smile. I left it at that.)

I have to check my pockets before I put clothes in the washer so I don’t wash those butterscotch discs. Fortunately, it doesn’t ruin your clothes if you do wash them. Tootsie rolls, however, are a different story.

I have a simple rule for those of you who spend time with people who have dementia–Accept the gift. Always accept the gift.

Their need to offer it reminds me that human beings have a need to give that persists even in challenging circumstances, and that makes me think that maybe the world isn’t a horrible, awful place.

 

 

So You Messed Up in Dementialand

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

Caregiving is unpredictable. It’s a different experience for everyone. You have unique challenges and joys. Just like dementia looks different on everyone….caregiving looks different on everyone.

If you’re a caregiver, there’s one thing I can guarantee you share with all other caregivers. And that is the inevitable, undeniable, and incredibly human reality that you (yes, I am talking to you) are going to mess up.

Let’s face it. You have made mistakes in all areas of your life. You’ve messed up in your family and romantic relationships. You’ve messed up at work. You’ve messed up in cooking, driving, managing your finances…you name it. If I haven’t messed up something at least once before 9 am, I’m probably still in bed. And then I guess I did mess something up–because I overslept.

I’ve not saying all of these mistakes have been life-changing disasters. Some of them have been issues that can be resolved in a minutes. Some of them, unfortunately, have been issues that aren’t fixable.

Why would caregiving be any different?

You say something to your loved one with dementia that—you realize later—caused them pain.

You help your loved one take a shower, and they fall because you turned your back for one second.

You think it’s a great idea to take them on a little vacation…until you realize that this vacation has taken them out of their routine and increased their anxiety and confusion.

Maybe you decide to pursue hospice, and you regret that you didn’t do it four months sooner.

Or you respond in a harsh tone because you cannot deal with answering the same question for the billionth time. (If you say you haven’t done this, you have much more patience than the average Joe or Joanne…or you are, more likely, a liar.)

Someone I know once gave her husband the dog’s thyroid medication. She called the pharmacy in a panic. When the pharmacist didn’t return her call, she called her vet, who assured her everything would be okay. (“Call me if he starts barking,” he said.) Her husband was no worse for the wear, but she is still horrified that she could make such a scary mistake.

I used to tell caregivers they’d make all the right decisions. Maybe it was reassuring—but it wasn’t true.

All of the love in the world doesn’t keep you from messing up. Couldn’t you say the same about parenting? Or marriage?

But here’s the important message:

You gotta let it go and move on.

I could tell you not to blame yourself because you’re a human being. I could say you shouldn’t be too hard on yourself because you have a lot of on your plate. As caregivers, we beat ourselves up a lot.

If you don’t think you owe it to yourself to forgive these errors, you owe it to the person with dementia. You see, it takes a lot of energy to beat yourself up. And you don’t have that energy to spare.

I no longer tell caregivers that they will make all the right decisions. I tell them to accept that they will make some wrong ones.

If you’re a caregiver, I hope that your mistakes are small and fixable (and maybe that your loved one with dementia forgets about them). And I hope that you move on quickly because guilt and self-blame are a waste of time.

So…head up, stay strong, let it go, move on.

(I read that on Pinterest.)

Why We Should Keep Talking About Dementia Even if Things Get Weird

alzheimer's, caregiver, caregiving, dementia

At the end of a recent presentation, a guy asked me a question. It was a great question–kind of like a huge softball making its way to the plate so I could hit it out out of the park. (Not that I have any idea what it feel like to hit a softball out of a park. When I play slow pitch I’m just lucky to make contact.)

He asked, “What’s one thing about dementia that you want people to know that they don’t know?”

Maybe I was intimidated by having to narrow my thoughts down to one thing. Maybe I was just not on my game. But my response was not a home run. It wasn’t even a ground rule double.

“It’s just that so many are impacted….” I started. Then I went off on some rambling journey with a bunch of statistics that left my poor audience with glazed eyes and an urge to sneak out the back door. (As a speaker, I can tell when someone is eyeing a door and wondering if emergency alarms will sound if they open it.)

My response was not impactful. It was not engaging. It was just pretty lame. Opportunity blown.

I’ve given it some thought, and I want another chance…except I can’t name one thing. So here are 10 things I want people to know about dementia:

  1. Dementia itself is not a disease. It’s a set of symptoms caused by diseases like Alzheimer’s, Lewy-Body dementia, Huntington’s disease, Korsakoff syndrome, and frontotemporal dementia. (Don’t be offended if I left out your disease–there are dozens). People should not be “diagnosed” with dementia because it is not a diagnosis any more than a cough is a diagnosis.
  2. Memory loss is a part of dementia, but it is only part of a constellation of symptoms including (but not limited to) impaired judgement, speech problems, sleep issues, personality changes, paranoia, hallucinations, perceptual issues, irritability, and anxiousness. Memory loss is usually one of the first symptoms noticed if the dementia is caused by Alzheimer’s. However, dementia is much bigger than just memory loss.
  3. Some people who have dementia know they have dementia. Some people who have dementia do not know they have dementia. Many people know something just isn’t quite right but don’t have the cognitive ability and insight to be able to understand their condition.
  4. These diseases that causes dementia….they also cause death. The general public has not yet figured out that dementia is progressive and fatal. And it doesn’t only kill old people. People die from dementia in their 40s and 50s.
  5. Most people with dementia live in the community–sometimes alone, sometimes with their spouses, sometimes with their families. We tend to think most people with dementia live in nursing homes, but they tend to move to nursing homes only at the end of a marathon disease process.
  6. Having dementia is hard work. The dementia brain has to work incredibly hard to to process information and complete what we consider to be routine tasks. Sometimes we think people with dementia just aren’t trying…or that they’ve given up. Nothing could be further from the truth.
  7. When someone with dementia is aggressive or cruel, you can make the assumption this behavior is a result of fear. It is terrifying to live in a world that doesn’t make sense.
  8. Urinary tract infections are common among those with dementia. If you notice dramatic behavioral changes overnight, check the urine. It is not unusual for someone with dementia to die from a series of events that begins with a urinary tract infection.
  9. Drugs cannot stop or slow the progress of dementia. We do have medications that may help with the symptoms, but they do not change the underlying disease process.
  10. Yes, it’s okay if you’re not completely honest with people who have dementia. We call this therapeutic fibbing, and seriously–IT’S FINE! When Grandma asks where Grandpa (who has been deceased for decades) is, it is okay to say that he’s work, Wal-Mart, or bowling with the guys–wherever he liked to spend his time while he was alive.

If you are one of my regular readers, you are likely pretty disappointed by this post. I mean, you know all this stuff. You probably know it better than I do.

Here is my challenge for you….whether you are living with dementia, a family member or friend of someone living with dementia, or a professional who works in the field.

Talk about dementia. Talk about it without embarrassment or shame. If it makes other people uncomfortable, keep talking. The only way we destroy the stigma that still exists is to push right through it.

Part of my job is to educate people about dementia–but people who are impacted by dementia are much better educators than I am. The conversations you have in your daily life with friends, acquaintances, and coworkers can be more impactful than any formal presentation I am invited to do. Many of you aren’t ready to give a speech to a hundred people, but explaining to a waiter why it’s important to seat your mom with Alzheimer’s in a quieter area of the restaurant—that’s education. Explaining to a hairstylist that Grandma is sometimes confused by mirrors, and it’s best to position her so she can’t see herself in the mirror–that’s education. And that’s what we need.

To my friends living with dementia….the next time someone says, “How are you today?”, remember that you don’t have to say, “Fine.” You are allowed to say, “I’ve had a rough few days.” And you are allowed to explain why. If it’s an awkward conversation, that’s okay. Embrace that awkwardness. Don’t be afraid that your health issues will make someone uncomfortable. Keep talking.

To my friends who are care partners…the next time someone says “How are you today?”, remember that you don’t have to say, “I’m doing okay” if you’re not. You are allowed to tell them that caring for someone with dementia is challenging. You are allowed to tell them that you haven’t slept much lately. They might be taken aback–because no one expects a truthful answer to “How are you today?”–but throw it out there anyway.

Do I promise you are going to get helpful responses? Nope. Do I assure you that your friends and coworkers will impress you with their caring and thoughtful reactions? Not at all. I challenge you to keep talking anyway. It’s only by making dementia a topic of conversation that we put ourselves in a position to educate the general public.

And I need your help with that.

 

 

 

 

Being Right, Being Wrong, and Doing Your Best in Dementialand

alzheimer's, caregiver, caregiving, dementia, pwd

Let me tell you a story. This story does not have prescribed lesson. And I’m not going to tell you who is right and who is wrong—because I really don’t know.

Melissa (not her real name) was a college student in our program several years ago. She was doing a service-learning project at a local memory care community. One of her tasks, as assigned by staff, was to accompany Edie (spoiler alert: also not her real name) to the beauty shop.

Edie was a woman with Alzheimer’s disease. I did not realize it at the time, but her deceased husband had been a wealthy entrepreneur in our community. Throughout her life, she hung out with movers and shakers in town. She and her husband were generous with both their time and money. They were respected and well-connected.

All I knew at the time was that Edie hated going to the beauty shop that was part of her memory care community.

She didn’t understand why this woman she didn’t recognize was messing with her head. She didn’t get why someone was holding a pair scissors (which she perceived as knives) to her head. And she repeatedly told the woman to “F*** off and put down those knives!”

The hairstylist wasn’t offended. Working in this environment meant learning to roll with the punches. The bigger issue was that, despite the hairstylist’s best intentions, Edie would get more and more agitated the longer she sat in the chair. Sometimes she’d curse. Sometimes she’d cry. Occasionally, she would even shake.

And that’s where Melissa came in. She would be responsible for comforting Edie and “managing” her visits to the stylist. It wasn’t just a monthly cut. It was a visit every Friday–sometimes color, sometimes a perm, sometimes a trim. And her family also had her nails done regularly, which was almost as anxiety-provoking. Melissa was a reassuring (if not familiar) face in the midst of a terrifying experience. Even though Edie didn’t seem to remember Melissa, they somehow connected.

After a couple months of this, Melissa showed up in my office. I’ve had some angry students in my office over the past 10 years, but I think she wins the prize for the angriest. Melissa couldn’t understand why Edie’s family was insisting that she spend so much time at the salon when the salon was “hell” for Edie.

I didn’t know either. And, at the time, I was 100% Team Melissa. I could see no excuse for putting Edie through such trauma.

I encouraged Melissa to see if she might be able to talk to Edie’s family. I assumed that if the family understood the extent of how stressed Edie was by getting her hair and nails done, they would forget the whole thing–or at least minimize her visits. Maybe my suggestion that Melissa talk to Edie’s family was a good one…maybe it wasn’t.

Melissa took my advice. She called Edie’s daughter, who explained–not so calmly–that she had promised her mother that she would make sure she would always be “done up” and “looking like herself” for visitors. The daughter also told Melissa that Edie had spent a lot of time maintaining her looks. Her mantra had been “look good, feel good.” Also, she pointed out, Edie may not like the visits to the salon, but she’d be horrified if she looked in the mirror and didn’t look like Edie. That, the daughter said, would throw her into a panic.

In short, Edie’s daughter was not thrilled a college student had called her out on her decision-making.

“You don’t know what this is like, so keep your thoughts to yourself,” the daughter said.

Melissa responded, “And you don’t know what it’s like for her at the salon.”

The daughter made a point to Melissa that she was keeping a promise to her mother, and that this promise was based on her mother’s worry of looking like a “raggedy old woman” in a nursing home. She would never, never look like a “raggedy old woman.”

The conversation escalated into a full-fledged argument. Melissa then left a letter for the daughter in Edie’s room. I don’t know what the letter said, but it did nothing to improve their relations.

Melissa would later tell me that she had an anxiety disorder, and she knew how awful her anxiety made her feel. If Edie felt an ounce of that, she told me, then the family needed to stop the weekly salon visits immediately. I have no doubt that Melissa was acting out of genuine concern.

I wasn’t sure if I should insert myself into the situation. After all, I was Melissa’s supervisor for her project at the memory care community. In the end, I let it play out without my intervention. If I had it to do over again, I might have made a different choice. I could’ve made things better. Of course, there’s a good chance I could’ve made things worse. I mean, I can always make a situation worse.

At the request of Edie’s family, Melissa was told she was no longer going to be attending salon visits with Edie. Devastated at the news, Melissa worried about the anxiety Edie would be experiencing while getting her hair and nails done–without her.

A few months later, I wrote Melissa a letter of recommendation for a graduate program. It was a positive letter. I described her as caring and willing to be a strong advocate for vulnerable populations….or something vague like that. What I should have said is that she went to bat for someone who couldn’t go to bat for herself. Was she right to be so judgmental of Edie’s family? Did she handle it in the best way? I don’t know. However, I respect that she was willing to stand up when she felt someone was being mistreated. We need more people like Melissa.

As for Edie’s daughter…I respect her as well. She was keeping a promise to her mother, and I can’t judge her for that. Her commitment to reflecting the priorities her mother showed throughout her life was admirable.

I tend to think in black and white. I want someone to be right, and someone to be wrong. That makes the world simpler.

Yet…sometimes nobody’s really wrong. Sometimes we are all just people doing the best we can.

Melissa was doing the best that she could for Edie. Edie’s daughter was doing the best that she could for Edie.

It wasn’t long until Edie passed away. She fell at the memory care community and never really recovered. I saw her obituary in the paper. The photo looked relatively recent, and she was a beautiful woman. I remember wondering if she wore sunscreen daily, and I hoped that I would look as good when I was in my 80s.

I hadn’t talked to Melissa in a while, but she emailed me. She wanted to me know if she should go to Edie’s funeral. She really wanted to…but she just wasn’t sure if she should.

I told her no. I told her not to go to the funeral. I thought seeing Melissa at the funeral might put the family in an uncomfortable situation. I don’t know if I was right or wrong, but I was doing the best I could for the family–and for Melissa.

This was about eight years ago. I’ve thought a lot about my role in the conflict between two women who were doing the best that they could. Maybe I could have done…differently.

But I know Melissa and Edie’s daughter were doing their best, and I have to understand that I was doing my best as well.

Sometimes everyone is doing their best, but things don’t turn out the best.

 

 

 

 

Dementia and the Wedding

alzheimer's, caregiver, caregiving, dementia, dementialand, nursing home

Your cousin is getting married. Grandma loves weddings. In fact, she used to do all her friends’ hair when they would get married. She’s always adored family gatherings—the bigger, the better.

You plan to go to the nursing home, help her get dressed, assist her with makeup and hair, drive her three hours to the church, hang out with her at the reception, and stay with her at a hotel the evening after the event. You’ll drive home the next day after a gift-opening brunch.

That’s been the plan for months.

But Grandma’s Alzheimer’s seems to have progressed. And this just seems like…a lot.

You think about the time a few weeks ago that you took her out for pizza at her favorite Italian place. She was anxious the entire time. She asked where he husband was—although he’s been dead for a decade. She got up to use the restroom. Ten minutes later you realized she had gotten confused and left the building. When the food finally came, you decided to just have them box it up so you could take it back to the nursing home. Epic fail.

You remember Christmas. You picked her up at the nursing home at 8 am. She was looking perky in her Christmas sweater, but the information about the plans for the day didn’t seem to stick. She kept asking, “Don’t you need to get back to the office, honey? You’re gonna get yourself fired.”

The weather was by no means a blizzard—but a light dusting of snow threw Grandma for a loop. “I sure hope we don’t have to sleep in this car,” she kept saying worriedly on the way to the family Christmas party. “Do we have sleeping bags in the bag? Do you have Triple A, honey?”

Once there, the commotion of Christmas movies, kids playing, and presents being ripped open was just…too much. The look on her face was one of panic, but when you suggested taking her back to the nursing home, your family said she was “fine.” You felt they were more concerned about the guilt they would feel if Grandma wasn’t there for Christmas dinner than the well-being of Grandma, but you kept your mouth shut and Grandma stuck it out for dinner. She didn’t eat anything because she said her stomach was “too excited.” As someone who doesn’t eat when they feel anxious, you sympathized with Grandma as she stared warily at her turkey.

The more you think about it, the more you realize that taking Grandma to this wedding might be…too much. You mention this to a few other family members. They are appalled. They cannot believe that you would be so selfish. How could you consider leaving Grandma at the nursing home during such a special family event? Don’t you know how much she enjoys celebrating the milestones of her grandchildren? How could you do this to her? And your sister actually made a comment about how you were putting your own enjoyment of the wedding over the opportunity to allow Grandma to be a part of a family event. (Of course, your sister had not volunteered to help Grandma attend the wedding…she was a bridesmaid so that wasn’t a possibility.)

You mention that you brought her to the bridal shower—and she seemed to enjoy that for a while. Then she got a bit overwhelmed and said to her sister-in-law, “I apologize for crashing this party. I’m just sick that I don’t seem to know anyone here.” When her sister-in-law explained she knew everyone at the party, she said, “I think you must have be mixed up with another woman. I need to find a bus to take me home.” As the shower wraps up, you find her crying in the bathroom because she doesn’t know how to call a taxi.

Nonetheless, your family says that’s she Grandma, after all, and Grandma needs to be at this wedding. You stop arguing and agree that she will be at the wedding.

When you pick her up at the nursing home, the staff already has her in her best dress. You take a few minutes to add some makeup and curl her hair. You smile because she looks beautiful. She looks in the mirror at herself and said, “That woman is looking sharp.” You aren’t sure if she is referring to herself in the third person or doesn’t recognize herself. You’re not sure you want to know.

When she gets a bit disoriented, you keep reminding her where you are headed. You finally decide to stop telling her you’re going to a wedding because you realize this sends her into a state of panic—since she doesn’t have a gift to give the bride and groom. (You should’ve known this would bother her and kick yourself for not wrapping up something for her to give the couple.) Arriving at the wedding just before it starts, you sit with her in the front of the church. She keeps saying she has a great seat for not even having a ticket. It becomes apparent that most of the people in the church, although they are close friends and family, are not familiar to Grandma on this particular day.

When your cousin walks down the aisle in her exquisite wedding dress, Grandma turns to you and says in a loud voice, “She’s sooo beautiful. I wonder who she is.” A distant relative sitting a few rows behind you chuckles uncomfortably.

The wedding goes okay…Grandma seems to think she is at a theatrical performance rather than a wedding, but she enjoys commenting on the dresses in what could be described as a loud whisper. When the officiant asks if anyone knows of a reason why the couple should not be united in marriage, Grandma shouts, “No! They should get married!” Some people laugh; others looks horrified.

Later your mother will make a comment about how you could have done a better job “babysitting” Grandma during the ceremony. You find the term “babysitting” insulting to both you and Grandma—and to people with dementia, in general. You just nod and say you’ll do better next time. It’s an easy promise to make because you don’t anticipate that there will be a next time.

When everyone is mingling at the church after the ceremony, Grandma is confused but pleasant. She keeps telling relatives, “I don’t think we’ve met, but you just seem so nice.” You get her back in the car and are ready to drive to the hotel where the reception will be held.

Grandma says, “That was a fun show, but I’ll be glad to get home.” You tell her that you aren’t headed home yet. Rather, you are going to a reception to celebrate the marriage. She gets quiet for a few moments, and then she begins to cry. You ask her why she’s crying, but she’s not able to tell you.

“Grandma,” you ask, “Do you just want to be done for the day?” She nods. You start the three hour drive back to the nursing home.

You call a few family members. They are upset with you. They think she would have been fine when she arrived at the reception. They say that Grandma would never want to miss any part of the wedding of any of her grandkids, no matter the circumstances. They point out that there’s still time to turn the car around and take her to the reception. You don’t turn the car around.

In the passenger seat, Grandma sits quietly. Occasional tears roll down her cheeks. You want to know why, but asking her to explain her sadness only seems to compound her frustration. You turn on a country radio station because you know it’s her favorite. You count the miles until you are back at the nursing home. You keep thinking about how you’re not going to get your money back on that hotel room. (And despite a few phone calls, you don’t. Apparently hotel staff isn’t sympathetic to changes in plans due to dementia.)

When you drop Grandma off at the nursing home, she says, “This was quite a day. I hope the tickets to that show weren’t too expensive. Why don’t you take some money off my dresser, honey?” You pretend to take a few coins. You feel terrible about how you can’t wait to leave the nursing home and drive home in silence. No country music (which you hate). No random sobs from Grandma (which make you feel like crap). You feel an obligation to go to the gift-opening brunch in the morning, but you won’t. You’re tired, and you’re pretty annoyed with your family.

As you leave the nursing home, you see your family texted photos of the reception. Most of them have a caption that reads “Miss you and Grandma!” or something similar. Your least favorite is a photo of the entire family (excluding you and Grandma) with a comment from your sister that says “Wish you had decided to bring Grandma so EVERYONE could be here!” You swear you are going to give your sister the silent treatment over this, but you don’t. You hate yourself for not being more assertive.

At the end of the day, you feel guilt. Guilt for not coming through for your family. They wanted Grandma to be a part of all the wedding activities, but you couldn’t make it happen. A bigger sense of guilt comes from knowing that you put Grandma in a position that was anxiety-inducing for her.

Seeing her tears roll down her cheeks on the way home made you wonder if you should’ve listened to your gut and realized taking on the wedding was just…too much. You don’t know if you made the right call. She had some moments of joy, even if she didn’t recognize the bride as her own granddaughter. Maybe taking her to the wedding was the right thing to do. Then you think of the tears rolling down her cheeks on the ride home…It’s going to take a while to get that image out of your head.

You don’t know if you did the right thing. You think your family is still mad at you. And, really, you are mad at you. You are mad at you for not listening to you. You knew this plan was unrealistic. You didn’t have the nerve to tell your family that you spend the most time with Grandma and know her the best. You didn’t have the nerve to tell them that you should get to make the call on whether she was up for the wedding.

But you go to visit Grandma tomorrow, and she’s not mad at you. She’s back to her “normal.” You have the same conversation about the weather and your cat that you have most days.

When you mention going to the wedding yesterday, she seems to have no recollection of it. You ask about the show where they women wore the pretty dresses. She says, with a smile, that she hasn’t been to a show in decades.

When you leave, she tells you she loves you. You aren’t quite sure she knows who you are, but you never doubt that she knows exactly what she means when she says she loves you.

(Thank you to the woman who shared this story with me and allowed me to take my own liberties in creating this piece. She didn’t want her name used because she worries her family members would be upset if they came across the story.)

 

 

Positive Things in Dementialand

alzheimer's, dementia, dementialand, nursing home

Dear Friends,

I don’t know how you’re feeling lately, but the world has me a bit deflated. Hurricanes and other natural disasters. Mass shootings. Arguments about the national anthem. I could go on, but unless you live under a rock, you can probably complete your own list.

So here I am…searching for a way to be positive. Maybe you are in the same boat.

Today I’m all about the positive. Dementia itself certainly isn’t a blessing, but my journey in this field has brought me many heartfelt moments, much joy, and a lot of laughter. I need to take a moment to focus on those blessings.

Let me start here.

Last Saturday I was the emcee for our local Walk to End Alzheimer’s. Beautiful day. Great turnout. Lots of money raised. To me, one of the most impactful parts of the morning was seeing the number of people with Alzheimer’s who came out to be a part of the event. It’s not always easy for people with dementia to deal with the crowds at a walk with over 600 participants.

They do it anyway.

A gentleman with Alzheimer’s even took the mic to talk about his experiences. I struggled a bit with the echo of speaking from a microphone on the pitcher’s mound of a minor league ballpark. This guy put me to shame. His heartfelt speech left me in awe.

I’m extremely grateful for his willingness to speak. People with dementia and their families have been silenced too long. I am seeing a huge increase in the number of people who have dementia and are willing to step forward and participate in advocacy. Sure, it’d be easier to stay home and live life, but more people are choosing to put themselves out there after diagnosis and not be silenced. They do this not because their advocacy work will result in a cure that will benefit them. They know it won’t. They challenge themselves to make a difference for future generations.

To those of you who have dementia and tell others about your experiences (whether it’s on Facebook, through a blog, at a fundraising or legislative event, or sitting with friends at a coffee shop), you are awesome. Thank you for what you have taught me. I understand that I don’t know what you’re going through. Keep telling me. I’ll never fully get it—unless I have dementia in my future, but learning about your experiences makes me a more effective professional…and a better person.

Until we find a cure or prevention method, I will brag about some of the college students in our gerontology program who want to make a difference in the lives of those with dementia. Last week my online students had to watch a documentary that focused on elder abuse. I received an email at 11:00 pm last Friday night from a student who apologized for emailing me so late but really wanted me to know how disgusted she was by the elder abuse documented in the film. She said she wasn’t sure if she was going to be able to sleep because of the images that she couldn’t get out of her head. And she thanked me for exposing her to this social injustice. The documentary had reinforced that she was headed into the right field. (FYI–If you are a college student who wants to make a professor’s Friday night, thank them for giving you an assignment.)

If you worry about this terrible self-absorbed Millennials generation and fear for our future, stop. Sure, some young people have misguided priorities and don’t care about anyone except themselves. This is not unique to Millennials. (Haven’t we always felt like the current generation of 18-24 years olds was going to ruin the world—no matter what year it was?) Please know that I have college students who care about older adults and want to spend their careers making a meaningful difference in the field of gerontology.

One of our gerontology majors is currently living at a local assisted living facility as part of a Students in Residence program. He adores the residents, and they adore him. I wish you could see how this student lights up when he talks about spending time with his neighbors at the assisting living. He sees living there as a privilege, and he’s found the sense of purpose in life that he’s been missing. Forget the generation gap. We’re all just people. Some of us have just been here longer.

One of the greatest sources of encouragement I have in my life is individuals living with dementia. I know that dementia can make people disagreeable and even aggressive, but the majority of my interaction with people who have dementia is overwhelmingly positive. To be fair, I’m not the person who must insist individuals take a bath when they don’t want to and take medication they think they don’t need. When I spend time with people, the purpose is to spend time with people.

There’s something refreshing about visiting a group of people at an assisted living, nursing home, memory care community, or adult day center—where divisions of social class tend to disappear, no one cares who much money you make, and a retired janitor is just as respected as a retired cardiologist. And all that stuff I watch on the news that makes me fear for the future of our country? I leave it at the door when I visit my friends with dementia. (It’s better than hot yoga—where my mind wanders to a Facebook argument about politics that I am tempted to enter as I contort awkwardly into pigeon pose.)

In fact, I was recently at a nursing home where two women with Alzheimer’s sat by the nurses’ station holding hands. An employee explained that one was a mom of six with a grade school education and the other was a never married lawyer who broke gender barriers by being the first female attorney in her area. Day in and day out, they sat together holding hands and exchanging smiles. They never talked to each other (or to anyone else, for that matter), but were best friends nonetheless. I wondered if they would’ve been friends 40 years ago. They had little in common. Somehow, at this point in life, they brought each other comfort. I’m not sure I know of a more genuine friendship. Life has this funny way of bringing people together.

People with dementia tell me that I’m pretty, that I have a nice smile, and that they like my haircut. If I wear heels, I can be sure somebody is going to comment on my fancy shoes. A while back, a woman living at a memory care community literally chased me down the hall yelling, “You’re so good at your job, honey!” It took her comment to heart, even though I know she had no idea what I did for a living. I’m not discriminating about accepting compliments. In fact, I went back to the office with a little extra swagger.

They don’t care if there are three baskets of laundry in my laundry room that I haven’t had time to put away (or maybe I have had time to put them away but am just lazy). They don’t ask about that report at work that’s due in a week that I haven’t started yet. People seem to think I’m some kind of saint for spending time with people who have dementia. Au contraire. I feel like I’m tricking the world…my friends with dementia are good to me.

Every once in a while there is a comment that’s inappropriate, but that’s a rarity. A while back someone mentioned that I had gained weight. I wasn’t offended…it was a true statement delivered purely as an observation with no judgment attached. I was actually rather impressed a guy who couldn’t remember his wife’s name remembered me well enough to identify I was carrying an extra ten pounds. Good for him.

I turn 40 this week. To be clear, this is not one of the reasons I’m struggling to remain positive lately. I’m fortunate to be healthy and live an imperfect but good life. Complaining about turning 40 would be disrespectful to all the people I’ve known who never made it to 40. Last week I walked into an adult day center that I visit and found that they had made me an entire stack of homemade birthday cards. Is there anything better than a homemade card? The only problem is that there isn’t room for all of the cards of my fridge.

Finally, I am grateful for those of you who regularly read my blog. There is something that is still a bit scary about putting myself out there. Are people going to think this idea is stupid? What if they think I’m trying too hard to be funny? Worse yet, what if I accidentally say something that is misunderstood and offends my readers? I’m less confident than I sometimes seem. Thank you to those who subscribe and reach out to me with positive comments. I’d like to say I’m not dependent on the approval of others, but I would never have kept writing if it weren’t for you.

If you’ve read to this point, I thank for indulging me and should let you get on with your day. I’ve realized this blog post wasn’t really for you. It was for me. And I feel a little better.

As my mom once commented, “This world is messed up. But I’m happy to be here.”

I’m ready to ring in my 40’s.

XOXOXO,

Elaine