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

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)

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

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

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

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

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

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.)



Nursing Homes and Guilt Traps in Dementialand

If your loved one is living in a nursing home and this makes you feel like an awful person, STOP. Just stop. You are not an awful person. You are a human being who is doing the best that they can.

Let’s face it. We don’t know many people who say, “I hope someday I get to live in a nursing home.” Sure, some nursing homes are better than others. Yet, even the best nursing homes are not home—even if we allow people to move in their own furniture and plaster family pictures everywhere. Bringing a recliner from home doesn’t make a place home.

If you’ve heard someone say, “I could never place my loved one in a nursing home,” and it broke your heart a little bit when you pictured your dad in his nursing home room….please know that this person has not experienced what you have. They’ve never been at a hospital when a social worker told them that their mother absolutely, positively could not go back home but needed to be out of the hospital within 24 hours. They’ve never had to have a talk with their dad about how the money the family had pooled for in-home care was depleted, and there was no way for him to continue living in his own home. They have never been in a position where a nursing home is their best—although not a great—option.

In a perfect world, nursing homes would be unnecessary. We would all live healthy, independent lives until we dropped dead suddenly at the gym at the age of 95. We’d wave goodbye to fellow gym rats as we fell off the treadmill, and that’d be that. I’d love for that to be my farewell to the world. My goal is to die very old and very suddenly—and to inconvenience no one in the process. As a gerontologist, I’m smart enough to know that’s unlikely.

Medical technology can cure us of ailments that used to kill us. We survive acute illnesses but must live with chronic ones. And people, because of this annoying issue of having to earn a living, can’t always quit their jobs to provide 24-7 care to Grandma, Grandpa, Mom, or Dad. (And, to be honest, not everyone is physically and emotionally capable of being a full-time in-home caregiver.)

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

I can’t promise him I will never get in a car accident. I can’t promise him I’ll never lose my job. And I can’t promise him that he will never live in a nursing home.

There are things in life that are out of our control.

So we sometimes must consider a nursing home. Not because we love the idea—but because this is reality and we have limited options. Few of us have the money to pay for round-the-clock home care. And our homes often aren’t equipped to provide the type of environment to keep an individual with Alzheimer’s or related dementia safe. So we check out nursing homes.

And we get a sick feeling in our stomach when we see the people who live there. They are sitting in wheelchairs by the nurses’ station. They are waiting…but for what? For dinner? For bingo? For death? Some of the staff members are smiley, pleasant, and kind. Others seem to hate their jobs. Most are rushing around without time to chat. We identify what we consider to be the best nursing home in our desired area. Maybe it has a bed available; maybe it doesn’t. And that’s the sometimes ugly, often painful process.

We move our loved one with dementia into the nursing home. Sometimes they are aware of where they are and exactly what’s happening…sometimes they aren’t. Maybe they are pleasantly confused; maybe they are terrified. Either way, we feel like the most disgusting scum on the face of the earth.

And what other people say doesn’t help. Maybe someone in your support group says something like, “I’ll never put Harold in a place like that after what a great husband he’s been.” (In fact, this is a direct quote from a support group I once visited—except his name wasn’t Harold.) Maybe if Harold had been a jackass of a husband she’d already have placed him in a nursing home?

Perhaps someone in your own family makes a backhanded comment about how you didn’t invite Mom to live in your basement bedroom. What they don’t understand is that you’d be terrified she’d fall down the steps to the basement and you can’t quit your job—and honestly don’t want to—to be home with her all day. Maybe they don’t understand that her disease will leave her unable to bathe herself and use the toilet on her own. Your own physical health makes you incapable of taking on those challenges. And you didn’t see a line of people volunteering to let her live in their spare bedroom.

Maybe your siblings weren’t anywhere to be found during this process. Maybe they weren’t willing to be involved in making a decision but showed up just in the time to tell you that you made the wrong one. Perhaps they visited Dad once in the last year and he really rose to the occasion. He had the energy of a teenager and mental sharpness he hasn’t possessed in five years…for that one day. (Yeah, that happens a lot when you’re trying to convince someone that your loved one is struggling—just like when your car doesn’t make that clunking noise when you take it to the mechanic.)

Now your siblings can’t figure out why you have turned into such a villain and are insisting on imprisoning your dad in a nursing home. It wouldn’t be so awful that they thought you were a villain if there weren’t this voice in the back of your head echoing the sentiment each time you visit the nursing home.

So stop. Just stop. You aren’t a villain. You aren’t a bad person. You are just a person—doing the best you can under circumstances that aren’t great. And you’re not alone.

Sometimes a nursing home really is the best option. It doesn’t mean we like the idea. It doesn’t mean we’re abandoning our loved one. It means that we had to make a hard decision.

And sometimes the best of our limited options isn’t great.

When You Are Accused of Being a Diva in Dementialand

Today is my third (of a still undetermined number) of Q & A’s in Dementialand. Today’s question is from an individual who has been diagnosed with Frontotemporal Dementia.

Dx bvFTD in 2007 (right after I did a kidney donation to a guy in Los Angeles, so it was my last legally sane act…I am so damned blessed).

I’ve been trying to find some information about sensory overload/flooding in FTD but have only found it on sites for autism and TBI. My family, in which there is no discernment between mental illness and organic disease, doesn’t actually believe in FTD and, therefore, I don’t have it, I’m just a diva. I cannot be with them or anyone else for any reason because the effects on my ‘self’ are devastating and sometimes takes days to recover. I didn’t even go to my dad’s funeral. I cannot tolerate someone else’s noise or loud talking; if a child cries I go into a rage. A kid at a museum display knocked into me to get in front and I pushed him right back and told him to STOP. The mother was livid and threatened me; I just looked her in the eye and told her to teach her damn kid about personal space.

All of the above are normal symptoms, I guess, but for the next time I’m told “Why won’t you come? It’s just the family” an article based on science would go a long way in an attempt to explain. I can no longer explain anything anymore (my caregiver is writing this for me based on my babblings).
Thanks so much for any information you can provide.


Dear D,

Let me start with this…I did a series of posts on dementia and the senses. Here you go:

Sight: What You See in Dementialand

Hearing: What You Hear in Dementialand

Taste: What You Taste in Dementialand

Touch: What You Touch in Dementialand

Smell: What You Smell in Dementialand

You can email these to your friends and family.  You can send them text links. You can print them out and mail them. You can even read them aloud or deliver them on a silver platter while wearing a tuxedo or ballgown. If I’m being honest, my friend, I don’t think this is going to make a bit of difference.

You see, these people have not yet been responsive to your diagnosis and the changes occurring in your life. They could have googled to learn more about Frontotemporal Dementia. They could have asked you or your caregiver questions. They could have shown an interest in learning how to support you. And they haven’t.

I wish I could tell you the words to say when they are disrespectful and doubtful of your diagnosis to make them understand. I regret to tell you that these words don’t exist.

You are not a diva. You have a disease. It is a real disease; you can “see” the disease at autopsy–and many times on various scans during life. And while most people associate dementia with memory loss, it’s about total brain failure. And sensory overload is a large part of this. In fact, I believe the anxiety caused by sensory overload is one of the least talked about–but most debilitating–aspects of various types of dementia.

The dementia brain works very hard to interpret its surroundings. When it gets tired (which doesn’t take long), the individual with dementia is no longer able to control their emotions and impulses. At this point, the person who has dementia may become irritable and difficult to be around. Or they may shut down completely. We sometimes say they are giving us a hard time, but they are really having a hard time.

You can tell your loved ones this, but I am not convinced it’s going to make a bit of difference. In fact, explaining the symptoms of a disease that they believe doesn’t exist in the first place probably won’t get you too far.

You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.

So why can’t you come when it’s just family? Because you’re not feeling up to it. Because you’re feeling overwhelmed. Because you need a break. Because spending your precious mental energy on being around people who don’t make an effort to understand you just isn’t worth it. I don’t care what you tell them. There’s never going to an explanation that’s good enough–so tell them what you want. And leave it at that.

You have a reason (and a valid one) for not attending your father’s funeral. If people ask, explain it once. If they don’t get it, stop. Just stop explaining yourself. It’s not worth your time, and it’s not worth your limited energy. Walk away, figuratively and literally, from people who question whether you really have a disease. In the best of circumstances, arguing with family is energy-zapping and frustrating as heck. To you, it’s positively toxic.

You ain’t got time for this.


Why Does My Mom Hum in Dementialand?

This morning I present to you the second in my series of an as-of-yet undetermined number of Q & As. Today’s question is to the point:

Why does my mom hum?

I’m not much of a musician. In fact, I lipsynced my way through middle school chorus because when I actually sang on the first day the director said, “Someone over there in the front sounds really off.” After deducing that someone was me, I became skilled at looking like I was singing when I actually was not. I was so skilled that the next year I won third place in a lipsync contest at a school fundraiser. If I remember correctly, I got a gift certificate to Pizza Hut.

When I was in high school, I joined in singing the national anthem at an event. Apparently I was so bad that someone thought I was mocking America and being disrespectful to the flag. Now I stand proudly with my hand across my heart–and my lips tightly shut. It’s my gift to America.

That being said, I love music. It’s just that I’m more of a connoisseur than a performer. The perfect song at the perfect time can change my day for the better. I’ve spent hours creating the ideal playlist for a party to give it the right “vibe.” And sometimes a song comes on my Pandora playlist that reminds me a of a moment twenty years ago that makes me smile. Music can be a powerful ally in changing your mood.

My work with those who have dementia has only reinforced my belief in the power of music. While the impact of music might seem like magic, it’s based in science. You see, rhythm comes from a part of the brain that isn’t generally affected by dementia until late in the disease process. When language is gone…when logical reasoning is gone…when motor control is gone…when memory is gone…song and prayer often remain present because they are based in rhythm. If you’re interested in seeing the impact of music on those with dementia, do yourself a favor and watch the documentary, Alive Inside.

Call it a miracle or a scientific fact. Either way, it’s a gift in the midst of what can be a cruel disease process. Dementia can be pretty stingy with presents. When you get one, accept it.

So why does your mom hum? Your mom hums because she may not be able to find the words to express herself. She may feel a frustrating inability to control the world around her. Yet her brain can still identify and express rhythm.

It’s what she’s got left.

We want to focus on what people who have dementia have left rather than what they have lost. If your mom’s got rhythm (which is common), use it. Make music a part of her everyday life. If you want her to walk, turn on a tune and make it feel like a dance. Rhythm might be your connection to her after other connections have failed. Use it.

If you’re unsure how to use music as a tool for those with dementia, check out this video by occupational therapist, Teepa Snow:

And while you’re at it, check out some of the other videos on the site.

P.S. I’ve written about music and dementia at length before. If you’re interested, check it out: