Many people tell me they are dreading the day that their loved one with dementia no longer remembers them.

We think of that as one of the cruelest moments of the disease process.

A husband no longer knows his wife.

A mother no longer knows her daughter.

But as dementia progresses, there typically isn’t that one moment.

Maybe someone knows your name but doesn’t seem to know that you’re their wife.

Maybe someone seems to know that you’re their husband but doesn’t know your name. Or calls you by another name.

Maybe someone knows you’re their daughter but calls you by the name of their sister. Or the name of your sister.

Maybe someone doesn’t know who you are to them or your name but their face lights up when you walk in the room.

I recently overheard a conversation between some of our support group members. Many of them said they didn’t know if their partner knew who they were.

This deal of someone knowing or not knowing who you are….it’s not that simple.

A woman once told me of how she feared her mother with Alzheimer’s would forget her. Her mother became more confused and she knew that day was coming.

She would walk into the memory care community to see her mother. Her mother would look up from the TV and give her a questioning look.

“I’m sorry,” her mother would say shamefully, “I think I should know you but I don’t.”

The daughter would introduce herself and the mother would continue to sadly apologize.

One day the daughter walked in and her mother smiled at her and said, “Well, hi there!”

And the daughter realized that not only did the mother not know who she was….she didn’t know she should know who she was.

There was no more shamefulness. There were no more sad apologies.

Her mother just thought a new friend was visiting.

The moment that she feared wasn’t the worst moment of the disease process.

It turned out to be okay. Even a relief.

Her mom had been confused about who she was. Now she wasn’t confused. She was sure of who she was.

A new friend.

If you love someone with dementia, dementia still progresses.

If you learn as much as you can about dementia, dementia still progresses.

If you could provide perfect care to someone living with dementia (which is impossible), dementia would still progress.

You can do everything right. But you still don’t beat dementia.

Your loved one’s dementia getting worse isn’t because:

You lost your patience.

You’re not doing enough puzzles or activities.

You’re not “good enough” at caregiving.

We do not have control of how dementia progresses, but there’s a lot of info out there that causes us to second guess ourselves…

You see stuff about stopping dementia progression with certain diets or overpriced puzzles. Things pop up on Facebook that tell you how to be a better caregiver.

I have suggestions for people living with dementia and their caregivers. If people implement every single one of them, dementia still progresses.

Why? Because dementia progresses.

Even the newest drugs on the market for those in the earlier stages of Alzheimer’s do not cure Alzheimer’s. They may slow progression, but there is still progression.

I know I sound negative here and that’s not my intent.

My intent is to tell you to take a breath. My intent is to tell you that shouldn’t blame yourself when dementia progresses. You could not have done anything to stop the progression.

Let me tell you something that medical experts agree on: dementia has its own path. It moves according to its own rhythm – not because of anything you did or didn’t do.

On your very best caregiving day and on your hardest day when everything feels like it’s falling apart, dementia does what dementia does.

Your best is good enough. But it’s not going to cure dementia.

I was asked how to get a guy to keep his shirt on.

You see, this man (that I will refer to as Gene) had dementia and lived in a facility. And his wife was upset he wouldn’t keep his shirt on. He’d take it off, throw in on the floor, and when someone would try to help him put it back on, he’d fight it. It was the only time he wasn’t the gentle human being he had always been.

A friend of the wife contacted me to ask what they should do.

I asked why it was important that he keep his shirt on. And it was obvious that the woman thought this was a ridiculous question.

I thought perhaps Gene was trying to go outside in brisk weather without his shirt, but that didn’t seem to be the case.

I thought maybe Gene was trying to eat in the dining area without a shirt, which would be a health code violation. I was told that he ate in his room. In fact, he spent almost all of his time in his room.

So why was it so important that he keep his shirt on?

I was told that Gene had visitors. And this is why it was so important he keep his shirt on.

The grandkids would visit, and his wife didn’t want them to see him without a shirt. It could be awkward for the grandkids, his wife said.

His former co-workers would visit, and Gene being shirtless would make them uncomfortable.

I pointed out that maybe his former co-workers would accept that Gene was just more comfortable without a shirt right now.

I was told that Gene was a retired business person who was well-established in the community. He had been a significant mentor to some of the co-workers who visited, so it wasn’t a possibility he could choose not to wear a shirt around them.

I asked why Gene preferred not to wear a shirt. It seemed as if no one had considered why he kept taking his shirt off.

Dementia impacts a person’s temperature control. Perhaps he took it off because he was warm. Dementia affects the tactile sense. Maybe the fabric was uncomfortable or itchy against his skin.

It seems that Gene’s family thought he was taking off his shirt to “give them a hard time.”

The conversation was about how the grandkids and his co-workers and his friends might be uncomfortable if he didn’t wear a shirt while they were visiting. And his wife seemed to feel uncomfortable at the thought of how Gene being shirtless might make others feel awkward.

What about Gene’s comfort?

Gene was obviously uncomfortable wearing a shirt.

But no one really seemed to consider his comfort.

To me, this is similar to trying to get someone with cancer to stop coughing because the coughing might make others uncomfortable. We all know that’s ridiculous.

But is it equally ridiculous to get Gene to keep his shirt on when he’s in his own room?

I tried to gently explain my thinking. Is this a battle that’s worth fighting? If Gene fights when someone tries to put his shirt on, there’s obviously a reason he doesn’t want it on, even if he can’t express that reason.

At the end of this conversation, I was told that the decision would have to be made that Gene not have visitors until he was willing to keep his shirt on.

Because you wouldn’t want the visitors to be uncomfortable.

A friend of mine, Paul, was diagnosed with frontemporal dementia this fall.

Let me tell you a little bit about Paul. He’s a smart guy. He has a master’s degree. He is in his mid 60’s and retired a couple of years ago.

He was at the doctor for what he thought was likely depression. He had found that in recent months he had become apathetic–toward pretty much everyone and everything.

He wanted to be sad that his brother had cancer, but he really wasn’t. He thought he’d be devastated when his dog died, but he felt relief that he wouldn’t have to pay for dog food any more. And he didn’t care if he ate or showered. Some days he didn’t even brush his teeth.

While many people with this type of dementia don’t recognize their own apathy, Paul found it strange. When his brother died and he couldn’t feel empathy for his brother’s wife or kids, he went to the doctor.

He thought he’d be referred to a psychiatrist, but he was sent to a neurologist. His doctor didn’t mention dementia when he sent him to the neurologist. He figured the neurologist was going to prescribe an anti-depressant.

It took 4 months to get in to see the neurologist. The neurologist came in for less than 4 minutes and said he was ordering some imaging. It took over a month to get in for the imaging. There was also some insurance snafu somewhere in the process.

After the imaging, he waited a few more weeks before seeing the neurologist again. The neurologist said he had frontotemporal dementia. Paul said the doctor was in the room longer this time, perhaps 7-8 minutes. A sympathetic nurse patted his shoulder as he left the office.

Paul, who has never married, went to all of these appointments alone. He wasn’t given any resources to read. He wasn’t referred to a social worker. He was told he had frontotemporal dementia and sent home.

He didn’t know who to tell. He told me in an email. He gave me permission to write this blog post (as long as I didn’t call him by his real name).

I asked who else he had told. He told me no one, but he did plan to tell his sister-in-law. He just didn’t know exactly what to tell her because he didn’t know much about frontotemporal dementia.

He said he didn’t want to Google it (and I can’t blame him). He was scared he’d get information that was frightening and didn’t know if he’d be able to face it. He also wasn’t sure where to get reliable information.

I answered a few questions in an email. I told him that his diagnosis was terminal and gave him some numbers of life expectancy while reminding him that those were stats based on thousands of people. He was an individual and his progress would be unique. I was resentful that I was the one who had to deliver this news.

When he left the neurologist after diagnosis, they guided him in making a follow-up appointment that was six months in the future. However, he felt lost after walking out of the office and called them the next day. He asked for an appointment in the next few weeks so he could ask some questions. He was told there were no appointments available.

I wish the story of his diagnosis were uncommon. I wish it was rare that someone would have a poor experience through the diagnostic process. But it’s not.

It’s a story I hear a lot.

I wish health care providers had more time to sit down with individuals and families during the diagnostic process. I wish people living with dementia and their loved ones could get their questions answered in their provider’s office. I wish they could easily schedule follow up appointments. I talk to too many people who tell me that their experiences have been disappointing, at best.

My dementia simulation team and I have started producing folders for health care professionals to give to those who have been diagnosed with a type of dementia. Getting health care professionals to actually give them out has been more challenging than it should be.

We want to connect with individuals and families after diagnosis to tell them about our own support group and other support groups in our area, to give them referrals for counseling, and to let them know about potential other resources that are available.

I am sad that the need is so urgent.

We have to do better.

And, I do mean “we.”

I used to spend a lot of time thinking about how other people should do better…but in recent years I’ve realized that I am included in the people who should do better. My students and I strive constantly to work with health care providers to give individuals and families a better experience in diagnosis. We know the problem is systemic rather than something for which we should blame individual providers.

Sometimes I feel like we are making progress.

But I continue to hear stories like this.

We are working on it.

I have a group of graduate and undergraduate students who are committed to supporting families impacted by dementia. They are enthusiastic, smart, and passionate about what we do.

I fully believe they will get out into the field and improve experiences for those living with dementia and their loved ones.

But it’s a long road.

We try projects and programs. Sometimes they work, and sometimes they flop.

We will keep going. We don’t have unlimited money, and we don’t have unlimited time, but we are investing what we’ve got into this effort.

Empathy. Education. Empowerment.

Note: This is adapted from a post I wrote a couple of years ago.

I have a message for my families impacted by dementia. Caregivers, this is for you. The more overwhelmed, burnt out, and broken you feel, the more I want you to read this.

I wish you a happy holiday season. Or, for some of you who are really struggling, maybe happy seems a bit unrealistic. In that case, I wish you moments of happiness within a season of survival. I hope it’s not as a bad as you think it might be. Maybe it’ll be kind of like going to the dentist. The experience isn’t usually as awful as the expectation.

The holidays are a lot of fun–most of the time–for many of us–unless they aren’t. I work with many families affected by Alzheimer’s or a related dementia who look forward to Thanksgiving, to Christmas, to New Year’s…and have the most joyous time. Dementia by no means disqualifies you from having a wonderful holiday season. However, it can create some challenges.

Recently I’ve heard the following statements from family members of those with dementia:

“The kids are gonna come back to town and realize how much Mom has changed. They’re gonna tell me to put her in a home and I’m not ready.”

“My wife has dementia and I’m supposed to take her to this party. They won’t take no for an answer, but it’s gonna be a disaster.”

“I want to bring him home from the nursing home for Christmas, but I’m worried he’s gonna get aggressive when he realizes we’re taking him back.”

“I’m dreading another Christmas dinner at the assisted living where we all act like we want to be there.”

“I hate watching the grandkids around her. She gets so frustrated with them. She yells at them, and they don’t understand why.”

“Dad says totally inappropriate stuff now. I don’t know where I should take him and where I shouldn’t. And he has these angry outbursts. I am praying Christmas day is a good day for him.”

If someone in your family is impacted by dementia and you find yourself making statements like this, you’re not doing anything wrong. This is tough.

It’s not just dementia that you’re dealing with here. It’s your family dynamics. It’s friends who don’t understand. It’s people who still think dementia is about “people becoming a little bit forgetful when they get old.” You live in a world where people still don’t get it.

I don’t have any magic advice. The best I can do is to tell you that you may have to change your expectations. You may need to force yourself to find small blessings or moments of joy within what sometimes seems like a trudge through snake-filled quick sand.

The people who cheerfully work at the nursing home on Christmas day.

The neighbor who understands you are overwhelmed and shovels your driveway.

The joyful expression on your mom’s face when she sees she has just received a gift–even though she already opened that gift hour ago.

The friend who unexpectedly delivers a homemade fruitcake with a card. (And, no, it doesn’t matter if you like fruitcake.)

The families of the other residents at the nursing home who try, as hard as it is sometimes, to spread some Christmas cheer.

If you look hard enough, you’ll see the positive. I promise it’s there somewhere–for all of us. It gets buried when we go through rough times, but that’s when it’s the most important to uncover it.

And one more thing…this is important…you may have loved ones who visit from out of town and haven’t seen the changes in your family member with dementia. They may be taken aback at these changes, and they may imply or outright state that you are doing something wrong as a caregiver.

They will tell you about the internet article they read about vitamin E and dementia. They might suggest that your family member should be in a nursing home. If they are in a nursing home, they may suggest that your family member shouldn’t be in a nursing home. They may suggest your family member with dementia visit a chiropractor. They know A LOT about dementia…because they have seen a bunch of articles pop up on their Facebook feed. (Yeah, that’s sarcasm on my part. And, no, I’m not sorry.)

I don’t mince words on my blog, so here goes: SCREW THOSE PEOPLE. I’m sure they are well-meaning, but I give you permission to turn and walk away. You don’t have to get into an argument. In fact, I recommend you don’t get into an argument because you have limited time and energy, and I don’t want to see you waste even a small bit on an unproductive argument. Promise me, however, that you won’t let these people make you feel guilty. And, hey, if you give me their names, I’ll call them and tell them to zip it.

This holiday reason, be realistic. Don’t be too hard on yourself. Fake a smile but acknowledge that this might not be the holiday season you envisioned. Don’t be afraid to say no to holiday gatherings. Don’t apologize for leaving early. Stop worrying if you didn’t buy a present for everyone who is distantly related to you by blood or marriage. If it works to stay in your routine, stay in your routine. Remember that people who are critical of your caregiving just don’t get it. And when something goes horrible wrong, don’t be afraid to cry or to laugh. Either response is perfectly acceptable in my book. No judgement here, folks.

Happy holidays. You’ve got this. You’re gonna survive, and you’re gonna find a few good, or even great, things to focus on throughout the journey.

Hi everyone!

This a heads up to my Northeast Iowa crowd–or anyone interested in a road trip– that I will be doing a presentation at the Waterloo (Iowa) Library on Dementia Caregiving: Surviving the Holidays.

It’s Wednesday night (Dec. 11) at 6:30pm; all are welcome. No RSVP is necessary.

If you have questions, please email dementia.simulation@uni.edu.

The holiday season is a time of joy, celebration, and togetherness for many. However, for families affected by dementia, this period can present unique challenges.

Let’s face it…the holidays make you more of what you are. If you’re happy, they make you happier. If you’re miserable, they make you more miserable. If you are lonely, they make you lonelier. And–if you have dementia and are confused, they often make you more confused.

But you’re not alone.

Let’s talk about it.

I will discuss specific strategies to make your holidays as happy….as they possibly can be.

My team and I are pushing to train more dementia friendly restaurants.

I love eating, and I love it even more when other people make the food and bring it to me. If you ask me about a recent trip, the first thing I will talk about is where I ate. If you ask me about my hobbies, it’s unlikely I won’t mention food. If you ask me what I enjoy doing with my friends, eating and drinking is up there.

And, although my husband is a pretty good cook, I am not a cook at all. It’s not surprising that I enjoy a good restaurant meal.

I would dare to say that most people like eating at a restaurant, at least once in a while, and there’s no reason that those with dementia would feel differently.

I feel strongly that those with dementia should be able to thrive and participate in the community as long as they are able to.

Let’s make sure that restaurants understand the small changes they can make to assure that those with dementia are as comfortable as possible while dining out.

There are some things we can do as family members to provide a positive dining experiences as well.

Let’s talk about some ideas:

Choose the Right Restaurant: Opt for a place that is quiet, familiar, and not too crowded. A calm environment can help reduce anxiety and confusion.

Pick the Best Time: Go during their best time of day, which is often earlier when they are more alert. You can also avoid busier times at the restaurant.

Make Reservations: To avoid long waits, make a reservation. This can help reduce anxiety and ensure a smoother dining experience.

Simplify Choices: Help them with the menu by suggesting a couple of familiar options. Too many choices can be overwhelming.

Be Patient and Flexible: Allow extra time for everything, from ordering to eating. Be prepared to leave early if they become tired or agitated. You can always ask for boxes!

Check Bathroom Accessibility: Ensure the restaurant’s bathrooms are easily accessible and suitable for your loved one’s needs.

Keep the Group Small: Large groups can be overwhelming. A small, intimate group can create a more comfortable and manageable environment for your loved one with dementia.

Ask for Seating Preferences: Ask your loved one which seat at the table they prefer. This can help them feel more comfortable and in control.

Understand Changing Tastes: Be aware that what used to taste good might not taste good anymore. Be flexible with their food preferences.

Inform the Waiter: If it would be helpful, discreetly mention your loved one’s cognitive decline to the waiter.

Consider Parking: Check if you can drop them off close to the door if there are mobility issues.

Implementing these strategies can enhance the quality of life for individuals with dementia. By making small adjustments, we can help them continue to enjoy activities they love, such as dining out. 

If you know of any great restaurants in northeast Iowa that I might have missed in my dining experiences, let me know.

I also spend a lot of time in St. Louis for my job—so I’ll take recommendations in that area as well.

You should know I don’t do spicy food.

And that I don’t discriminate against hole-in-the-wall restaurants.

Finally, if you know of any Iowa restaurants who would like to do a training and become dementia friendly, email us at dementia.simulation@uni.edu.

We’d love to help.