Hey…I’ve thinking about death lately.

I come by it honestly. I’m a gerontologist.

Even more than that, a colleague has been organizing some death cafes (Google it if you’re interested) in our community. I have been fortunate to attend a couple.

I’ve also talked to a good friend quite a bit recently. She lost her husband to dementia a year ago. And, amongst the many others feelings she may have felt when he died, she felt relief.

People don’t like to acknowledge that the death of a loved one brings relief.

But often it does. And acknowledging that it does is okay.

Let’s normalize this. Sometimes death brings relief.

That doesn’t mean it doesn’t bring sadness. Or anger. Or bitterness. Or a million other things.

It is normal if relief is hanging out with all those other feelings.

You don’t have to feel guilt for that relief. Or shame. Or embarrassment.

Relief is a completely valid response to death.

I felt relief when my dad died.

Relief for him because he was experiencing fear and distress in the days before he died.

Relief for my partner because he had been part of those sleepless nights and was debating if he should go on an upcoming work trip to Kosovo if I was still in caregiving mode.

But also—-

Relief for me because I was tired.

Relief for me because I was stressing about how I could possibly keep asking my team at work to cover everything I typically did.

I also felt sad, cheated, grateful, and loved. If I were a wine, I’d say I also had notes of bitterness and joy with a not-so-delightful aftertaste of jealousy. It was a complex flavor. But whatever.

Whatever you feel at death is okay. If someone asks how you are, it’s okay to say relieved. It’s also okay to say you’re happy, tired, pissed off, and/or hungry.

I was at a funeral once and hugged the spouse. I said “How are you?” She said thirsty. It was as valid of a response as anything.

But she apologized later for her response and told me she was devastated by her husband’s death. It’s like she couldn’t let me leave thinking that her current state was primarily thirsty.

I was thankful she had told me she was thirsty. I had walked to a convenience store across the street and bought her a Gatorade.

Devastated? I don’t know how to help. Thirsty? I got your back.

After a loved one’s death, you get to be thirsty.

Or relieved.

Hi friends,

Tomorrow is the two year anniversary of our Dementia Simulation House!

I have something different for you today. I’ve been reflecting recently on how incredibly lucky I have been in finding the right students to work with us at the Dementia Simulation House.

Our success is built on our students. They are the heart and soul of what we do, and I don’t know where we’d be without their contributions. I asked one of the graduate students on our team to write about her experience. Please read about Elsie’s experience below.

–Elaine

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My journey at UNI’s Dementia Simulation House started November 2022 when I was searching for graduate programs in mental health counseling to apply to. I knew I wanted to work with older adults, so my number one priority was to find a school that would help me start a career in geriatric counseling.

I did some research. (The Dem Sim team knows that I love to research.) I came across the University of Northern Iowa. As a South Dakota native, I really didn’t know much about this school. However, I saw that they had a superb gerontology program, and I specifically remember bragging to my mom about how cool it was that they had this Dementia Simulation House on campus. I was amazed and thought maybe I’d have to go check it out sometime without even imagining that I’d be working there less than a year later. 

The first time I ever met our team was at Dr. Elaine Eshbaugh’s house for a little kick-off party before the semester started this fall. Right away, everyone was so welcoming. 

The people on our team really know how to make each other feel special and valuable. Most incredibly, my all-time favorite thing about the house is that there hasn’t been any drama. It blows my mind.

As a former athlete, I’ve been on a lot of teams, and I honestly thought that fighting was just a part of the deal. However, I’ve learned that there’s not much to fight about when all members of the team are so passionate about the same purpose, to make the world a better place for those living with dementia. 

It hasn’t all been roses. As anyone on our team will tell you, Elaine has a wonderful way of pushing you far beyond your comfort zone. I have a phobia of public speaking. This is a problem because, obviously, if you want to educate the community about dementia, you have to talk to them. Slowly, I’ve become more and more comfortable with this part of the job and was even able to present with Elaine at a conference this fall. 

I’ve learned so much working at the Dementia Simulation House that I can apply to my future work as a counselor. Counseling is about empathy, encouragement, and being able to walk alongside those who need a helping hand. You can’t truly acknowledge the experience of someone living with dementia if you don’t have a deep understanding of what dementia is. 

It’s impossible to uncover everything about dementia because quite honestly, not much is set in stone. Everyone experiences dementia differently. There’s no step-by-step guide on how dementia progresses or one-size-fits-all solution, and that’s why dementia is so hard. 

This variability serves as a reminder to me that to help someone living with dementia, I need to take an individualistic approach. I need to recognize that this person is still the same person they’ve always been and respect their experiences even if they look different than my own. 

This is just one of the many lessons I’ve learned from our team at the Dementia Simulation House. If you’ve never been through our simulation or have been through before but want to experience it again, please come visit us! I promise that you will walk away with more knowledge and tools that you can utilize to be a friend to those living with dementia.

We care about the last time.

The last time your kid walks home from elementary school. He’s moving on to junior high.

The last time you walk out of the job you’ve had for 20 years. You’re going back to college.

The last time you have chemo. You ring a bell and learn you are in remission.

Sometimes we know it’s the last time. Sometimes we know it’s the last time and we are looking forward to a promising first time. In some cases, this is bittersweet.

Sometimes we don’t know it’s the last time. Sometimes the last time doesn’t lead to a promising first time.

The last time your dad with Alzheimer’s eats a meal without assistance.

The last time your loved one with Lewy-Body goes for her daily walk around the neighborhood.

The last time Grandpa is able to travel for three hours to see his grandkids.

A friend of mine had a last time a few months back. The last time her dad called her by her name.

She visited him at the nursing home. He was having what she considered to be a good day. He was more cognitively aware than he had been in a while, and he seemed to be entertaining himself with bad jokes.

More than a few times, he looked at his daughter and said her name intensely. He would get her attention and she’d look at him. But then he had nothing to say. My friend found that to be odd, but didn’t think much of it.

She went on vacation. During that week, he likely had a small stroke. When she went to visit him, he was struggling with speech and didn’t seem to recognize her. He didn’t call her by her name.

That was months ago. She now recognizes that the day her dad said her name several times in such a powerful way was the last time he would call her by name. She wonders if somehow he knew he’d lose the ability to call her by name in the next few days, and he wanted to call her by her name as much as possible.

You usually don’t know it’s the last time when it comes to dementia.

Often times people are telling a story and will stop and say something like, “I guess that was Dad’s last plane ride,” or “I think that was the last time Grandpa was able to go to one of the grandkid’s games.”

We usually think there’s going to be another time. Another vacation. Another basketball game. And at some point, there’s not.

I read something recently that has stuck with me:

Everything ends and that’s okay.

I’ve thought about this in terms of my capability to run a marathon (too many back surgeries), friendships, my favorite vacuum that bit the dust (is that a pun?), and life in general.

I don’t know if I feel okay about life ending. But life might lose its meaning if we live forever. And the world would be crowded. We’d have to cut down all the trees to build houses. But how would we build houses (and other things) without trees?

So maybe it is okay that we die.

We think about last words and last breaths. But we also think about other types of last times.

And with dementia, there are a lot of last times.

I could never have put my wife in a nursing home.

Those places are horrible. I am suprised you did that.

I will always keep my mom at home with me.

And so it goes.

You make a decision. You didn’t want to make that decision. Your wife has Alzheimer’s, and she feared at some point she would no longer be able to live at home. That time has come.

You visited nursing homes. You looked at their online reviews. You talked to anyone you knew who had a family member in a nursing home.

You did the best you could.

Repeat after me: You did the best you could.

The best you could was choosing to place someone you love in an environment where they could receive care 24/7.

And then someone makes a comment. Maybe it’s subtle and maybe it’s not so subtle.

I was speaking to a group last week when a man shared that he had been shamed by someone at church when he showed up the first time without his wife. After explaining that she was in memory care, this person said, “I can’t believe you did that.”

When this man told the story, I interrupted. (Ask my husband…I interrupt a lot.) Not because I didn’t think what he was saying was important but because it made me so angry.

Let’s back up a bit.

My dad was never diagnosed with a dementia-causing condition, but he did struggle cognitively at the end of his life. More than that, he struggled with mobility. He tried to walk. He fell. Rinse and repeat.

It was never a real option to have him live with us. I never sat down and talked to my husband about it. I never made a pro/con list. But there were times when it was a fleeting thought.

Then I remembered that there was no way we could keep him from falling. And we had stairs. Oh, and the recurrent C-diff….if you know you know.

For the last 6 months of his life, he was in a nursing home on and off.

Perhaps that’s why I interrupted this guy.

When people shame you for choosing a nursing home, it’s not acceptable. Perhaps they realize it’s hurtful, or maybe they don’t. But we need to stop.

There are enough messages out there telling care partners they are doing it wrong. You don’t need a guy at church throwing in another message.

You need more supportive people in your life. You need better friends.

You need to walk away when someone makes a comment like that.

Do the important thing first.

What is the important thing? That’s for you to decide.

We all have limited energy. People living with dementia have energy that is even more compromised. They get tired–physically and mentally–quickly. And tasks that many of us find simple and mindless can be exhausting to someone living with dementia.

When the dementia brain is depleted, it needs rest. There’s no way around it. You can’t convince the individual to try harder. It isn’t a matter of laziness. They aren’t being belligerent. When the mind is too tired to continue, it must rest.

Although our energy may be significantly greater than someone with dementia, those of us without dementia still have limited capacity.

One day last week it was important to me that I finish a technical report. I had procrastinated but it was something I’d figured would only take a few hours. It was on the top of my list.

That morning, I got an email asking me for advice on a dementia situation and two phone calls about a student issue. There were not urgent matters, but I took a few moments and quickly answered the email. Then I returned one of the phone calls. By the time the phone call was over, I had a response to my email asking for more specific information. I responded to that email. As I was typing, I got an email about the student situation.

After I responded to that, I realized I had forgotten a detail that I should have added when I was on the phone, so I called my colleague back. She had just talked to a university administrator about the situation, and she filled me in on that conversation. And so it went.

I had intended to start the technical report at 8:45am. By the time I had come to a stopping point in those communications, it was 12:30. I should have had the technical report done. But I hadn’t even started.

More than that, I had lost my momentum. I was ready to dive in that morning. Four hours later, it was the last thing I wanted to do. All the emails and phone calls had cost me a significantly amount of energy.

I thought back to the moment I realized I had received the original email and noticed I had voice messages. Could I have processed the content of the communication and decided it was less important that the technical report? Yep. Would those inquiries still be there when I finished the report? Probably—but if someone else had solve the problems in the meantime, all the better.

I didn’t do the important thing first. I didn’t do it when I was sharpest and most energetic. When I finally got around to it, I didn’t have much left to contribute.

If a person has dementia and they love wrapping holiday gifts, wrapping is the important thing. Do it first. If they are too tired to go Christmas shopping or put up the tree later, that’s okay. They got to wrap gifts.

If visiting the grandkids is the important thing, do it first. Structure the day so that the person living with dementia has the most energy during that visit. If they are too tired later in the day to help clean the house, so be it.

Sometimes the most important thing is the fun thing. Maybe it’s a walk in the woods with a friend. Or going out for coffee with a spouse. Perhaps it’s watching a favorite TV show. If it’s the important thing, do it first.

Sometimes the important thing isn’t a fun thing. A doctor’s appointment. A long car ride. Sometimes it’s something hard and energy-consuming that must be done. You do it first, and set the individual up for success, while they still have the capacity to do it with the least stress possible.

Sometimes the important thing is related to self-care. Maybe it’s eating a healthy breakfast. Doing a 10-minute yoga video. Petting a dog. It’s possible that your important thing yesterday was a spin class and today it’s eating a burrito from your favorite Mexican restaurant.

Whether you are a person living with dementia or a care partner (or none of the above), the key is understanding that the world can’t dictate what is important to you. Maybe the important thing is sitting on the couch drinking coffee. Maybe it’s stopping to get a donut on the way to work even though it makes you late. Maybe it’s watching college basketball on TV, playing pickleball, building a castle in a sandbox, or looking out the window doing nothing. Yes, maybe doing nothing is the important thing. No one else has to understand why your important thing is your important thing.

I am going to bed. Because right now, sleep is my important thing.

Your loved one has dementia.

You know you should be patient. You know it’s not their fault.

But sometimes you aren’t that nice. You aren’t patient. You aren’t loving.

And then it sets in. Guilt. Shame. Regret.

Recently a gentleman visited our Dementia Simulation House. After doing the simulation, he sat in our living room. My students and I sat on the loveseat and couch, prepared to do our standard debriefing after the simulation.

It became obvious that he didn’t need our standard debriefing.

“I am just horrible,” he said. “I am mean and horrible.”

He told us he wasn’t always kind to his wife when she was repetitive or confused. He said that he had always tried to be patient, but doing the simulation really affected him—and made him realize that he was, in his word, a “bad husband.”

I had met the guy 20 minutes before, but I doubted he was a bad husband. Bad husbands usually don’t drive across the state on a Sunday to learn more about how to support their wives with dementia.

However, he was a husband who needed help. He needed support. He needed respite. He needed sleep. He needed exercise and a better diet. He needed a friend.

He had given everything he had to being his wife’s caregiver.

When he gave everything he had, he had nothing left to be the kind, caring, and patient husband he wanted to be.

I didn’t know this guy well enough to know what he needed. Someone from his church to stay with his wife a few times a week? Home health care? A counselor well-versed in caregiver? A support group? A meal delivery service? A house cleaner? More financial resources?

He felt like he was failing his wife. But we (meaning the field of health and social services) were failing him. We were failing to connect with him and talk about resources. We were failing in helping him make a plan so that home care was sustainable. We were failing in so many ways to help a good husband who was struggling.

We do a ridiculously poor job of connecting with caregivers and those living with dementia at diagnosis and early in the disease process. The medical profession offers a diagnosis but little to no information on how to actually live with dementia. (Trust me when I say—-my team and I are working on this, but it’s an uphill battle.)

It’s funny how this works, but when we provide more support to caregivers, they are more patient and resourceful caregivers. When we provide support to caregivers of those individuals with dementia living at home, those individuals stay in the home longer.

Caregivers, you are human beings. I spend a lot of my day talking to people about being more empathetic to those with dementia, but I am not grading you. And I don’t judge.

You are a human being. And dementia is a lot. Sure, I lecture on maintaining calm and patience with those with dementia, and I hesitate to say it’s “okay” to ever be unkind to those individuals. It’s not “okay,” but perhaps it is human to have those moments when you spend most of your time caregiving.

Snapping at someone who has asked you the same questions 25 times in an hour doesn’t make you a bad person. It just means you are human. And we need to knock it off with the shame and guilt. They don’t help you and they don’t help your loved one.

If that lack of patience becomes a pattern, consider it a cue that you need support. You are a good person who needs help.

Maybe you are not failing. Maybe you are being failed by a system that doesn’t acknowledge those who give care to adults, especially adults who have cognitive impairment.

Hi all!

We have a lot going on at the Dementia Simulation House this fall…including new support group opportunities! If you don’t live close to us in Cedar Falls, no worries–there is a Zoom group as well. These sessions will be facilitated by graduate students in our Counseling program.

I will be sending out information on some other programs we are offering soon!

If you’d like to learn more about our support groups, click here!