Not surprisingly, I’ve been thinking about grief.

You all know the five stage theory, right? Denial, anger, bargaining, depression, and acceptance?

I’ve never been much of a fan, and research supports my intuition that grief doesn’t send you on such a predictable journey.

In all fairness, the stage theory was not created to describe grieving a deceased loved one. It was created to describe what a person goes through when diagnosed with a terminal illness. However, we often apply it to the death of a loved one.

The theory suggests you only experience one emotion at a time. After my dad and step-mother both recently passed, I can say that I am in acceptance–but yet I am angry. I’ve been doing some bargaining, but that doesn’t make sense (according to the model) if I’m still experiencing anger. Also, where does guilt fit in?

In a way, this stage theory gives people hope. You have a loss, and you think that there’s a clear path to the end of grief. You work through each stage and then (BAM!) you are no longer grieving. It’s over and you move on with life. Good as new.

It doesn’t work that way.

This theory might lead people to believe something is wrong with their grieving process if they don’t experience these stages in order or at all. Not everyone denies. Not everyone bargains. And what about gratefulness? If you feel grateful somewhere in your grieving process, are you doing it wrong?

Grief is not predictable. It’s different for everyone, and it’s different for every loss.

Grief is a reaction to loss. It is what you feel when someone you love is taken away. The implications are physical, emotional, social, and psychological.

It makes you do crazy things.

It keeps you from sleeping, or it causes you to sleep all day.

It keeps you from eating, or it makes you eat junk food all day.

You make impulses purchases. You get all your hair cut off (considering this one currently). You throw yourself into work, or maybe you stop showing up at work. You go running twice a day, or perhaps you can’t get off the couch.

I don’t know what your grief is going to look like. I am not even sure what my own grief will look like tomorrow–or even in five minutes.

So be kind.

Be kind to people who are grieving.

Don’t judge their grief if it’s different than yours.

And, perhaps most importantly, don’t judge your own grief.

Also, do I need bangs?

I have a hair appointment coming up….

I’m back.

If you are wondering where I’ve been….

…my dad died.

He died about 3 weeks after his wife (my step-mother) died.

There’s a lot to be unpacked here, as you might expect. And I will keep some of it to myself and save some of it for future posts.

But let me tell you about something that I didn’t expect to experience.

For the last couple months of my life, I was my dad’s person. I was his caregiver. I advocated for him. I’m an only child. I had all the support a person could ask for from my people, but I was his person. I made all the decisions. He depended on me. He trusted me. Sometimes I felt like it was us against the world.

I spent about 8 weeks focused on my dad’s next step. First, he was in a nursing home. His wife was in a different nursing home about 45 minutes away. I worked to get him transferred to be with his wife. It was a win.

She died 48 hours later.

Then I worked to get him transferred to a nursing home to be closer to my husband and me. Right before this happened, he fell at the nursing home he was at and ended up in the hospital for 9 days.

While he was in the hospital, I (again) worked on getting him discharged to a place by us. Finally, he was sent 90 minutes on a non-emergency transport to a nursing home about 3/4 of a mile from our house on hospice care. He made it to the nursing home by our house. It was a win.

A week later, he passed away in the 10 minute gap between my husband leaving the nursing home and me arriving to be with him for the next shift. I texted “He’s gone,” to my husband and he was there in an instant. The cremation services came to get him within an hour. And that was that.

Then I went home and took a nap. My friend Kim had planned to bring dinner to the nursing home. Instead, we went out to eat. I had a chicken quesadilla. Then I went to my husband’s slow pitch softball game.

I saw quite a few people I knew. Many already had heard that my dad died.

But a few of them had not heard and were like, “Hey, Elaine! How are you?”

I couldn’t think of a good response. I couldn’t say I was good or fine. If I wasn’t straight up, I felt like I was lying by omission, so I would say, “My dad died.” They all responded to my awkwardness with grace and compassion. A fried on the opposing team gave me a White Claw.

I woke up the next morning feeling a bit…empty. Honestly, I had no idea what to do. My dad didn’t want any services. There was no funeral or gathering to plan. I was grateful to him because I hate planning events. My dad avoided mingling at all costs, even in death.

I laid in my bed with our pups and watched Missing: Dead or Alive on Netflix for half of the day. Our cats graced us with their presence off and on.

Then I got up and shampooed the carpet in our hallway.

Next I watched a couple episodes of My 600 Pound Life.

I had done everything I could for so long, and now there was nothing to do. Well, except shampoo the carpet in our hallway. For the first time in a long time, no one needed me. Well, except the pets and the hallway carpet.

I didn’t realize I had embraced this advocacy/caregiving role. It was stressful and exhausting. But somehow its absence left me empty. I expected to be in that role longer.

And I wanted to rewind time.

I wanted to rewind time to the times that I didn’t consider to be good times. Maybe they weren’t good times. But there were good moments within those times.

Not that I had regrets. I’m proud of how hard I worked to move my dad along on this journey. I was assertive. I did my research. I used my social skills and connected with people to get my dad what he needed. If I were to list things in my life that make me proud, this would be somewhere near the top of the list.

It’s selfish for me to say I would rewind time. He suffered. Shortness of breath. Anxiety. Terminal agitation. Fear. He didn’t deserve that. No one does.

I didn’t like that he went through that. But if he had to go through that, I wanted to be there. I was there.

I thought I had more time. I was going to walk the dogs up to the nursing home to watch Wheel of Fortune a few times a week. I planned to continue to try to convince him to watch something more politically neutral than Fox News. I thought I’d make him meatloaf. Perhaps that was a bit of a pipe dream because I hate cooking and have no idea what goes into meatloaf.

But no matter. He died.

I am a little lost. When you are someone’s person and that person isn’t around anymore, perhaps it’s normal to be lost.

Today I took a nap. I woke up in a state of anxiety. I don’t remember my dream, but I was short of breath upon waking because my dad died and I knew I had forgotten to do something. I was searching to brain to figure out what I had forgotten.

I had him cremated.

I contacted the lawyer.

I emailed the guy at the bank.

Oh, shit. Did I pick up his cremations?

Wait. Yeah, my husband brought him home.

Did I have a funeral? No–because he didn’t want one.

Did I write an obit? Yes–and it was really good (see below).

What am I missing?

My dad’s dead; what the hell am I supposed to be doing now?

I am working on letting go of the caregiver role, but I’ve got a new role: condo flipper. My dad and stepmother’s condo needs some work before it can go on the market. If I don’t know how to do something, I can just google it, right?

In three words I can sum up everything I’ve learned about life: it goes on. –Robert Frost

Roy’s obituary:

https://www.legacy.com/us/obituaries/legacyremembers/walter-eshbaugh-obituary?id=51973551

I had my first mammogram a few years ago. It wasn’t because I suspected I had breast cancer. It’s because I hit the age where they told me I needed a mammogram.

At some age that I don’t remember (and that’s probably changed in the last 25 years), I had my first Pap smear. Again, there was no concern I had cancer. It’s just what I was supposed to do.

I am guessing that you have also had medical tests, not because thought something what wrong, but because they were generically recommended by your doctor.

Perhaps a colonoscopy. A prostate exam. A bone density test.

Why don’t we do this with cognitive testing?

What if, when a person hits a certain age, a cognitive test was part of a basic physical assessment?

People would do a cognitive test–not because something is wrong–but to have some data to compare over time.

I am not an expert on mammograms, but I am guessing that if there was something suspicious on my mammogram, the first step would be to look at previous mammograms to compare.

Could we do the same thing with cognitive testing?

Let’s say your loved one starts to show symptoms of dementia. They go to a physician. The physician does a cognitive tests and says your loved one got a 26.

What does that mean?

What would this have gotten on the cognitive test last year? Or five years ago?

Keep in mind that dementia is about change. It’s cognitive decline. And decline really means change.

We don’t need a snapshot of where a person is. We need a video of their progression.

I am not the first person to suggest this. And, occasionally I hear from someone who says that their physician started doing cognitive assessments as part of their physical at the age of 65 even though they did not have dementia symptoms. Wonderful, although I’d argue that 65 is too late…especially for a test that is so cheap to administer.

What I am suggesting does happen. It just doesn’t happen enough.

Keep in mind that a cognitive assessment is not used to diagnose Alzheimer’s or another type of dementia. It is used to determine if a referral and more testing may be needed.

A few advantages of doing a cognitive assessment at regular intervals. If a person does show symptoms of dementia but doesn’t recognize those symptoms, they don’t have to be dragged by the family to an assessment; they may have one coming up.

Also, many people who show symptoms of dementia have anxiety about doing an assessment that is reflected on the assessment results. If they did the assessment regularly, anxiety would be less of an issue.

I know a lot of people don’t like the idea of cognitive tests. I get it.

But I have this stuff sitting in my bathroom that I have to drink in May before I get my first colonoscopy. They changed the age to 45…right when I turned 45. I’m not excited about it.

I am doing it anyway. Just like I do my Pap smears and mammograms.

Let’s just throw in that cognitive assessment.

We recently did a couple of focus groups with spouses/partners of those living with dementia. We asked what our community could do better to provide them with support.

There were a lot of things, of course. However, my team and I keep coming back to one issue that several caregivers brought to our attention.

A couple of women mentioned that their husbands with dementia were not at the point where they needed memory or nursing home care. In fact, their husbands were quite active. They still wanted to spend time with friends. They liked going to brunch, playing cards, and wine night.

These women told us that, as soon as the diagnosis came along, they were no longer on the invite list.

And they were hurt.

They assumed their friends weren’t sure if they could still participate. Or they just didn’t know what to say.

So people living with dementia and their caregivers were ousted from the social circle. No matter the reason, exclusion is painful. And some of the friends who excluded them had been in their social circle for 25 years.

Their friends didn’t ask them, “Hey, are you and Tom still interested in coming over when we have dinner parties?”

Or, “We’d love to have you for card club, but if that doesn’t work anymore, we’d love to just stop by a visit every week or so?”

Sigh.

To be fair, I’ve become more positive about the power of friendship (or even “chosen family”) in our lives as I’ve ventured more into the dementia community. Friendships can be really amazing.

I know a woman who moved across the country to live with her best friend to help caregive when her best friend’s husband was diagnosed with Alzheimer’s. It is common when I do presentations that a female caregiver comes with a friend, who insisted they take the time to show up and serves as the caregiver’s primary support.

It is probably not surprising that I see this less among men. Men struggle with social support when their wives are diagnosed with dementia because it is typical that the vast majority of social support has come from their wives.

When someone has dementia, there are friends who come through. And those who don’t.

I always tell people to focus on the friends who are there rather than the friends who aren’t there.

Sadly, someone recently responded with, “But what if no one is there?”

The purpose of our focus groups was to figure out what we could do better. A few ideas come to mind….

But one that I am passionate about is educating communities about dementia. We do a training called Dementia Friends. People learn the basics of dementia–and how you might interact or support with someone living with dementia. It’s not time-consuming. It’s a one hour training that most people find interesting, and it can be delivered in-person or virtually.

A focus of the training is that people with dementia can have a positive quality of life.

We need to do more of these trainings. We need to impact more people.

We need to talk more about dementia. We need to eliminate the stigma. We need to make interacting with someone who has dementia a normal occurence, not something that is stressful or scary.

If we can do this, when people’s friends have dementia, they may step toward them rather than away.

I was talking to someone recently about my love of criticizing hotel carpets for not being dementia friendly. (We all have hobbies, right?)

The person responded with, “I see your point. But how many people with dementia really stay in hotels?”

The answer is 984,830. Just kidding.

I don’t have any specific data to answer that question but…a lot. A lot of people with dementia stay in hotels.

Just like a lot of people with dementia eat in restaurants. A lot of people with dementia go to sporting events. A lot of people with dementia go to movies.

Here’s a list of things that people with dementia do:

Play golf.

Go to SuperTarget.

Enjoy concerts.

Drink coffee at Starbuck’s.

Ride bikes.

Work out at gyms.

Go to wineries and breweries.

Get their hair cut at salons.

Does everyone with dementia do all of these things? Of course not. But, to be fair, I don’t play golf and I prefer to drink coffee at places other than Starbuck’s.

Obviously, as dementia progresses, it increases the need for support as people with dementia do these activities. And, people with dementia eventually may have to give up some of the things they enjoy. They often experience a series of losses when they have to give up hobbies.

But that doesn’t happen at the moment of diagnosis.

There’s this time between diagnosis and death. It’s called life. (I’d like to think I made that up, but I probably stole it from somewhere.)

I once told a chiropractor about an opportunity to become a dementia friendly business. His response was that he wasn’t interested in going into nursing homes to practice.

The misconceptions about dementia in our communities still surprise me. We don’t seem to be understanding that many people living with dementia are….living. They may need new strategies and supports. Life changes, and it goes on.

I may not have an exact number of people with dementia who stay in hotels. Maybe that’s my next research study. (Me: Can I interview you? Do you stay in hotels? Do you have dementia?)

However, I can tell you that 4 out of 5 people with dementia do not live in a facility. Where do they live? They live in the same environments most of us do–with our spouses or partners, with family, with friends, alone…even in homeless shelters.

That person who asked me how many people with dementia actually stay in hotels?

When I said a lot, he responded with, “Well, I stay in a hotels all the time and I’ve never seen one.”

Sigh.

File this under things NOT to say to dementia caregivers:

My husband/wife/dad/mom forgets things sometimes, too.

I will give you some context. A woman whose husband has Alzheimer’s is out with friends having coffee. She is venting about how frustrating it is to see her husband struggle with short term memory.

And then one of her friends says it (or a version of it):

Well, you won’t believe what my husband forgot the other day.

This is likely well-meaning. Perhaps she is trying to create a connection with the caregiver. She might think the caregiver will think, “Oh, I guess this happens to lots of people. This isn’t so bad.”

I am not saying the friend is a bad friend.

But dementia is not normal. It is caused by brain diseases. And until it impacts someone you love, you really don’t get it.

To say that you are experiencing something similar dismisses the challenges of the caregiver. Your husband might forget sometimes, but if he doesn’t have dementia, please stop trying to say you know what it’s like.

You don’t.

People living with dementia get similar comments. A friend of mine was recently diagnosed with Alzheimer’s. She was telling someone from her church about her diagnosis.

“I totally get it,” the woman said. “I am always calling my grandkids by the wrong name.”

Wow.

It amazes me that we have such a low level of general knowledge about dementia in our communities.

I’ve told you what friends shouldn’t say to caregivers. Maybe it would be helpful if I told you what the should say.

First, think about someone who was diagnosed with lung cancer.

You would not say, “Oh, I have been coughing a lot myself.”

What would you say?

I am always here to listen to you.

Please let me know how to support you.

I am so sorry to hear about your diagnosis.

That sounds really frustrated. How are you coping?

That really sucks.

Let’s understand that someone with dementia has a brain disease.

It’s not a normal part of aging.

Please respond as if someone has been diagnosed with a life-limiting, chronic, and progressive disease.

Because they have.

I went to Target today. I don’t go to Target a lot. In fact, I order stuff online to avoid going shopping. Today, however, I was in a mood. And I wanted to shop.

I went there for one thing, which I, of course, forgot to buy. I came home with two t-shirts, a new mop vac for our kitchen, some soft cat food (a treat for our kitties who only get the hard cat food), three squeaky tennis balls for our three dogs, some new plastic cups, and some detergent for our carpet steamer. I don’t say this much, but I had a lot of fun shopping.

I headed to the checkout. A couple followed and got in line behind me. The man, who looked to be in his early 60s, was pushing the cart. And, he certainly was pushing it. It seemed as if he was trying to push it as close to me as he could without touching me. I found myself squeezed in between my cart and their cart.

I moved forward to give myself some space. However, this put me past the conveyer belt. I had to grab my purchases and reach back to put them on the belt. I took another step forward as he moved his cart forward–this time hitting my rear end.

I have some padding on my rear end, so I absorbed the impact pretty well. But I was annoyed. Now I couldn’t get my purchases on the belt because his cart was in front of it.

I had to reach back and over his cart to put my goods on the belt.

Then it was time to pay. At this point, his cart was in front of the console. I got out my credit card to pay. Again I had to reach across his cart. For each question asked by the console, I had to lean on this cart to be able to hit the keys. I kept expected him to realize his cart was blocking me and apologize, but he didn’t. He seemed somewhat annoyed I was touching his cart.

I was angered that my delightful shopping trip had turned awkward and frustrating. But I looked at the guy.

He wasn’t looking at me. In fact, he didn’t seem to be looking at anything. He seemed to be oblivious to how he had pushed me out of the checkout area with his cart.

I took a deep breath. I didn’t know a thing about this guy. Perhaps he was a real jerk who enjoyed going shopping and hitting women with his cart. Perhaps he wasn’t.

Maybe he had a visual impairment and struggled with depth perception. Maybe he had dementia. There’s a chance he had severe anxiety in crowded places like Target and felt the need to get the heck out of the store as soon as possible. He could have been in the midst of an anxiety attack. Maybe he was diabetic and had lower blood sugar. This could make someone struggle to interact in their environment.

I teach people to be dementia friendly as they interact with individuals in the community. But people with dementia don’t walk about with big D’s on their foreheads. Maybe you know someone has dementia because you heard it through the grapevine or they go to your church or know your grandma. But many times you are out in the community and see someone who is acting a bit differently….and you have no idea why.

At Target this morning, my first thought was to be annoyed at someone who was being rude and invading my space. If I had a first assumption about the situation, my assumption was that he was a jerk. I mean, in the post COVID world, who feels the need to invade a stranger’s space like that?

That’s where my brain went initially. It was only when I took a breath and stepped back that I realized there is probably more to the story.

And I don’t know the more to the story. This really isn’t just about dementia. It’s about giving people some grace…without knowing why they need that grace. Whatever caused this man to drive me forward by using his shopping cart, I understand. I don’t know what I understand. But I understand, and it’s okay.

If that guy was a jerk, so be it. In that case, I was the better person.

If you know me, you probably know March is my favorite month.

Two reasons. 1) Spring. 2) Basketball.

My husband and I are known for putting three TVs in the living room so we don’t miss any NCAA tournament games.

It’s better than Christmas. I’m not kidding. I enjoy it a lot more than Christmas.

A few years ago, I happened to be at a memory care community during March Madness. I struck up a conversation with a resident. I mentioned that I was headed home to watch basketball.

He lit up.

I had met my match.

He started talking about the NCAA tournament. He was throwing out teams. Vanderbilt. Kentucky. Indiana. He was talking about scores. He told me who had beaten who earlier in the day. And who he predicted would win that night.

But it didn’t make sense. Some of those teams hadn’t made it in. And the match ups he described were off.

The enthusiasm was there, but the facts weren’t.

Then he mentioned a few names from the past, like Bob Knight, who retired as a coach years ago.

Here’s the thing….he was talking about NCAA tournaments of the past, but it didn’t matter.

I wish I had a video of how excited and animated he was talking about the tournament. He even acted out some buzzer beaters. And I really enjoyed our conversation.

We connected. We shared a passion. It talked to him for a long time. Not because I felt trapped. Because I was really enjoying it.

I could have questioned or corrected him about games, teams, and coaches, but that would have dampened his enthusiasm. And, in this case, his enthusiasm was far more important than the facts.

I tried to make this point recently to a woman whose husband had dementia. When they retired, they became avid birdwatchers. Her husband would excitedly identify the birds they’d see visiting their bird feeder. It was their morning ritual.

They continued their ritual after he had dementia. He just as excitedly (and confidently) identified the birds. Except he was wrong.

It really bothered his wife, and she asked me what she should do. He would get frustrated and argumentative when she corrected him. It seemed to dampen his enthusiasm for what was his only hobby.

“What would happen if you didn’t correct him?” I asked.

“Well, he’d continue to misidentify the birds,” she responded.

“And is there harm in that?” I asked.

She said, “But they wouldn’t be the right birds.”

I further questioned her. I wanted her to realize that his enthusiasm for bird watching was more important than the correct identification of the birds. But she couldn’t grasp it.

Then I realized that I was perhaps oversimplifying the issue by suggesting she just go along with his identification of birds.

Each time her husband wrongly named a bird, her heart broke a bit more. And I get it. This was her husband’s thing. It was their thing. And it was becoming more and more obvious that he was changing.

“Now he can’t name a bird. How long will it be before he can’t name me?” she wondered.

Ah. Now it made sense.

He was changing. He didn’t know a hummingbird from a cardinal. That wasn’t her husband. But you know what was her husband? The enthusiasm. And she was shutting that down when she corrected him.

We talked about ways she could work on letting go of his errors and focusing on his enthusiasm. If he said a hummingbird was a cardinal, could she talk about how it was the most beautiful cardinal she’d ever seen? She said she’d try.

We want to encourage people living with dementia to keep doing what they love to do. Watching basketball. Watching birds. We want people with dementia to be engaged and enthusiastic about life.

When we focus on facts, we steal that enthusiasm.

Hi everyone! Here are our current March and April openings for the Dementia Simulation House:

https://calendly.com/—-248/dementia-simulation-house-experience?month=2023-03

This is an in-person experience, and it is located in Cedar Falls, Iowa. It is open to the community, and we would love to meet you.

Please note that this is NOT an experience for those living with dementia. They live dementia everyday, so they certainly do NOT need this simulation. Also, this is not an assessment for dementia.

If you work professionally with people who live with dementia and would like to bring your work team, click on business/organization inquiries here:

https://csbs.uni.edu/dementia-simulation-house

Also, if you want to support us financially, you can make a donation here: https://give.uni.edu/campaigns/26483/donations/new?a=5128769 or contact Dianne.campbell@uni.edu.

We are able to continue to provide outreach and education only because of our generous donors.

Feel free to email dementia.simulation@uni.edu with questions!