The Meaning of Life in Dementialand

Today we are talking about the meaning of life. I’m going to tell you why we are all here. Hold on to your hats…this is gonna be life-changing, friends.

Just kidding. (Keep in mind this is from the same woman who last week completely skipped #3 on a list of 10 things care partners need to know. I don’t know the meaning of life; I can’t even count to 10.) 

I consider myself more practical than deep. I’m not a pastor and I’ve only taken one philosophy class—and that philosophy class wasn’t my favorite class of my undergraduate career. In fact, I took it only because my boyfriend was taking it.

But let me start with this…

I was reading a story online a few weeks that gave me pause. A woman was told in the middle of her pregnancy that her child, according to the doctor, had “no chance at a meaningful life.” She and her husband had to make some difficult decisions. To be honest, I don’t remember what they decided and I can’t recall the outcome of the pregnancy.

What I do remember is that I stopped for a moment at “a meaningful life” to contemplate what that meant. Could someone live for only 30 minutes and have a meaningful life? Could someone be on a ventilator and have a meaningful life? Could someone without brain development have a meaningful life?

I am not proposing an answer to those questions. I get enough emails with negative comments about my blog….I’m not planning to venture to discuss a topic that forays into the pro-life/pro-choice debate.

But what is a meaningful life and what qualifies this doctor to answer that question?

Could the parents perceive a meaningful life when the doctor doesn’t see it?

Is what qualifies as a meaningful life subjective? Or individual to each person? I mean, there’s no rubric for whether or not someone is going to live or is living a meaningful life.

This doesn’t just apply to pregnancy, of course.

A woman I once met at a speaking engagement had a sister, whom I will call Elizabeth. Elizabeth was a career-oriented lawyer who had never married (or even had a romantic relationship) or had children (or had any interest in her nieces and nephews). She was independent, educated, wealthy, and a pretty big deal in the city in which she lived.

Elizabeth watched her mother decline and pass away from younger-onset Alzheimer’s and frequently made comments like “I’d rather be dead than live in a nursing home” and “Please shoot me if I get Alzheimer’s like her.”

This frustrated her sister, who interpreted these comments as “Mom is better off dead” and “I’d rather be dead than be like Mom is now.”

As luck (or genetics) would have it, Elizabeth was diagnosed with younger-onset Alzheimer’s. She retired from her legal career earlier than planned and spoke pessimistically of her future.

“I am not going to be one of those aimless idiots wandering around the nursing home with no purpose,” she’d said. “I’ll kill myself before that.”

As it turns out, Elizabeth’s Alzheimer’s progressed quickly and her sister made a decision that she could no longer live alone. Elizabeth and her family arrived at the nursing home with a few suitcases and a recliner. Elizabeth seemed sad but resigned to her new living situation.

But a funny thing happened.

Although she dreaded becoming someone who was purposeless, Elizabeth’s sister saw her develop a sense of purpose like she never had before. Elizabeth might have lost her identity as a high-powered lawyer, but she gained an identity as what nursing home staff referred to as a “cheerleader.”

No matter who came in her room, Elizabeth told them that they were smart, good-looking, loveable, and many times “perfect.” Nursing home employees said that they argued about who got to work her wing because being around her was such a joy.

Elizabeth’s sister couldn’t have been more shocked. She had never received a compliment from Elizabeth in all her life, but now when she visited she was told her she was “a ray of sunshine” or a “gorgeous woman.” More than anything, the anxiety and stress that had plagued Elizabeth during her life seemed to melt away. She seemed happier than ever. Joyful as a child without a care in the world. Was this is the meaningless life she had feared?

Elizabeth had given her family strict instructions to pursue limited medical inventions when she no longer had quality of life. When they had to make decisions, they struggled. She developed an infection and needed IV antibiotics. At one point, she broke her hip. Then she started experiencing respiratory issues. And heart issues. They evaluated whether or not to put in a pacemaker.

Elizabeth was unaware of the details of her health challenges. She remained positive and upbeat….and, according to her family, happy. Her family was left to determine when they should seek care and when they should not.

While she had expected that dementia would lead her to a life without meaning, her family saw that her life had meaning in a way that it hadn’t before.

But who decides when life has meaning? And who decides when it no longer does? Or, perhaps, life always has meaning no matter the circumstances.

If pre-Alzheimer’s Elizabeth could take a sneak peak at post-Alzheimer’s Elizabeth, what would she think? Would she still want someone to shoot her? Or would she recognize that she was making a positive difference in the lives of family and nursing home staff? Is that enough to qualify life as meaningful?

Would Elizabeth think so?

 

 

What I Think Care Partners in Dementialand Need to Know

I am working on a presentation for an upcoming dementia conference. The goal of my presentation is to educate family care partners and give them some coping strategies.

I’m either efficient or just lazy because I decided there was no reason to build this presentation from scratch. I have a file on my laptop titled “Dementia Presentation Materials and Stuff.” I opened that file to find about 15 Powerpoint presentations I’ve done for family care partners in the past five or so years.

I decided to take a look at those presentations. On some of them, I used unfortunate fonts, weird color schemes, and lame graphics. (I’m sorry graphic design friends….I used a lot of Comic Sans.)

But I found some common themes from presentation to presentation. In fact, I’m kind of a broken record.

I challenged myself to come up with the ten themes I hit on most frequently when I talk to care partners. I figured this would be a good representation of what I think is important for care partners to know…because it’s stuff I repeatedly talk about. Now I’m thinking about making this into some sort of handout or poster.

And here are those themes:

1–You can’t fix dementia.

I don’t care how much you love someone or how many books you read. It doesn’t matter if you feed them the perfect diet and travel to specialists across the country. At this point in time, we cannot repair the brain after dementia takes hold. So don’t beat yourself up when dementia progresses. You’re not doing anything wrong.

2–Connect; don’t correct.

When we correct someone, we decrease our chances of connecting with them. I know this is tough with family members. In many families (including mine), being right is important. Remind yourself that it’s better to make a connection than to be right.

3–Having dementia is tiring.

We don’t talk enough about the mental fatigue that people with dementia experience. The dementia brain has to work really hard to process information (and information includes…everything…sights, sound, tastes), so it frequently gets exhausted and needs a break.

4–Their reality is just as real to them as your reality is to you.

That guy your mom thinks is standing in the corner? He’s just as real to your mom as your mom is to you. And she might think you’re crazy if you don’t see him.

5–Sometimes a nursing home is the best option out of a bunch of not-great options.

Let go of the guilt. Placing someone in a nursing home isn’t a punishment. I’ve never heard anyone say, “I hate Dad and am looking forward to dropping him off at a nursing home.” If we all had unlimited funds to hire staff and redesign our houses, we could keep people with dementia at home—-but we live in the real word. Sometimes we have to choose a nursing home not because we love the idea but because it’s the best option we’ve got.

6–Dementia isn’t just about memory loss.

The change in personality? The moodiness? The paranoia? That’s not just Grandma being difficult. That’s dementia. Dementia is a constellation of symptoms–one of which is memory loss.

7–Dementia will change your relationships.

Accept that your relationship with the person living with dementia will change. Be flexible. Understand that what worked in your relationship before might not work now. And know that sometimes, in some relationships, some of these changes might be positive.

8–Dementia changes how someone experiences the world.

All the information we have about this world comes from our five senses. Dementia changes how we take in information through sight, touch, smell, taste, and hearing.

9–If you’ve met one person with dementia, you’ve met one person with dementia.

Dementia impacts everyone differently. Some people sleep more. Some people sleep less. Some people can’t stop eating. Some people refuse to eat. You can’t make a prediction about one person with dementia based on the experiences of others with dementia. Your loved one was unique before, and they are still unique.

10–This is a marathon, not a sprint.

If you see sudden changes, they are likely not due to dementia. For better or for worse, dementia tends to be a slow moving beast. That makes is especially important for care partners to take care of themselves.

Stay tuned next week when I talk about the meaning of life. Okay, maybe I don’t really know what the meaning of life is. But I am working on a blog post on dementia and meaningful life.

Oh, and have an awesome Monday!

 

The Things We Enjoy In (and Out of) Dementialand

Let me tell you what I did this weekend.

I traveled with my university’s softball team to an away series.

You’re probably think that this sounds fun…being outside, watching our team hit homeruns, getting to hang out with a great group of young women. You might think it’s awesome I get to travel around and support our student-athletes. You’d be 100% correct.

But let’s look at it this way.

What did I do this weekend?

Well, I rode a bus for four hours to watch 18 to 22 year olds play a game that revolves around a stick and a ball. I even got to help by tracking the number of times each team either swung and missed a ball thrown by them (without hitting it with that stick) or didn’t try to hit the ball when it was deemed hittable by this guy behind the plate that someone hired to make decisions about the game. However, I didn’t get to make a mark on my spreadsheet unless a player did this three times. Why three? I don’t know. I guess two isn’t enough.

And my duties didn’t stop there. Whenever a player hit the ball with the stick and no one caught it before it bounced and they started running, I had to track the number of white squares they touched. If it was more than two, I put a tally under “extra base hits.” Fortunately, I got to make a lot of tallies in this column over the weekend.

I also spend a lot of time cheering when college students put larger balls in circular structures ten feet in the air. And I get excited about college students who run around frantically trying to keep a white ball from touching the floor.

If I think about it too much, I realize that sports are weird. They’re my hobby as well as part of my job at the university. (How lucky am I to say that sometimes is a hobby and also part of my job?) But they are kind of random and bizarre when I overanalyze them and their importance to my own life and to society.

I mean, I was sad for days in March because our men’s basketball team lost a nail-biter at the conference tournament. And yesterday was a great day because four Panther softball players hit home runs.

When if you ask me about what I enjoy doing, one of my first responses might be “watching sports.”

Also at the top of my list is indoor cycling. A studio opened close to our house, and it’s my new jam. I’m usually there once—sometimes twice—a day.

One morning at 6:15 am the instructor said, “I want you to think about why you got up at 6 am to ride a bike going nowhere.”

That was meant to motivate, but it did the opposite for me.

Why AM I on this bike going nowhere?

I started thinking about the 7-10 hours I week I spend on that bike going nowhere each week. Although indoor cycling is great for my health, it’s also kind of a weird way to spend your time if you think about it. Wouldn’t I rather go somewhere than nowhere? And all I’m doing is sitting there on an uncomfortable seat making little circles with my legs.

But that’s how I spend my time.

Sometimes I ask families of those with dementia to tell me what their loved one enjoys doing. Usually I get a retrospective answer.

They enjoyed teaching kindergarten.

They loved to go horseback riding.

They enjoyed baking.

They liked to travel to Europe.

His main hobby was building porches and decks for friends.

I can’t say this information isn’t valuable. It’s great to know where someone has been.

But very few families tell me where their loved one is now.

Sometimes I push the issue a bit. I’ll say, “Tell me what she enjoys doing now.”

Often I get a funny look. They want to tell me about past accomplishments. Maybe there’s a certain pain in looking what the person enjoys now because, for the family, it often indicates loss.

The family members usually think for a few seconds. Then they respond tentatively because they don’t  know if what they are about to tell me is what I’m looking for.

She likes to wander around our house and rearrange things.

She seems to enjoy pacing around the nursing home and asking people about the weather.

She likes coloring.

She seems to like stacking playing cards and unstacking them.

She likes petting her grandson’s stuff animals.

For families, these are not hobbies, things someone enjoys, or ways to spend time.

They are just remnants of a person who used to spend their time in productive ways.

But are these things any different than riding a bike to nowhere or watching college students try to hit balls with sticks? Are their hobbies less meaningful than my hobbies?Can I say—without a doubt—that the way they spend their time is less valuable than the way I spend my time?

I can’t.

I’m not the universal judge of hobbies. There really aren’t any bad hobbies, unless maybe your main hobby is cooking meth or you consider drinking a twelve pack of Coors Light each night to be a hobby.

Maybe hobbies, like beauty, are in the eye of the beholder.

Why not, instead of disregarding what individuals with dementia enjoy doing, appreciate and encourage any new hobbies even if they seem like useless ways to spend time to us. After all, we all spend our time in ways others would label useless.

It’s not up to us to judge other people’s hobbies—whether or not those people have dementia. Maybe their hobbies aren’t our cup of tea. Maybe they seem trivial. Or just not enjoyable.

But we owe it to the people we love to support their hobbies, whether or not we understand them.

 

 

 

 

 

Truth, Lies, and Home Depot in Dementialand

A nursing home administrator was giving me a quick tour of her facility after I did some education for employees. A sign outside a resident room caught my eye. It read:

  1. Tell Mom that they are billing Frank (my uncle) for her meals.
  2. Tell Mom that Dad is at Home Depot.

The signature at the bottom was “The Family.”

It was written in messy cursive and the edges were tattered. It looks like it had been posted for quite a while. I asked about it.

The administrator explained that the resident, who I will call Lynn, had Parkinson’s disease with dementia. She tended to be obsessed with two topics: 1) to whom she should write a check for her meals, and 2) where her husband was.

From the time she moved into the nursing home, Lynn was worried about how to pay for her meals. She would tell her family and staff that she never got the bill for her dinner and was worried because she hadn’t paid. It was not uncommon for Lynn to have so much anxiety about this that she would cry. At one point, she was trying to give her jewelry to the dietary staff because she couldn’t find her checkbook to pay.

At first, they tried to tell her that the meals were free. But then she become focused on where she should send a thank you note. If they told her that she had already paid for the meals, Lynn would worry because she didn’t remember writing a check….and she wasn’t sure if she had that much money in her account. She wanted to know how many meals she had paid for and when she’d have to pay again. She got upset when no one could tell her.

Finally, her daughter figured out the solution. Lynn had a rich brother named Frank. Despite having a lot of money, Lynn was always critical of Frank because he never paid for anything. Because of this, they hadn’t spoken in over a decade. They family wasn’t even certain that Frank was still alive.

One day Lynn started asking for her checkbook and insisting she write a check to someone for her meals. Her daughter, without thinking, said, “They’re billing Frank.”

Lynn loved this. It became the standard response for family family and staff. She usually responded with something like, “It’s about time that old bastard paid for something. Send him my doctor’s bill, too!”

Lynn’s other stressor was locating her husband. She would insist that he said he would be there to pick her up. She worried that perhaps he had fallen ill or gotten in a car accident. She would stare out her window for hours–refusing to participate in activities while waiting for a husband who passed away years ago. It was heartbreaking.

At first, her family would remind her that her husband had died. She would be upset that he had passed away, but even more upset that she hadn’t been at the funeral.

“Who misses their own husband’s funeral?” she would ask, often in tears. “Everyone must think I’m terrible.”

They would remind her she was at the funeral. At times, they even showed her family photos taken at the funeral. She would argue that the photos were taken at family weddings.

Her family said that their reminder about her husband being gone was “gentle.” I would argue that there’s really no way to gently tell someone their spouse is dead….whether that death occurred yesterday or ten years ago.

Without intention, they were inflicting pain on Lynn. And the pain they were inflicting was without purpose. She would ask about her husband again within an hour. It was like giving someone a shot with a giant needle–but not injecting any medication. What was the point?

Her family realized this in time. Her daughter started saying Lynn’s husband was at Home Depot.

Why Home Depot? I guess that’s where he spent a lot of time. It was a family joke that Lynn’s husband could wander around Home Depot for hours, and he always came home with bags of unnecessary tools he would ever use. He was a great shopper but a poor handyman.

When told her husband was at Home Depot, Lynn would throw back her head and laugh.

“I should have known!” she’d say.

Her family realized that the two “rules” that they posted were key in reducing their mother’s stress. Telling the truth was only increasing her anxiety. Coming up with a standard response that alleviated their mom’s worry (and even brought her joy) made visits so much more enjoyable for everyone.

It was at a care conference that her daughter asked the staff, “How come no one told us it was okay to lie?”

I try not to use the word “lie.” I more frequently use “step into their world” or “therapeutic fib.” People tend to be more comfortable with euphemisms, right? I mean, that’s why we have euphemisms.

We prefer to say people “pass away” rather than die. We think it’s more polite to tell people we were “sick to our stomach” than to say we vomited. We prefer to say employees were “let go” rather than fired.

We shy away from harsh and blunt language in favor of something more sanitized.

And many people shudder at the thought that they are liars….even if lying is the best possible strategy in a situation that isn’t ideal.

The reality is that we are taught to feel guilty about lying. Honesty is one of the best qualities in a human being. Above all, good people always tell the truth.

When I was a teenager, I would have said the only acceptable reason to lie would involve an elaborate set-up for a surprise birthday party. In fact, I went through a stage in early adolescence where wondered how it was ethical for parents to lie to their children about Santa (and the Easter Bunny and the Tooth Fairy) but then punish their kids if they caught them in a lie.

Lying was wrong. Black and white. Liars not only got sent to their room and punished but also took a step closer to hell. The truth was always the way. You couldn’t have a positive relationship with someone if you weren’t honest.

But sometimes the simplest and most straightforward rules change. Maybe honesty isn’t always the best policy. Maybe it’s the best policy most of the time.

And sometimes you find yourself lying to the same person who taught you to tell the truth.

Because you love them.

Because you don’t want them to stress that they’ve been stealing meals.

Because you don’t want them to worry about why their husband is late.

Because sometimes dementia changes the rules of relationships.

And we adjust.

 

 

 

 

 

The Present Moment in Dementialand

Recently someone told me that they stopped visiting their grandma in the nursing home because she doesn’t remember the visits anyway.

Perhaps she doesn’t. Maybe she can’t recall you were there five minutes after you left. There’s a chance she’s going to tell the staff at the nursing home that no one ever visits her–when she often has multiple visitors in one day. So…what’s the point? Why waste your time?

But let’s back up.

Did you have a first birthday party? I bet you did. Do you remember it? I’m guessing you don’t.

Your parents knew you wouldn’t remember it. Yet they still bothered to buy you gifts and a maybe a special little round cake that they allowed you to put your hands it. You probably made a mess and everyone laughed. I’m guessing you had fun.

But you don’t remember it?

I guess there was no point in that first birthday party, huh?

Is the only reason to do something to create a memory? Or is there value in the moment itself?

Sometimes I wonder if the universe put people living with dementia in my life to help me grow as a person.

You see, I’m not good at living in the moment.

The other day I was overanalyzing a social interaction that happened twenty years ago. Literally twenty years ago.

And today I was stressed out about where people are going to park at a conference I’m organizing….the conference is four months away.

I live in the past. I live in the future. I don’t spend enough time in the present.

I was recently visiting a nursing home to do a staff education when I struck up a conversation with a resident and her daughter.

I asked how their day was going. I appreciated how the daughter was comfortable in the silence of waiting her mother to respond rather than answering the question herself.

“Well, I’m not sure what we’ve been doing, but we’ve sure been having fun,” the older woman responded.

Her daughter smiled. She didn’t chime in with what they had been doing all day. It didn’t matter. They’d been having fun. There wasn’t a need for more details.

Every once in a while, my husband says I’m being an Eeyore. And he’s usually right. But I’m trying to be more of a Pooh.

“What day is it?” asked Pooh.

“It’s today,” squeaked Piglet.

“My favorite day,” said Pooh.

Today might be Monday, but that’s okay.

It’s my favorite day–because it’s the only day I’ve got today.