When Dementia Knocks

I am continually amazed at how we still think dementia is only about memory loss.

When I see Alzheimer’s and other dementias represented on TV, in movies, and on social media, I am frustrated at how these portrayals are often focused entirely on memory. Unfortunately, I sometimes see people in the medical profession present it the same way. Dementia = Memory loss.

But we’re only talking about a small piece of dementia when we talk about memory loss.

If you have dementia or know someone who does, you have probably become all too familiar with symptoms other than memory loss.

Today we will talk about one symptom that many individuals not affected by dementia are unaware of….hallucinations. Yes, people living with dementia may have hallucinations.

Let me add that the experience of dementia varies both by the disease causing the dementia (e.g., Lewy Body dementia, frontotemporal degeneration, vascular dementia, Alzheimer’s) and by the individual. Certain types of dementia are more likely than others to cause hallucinations. In particular, those diagnosed with Lewy Body dementia often experience hallucinations early in the disease process.

I tried to do a bit of research to see what percentage of people living with dementia have hallucinations, but I couldn’t find any statistics that I would trust. Do people with dementia always tell us when they have hallucinations? Obviously they don’t.

I will add that once a guy with Lewy Body dementia looked down at his shoes and said to me, “There are snakes crawling over my feet. I know they are not real but I can’t make them go away.”

Sometimes we identify a hallucination by behavior. We can’t experience another person’s hallucination, of course, but we can hear them talking to someone we can’t see. In other words, we experience a person’s response to a hallucination and have to connect the dots.

Here is what you need to know about hallucinations and dementia.

Hallucinations are sensations that appear to be real to the person experiencing them. When I use the term sensations, I’m referring to the five senses. A hallucination might mean you can see someone who isn’t there. It could also mean you hear voices. And those hallucinations are often as real to the person experiencing them as your reality is to you.

Hallucinations are not limited to sight and hearing. They can involve other senses as well. Someone experiencing a hallucination may insist they smell apple pie and be argumentative when are told there’s no apple pie in the kitchen. They may taste something metallic as they eat their mashed potatoes and start digging through them with their hands to find the problem. A person can also experience body sensations like spiders crawling all over their body. They may pick at their skin until it bleeds.

Hallucinations can cause people living with dementia to have significant anxiety. Their actions might not make sense to us unless we are aware of the hallucination, and often times our reaction to the hallucinations increase rather than decrease that anxiety.

Think about it.

What would you do if there was a large man standing in the bathroom watching you when you showered? What would you do if smelled rotten fish and no one would help you look for the source of the odor? What would you do if there were bugs crawling around in your underwear and people refused to help you change clothes? What would you do if your food tasted so terrible that it was inedible and no one would bring you anything else to eat because they insisted you were being “difficult?”

You’d probably be argumentative. Maybe you’d be aggressive. Or perhaps you’d just go to bed and cry because no one was listening to you. But when people with dementia do these things we say they are a behavioral problem.

If you are interested in watching a video clip on interacting with people living with dementia through hallucinations, I just happen to have one for you: Teepa Snow on Redirecting Hallucinations

There are medications that doctors often try to use in minimizing hallucinations. However, I would suggest doing an inventory to see if there are potential changes that can be made to minimize hallucinations without (or perhaps in addition to) prescriptions.

Here are some ideas:

• Make sure that a person who is prone to hallucinations gets adequate sleep. Lack of restful sleep can trigger hallucinations in those living with dementia. (I also know of a mother of newborn twins who had hallucinations because she had literally not slept in 3-4 days. Our brains don’t work well when we don’t sleep. Surprise.)
• Change the environment. If a person has a recurring and bothersome hallucination in a certain place, either avoid that place or change it in some way. If someone looks out a certain window and sees a threatening figure, put curtains over the window. If a person tends to hear a scary voice when they sit in the lounge, find an alternative place for them to sit.
• Dehydration and starvation can make hallucinations more likely among those who experience dementia. Someone I know took her panicked grandma to the emergency room because her hallucinations had become more frequent and anxiety-provoking. Fortunately, the hospital figured out that she was severely dehydrated and got some fluids in her ASAP. Her hallucinations didn’t go away, but they became less frequent.
• Use headphones and music. I know of a man with Alzheimer’s who experienced auditory hallucinations. He heard voices, and he paced around the nursing home all day—trying to literally walk away from those voices. His family got him an iPod and put some headphones on him. His quality of life improved dramatically. The voices had been drowned out by Johnny Cash and Peter, Paul, & Mary.
• An infection can make someone more likely to hallucinate. When there is a sudden onset or steep increase in frequency, my first words of advice are to run a urinalysis. I am always surprised how often the change is due to a urinary tract infection.
• Listen. Just listen. If you experienced something that scared you or made you sad, you’d want to tell someone about it. Imagine if that person dismissed you or told you that you were making up the story. What if they just changed the subject? Wouldn’t it feel like they didn’t care? You’d feel unimportant and not valued. Why would people with dementia feel any differently in that situation?

Did I mention dementia isn’t just about memory loss? Where can I get one of those sandwich signs? I’ll print this message on it and stand out on the street with those people promoting the sale at the furniture store and the used car dealership.

In order to support people living with dementia and their caregivers, we need to start understanding that dementia leads to deficits in all cognitive function…not just memory. In order to promote our dementia-friendly community movement, we have to understand the experiences of people living with dementia. We need to identify areas in which we can improve services, resources, and environments for this population.

We can’t do this if all we acknowledge is memory loss.

The world would be a lot different if we told people how we are when they asked.

You get to work in the morning. Your co-worker says, “Hi. How are you?”

My co-workers are good people. I think they care about me. But in that moment does he really want to know how I am?

Nope. He wants to greet me. He wants to acknowledge me. As he’s rushing to get ready for some meetings or trying to get his inbox down to a manageable level, he doesn’t want to know how I am.

I say, “Fine.” I ask him the same question. He says “Fine.” We get on with our day.

Another example…I’m currently writing at my favorite coffee shop.

As I walked in, I was greeted by a barista with an enthusiastic “Good morning! How are you?”

I said, “I’m good!”

But what if I didn’t?

What if I said, “I’m awful” or “I’m terrible?” Or even, “Absolutely shitty?”

He’d likely feel obligated to ask why or make a consoling comment. He’d have bitten off more than anticipated by asking how I was.

When people ask how you are, how often are you honest? How often do you say you’re fine when you’re not?

What if you said to the bank teller, “Oh, I’m not good at all. Today I have to visit nursing homes with my dad and I’m so stressed out I have diarrhea?”

What if you said to the person behind you in line at Target, “I am horrible. My mom was just put into hospice care and I want to tell her that I love her but she has dementia and I don’t know if she even hears me?”

What if you told the woman doing your pedicure, “I’m terrible. I was diagnosed with Alzheimer’s earlier this week and don’t know how much longer I can work or how we can pay for my future care?”

To be fair, there are times I’ve been a bit more forthcoming with strangers and acquaintances. Many times, they seem ill equipped to deal with my response. Sometimes they are beautifully supportive. But sometimes it just feels good to say something other than “fine” when I’m not “fine.”

When I think about this, my mind does a rewind to when my grandma was dying. She has been diagnosed with cancer a few days before, and I planned to stay at the hospital with her that night. We knew she had a few days (at most) left.

I was hungry and decided to venture out to get some dinner. It was later than I had realized, and I couldn’t find anything promising. I pulled into a Starbuck’s figuring I’d grab something frosted and baked and count it as dinner. Calories don’t count when your grandma is dying.

“Hi. How are you?” the teenage barista asked.

I wasn’t quite sure what to say, so I went with “fine.”

“What are you up to tonight?” he pushed. He wasn’t going to make this easy.

I didn’t have the mental energy to come up with a lie. I told him I was staying with my grandma at the hospital.

“Oh,” he said sympathetically. “Tell you what, I’ll sneak in a free cookie for grandma.”

Ugh. Where do I go with this?

My answer surprised me. I said, “She’s done eating.”

Looking back, I don’t know why I didn’t just accept the cookie.

“For the day?” he asked.

“No, forever,” I said. “She’s finished with eating for her life.”

Yeah, this conversation had just gotten weird.

He gave me a funny look and said something like, “How can she not eat? Everyone has to eat.”

I’m a gerontologist, so I remember my answer going something like this, “People don’t need food when they’re at the end of life. Actually, food can make the process more uncomfortable, so you shouldn’t force it.”

We just looked at each other. I wasn’t sure where he was at, so I went on.

“She’s dying. Like, really soon. Maybe tonight or the next few days.”

The kid looks at me in the most kind way, and says, “How ARE you?”

It was a totally different “how are you” than the one I received when I entered. The intention seemed different. When I walked in, he asked as a friendly but surface gesture. This time it was different. I felt cared for.

At a rough time, this Starbucks barista who probably wasn’t old enough to vote made me feel cared for.

My grandma died in the middle of the night.

I’ve thought a lot about how we ask people how they are and don’t really want the answer. We want them to say they’re good so we can get on with our day. It’s a greeting, really, not a question. What bothers me is that it puts us in a position where we are obligated to pretend things are okay when they aren’t okay at all.

I try not to ask “How are you?” when I’m moving. If I really want to know the answer (which I should if I’m asking the question), I should be still to listen rather than walking away. I try to not ask “How are you?” unless it’s really a question and I’m prepared to hear the response.

If you are a care partner or a person living with dementia, you sometimes say you’re good, okay, and fine when that’s not the truth. Sure, you’re functioning in public. You can make appropriate eye contact and smile. You got yourself out of bed and showered. But sometimes you’re really struggling.

I know this because many of you lie to me. I talk to you and you say you’re good. We talk more and I realize you’re not good.

This is a reminder to all of you as well as to myself….many of the people who say they’re fine are not fine. How many of the people you come across in a day are struggling?

They’re struggling with care responsibilities. They’re struggling with a recent diagnosis. They’re battling depression or anxiety. They haven’t slept in two days. A recent financial crisis has left them close to being homeless. They’re recovering from a stroke.

There are enough crises to go around, aren’t there?

People who are struggling don’t always tell you they’re struggling. In fact, they often tell you they’re doing just fine.

I guess that’s why we should be kind to everyone.

 

 

 

 

Do or do not. There is no try.  –Yoda

I don’t know if you take your life advice from a Star Wars character, but in case you do, I’d like to point out that I think this is a bad advice, especially for those living with dementia and their care partners.

I think I get what Yoda is saying.

My interpretation is that you should commit to what you are doing 100% and not pull back when obstacles are put in your way. Go forward full force with no hesitation. If you say you are trying to do rather than doing, you allow doubt to creep in. And you probably won’t succeed.

There are times in my life that this mindset has been helpful. Last summer I worked as hard as I’ve ever worked at anything to run a half marathon under two hours. During training, I didn’t think “I’m trying to run a half marathon under two hours.” I committed to the goal and thought, “I will run a half marathon under two hours.” And I hit the goal…with 12 seconds to spare. (Side note: An elite runner recently set a goal of running a FULL marathon under two hours and squeaked under. I can run 13.1 miles in the same amount of time it takes the fastest marathoner ever to run 26.2.)

I set another goal this summer for running. I had the same mentality. However, in July I found myself literally sitting on the side of a trail with a hip flexor injury. I couldn’t find a ride home even after I downloaded both Lyft and Uber on my phone (there were no vehicles out in my town). After limping home, I put some ice on it.

And I went running the next day. Once again I limped home. I did this for the next week or so. I had to get some miles in if I was going to reach my goal, so I kept pushing it. Do or do not. There is no try.

Finally, I realized I had to quit. I hadn’t succeeded. I tried. I really tried. I didn’t achieve my goal, but it was an attempt. And I think I deserve credit for my “try.” But I didn’t make it to the start line.

There are plenty of times in life that the “do or do not” mentality just doesn’t work. And there are times I give people credit for trying…even when they end up not doing.

Someone I know who is living with early stage dementia said she’d go on a shopping excursion with friends. She woke up that morning feeling anxious and disoriented. She thought she’d feel better if she showered. She showered. She didn’t feel better. Then she put on some makeup and had some coffee. As she sat drinking her coffee, she realized she wasn’t up to going. She called to cancel. She tried.

Doug, a man whose wife has Alzheimer’s, set out to give her a bath one evening. She was agitated and reacted as if she were in pain. He gave her a few minutes to regroup and tried again. This time she didn’t seem to recognize him at all. He decided he would do the bath tomorrow. He tried.

My friend and her husband who has early stage frontotemporal degeneration go for a walk every night. Yet, once in a while, her husband struggles with his balance. They get a few steps from the house and turn around dejectedly. They tried.

To say “there is no try” negates what people living with dementia and their families do everyday. You are trying, and I see you trying. It’s not easy and sometimes it’s a giant dumpster fire. Sometimes you have to accept it’s a trying day and not a doing day. You have to shrug and keep going. You tried.

Life with dementia disrupts our plans. It gets in our way. What we wanted to do might not be doable…or perhaps it’s not doable in the way we expected or it’s not doable at this time. Sometimes we don’t succeed.

When someone says they’ll try to take their mother who is living with dementia to a family social event, it’s not that they’re wishy-washy about committing. It’s that they understand that they and their mother do not have complete control of the situation. They don’t know if Mom will be having a good day or bad day.

In the “do or do not” mentally, you take Mom even if she’s having a bad day. If you understand dementia, you realize that’s not a good plan. You tried to take her, and it just didn’t happen. Perhaps a few family members can visit her at the nursing home later in the week.

It’s okay to try and to not succeed. If you succeed every time you try in life, you’re not trying enough things, and you’re setting your goals too low. There is no shame in trying and failing. In fact, I think failure is one of those things that binds us as human beings.

You failed? Hey, I’ve failed as well. It sucks but we’re both still moving on. Let’s keep trying.

Unlike Yoda, I think there is a try. I think there’s value in the try. 

If you’re a person living with dementia or a dementia care partner, I know you are trying. It matters that you are trying–even when you fail, bail, or go back to bed. You’re trying.

And I’m rooting for you.

A college friend of mine, Holly, reached out to me recently about her grandparents, Nina and Del, who had just moved into assistant living. (I’m changing their names here because Holly worries about what her family might think of her perception of the situation.)

Nina has Alzheimer’s, and Del has a disease that caused paralysis in his lower body. Neither were excited about the move, but Del knew that his physical limitations meant he couldn’t care for Nina at home any longer.

I remember Nina coming to visit the residence hall often. What I remember about her is that she was one of those people who had an opinion. Anything you talked about—she had an opinion. It didn’t matter if she knew anything about the topic.

I have one vivid memory of Nina visiting our residence hall. It was during the Clinton impeachment, and she had opinions. I kept trying to delicately change the subject. It didn’t work. Holly and I laughed about it after.

On a different visit, Nina unclogged the sink in my dorm room. Then she gave me a stern lecture about how to avoid getting that much hair in my sink again. Her suggestion? A haircut. She told me my hair was unnecessarily long. In my defense, it barely skimmed my shoulders.

In appearance, she was “simple.” And I don’t mean that she wasn’t attractive. It was just that she limited herself to the bare minimum. Jeans. A t-shirt. Nothing frilly. Her hair was cut short, almost in a buzz cut. She wore no makeup and no jewelry. There was nothing unnecessary about her appearance.

Holly went to visit her grandparents a few weeks after they had moved into assisted living. She went to their room, and Del gave her an exasperated look.

“Wait until you see your grandmother,” he warned.

And just then Nina walked in…in full makeup. And full might be an understatement. Perhaps extraneous would be a better description.

Black liquid winged eyeliner. Bronzer that made her look somewhere between sun kissed and orange. Eyebrows painted on. And the lipstick.

“What do you think?” she asked excitedly. “I feel BEEE-YOU-TEEEE-FUL.”

Once a month, the assisted living hosts a group the female residents call “the beauty shop girls” once a month. They’re students at a local cosmetology college and volunteer their time to do makeup and nails for the residents.

Del told Nina it wasn’t something she’d enjoy, but a few female residents came around to invite her and away she went. Del was convinced she’d be back in the room in a few minutes…once she figured out that this activity wasn’t for her.

One of the cosmetology students asked Nina if she liked to wear make up. She said she had never tried it.

When asked if she’d like to try it, Nina told the student, “Yes, do it like yours.”

And so she did. Nina ended up with the trendy make up style you might expect to see on a college student going out for a night on the town. She was so proud.

Despite her stopping to look in every mirror to admire her new look, Del was not impressed. He kept telling her that she didn’t wear makeup. He even told the staff that she shouldn’t be invited to this event next time.

When staff told him how much she seemed to enjoy the makeup, he said that he didn’t care.

“She wouldn’t want this,” he kept saying. “She’d be embarrassed.”

She participated in a few other events that she would have had no interest in before. She did crafts…which her family found ironic because Nina had always said that crafts were for people who didn’t know how to do real useful things with their hands. She sang along in the music activities, something she wouldn’t have been caught doing years ago. She even did the hand motions that went along with the songs.

Del kept saying, “She doesn’t do this. It isn’t her.”

The family was frustrated that Del couldn’t see that she enjoyed these activities. He told everyone she’d be embarrassed if she could see who she had become. It wasn’t her. 

Del was prepared to the memory challenges that Nina’s diagnosis would bring. No one told him this would change her personality. No one told him she’d be doing things she wouldn’t have been caught dead doing just a few years before.

A few family members from out of town came to visit. They hadn’t seen Nina for a couple years, and they were stunned at the progression of her disease.

But there was something else….they liked the new Nina (as they referred to her). Nothing against the old Nina, of course, but new Nina had a certain lightness and joy about her.

Old Nina and new Nina had some things in common, but it was apparent that they were different.

To my friend, loving her grandma meant letting go of the old Nina. The family adopted that terminology…new Nina and old Nina. I’m not sure I would suggest using that terminology, but it helped to free them from comparing Nina to who she was in the past and accept who she is now. It helped them to accept that Nina had changed.

The new Nina is open to wearing winged eyeliner. She has fun doing elementary craft projects. She convinces everyone to join in the sing along. She dances. And—although she had never let her family have a dog because she just didn’t like them–she has become quite attached to the dog who lives at the assisted living. Yes, new Nina is dog person.

New Nina gets confused. Sometimes she wanders the halls looking for family members who have passed away. She struggles to remember why she lives in this place and where her family is.

But most of the time she seems happy.

My friend confided in me that new Nina is in some ways more likable than old Nina. Old Nina criticized her for not having a clear career path. New Nina tells her she is beautiful and can’t remember what she does for a living. Old Nina made strong and sometimes rude criticisms about her parenting. New Nina just giggles with her kids.

Holly took Nina to get a pedicure, which they both enjoyed. One day they went to a paint-your-own-pottery place, and Nina excitedly painted a dog dish for the dog at the assisted living. 

“Is it bad that I enjoy being around new Nina more than old Nina?” Holly asked.

She didn’t say she loved new Nina more than old Nina.

There’s nothing wrong with enjoying the person in front of you right where they are in that moment. Black eyeliner and all.

Del isn’t there yet. He needs old Nina. That was his Nina, and he’s not interested in getting to know a new one.

I can’t blame him. I can’t imagine how hard it is to see your partner change so dramatically.

But I hope he comes around. New Nina sounds fun, and I don’t want him to miss out.

 

 

 

 

A few years back, I got an email from someone who worked for a website that provides resources for seniors. She asked me to write a short article on holiday gifts for people living with dementia.

She suggested that perhaps I could make a list of items, maybe with links to purchase those items, and describe why those items would make good gifts for those with dementia.

When I received the invite, I was feeling overwhelmed, so I declined citing my busy schedule. I also have a firm rule about not promoting certain products and services. That’s out of my comfort zone. (I’ve been approached many times about mentioning products in my blog…and I just can’t enter that realm.)

However, there was another reason the project didn’t appeal to me…writing an article with specific gift suggestions for those living with dementia implied that those living with dementia want the same gifts.

I frequently remind myself and others that people with dementia don’t share a brain.

Once I told a group of people that individuals living with dementia don’t like to be called “honey” or “sweetie.” A few weeks later, I met a woman with Alzheimer’s who said she knew the nursing home staff loved her because they were always calling her “sweetie.”

My statement had been proven false. Not all people living with dementia dislike being called “sweetie.”

I had done something I try not to do; I had made a blanket statement about people with dementia. While I don’t recommend we make calling those with dementia “sweetie” our protocol, I can’t speak for all people with dementia. I do not know the likes and dislikes of every single person with dementia.

To assume these individuals are alike denies that they are diverse humans who have lived interesting and rich lives. They’ve been impacted by genetic, familial, and societal factors since before birth. They have been impacted by dementia, of course, but dementia doesn’t negate the impact of other factors.

I should also add that a person with dementia doesn’t speak for all people with dementia. If one person with dementia tells me that they don’t enjoy live sports because they are too anxiety-provoking, I shouldn’t assume that all people with dementia avoid sporting events. If one person with dementia tells me that they prefer to not be hugged, I shouldn’t assume that all people with dementia will be upset by a hug.

People with dementia are just as different from each other as people without dementia are from each other.

Different backgrounds. Different religions. Different political views. Different hobbies.

So what do you get someone with dementia for Christmas?

I know someone with dementia who ran a half marathon in the spring. I know another person with dementia who gets up every morning at 5 am to go to work at a local bakery. I recently met a guy with dementia who spends his time traveling around with his wife in an RV. And then there’s a woman with dementia at a local nursing home who is now in hospice.

I know people with dementia who are in their 40’s. I know people with dementia who are centenarians.

People with dementia live at home with their families, alone, in memory care communities, in senior apartments, in nursing homes.

How do I write a top ten list of gifts for a group this diverse?

And how do I suggest gifts for people I’ve never met?

Dementia is an umbrella term. Under this umbrella, we have diagnoses like Alzheimer’s, Lewy-Body dementia, Parkinson’s disease with dementia, frontotemporal degeneration, and vascular dementia. Dementia itself isn’t actually a diagnosis. It’s a constellation of symptoms involving deterioration of the brain.

So what Christmas gifts do you buy for someone who has a condition involving deterioration of the brain?

Let’s talk about a different medical condition. For the sake of discussion, let’s talk about anxiety. I was diagnosed with an anxiety disorder about 20 years ago, so I decided to do a web search to see what gifts are recommended for those with anxiety. After all, these should be things I want for Christmas, right? Maybe I can find some stuff to put on my Amazon wish list.

Here’s what I found:

An assortment of soothing teas. (I hate tea. I think it smells like urine.)

Dark chocolate. (I can’t say I don’t like dark chocolate. But if you know me, you know I try to keep sweets and candy out of our house.)

Cuddly plush toys. (If you give me a cuddly plush toy, I will give you a funny look. What exactly am I supposed to do with this stuffed tiger?)

A poster that says “F*ck Anxiety.” (To be fair, I don’t hate this. But I don’t know where I’d hang it.)

A self-help book on reducing anxiety. (I might actually be angry on this one. So you know what I need to do to cure my anxiety? So you’ve got all the answers?)

Therapy sessions. (Oh my goodness. Don’t you dare even try this. I’m picturing a group of friends at a holiday party saying, “We all went in together and made you an appointment with a psychologist!” No. Just no.)

Gift certificates for massage. (Okay. Yes. This is right on. Please buy me this for Christmas, everyone.)

Lists of this type imply that: 1) It’s your job as a gift buyer to help me me cure/treat my medical condition (it’s not), and 2) You should choose a gift related to my medical condition rather than choosing a gift based on what you know about me as a human being.

Since I was asked to write an article about gifts for those with dementia, I assumed that other people had written similar articles. I googled, and I was right.

There are quite a few suggestions for gifts for dementia patients…and I have a problem with that terminology. You don’t buy a gift for a patient. You buy a gift for a person. And a person’s diagnosis should not be the primary factor in what you buy that person.

Nevertheless, the internet suggests the following gifts for people with dementia: Classic movies, CDs of favorite oldies music, shoes with velcro ties, sweatsuits, dolls, fluffy stuffed animals, large clocks, giant calendars, location devices for someone who wanders, and automatic medication dispensers.

I’m just going to go out an a limb here and say that an automatic medication dispenser is not a good gift for anyone at any time. If someone needs one, buy it for them. Don’t count it as a gift. You might get the same response a friend of mine got when he bought his wife a Swiffer mop for her birthday.

As for the location device….Ugh. Can you imagine being excited to open gifts and realizing you’ve been given a tool so your family can track you? Think about that for a minute.

Oh, I’m so grateful you gave me this gift because you don’t think I’m capable of being responsible for myself. And now you’ll know where I am ALL the time? Merry Christmas to me!

Many people with dementia don’t like the idea of being tracked. And I can’t blame them.

If it’s tool that might be helpful, buy and buy it now. Don’t wait until Christmas. Trust me–it doesn’t count as a gift.

I know a lot of people with dementia who do not wear sweatsuits. I know plenty of people with dementia who would take those velcro shoes straight to Goodwill. I also have a lot of friends with dementia who no longer have a CD player because they use their iPhone or computer to play music.

Making a list of gifts for people with dementia implies that people with dementia are similar and have similar wants and needs.

A person’s medical diagnosis should not define an appropriate gift. We don’t buy gifts for patients. We buy gifts for people.

 

 

Sometimes I think I should rename this blog “Things That Frustrate Elaine.” And that’s being gentle.

For the past nine months, I’ve struggled with nerve pain. More recently, I have some level of numbness in my hands most the day. I’ve had an MRI. I have a diagnosis, two prescriptions, and a referral to physical therapy. This is something that will be chronic, but it seems like my health professionals are confident we can keep it under control.

In other words, don’t y’all be worried about me.

Yet, the input keeps rolling in…

They say that cherries are really helpful for inflammation. ( I want to ask, who is “they?” Are we talking about researchers at a university? Or people in the Facebook group “Cherries for Inflammation?”)

I know someone who had nerve pain and it was actually a tumor and then they died.

I heard that nerve pain has a lot to do with gut health. Do you drink apple cider vinegar?

I started doing (insert: yoga, meditation, inversion, Cross-Fit, prayer, supplements, special diet, cartwheels) and my pain got better. 

What you really need to do is retrain your nerves and teach them to be calmer. (This makes me picture myself doing a Powerpoint presentation in front of a hyper classroom of nerve roots.)

Ugh.

If you or a loved one has dementia (or cancer or a peanut allergy or Lyme disease, for that matter), you can relate.

Has someone made a ridiculous suggestion to you about how to fix the problem? Perhaps they implied that there was a simple solution…and you just hadn’t identified it yet. You might have been insulted, and you were justified.

I read an article about a woman with dementia who changed her diet and she got her memory back. (This article is currently circulating on Facebook…don’t get me started.)

They keep my great-aunt who has Alzheimer’s really stimulated by making her do puzzles all day. It keeps it from getting worse.

My grandma had hardening of the arteries. It got better when she stopped drinking.

You know you won’t get that Oldtimers if you have a glass of red wine a day, right?

Have you tried coconut oil or vitamin E? (Or milk thistle or lavender or iron pills?)

These comments come from well-meaning individuals who typically know next to nothing about Alzheimer’s and related dementias. In fact, they likely do not know the difference between the terms Alzheimer’s and dementia. And they often place a mysterious “T” in Alzheimer’s, referring to it as Alltimers.

Let me be clear here. If you haven’t had any education on Alzheimer’s and related dementias, I don’t expect you to be well-versed. I’m not judging people for their ignorance. I’m merely suggesting that those who are not well-versed in this area should refrain from giving advice.

Furthermore, when you tell someone that you or loved one has been diagnosed with a dementia-causing condition, you aren’t asking that person for a fix. You didn’t ask for advice. You aren’t expecting that person to give you a magical dementia cure.

You didn’t say, “Please vomit up every single thing you’ve ever read on the Internet about dementia.” You didn’t ask, “What outdated Facebook articles can you tell me about so I can cure myself?”

These people might be distant acquaintances, but they are often close friends and family. Maybe you’re caring for Mom, but your brother keeps calling from across the country with ridiculous “solutions.” Perhaps it’s a family friend who once read a book on Alzheimer’s and now has all the answers. Maybe you delete their texts because you don’t have the energy to respond. Or maybe you get in arguments because you think their ideas are off-the-wall.

Perhaps you feel like they just don’t understand. That’s the other thing about offering unsolicited magic cures…what you’re really saying is, “Your problem isn’t a big deal. It can be easily fixed. You just haven’t been smart enough to find the solution yet. But I have it.”

It’s dismissive.

When I lived alone in a house that was built in 1942, I used to go to Home Depot every other week with a house problem. I’d explain it to the Home Depot employee in their orange apron, and I’d expect them to give me a fix. There was one older guy in particular who seemed really invested in me not hurting myself or burning down the house.

They didn’t need to come to my house to physically fix the issue (although I would’ve paid top dollar for that), but they did need to walk me down aisles, tell me what tools to use, and give me a specific fix for the problem. And, bless their hearts, they’d do their best to give me useful instructions and send me on my way.

In this situation, I wanted someone to say, “Your problem isn’t a big deal. It can be easily fixed.”

But dementia isn’t like a leaky toilet or clogged gutters. There isn’t one simple solution out there–and if there were a solution, it would probably not come from a know-it-all who isn’t educated on dementia but spends a lot of time on social media and once knew a person whose mother’s uncle had a type of dementia that they can’t remember or never knew in the first place.

Why do know-it-alls do this? Why do people think they need to give us advice that is at best useless and at worst harmful when we mention we have a health issue?

I’m going to give people the benefit of the doubt here. They’re not trying to be jerks. I think we want to be helpful. We want so desperately to fix a problem. Let’s just solve this dementia thing so you can get on with your life.

If someone tells you that they have Alzheimer’s, Lewy-Body dementia, frontotemporal degeneration, cancer, HIV, arthritis, or osteoporosis, resist the urge to regurgitate every thing you’ve ever heard related to that condition. It’s not helpful. And it typically makes you sound like an idiot since you have not become an expert on this condition in the past five seconds.

If you think about it, so many problems in life are not fixable. That doesn’t mean we can’t help. Help is listening. Help is being supportive. Help is offering to watch someone’s kids or mow their lawn. Help is sending a random Starbuck’s gift card just because.

Dementia is degenerative. We may not know how to fix damaged brain cells, but that doesn’t mean we can’t help. It’s just that sometimes helping doesn’t involve fixing.

Unless you work at Home Depot.

I expect solutions from them.

 

 

 

 

My husband did an Ironman triathlon in 2014. I was proud of him, and I’m sure you could tell that in my voice if you were to hear me talk about it.

A 2.4 mile swim. A 112 mile bike. Then a 26.2 mile run. I can’t wrap my brain around it. Why anyone would choose to pursue an Ironman triathlon for the sake of a hobby is beyond me. But it does make me proud that my husband chose to do so.

I heard the same pride in someone else’s voice recently when he was talking about his spouse’s hobby. It was an older gentlemen I met at conference put on by the Alzheimer’s Association. He came up to me, holding hands with his wife. She smiled but remained silent. He let go of her hand only momentarily to give me an enthusiastic handshake.

He introduced me to his wife. He mentioned she now had Alzheimer’s, and she lived at home with him. I smiled at her, and she smiled back despite seeming that she wasn’t following the conversation.

“Do you know what she really loves doing?” he asked me with a giant grin of proud excitement. “She loves rolling up napkins and wrapping them around pens! And she’s good at it!”

I felt like he was almost bragging.

I was a bit taken a back. Here was a guy who was telling me that his wife wrapped pens in napkins with the same pride I had when I told people that my husband did an Ironman triathlon.

People frequently tell me about the “odd” behaviors of their loved ones with dementia.

My wife puts dishes in the dishwasher, even if they’re clean.

My husband does laps around the basement all day.

My mom likes to play in the kids’ sand box.

Typically, there’s a question that follows. The question is: “What can I do to get them to stop?”

And no one has ever bragged to me that their mom is good at playing in the sand box.

But this man wasn’t asking how to get her to stop wrapping pens in napkins. He wasn’t considering this an odd or annoying behavior. In fact, he asked me what other activities she might enjoy if she got such a kick of out of doing that.

I found a napkin and a pen (ironically)—and I wrote on that napkin a list of supplies he could get at Hobby Lobby or Wal-Mart. Crepe paper. Metallic wrapping paper. Fabric scraps. Shiny pipe cleaners. Colorful bendy straws.

We decided he should put all of these new supplies out of the kitchen table and sit with her. Then he’d see what happened.

And he was excited. I don’t even know how to convey how genuinely enthusiastic this man was about the plan we had created. He told me he’d go shopping the next day if he could get a ride.

I wish I had gotten his contact information to follow-up. I don’t even remember his name or his wife’s name.

But I’ve thought about them a lot.

I’m not an expert on love, but there’s something to be said for loving someone where they’re at. I’m sure he loved his wife when she didn’t have Alzheimer’s. I’m sure he loved her when they could have interesting conversations and go on adventures together.

But when I spoke to him, he wasn’t focusing on what she couldn’t do. He wasn’t focusing on who she no longer was. He was focusing on who she was now.

And, when her abilities were becoming more and more limited, he looked at her and saw a strength. He could’ve focused on a million weaknesses. He could’ve told me about the struggles and challenges of Alzheimer’s, but on this day he told me about her potential.

She was really good at wrapping napkins around pens. He celebrated that. He loved her where she was at.

And when she sat down and concentrated on wrapping those pens, it made him so proud.

Sometimes the people I meet are pretty dang amazing.

I used to say something that makes me cringe now…I used to say “Dementia is a marathon, not a sprint.”

I would use that statement to encourage people with dementia and their care partners to practice self-care. You have to take care of yourself if you’re running a marathon, right? You have to accept water at the aid stations, just like you should accept help from family and friends if you or a loved one has dementia. You need to not push yourself too much because you’ve got miles to go, and you need to be strategic about how you use your energy.

See? Dementia’s like a marathon.

Ugh.

If I spoke to you years ago and made that statement, please forgive me. It was a dumb thing to say. It isn’t the dumbest thing I’ve ever said—because I say lots of dumb stuff—but it’s pretty dumb.

Here’s the thing, friends. I’ve run a marathon. I decided to do it in the summer of 2012. I knew I’d have a flexible schedule that summer. I had undergone knee surgery the previous year and was feeling like a new woman. I was looking for a challenge.

I signed up for a marathon. I mean, what else do women in their 30s do when life gets stagnant, right?

It was on a particular date, obviously. I knew how my time I’d have to train.

I reserved a hotel room for the nights before and after the race. I looked up restaurants for the night prior to the marathon. I did those things about three months before the actual marathon. You can never be too prepared, right?

I finished that marathon. I wish I had been faster, but I finished.

I’ve heard people say that you’re a different person after you complete a marathon. I wasn’t. I was just me…with a marathon under my belt. That felt good, of course, but I can’t rank it among my most life-changing events. I might run another marathon someday. I might chose not to.

How, my friends, is running a marathon anything like dementia?

Both can be long, obviously, but I can tell you exactly how long a marathon is. It’s 26.2 miles. And then it’s over. Done. Where are my post-race snacks?

I’m sure everyone who has done a marathon counted down the mileage. 13 miles to go. 8 miles to go. 3 miles to go. And then .2 miles to go. If you’re a marathoner, you know that .2 is not insignificant.

If you’ve run a marathon, you know that well-meaning people shout “You’re almost there!” at mile 8 and you want to punch them. You’re not almost there. You know exactly how many miles are left.

Let me ask you this….

How long is dementia? How long will a person live with dementia? How long will a carer caregive? Exactly how long is this journey?

Although a marathon has an exact distance, dementia doesn’t.

I chose to do a marathon. As much as I complained about bloody blisters, lost toenails, chafing, and 4 am 15-mile runs, I made the choice to do a marathon. I wondered at times if it was a great decision, but it was always my decision. When I complained to a friend that I had to get a run in at 8 pm on a Saturday night, he told me I didn’t have to. I was choosing to do that run. He was right.

But dementia isn’t a decision. It’s not a choice. You don’t get to plan to get dementia at the “right time,” like I decided to run my marathon at the “right time.” And, if I had decided to sit down on the curb on one of those early morning 15-mile training runs, I could have sent my husband a text and he would have come to pick me up…well, as soon as he woke up.

You can quit a training run. You can drop out of a marathon. Sure, maybe it doesn’t feel great to quit, but you always have that option.

I wish you could quit dementia. I wish you could say, “Eh. This is really hard today. I’ll come back to dementia tomorrow when I’m more rested.” I wish you could say, “Dementia, this isn’t really working out. I’m done with this.”

Whether you’re a care partner or a person living with dementia, you can’t quit dementia.

Everyone made a big deal when I finished a marathon. In retrospect, the marathon was easy compared to the training, especially since I did most of the training solo.

But the second I crossed that finish line, I started getting voicemails, texts, and Facebook messages. I got a medal. More importantly, my husband drove me directly to Dairy Queen where I ordered a large Blizzard. It’s the only time in my life I’ve let myself order a large Blizzard.

You don’t get a medal when dementia is done. You don’t get to go to Dairy Queen. A guy I know recently lost his wife to Alzheimer’s. He had hoped for dementia to be over. He didn’t want her to struggle or live in pain any longer. But after she died, he said, “I wanted this phase of my life to be done. But now I just feel so empty.”

That’s the opposite of a medal.

I had a conversation with a close friend a few weeks ago. Her husband was diagnosed with cancer in May. He had inpatient chemo for 30 days and is now finishing up (fingers crossed) outpatient chemo.

She confirmed that cancer is no more like a marathon than dementia is. She and her husband did not, in fact, sign up for cancer online. They did not choose the date and place they wanted to experience cancer.

They did not, and still do not, know where the finish line is. Or if there even is a true finish line. Even if chemo does its job, there’s always a chance cancer will return.

My marathon might return, too. But only if I sign up for it.

And let me close by saying this—with the hope it won’t offend anyone.

Running a marathon is challenging, but if it’s the most difficult thing you’ve ever done, I’m glad for you.

Dementia isn’t a marathon. It’s not a sprint.

Turns out, it’s not a running event at all.

 

 

Good morning, my friends!

It’s time for me to take a break. I’ll be back in the fall. In the meantime, I’ll be running some of my favorite older posts on the Facebook page.

I’ve got a report at work I need to focus on. After that, we will be headed to the beach for a week.

While I’m gone, don’t forget to be kind to yourself.

I leave you with one of my favorite quotes:

“She believed she could so she did but then she needed a break.”

Maybe I added that last phrase.

See you later, alligators.

 

 

I had driven across Iowa on a hot and humid summer afternoon to give a presentation to staff at a memory care community. I couldn’t park close, so I had to walk for about five minutes to get to the building.

By the time I entered the lobby, I was sweating. Not sparkling or glowing or any of those other words women who don’t sweat much might use. I was sweating.

And I sweat a lot.

A friend of mine goes to a workout class with me and walks out looking refreshed. I walk out looking like I’ve been stranded on an tropical island for weeks and someone just rescued me…except I’m not that skinny. Ten minutes of exercise and my hair is drenched, my mascara is dripping down my cheeks, and my shirt looks like it’s just been pulled out of the washer.

I know there are medical conditions that cause excessive sweating, but I don’t have one of them. I’m just a woman who sweats a lot.

As I entered the memory care community on this particularly sweltering day, I saw a bench. I decided to sit for a minute and attempt to stop sweating before I walked in to do my presentation.

An older woman with a walker slowly made her way up to me. I greeted her, but she didn’t respond. She sat down next to me.

I figured she didn’t want to visit, so I pulled out my phone to check for messages.

Then she said, “You sweat more than the average girl, don’t you?”

I put my phone down. I hadn’t realized I was sweating quite that much. I told her that I did sweat a lot.

“It’s good. You get the bad stuff out faster so you can be a better person,” she explained.

I hadn’t heard that before, but I was intrigued. In fact, it was the most positive interpretation of extreme sweating that I had ever heard.

“Like toxins?” I asked.

“Oh no,” she said. “Like old boyfriends.”

“You sweat out old boyfriends?” I asked.

“Unless you want to keep them inside,” she answered.

I nodded. I certainly didn’t want to keep old boyfriends inside. I mean, let’s sweat those guys out and be done with them.

There was a short silence as I pictured tiny versions of my old boyfriends sitting on my skin until I wiped them off with a towel.

I asked her if she had sweated out all her old boyfriends.

She said, “No, I don’t sweat so much.”

Then she got up and shuffled on.

And somehow, I didn’t feel so self-conscious about sweating.

There’s something about this conversation that I love.

This woman didn’t introduce herself. She didn’t try to make small talk. She wasn’t commenting on the weather or complimenting my dress.

She went straight for my sweating.

Perhaps it wasn’t appropriate. Or maybe it wouldn’t be appropriate in most settings. Most of us understand that you shouldn’t go right up to someone and comment about what might be making them self-conscious in that moment.

But it’s par for the course when you sit down in the atrium of a memory care community.

If this woman hadn’t had dementia, we probably would’ve had some generic scripted conversation like “Hi. Hello. How are you? Good. And you? Fine. Isn’t it so hot out? When will it cool off?”

Sure, I’ve had lots of people with dementia make comments to me that aren’t kind.

A guy at a facility that I frequently visit often tells me I’m looking fat. Once a man with dementia told me my hair was scroungy like an alley cat.

I know that sometimes people with dementia lose their “filter” or social judgement as the condition progresses. This can mean hurt family members and awkward situations.

Yet, there is a part oft this departure from typical conversation that I enjoy.

When the person with dementia doesn’t follow the “social script,” I feel like I don’t have  to either. And there’s some barrier that breaks down.

A woman with dementia commented on my sweating. She didn’t ask me how I was or why I was visiting. She went straight for the sweating.

I didn’t expect that to come my way, but I leaned in. I didn’t just nod and smile. I wanted to engage.

And I got a reward. Now when I am sweating a lot I picture my old boyfriends squeezing out of my pores.

There’s something strangely fulfilling about that.