Tag Archives: dementia

Friendship Inside (and Outside) Dementialand

alzheimers, dementia,

A wonderful former student of mine now works at a memory care community. A woman with Alzheimer’s, Angela, moved into the facility. To the rest of the world, Angela lost her husband to cancer about ten years ago. In Angela’s world, her husband had past away last week.

As you might expect with someone who lost the love of her life last week, she spent a lot of time crying. When asked to participate in activities, she said she wasn’t interested–because her husband passed away last week. She wouldn’t eat much. As with many individuals in grief, she had no appetite.

Some employees tried to convince Angela that her husband had been gone for ten years rather than a week. Instead of validating her feelings, the staff was telling her that her sadness wasn’t real. This only made her more upset.

After a few months, a new woman, Lou, moved into the memory care community. Lou also had Alzheimer’s. On her first day there, she found Angela crying in her room. Lou walked in, sat down, and asked Angela if she was okay. Angela explained that her husband had passed away last week. Lou gave her a hug. And they sat together most of the day. Angela talked about her life with her husband…their homes, their travels, their kids. Lou listened as someone does when their friend is struggling. She had no place to be and nothing to do. Her only focus was Angela.

The next day was nearly an exact replay of the day before. And so was the next day. And the next day. The staff was relieved that Angela had a friend. Lou’s family commented that Lou seemed to have more of a sense of purpose than she had in a long time. She felt needed in a way that she hadn’t felt needed since starting to show dementia symptoms. Sometimes life brings you the perfect friend at exactly the right time.

The staff assumed that Lou believed that Angela’s husband had passed away last week. While another person might tire of hearing the same stories about Angela’s husband every single day, Lou was hearing them for the first time. They thought that this was the value of their friendship–that Lou was a part of Angela’s reality. When another person might tire of expressing their sympathy day after day after day, Lou was doing it for the first time–every single day.

Or so they thought…

After about a month of friendship, Lou was on her way to Angela’s room when she told my former student, “I have to go see my friend. She thinks she lost her husband last week but he’s really been gone a long time. I feel so bad for the poor thing so I let her tell me the same stories day after day.”

“You know that her husband didn’t die last week?” my former student asked.

“Well, of course,” said Lou. “But I just keep showing up. It’s what friends do.”

Friends just keep showing up.

When I think of my own friends, I realize they are a lot like Lou. They keep showing up for me. I may not have dementia, but they do listen to me talk about the same issues over and over…and over. They are the themes of my life. And on this life journey, I realize that many of my issues are things that won’t ever truly be solved. They are issues that I must learn to cope with…sometimes by venting to my friends. And (my apologies, friends) I am sometimes like an Ipod on repeat, playing the same song continuously. When I consider the last ten years, I realize that I have the same redundant struggles. They just manifest themselves in different ways as my life changes. And yet my friends keep showing up. I do the same for them.

We are all like Angela in a way. We struggle, and we voice those struggles to those closest to us in an effort to be supported. It’s not a one time deal. Some of us complain about our jobs or our relationships. Some of us need to vent about parenting. We have persistent insecurities, weaknesses, and pet peeves. These are not things that we tell our friends about once and never again. They are continuous topics of conversation. If we didn’t care about our friends, we wouldn’t have the same conversations, with no resolutions, again and again. But we do it–because it’s what friends do.

Lou reminded me of something else that friends do. Lou didn’t try to tell Angela that her husband passed away ten years ago. She accepted Angela’s grief for what it was, and she never questioned whether Angela should feel sad or not. Angela felt sad, and Lou responded to Angela’s sadness. That’s all there was to it. We don’t judge whether our friends’ reasons for being upset are valid. That’s not our job. If our friend is upset, it’s our job to keep showing up…because that’s what friends do.

Maybe friendship inside Dementialand isn’t all that different from friendship outside Dementialand.

Contradictory Advice in Dementialand

alzheimer's, caregiving, dementia,

I was recently talking to someone who worked at the Alzheimer’s Association about some of the challenges of working with families and individuals affected by dementia. I mentioned that I feel like I give people contradictory advice. First, I tell them to live in the moment. Second, I tell them to plan for the future. Sometimes I give those two pieces of advice in the same sentence or on the same Powerpoint slide.

“But isn’t that what we really all should be trying to do?” said the woman I was talking to. “Whether we have dementia or not, shouldn’t we enjoy the moment but also prepare for the future?”

It occurred to me that she was absolutely right—life is about balancing the short-term and the long-term. Your short-term self wants to have a piece of cake and enjoy the moment. Your long-term self wants to consider your health and avoid the cake. Enjoying the moment too much could potentially be a detriment to your plan for the future, but if you’re always planning ahead and never have any fun, what’s the point of life?

I’ve sometimes struggled with the balance between enjoying the moment and planning ahead. I remember telling friends in college that I couldn’t go out one night because I had to work on a paper. They asked if the paper was due the next day. Nope. It was due in three weeks. I just wanted to get a jump on it. (I wasn’t very much fun in college. I’m a lot more fun now, actually.) Yet, as a college professor, I see a lot of students who error in the other direction in the balance between enjoying the moment and planning ahead. The point is that it’s a balance. You want to have fun in college, but you can’t have so much fun that you screw yourself over in the future.

Living in the moment has always been easier said than done for me. I don’t live much in the past. I don’t spend a lot of time replaying and regretting my decisions. It’s not that I’ve always made the right choices. It’s just that looking back can be a waste of time, and I don’t like to waste time. However, I’ve tried to live in the future. I’ve played the “I’ll be happy when….” game. I’ll be happy when I finish this marathon. I’ll be happy when I finish my PhD. And, spoiler alert, after both of things were accomplished…I was no happier. It has been my journey in working with people who have dementia that has taught me to live, laugh, and love in the moment–or at least to take a big step in that direction. I’m still a work in progress.

But there is a risk to always living in the moment. In order to maximize the possibility of success in the future, we sometimes have to do stuff that doesn’t bring us much joy in the moment. We have to pay bills when we want to spend our money on things that make us happy NOW. We can’t eat what we want all the time…or we end up fat and unhealthy. We have to go to work because if we don’t go we will get fired. If we all did exactly what we needed to do to enjoy every moment to the fullest, we’d all be broke, fat, and unemployed. It’s about immediate gratification versus delayed gratification. It’s about what we want to do versus what we should do.

Everyone has that one friend who is a lot of fun. They may be the life of the party. Maybe they drink a little too much. Maybe they don’t always make the best decisions (e.g., cheating on a partner, taking a few too many “liberties” with their job). Their life is sort of a train wreck. If you think about it, they live in the moment a little too much–without thought to the consequences. If you knew me in college, you may have seen me sitting awkwardly in the corner at parties admiring this person…thinking they seemed pretty cool and wishing I had their moxie. Now, more than a decade later, I’m thinking maybe my envy was a bit misguided. I guess life is all about balance.

A family negotiating dementia walks a fine line. My advice to them is all over the place. Find something to smile about. Start researching local nursing homes. Don’t be afraid to laugh. Talk about end of life decision making. Go over your finances. Plan some fun things to do together. Figure out what’s available from local agencies for respite care. I’m sure sometimes they want to punch me. I don’t blame them.

A family that focuses too much on living in the moment might be unprepared for the challenges ahead. They may have to choose a sub-par nursing home because they didn’t have a plan. They might have to make decisions about care in crisis mode. A family that focuses too much on preparing for the future might regret missing out on joyful time that could be spent together because they are dreading the decline of their loved one.

And I have to be honest here… If you have dementia or have a loved one who has dementia, there will be moments of joy and hope. However, there will be moments where you can’t find that joy and hope, even when you look as hard as you can possibly look. Those are the moments you just gotta survive. You have to make it to the next moment–where maybe that joy and hope will be within reach again.

There are days when you can smile and laugh. Then there are days where you just gotta hope that tomorrow is a little better. That’s the thing about living in the present….living in the present is great when you can find joy in the present. When you can’t find joy in the present, it’s okay to look to the future a little bit. And maybe that future is only five minutes away. Perhaps there’s something right around the corner that’s going to make you smile and laugh. You have to believe that.

I am working summer orientation right now. I do advising for incoming freshmen. The more I think about it, I realize that I give similar advice to individuals and families impacted by dementia and to college freshmen. I state it a little bit differently. I tell freshmen to have fun but not so much fun that they have to go back home and live in their parents’ basement. I tell those affected by dementia that they need to focus on the moment but set themselves up for success (and as little stress as possible) in the future.

But we all need to enjoy the moment while we prepare for the future.

As for me, I no longer opt out of fun events to work on things that aren’t due for another three weeks. In fact, I’ve gotten better at procrastinating. It’s all about balance.

Habits of Sane Caregivers in Dementialand

aging, alzheimer's, caregiver, caregiving, death, dementia, dying, families, hospice, lewy body dementia, pwd, , , , , , , ,

Sometimes I write for people with dementia. Sometimes I write for people who have no experience in Dementialand. But today…today I am writing for dementia caregivers. And, really, for all caregivers.

If you are a caregiver, things can get pretty rough. I can show you research studies on the rates of clinical depression among caregivers. Spoiler alert–they’re astronomical. (They’re high among caregivers and higher among caregivers of those with dementia.)

Your life has to be lived one day at a time…maybe even one minute at a time. You get angry. You want to say that you’re angry at the disease and not the person, but I know that sometimes it’s not always easy to separate a person and a disease when you’re living on a couple hours of sleep a night.

All caregivers struggle. Some struggle outwardly; others seems strong on the outside but bury their struggles inwardly. You are not alone in your struggle–but I know it seems that way sometimes. Maybe your family is supportive, but it’s likely some of them make your life more difficult rather than easier. I’m guessing some of them make you crazy. Maybe you’ve got some friends…but some of them probably just don’t get it, even if they try.

I’ve put together a list of habits that I typically see in caregivers that maintain their sanity. [And–let me state for the record–a caregiver that stays sane might sometimes feel like they are losing their mind. They might cry. They might get angry. Maybe they sometimes make poor decisions. They mess up (we all do, right?). They could be on Lexapro or another anti-depressant. But they get through…day by day…minute by minute.]

Habits of Sane Caregivers

1. They sleep. Sure, maybe some nights are better than others. But they find a way to sleep. And, when they start getting an unacceptable amount of sleep each night on a regular basis, they find a solution. Maybe this means having someone watch their loved one a few afternoons a week so they can take a nap. If anxiety keeps them from sleeping, they go to a doctor or a counselor. They understand that they can’t caregive without sleep.

2. They leave the house. I know a guy who cared for his grandma who had Alzheimer’s. At one point, he went over a week without leaving the house except to shovel and take the trash out. When other people heard about this, they thought of him as a hero. Staying in the confines on your home doesn’t make you a hero. It sets you up for depression and stress–which sets you up for sub-par caregiving. Get the heck out of the house once in a while.

3. They understand that others can give care, too. A husband I once talked to loved his wife so much that he wouldn’t leave her side….24/7. He didn’t trust anyone else to take care of her. He thought he was the only one capable. He had plenty of people volunteering to come over and stay with his wife for a bit, but he declined their help. Let go of the idea that you are the only one that can provide care. Maybe someone else isn’t going to do things exactly the way you do them. That’s okay. Accept help.

4. They have a sense of humor. I don’t know what makes you laugh. Funny movies. Videos of cute cats on YouTube. Conversations with friends. Comic books. Sports bloopers. South Park. Figure out what makes you laugh and actively seek that out. And don’t feel guilty for laughing.

5. They go to the doctor. The people who are the best about getting their loved one to the doctor when needed are often the worst at seeing the doctor themselves. And if you aren’t healthy, you can’t provide care. So go to the doctor for small health issues…so you don’t end up with big ones. I talked to a guy once who had a sinus infection but wouldn’t go to the doctor because his wife was dying from cancer. His sinus infection didn’t seem important when he thought about what his wife was going through. Ironically, it was his wife who finally told him that he needed to get his butt to the doctor to get some antibiotics–because he was getting increasingly irritable (or “pissy” as she said) since he didn’t feel well. You do the people around you a favor when you take care of your health.

6. They don’t feel guilty. As a caregiver, you mess up. Maybe you thought your wife only needed one pain pill, but in retrospect you should have given her two. Perhaps you tried to make dinner and it was a flop. Or you messed up the time of your grandma’s appointment and she was 30 minutes late. You gotta move on. Consider it a learning experience. Caregiving involves a set of practical skills, and we get better at those skills over time. When you make a mistake, don’t beat yourself up. Learn from it and move on. You have a limited amount of energy. Guilt is a complete waste of energy.

7. They understand that the goal is to have a good day. They understand that their loved one will not “get better.” They are realistic in understanding that decline is inevitable in the case of Alzheimer’s, Frontotemporal dementia, or a terminal cancer. Yet they get that tomorrow can be a better day, even when their loved one isn’t improving.

8. They forget about people who aren’t supportive. They don’t continue to count on people who don’t come through. It doesn’t matter if those people are family or friends. It doesn’t matter if they have known they for decades. They stop letting those people disappoint them. They find new people to support them. Sane caregivers make a conscious effort to surround themselves with people who don’t screw them over time and time again. And when people do screw them over, they don’t spend a lot of time calling them out on it. They don’t have the time to waste on that type of thing. In short, they don’t do drama. 

And a few final notes. If you are a caregiver, listen to me here. It is okay to eat frozen pizza a couple nights a week. It is fine if sometimes you don’t return a phone call. Your neighbors will just have to deal with it if you don’t cut your lawn for ten days. Don’t be too hard on yourself if your flowers die because you forget to water them. (Tip: Buy hanging baskets of flowers. If they die, throw them away and buy new ones. It’s what I do.)

I once overheard two women who were caring for their husbands with Alzheimer’s having a conversation about the demands of their everyday lives.

“You know what we need to do?” one said to the other. “We need to stop feeling bad about all this stupid shit.”

Exactly. 

The Good Life in Dementialand

alzheimer's, death, dementia, dementialand,

I met a woman at an event who told me that when she was diagnosed with Alzheimer’s she was given one and only one piece of advice from her doctor. It was that she shouldn’t let anyone put in a feeding tube when she reached the end-stage of the disease. REALLY?!?!?

I am generally not a fan of feeding tubes in most case of end-stage Alzheimer’s, but that’s irrelevant. What is bothersome is that this is the one bit of advice her doctor could muster. That’s it. The woman told me that she felt like she should stop by Walgreens and buy adult diapers on the way home–or maybe just check herself directly into a nursing home.

There may be a point where she and her family are faced with decisions about feeding tubes. And those are important decisions. I am huge proponent for discussing end-of-life options with families and medical professionals. However, they are not issues that need to be considered five minutes after being told of your diagnosis. I’m not sure I’ve ever used the phrase “putting the cart before the horse” before, but there’s a first time for everything.

As this woman told me about her doctor’s “advice,” she stood in front of me looking like any “typical” middle-aged woman. She was wearing a long flowery dress and heels. There was no wheelchair, no walker, no cane… If you saw her at the grocery store, you’d never guess she had been diagnosed with Alzheimer’s. There was definitely no feeding tube in sight.

I asked her how long ago she was diagnosed. She told me it had been about four years. Four years and still no need to consider the feeding tube. Four years and still living pretty well (although a little bit differently) most of the time.

It occurred to me that her doctor had told her how to die from Alzheimer’s. However, there was no one to tell her how to live with the disease.

From my perspective, we struggle to bridge that gap. Often there is much time to live between diagnosis and the drooling, bed-bound, disconnected individual that many of us picture when we hear the term dementia (and, of course, not everyone who has dementia will reach this point). Life may have to be adjusted in some ways, but it’s life. 

There’s been some movement toward teaching people to live and live well with dementia. It hasn’t come from the medical profession. In fact, it’s come from people living with dementia. They’ve realized that they had to search for resources after diagnosis, and they are helping others so they don’t have to search quite so diligently. One of the most amazing aspects of the dementia community is how people with dementia have connected–often online–to support each other.

They often vent about how we (as professionals and family members) just don’t get it. And you know what? They’re right. We don’t get it. I hope they realize that we are trying–or at least most of us are. We may say stupid stuff, but we are well-intentioned. I try hard, and yet I wish I had a dime for every regrettable thing I’ve said to someone with dementia.

We are putting more money into finding cures for most diseases that cause dementia than in the past. However, the support services and advice the medical community (with exception, of course) hands out at diagnosis is still pathetic. You leave the office knowing you have Alzheimer’s, or Frontotemporal Dementia, or Lewy-Body. But then what do you do? This isn’t some abstract, philosophical question. Literally, where do you go next?

Someone once mentioned to me that she was told by her family doctor that it was likely she had Alzheimer’s. She had planned to meet a friend for lunch after the appointment. She sat in her car–frozen–not knowing if she should go to Applebee’s with her friend or cancel her plans. She managed to text her friend a message that said something like, “Can’t do lunch. Might have Alzheimer’s.”

Then she went home and sat with her phone in her hand, wondering if it was appropriate to call her kids and tell them of her diagnosis, or if it was in bad taste to not tell them face-to-face. When she called her daughter, her daughter asked, “So is this better or worse than cancer?” They discussed this for several minutes and came to the conclusion that it depended on the type and stage of cancer.

She was working a part-time job and didn’t know if she should go to work the next day. Or maybe she should call in sick–because she had Alzheimer’s. Can someone with Alzheimer’s work? She had no idea. She actually called the doctor back to ask. He said it was fine to work…until it wasn’t fine anymore.

Most of the information available regarding Alzheimer’s and related dementias isn’t about life. And life, even life with dementia, is about more than preparing for death.

When I did a hospice training about ten years ago, I met a middle-aged guy with cancer. He had been in hospice for a few months. The volunteer coordinator had invited him to come talk to our group of volunteers. As his wife pushed his wheelchair into the conference room, I couldn’t help but think he looked pretty cheerful for a man with a few months to live. I don’t remember his face; I do remember that he was wearing a Hawaiian shirt and had a pierced ear.

He talked to us for about an hour, but I only clearly remember one thing he said. He told us, “There’s something between diagnosis and death. It’s called life.”

And that’s especially true of a disease like Alzheimer’s…when that life can last a long time. And for some people, life after diagnosis can be a pretty good life.

The reality (as ugly as it is) is that some people with dementia will need adult diapers. There may be decisions to make about feeding tubes and other end-of-life issues. But…truth be told…there’s a chance that every single one of us has this in our future–whether we have dementia or not.

But in the meantime, there’s life.

Passion in Dementialand (A Post About What Gets Us Excited)

aging, alzheimer's, caregiver, caregiving, dementia, dementialand, , , ,

A little passion goes a long way.

I’m not talking about relationships here. I’m talking about life. No one has passion for everything they do. We all have to do things that we don’t like doing. That’s part of living in the real world. But we gotta have passion for something or we’re sunk.

My passion is dementia. I don’t like dementia itself. In fact, I really don’t like dementia at all, but I get excited (maybe I should say “fired up”) about educating people about dementia and raising awareness. I cannot count the number of times I have been at a party and was engaged in an intriguing conversation about dementia with someone I had just met–except I was the only one “engaged” and probably the only one who found it “intriguing.”

My husband once joked that we might get invited to more social gatherings if I talked less about dementia. Or maybe he wasn’t joking. Someone once told me that everyone should be passionate enough about something to talk about it enthusiastically for a ridiculous amount of time at a party while boring everyone else in the room. Yep. I can do that.

When someone stops me at Target to ask a question about dementia and I don’t abandon my cart immediately to chat, there is a problem. You should worry about me. Maybe you should even considering planning an intervention of some type–because something’s not right.

I get excited about things other than talking about dementia. A part of me wants to tell you I’m passionate about classical music, art history, and expensive red wine, but I’m not. I’m passionate about college basketball, perfecting recipes for low-cal margaritas, and cheap white wine. (I’m known for buying wine on a clearance end cap at Walgreens. In my defense, our Walgreens has an underappreciated selection of alcohol.) And although these passions may seem less than refined to some, there’s no reason they are less valid.

Maybe you get the same feeling from listening to a full symphony that I do when someone on my team makes a three-pointer or takes a charge. It doesn’t really matter what triggers that feeling, as long as something does.

You may not be as passionate about this dementia stuff as I am (or maybe you are because you are reading this blog) and maybe you don’t like college basketball or cheap wine, but my wish for you is that you are passionate about something. For my stepfather who is a retired forester, it’s trees. If he ever shows up at our house and doesn’t sniff our trees to assess their health within an hour of arrival, I’m worried. One of my mom’s most interesting and notable hobbies is tie-dyeing. If you’ve seen pictures of her, you should know she tie-dyed those t-shirts herself. If I ever get out her tie-dye supplies and she says she’s not really interested in tie-dying, there’s an issue. I’m not saying that issue is dementia, although it could be. It might also be depression or perhaps another medical issue–or maybe just a simple rut. But I’m gonna wonder what’s going on.

When we think of dementia, we think of loss of memory. However, the more time I spend with people who have dementia, the more I realize that loss of passion (more than loss of memory) triggers hopelessness. If you wake up in the morning and have something to be excited about–no matter how big or small it is–there’s hope.

When I think about the individuals I know with dementia, I see many that have held onto a passion or developed a new passion. I know a guy who struggles to remember his wife’s name, but when he’s told that the St. Louis Cardinals play tonight, he’s excited. There’s a woman with Alzheimer’s who used to be a master gardener. She still finds joy in watering the flowers at the adult day center she goes to five days a week. And then there’s the family that tried to stop their grandma from reorganizing her closet every single day–because she had just done it the day before. However, organizing was her passion. It’s what she was excited to do when she woke up in the morning.

I find that families sometimes try to shut down the passions of their loved ones with dementia. Maybe they don’t seem purposeful or legitimate. Maybe they aren’t the same passions that the person had ten years ago. But here’s the thing…and this is advice that works both in and out of Dementialand…

We are not qualified to judge the validity of someone else’s passion. 

I have a friend who is a member of what we call the “sandwich generation.” She is sandwiched in caring for her mother with Alzheimer’s and her young children. One day she noticed her daughter and her mother playing together in the sandbox at a park. At first, she thought about how it looked like a typical grandmother-grandchild interaction. Then her young daughter left the sandbox, and grandma stayed there–playing like a child. My friend sat sitting on a bench, watching her own mother play in a sandbox all alone. She wasn’t quite sure what to think. Then she realized her mother was smiling as she sculpted pictures and designs in the sand with a rake.

You rarely see adults playing alone in sandboxes at city parks, so my friend was not entirely comfortable with this. However, as she thought about it more, she realized it really wasn’t all that different from a monk in a Zen garden raking sand as a part of their meditation. The more I thought about it, the more I realized that playing in a sandbox is no less valuable than how I spend my free time–watching college kids try to put a ball through a hoop.

She kept bringing her mom and her kids back to that same park. She learned to ignore the people who stared at the smiling woman raking alone in the sandbox.

We are not qualified to judge the validity of someone else’s passion. 

I have a lot of friends (both with and without dementia) who have passions that I don’t really get. I don’t have to get their passions to support them in pursuing their passions. And it doesn’t matter what they get excited about as long as they get excited about something. And who am I to say what they get excited about doing is any less valid than what I get excited about doing?

Because of the impact dementia has on the brain, people with Alzheimer’s and related diseases may become apathetic. Often we say someone has “given up,” but that’s not really the case. It’s an actual symptom. The less scientific explanation is that the part of the brain that control motivation and excitement is damaged. Sometimes I will see someone who has “dimmed.” They can’t get interested in stuff that used to interest them–and they can’t find anything to replace those interests.

People who struggle to remember and understand their surroundings may find it hard to be excited about much of anything as dementia progresses, but there are cases when passion remains although memory may have declined. And when that happens, there is a sort of beauty that amazes me.

I often think of a woman who told me about her mother with dementia that didn’t remember she had grandchildren. Her mother eventually moved in with her family and every single morning would seem a little bit surprised to see a couple of small children in the kitchen. When the kids would call her grandma, she would be over the moon–as excited as, well, a new grandma.

“Oh my goodness!” she would exclaimed. “Are these my beautiful grandchildren?”

She didn’t remember she was a grandma, but she still managed to be pretty passionate about it. The most amazing part of this is that her family chose to focus on her passion for being a grandma rather than her need to be reminded everyday that she was a grandma. Rather than being sad that she didn’t remember her grandchildren, they focused on the look of excitement on her face when she realized those grandkids were her grandkids. It was her enthusiasm that allowed them to cope with her loss of memory.

A little passion goes a long way.

Choices in Dementialand (aka Confessions of a Spoiled Dinner Brat)

alzheimer's, caregiving, dementia, dementialand, ,

At any given time, there are several blog posts in my “drafts” that I haven’t published. Sometimes they aren’t published because I think they are poorly-written and need some polishing. Once in a while I hold something back because I haven’t quite found the right words to explain what I want to explain. And then there are a few that I haven’t published because they are somewhat rambling and pointless.

However, this one has been a “draft” for quite some time for a different reason. I have not published this post yet because it will make everyone think I’m a spoiled brat. In a way, maybe I am.

Let me start by saying that my husband is a really good cook. Not only is he a good cook, he enjoys cooking. On the contrary, I am definitely not known for my cooking. And I don’t enjoy cooking nearly as much as he does. However, I do enjoy eating.

In the middle of any given day, he is likely to ask me, “What do you want for dinner?” He’s not asking which frozen pizza he should throw in the oven or if he should pick something up at Panchero’s (although both of these options are completely acceptable in my book). He’s asking what he should stop at the grocery store to buy and go home to prepare. Whether I say pasta, tuna steak, or an egg sandwich, he’s on it. Pretty amazing, right?

Well, yeah…except I hate the question “What do you want for dinner?” The great thing is that he’d go get and make absolutely anything I name, but that is also the struggle. Even though I’m a vegetarian who generally avoids fried food and doesn’t do spicy, there are probably a million options. That’s precisely why it’s such a hard question to answer. When he asks me what I want for dinner (especially in the midst of a long day at work), I usually can’t come up with a single idea.

I don’t mean to complain. The guy is willing to go grocery shopping and prepare dinner. You’d think I’d have the mental energy to make a decision about what we should have, but sometimes it’s just too overwhelming. When you can choose anything, sometimes it’s hard to chose anything. So when he asks me what I want for dinner, I usually say I don’t know or that I don’t care.

Choice is great. Being able to make our own decisions is what empowers us and makes us the people we are. If you think about some of the punishments that we hand out to criminals, an important factor is that we take away choice. People in prison don’t get too much choice about what to eat or when to go outside. Others make those decisions for them. This is a big part of why people in prison feel dehumanized and stripped of their identity.

While we don’t like our choices made for us, making decisions for ourselves takes mental energy. The other night, we went out for froyo. We were at one of those places where you top your own frozen yogurt and they weigh it to figure your price. (Total tab for my husband and me: Almost $15.) It’s great to be able to have choices in yogurt and toppings, of course. And, yet, I’m not sure choosing from 27 flavors of yogurt really makes a person happier than choosing from six flavors. That’s before you even get to the toppings. (I should add that we now have four top-your-own froyo places in town, so this all happens after we decide which one to visit.)

Evaluating and making choices, whether these choices are big or small, taxes our brains. There are times when we have so many options that we shut down and can’t make a choice. The brain becomes flooded and it’s just easier to not make a decision. I once had an international student in my class from Africa. He told me that the first time he went to buy laundry detergent in the US he looked at all the options and, completely overwhelmed, left the store without buying any. I recently read an article that said that women who have a ridiculous amount of clothes often look in their closet and say they have nothing to wear because the amount of clothing is overwhelming. For that reason, fewer clothes in a well-organized closet may make getting dressed in the morning less stressful.

Choices take mental energy for all of us, and the dementia brain may have even more limited mental energy. Decisions that require evaluating many options can be really difficult, even they are decisions that most of us consider minor and pretty inconsequential. What do you want to do today? What do you want for lunch? Where do you want to go? What do you want to wear? 

Sometimes we can help people (and not just those with dementia) by giving options. As people have more limited mental energy, the number of options should decrease accordingly.

Would you rather go to the park, the coffee shop, or the art museum today?

Do you want to wear your blue shirt or your red shirt?

A family caregiver I once talked to told me that she was worried about her mom’s appetite. She would often ask her mom what she wanted to eat. Her mom would say that she wasn’t hungry. A simple change in how she asked the question made a huge difference. She starting asking questions in a different way. She made her questions multiple-choice and limited the options.

“Would you like a turkey sandwich or a salad?” she would ask. Her mom would respond with her preference. It wasn’t that her mom wasn’t hungry. It was that she was overwhelmed by the question.

Not surprisingly, processing options may take longer for people who have dementia. Often we have the tendency to jump in and make a decision when someone doesn’t respond immediately. Or we ask the question again–in a louder voice. (Why is it so common for us to think someone will be able to process our question more efficiently if we yell at them when the opposite is true?)

When I was in graduate school and first started teaching college classes, I was frustrated that my students were not participating in the discussion when I asked questions in class. My major professor, who had thirty years of teaching experience, observed my teaching and gave me some helpful feedback.

“Elaine, obviously no one is answering your questions in class,” he said in his heavy Dutch accent. “You ask a question and no one responds because you don’t give them a chance. They don’t have time to process the question before you jump in and answer it yourself.”

I taught myself to slowly count to ten in my head (and tolerate the silence) after I ask a question to a classroom of students. Fortunately, my students seem to think silence is awkward so they jump in at about seven to answer–even if they don’t want to.

I’ve started using this same strategy when I talk to someone with dementia. To tell you the truth, I probably should use it with everyone. Because we perceive silence as uncomfortable, we often don’t give people time to process questions they are asked.

So…a note to my husband. Please give me 3-4 dinner options and then plenty of time to process my choices. Maybe a printed menu with photos would be nice.

He packs my lunch for work, too. Yeah, maybe I am a tad spoiled.

Forgetting Your Manners (Among Other Things) in Dementialand

alzheimer's, dementia, dementialand, , ,

Several years ago, I was sitting with a group of individuals who had recently been diagnosed with Alzheimer’s. I don’t spend a lot of time with people in the early stages of the disease. Many of the people with Alzheimer’s that I talk to are past the point where they are able to tell me what it’s like to have Alzheimer’s. Although I had been to many caregiver support groups, this was the first time I had been at a support group for individuals who had been diagnosed.

The group was talking about fears. Although Alzheimer’s is a terminal disease, no one mentioned death or dying. No one talked about the anxiety and depression that often accompany Alzheimer’s. Surprisingly, several participants said that their biggest fears were actually related to having limited financial resources for care.

One man, who was still able to drive, was terrified of losing his driver’s license. If he lost his license, he’d have to depend on other people for transportation and he knew it would be difficult for him to ask for rides. A woman in her late 40’s was scared of how her children would negotiate the loss of their mother as the disease progressed. She worried they would feel burdened taking care of her when they should be establishing their careers and starting families.

Then there was a quiet woman, who had not yet spoken much, who told us about her biggest fear. Her biggest fear was forgetting her manners. She feared being in a nursing home and having someone care for her–but not being able to thank them for their help. She worried the basics of etiquette might escape her. Maybe she’d start interrupting people or chewing with her mouth open. If she needed help, she worried she’d ask for it in a rude or demanding way. She was frightened she’d be unable to be polite as the disease progressed.

Maybe this is an obvious point, but it hadn’t hit me until that day. And it goes beyond Alzheimer’s. What we fear losing the most is dependent on how we define ourselves.

The man who was afraid of losing his driver’s license? He had always defined himself as independent. He clung to that. The woman who worried about burdening her children? Being a mom was an important part of her identity. And a good mom launches her kids out in the world to develop successful careers and happy, healthy families. And the lady who worried about losing her manners? She had always aimed to be a poised, polite, kind, and gracious person. Since she was a child, people had complimented her on her manners. That was just who she was.

We all have traits and roles by which we define ourselves. Ask yourself “Who am I?” Then think about the possibility of losing the things that make you who you are. This is why retirement is a struggle for some individuals. Sometimes we lose a part of our identity that we’ve really valued. Who are we if we are not a plumber, a nurse, or a college professor? It may take a while to figure that out.

A few years ago, I had a knee injury. Obviously, the type of loss created by such an injury cannot be compared to dementia, but it did threaten a part of my identity. I am a dedicated and motivated (although not fast) distance runner. I have done two marathons and over 20 half-marathons.

It’s not about winning races. (To be honest, I have won a few 5ks in my age group, but that only happens when I am the only woman 30-39 who shows up without a jog stroller to push. This has actually been the case in a couple very small local races.) It’s about being a runner. Who am I? Among other things, I am a runner. I don’t need to post every run I do to Facebook. I realize that the world doesn’t care if I ran 5.63 or 5.69 miles today or if my pace was over or under a ten-minute mile. But I get out and get my run done. I didn’t realize this was such an integral part of my self-definition until I was faced with letting it go. Fortunately, I had surgery and am back out on the roads. (Sorry to all the female runners pushing jog strollers–I’m back!)

Who am I? In no particular order, I’m a wife, daughter, friend, college professor, Alzheimer’s awareness advocate, runner, public speaker, and fitness instructor. What if I were faced with losing these parts of my identity? What if I couldn’t do the things that I think make me…well…me? I’d like to think I could redefine myself, but it’s not that easy–especially when you’re not doing it by choice.

There are plenty of people who live well with dementia, particularly in the early stages. They may do many of the things that they used to do. They fulfill many of the roles they’ve always fulfilled. But what we miss from the outside is that they must let go of parts of themselves from the time they begin showing symptoms. A golfer can no longer golf. A cook can no longer cook. A writer can no longer write.

These may seem like small things in the big picture, but they are not. Golf, cooking, writing…these are things that make us who we are. If you’re a golfer who can no longer golf, people tell you to find a new hobby…a new way to spend your time. But you’re a golfer. And you get to grieve the loss of that part of your identity. And you get to tell people to be quiet when they keep telling you that you can find other hobbies and that not being able to golf is no big deal. It’s not just a hobby. It’s part of who you are.

The woman who was worried about forgetting her manners? The support group facilitator told her it was okay if she forgot her manners. He said that if she didn’t thank people who took care of her, it was understandable. He told her that it didn’t really matter if she interrupted people or if she chewed with her mouth full.

“It may be okay with other people if I lose my manners,” she responded. “But it is not okay with me.”

We don’t get to tell people with dementia that these potential losses don’t matter. They do matter.

A Special and Weird Kind of Loneliness in Dementialand

alzheimer's, caregiver, caregiving, dementia, , ,

When I was in graduate school, I had a friend who was going through a rough stretch in her relatively new marriage. She told me something that struck me as interesting…and sad. She said that she was sometimes lonely when she was single, but that loneliness did not compare to the loneliness she now felt when her husband was right next to her. Her husband seemed like a stranger to her.

Shortly after talking to this friend, I came across the following quote:

It’s a lonely feeling when someone you care about becomes a stranger. —Lemony Snicket

I remember sharing it with that same friend after she had decided to file for divorce. And, for several years, I thought that quote was about falling out of love. I thought it was about thinking you knew someone and realizing they weren’t the person you thought they were…or maybe that they were but they changed…or you changed.

I was single at the time. This quote stuck with me. I vowed to never end up in a relationship that made me feel more lonely than I felt as a single person. I didn’t want to marry someone who would make me feel alone even though they were sitting right next to me on the couch. And I didn’t.

That’s what I thought that quote was about.

But recently I’ve used the same quote in a different way. And it makes me just as sad.

Dementia makes people lonely for the people right next to them. A woman once told me that she missed her husband even though she was sitting beside him. She cared for him 24/7 in her home. She was rarely not in the same room with him. She asked me how she could be so lonely when she was never alone.

She told me that she loved her husband for 30 years, and she loved the man who lived with her now, but that wasn’t her husband. He didn’t know who she was. He was often aggressive and destructive. She managed to love and take care of him, but it wasn’t her husband. She missed her husband. The hardest part, she told me, was looking at this guy who resembled her husband.

“I didn’t know I’d miss him this much when he was still living,” she said. “Now that’s a special and weird kind of loneliness when your husband doesn’t know who you are.”

A special and weird kind of loneliness? I couldn’t argue with her terminology, but in my field it’s actually called ambiguous loss–someone is psychologically absent but physically present. People in the early stages of dementia can very much be psychologically present in relationships. However, as dementia progresses, relationships change. We must modify our expectations and our perspective. And there is loss…

There’s no way around it. My former neighbor told me once she missed her husband’s conversation skills as his Alzheimer’s progressed. She told me she had always appreciated how he could argue with anyone and then charm his way back into their good graces. She missed that. She still had his smile and his hugs, but she was grieving all the great conversations she had. She was lonely. He was right here, and she was lonely.

It’s not just spouses that go through this. Parents with dementia might not be able to give advice like they used to. Dementia may keep grandparents from being there for us in the ways that they used to be there for us. When we can’t depend on people like we used to be able to, we feel lonely. We feel lonely for people we can see and touch.

A few years ago, I went to the funeral of a man who passed away from Alzheimer’s. His wife was standing up by the casket, dutifully greeting a long line of family and friends. I overheard an interaction that I have not forgotten.

Someone gave the wife a hug and said, “I know you’re going to miss him so much.”

The wife smiled and said, “Oh, it’s okay. I’ve been missing him for years now.”

It was one of the more awkward funeral interactions I’ve experienced.

There’s a lot of love in Dementialand. I see a lot of laughter, hope, and joy. There are families living in Dementialand who make the most of every moment and opportunity. Yet there’s so much loneliness.

And there’s no loneliness like the loneliness that occurs when you’re looking right at the person for which you are lonely. That’s what dementia does.

Why We Can’t Afford to Accept Dementialand (And What the General Public Hasn’t Yet Figured Out)

caregiving, dementia, financial, , , ,

I think I’ve given someone the wrong impression about how I feel about Alzheimer’s and related dementias. Someone the other day said to me, “I think you’re right. We just need to accept that old people get dementia and lose their memories.” Hmmmm….. I took a deep breath. It’s not just about old people and it’s not just about memory loss.

Also, I think a point of misunderstanding here is how I’ve used the term acceptance in my blog and public speaking. When someone has dementia, we need to accept the changes the occur. Fighting those changes is a bit like try to herd cats (inefficient and frustrating for all involved).

But should we accept Alzheimer’s and related dementias? Absolutely not. We should fight by increasing education and research. We cannot afford (financially or otherwise) to throw in the towel on this battle.

I could make a case that we need to find a cure or prevention method for diseases that cause dementia because these diseases (e.g., Alzheimer’s, Lewy Body Dementia, Frontotemporal Dementia) cause suffering and end lives. But I am going to take a different approach–one that may be more appealing to legislators, policymakers, and economists.

If Alzheimer’s and related dementias progress to end stage, most individuals need 24/7 care and reside in nursing homes. Keep in mind the most common reason for nursing home admittance is dementia. If we can prevent or cure dementia, more people will be able to stay in their homes (or at least seek out a less intensive care option) as they age. Most people would choose to stay at home given the option. We don’t like to be dependent. We don’t want to be told when and what to eat. But beyond that…nursing home care is expensive at the individual and societal level.

Some people have enough personal wealth to pay for their nursing home care until the end of life. A few people have long term care insurance (and some of these individuals quickly find out that their policies do not cover what they expect they will). But the rest of us….

The rest of us pay until we can’t pay anymore, and our family is decimated financially. At this point, the state pays for our nursing home care. (Contrary to popular belief, Medicare only pays for nursing home care in very limited short-term cases.) As people live longer and more individuals have Alzheimer’s and related dementias, as a society we will struggle to pay for care. And I think the word “struggle” is an understatement.

The cost of nursing home care is dependent on where one lives and a few others factors (e.g., semi vs. private room, level of care). However, a widely-reported mean is $220 to $250 a day. This adds up to $80,300 to $91,250 a year. And you thought college was expensive. Very few of us can pay for an extended stay in a nursing home without long term care insurance or state assistance. And it’s rare that people have long term care insurance because it’s expensive and you have to be pretty healthy to qualify. Sometimes in the end it turns out to be a rip off anyway.

I’m not sure legislators understand the financial crisis this will create. In fact, I have participated in three informational panels for state legislators to learn more about the need for funding for research and support for Alzheimer’s and related dementia. Each time I came in my business suit (a rarity for me) prepared with financial numbers and statistics. The total number of legislators that attended the three sessions combined: Three. Actually, make that two. One legislator attended two sessions, and it’s misleading to count him twice. The general public doesn’t get that this is an impending financial and public health crisis, and apparently legislators don’t get it either.

In my opinion, the biggest challenge we face when we try to rally support for Alzheimer’s and dementia funding is combating the myth the dementia is only about memory loss. The general public still thinks that dementia is the natural process of increasing forgetfulness that occurs as we get older.

First of all, dementia is not normal aging. (And I will add the dementia doesn’t only impact old people. I know people in their late 30’s with Alzheimer’s and related dementias.) There are some normal age-related memory changes, but these normal changes do not severely impact daily life.

I speak to many older women who worry they have dementia because they used to be able to bake their signature cake from memory and now they need to look at the recipe. Sometimes people think they have Alzheimer’s because they used to be able to remember several items at the grocery store without writing them down. Now they need to write a list. Those are normal age-related memory changes. When we have these changes, we can use strategies (e.g., recipes and lists) so that they don’t negatively impact our lives. These strategies may work at the start of dementia, but over time a person becomes incapable of following a recipe or creating a list.

The other piece of the myth of dementia that has held us back in terms of research and funding is the incorrect assumption that this is just about memory. Memory loss is one part of dementia. I hate to be this harsh, but dementia is about eventual complete and total brain failure. Take a second and think about what your brain controls…. Actually, it may be easier to think of what your brain doesn’t control. Your brain is the control center for EVERYTHING about you.

What does your brain control? Your mood. Your movement. Your memory. Your swallowing. Your immune system. Your impulses. Your breathing. Your speech. Your language. Your non-verbal communication. Your facial expressions. And this is by no means a complete list.

So here are some things that may happen with Alzheimer’s and related dementias that are not memory related:

1. People with dementia might eat things that aren’t edible, like marbles or rubber bands. They might not realize the food they are eating is spoiled or that it’s not prepared (e.g., eating cake mix or raw eggs).

2. Dementia can cause a person to have issues with balance and movement. It is common for dementia to cause someone to be unsteady on their feet and fall down stairs. Eventually, it can progress to the point that the person can no longer walk. At the end stage, people are bed bound and pressure sores are problematic.

3. An early sign of dementia is being unable to detect sarcasm. A person with dementia may also be unable to figure out that someone is lying even when it is apparent to others.

5. Compulsive behavior (such as repeatedly locking doors or buying a large number of food items even though the pantry is already stocked) can be a sign of dementia. Someone who starts pacing around the house compulsively might have dementia.

6. A lack of eye contact during conversation or inappropriate staring in public places might be a sign of dementia. A person’s non-verbal communication skills can become compromised.

7. Often dementia is mistaken for depression. Many people go to the doctor early in their disease process and are misdiagnosed as having clinical depression. This can be tricky because, not surprisingly, people who have dementia are often also depressed.

8. Dementia impacts the part of the brain that regulates mood, so being moody or displaying inappropriate moods can be a sign of dementia. If someone starts laughing at things that aren’t funny, they may have dementia.

9. Dementia can impact swallowing, and individuals are at an increased risk for choking. Often families must make a decision about whether or not a feeding tube is an option. People at the end stage of their illness may also aspirate on oral secretions.

10. At the end stage, the immune system is compromised. The brain activates the immune system. As brain cells die, the immune system doesn’t respond as it should. It is common for someone with end stage Alzheimer’s to die of a urinary tract infection that has spread.

It’s not just about memory. It’s not normal.

And we can’t afford to just accept Alzheimer’s and related dementias. It’s time to fight.

What You Do For Friends in Dementialand (aka What I Learned From My 5th Grade Teacher Mr. V)

dementia, friendship, ,

Flashback. I am in the 5th grade at Mulberry Elementary School. There is a girl in my class who I will call Mindy. Mindy has special needs. She’s very sweet but doesn’t quite fit in as hard as she tries. She’s obsessed with Iowa Hawkeye football and never misses a game on TV. One weekend, she gets to go to a game. It’s a really big deal for her.

The Monday after the game, my teacher (Mr. V as we call him) does something that I haven’t forgotten. He asks Mindy to run an errand to the school office. While she is gone, he tells us that when Mindy returns he will ask her to tell us all about the Hawkeye game.

“I know that many of you have been to lots of Hawkeye games, so it may not seem like a big deal to you, but this is a BIG deal to her,” he tells us while Mindy is out of the room. “So when she talks about it, you will be excited. It’s just what you do for a friend.”

He specifically says you will be excited. He doesn’t say you will try to be excited. He doesn’t say you will pretend to be excited. He says you will be excited. Instead of questioning whether or not a person could actually be excited just because they are told to do so, I tell myself I must be excited. I’m an obedient child and I put a lot of energy into my efforts to impress my teacher. (Yep. I was that kid.)

That was more than 25 years ago. And the lesson stuck.

I went to New York City with my friend Holly a few years ago. Holly was an art history major in college and was excited to visit the Metropolitan Museum of Art on our trip. I hate to admit this, but I appreciate art about as much as I enjoy eating cat food. My previous visits to art museums included me stomping around and pouting like a small child who had their candy stash raided…and that was when I was in my late 20’s.

But this was going to be different. I was going to be excited to go to the museum….because Holly was excited. And it’s just what you do for a friend.

Here’s the funny thing. At first, I was faking it. I was pretending to be interested. I was trying to not spoil Holly’s fun by acting like someone was sticking needles in my eyes. At some point, my fake excitement morphed into real excitement. As we left the museum, Holly bought me a large soft pretzel from a cart on the street and I had to admit it had been a pretty good afternoon.

And I wasn’t just saying that so she didn’t feel bad for subjecting me to the museum. I realized my interest in art had gone from a 2 out of 10 to maybe a 5 or 6 out of 10. (Of course, my favorite piece of art in our home is STILL the print of four dogs playing pool with a cat dartboard behind them. It’s not as tacky as it sounds, really.)

We typically think that we act more enthusiastically about something if we are more enthusiastic about it. However, I also think we become more enthusiastic about something if we act more enthusiastically. Our actions may follow our feelings, but our feelings also follow our actions.

Every month, I visit a memory care community where a woman with dementia greets me. She’s always sitting in the lobby with a Christmas fleece blanket on her lap. Every time I walk in (at least for the last six months), she exclaims, “Did you hear I have a new grandbaby?”

I don’t know this for sure, but I’d guess she says that to every single person who walks through those doors during the day. I would assume she did have a new grandbaby at some point in her past. Maybe that grandbaby is my age now. I have no idea. And it doesn’t matter.

She’s excited. That excitement is rooted in her reality. Even though she may not have a new grandbaby, I get excited to talk to her. My excitement is genuine, whether or not her grandbaby is.

A woman recently told me that her mother, who has dementia, often talks about how she won the Powerball. Of course, her mother didn’t really win the Powerball. However, the woman told me that her mother is so jazzed about winning that it makes everyone around her happy. It seems irrelevant that 2.3 million dollars isn’t coming her way. Her enthusiasm is contagious.

As the woman was leaving her mom’s nursing home room one day, a staff member said to her, “It always makes my day when your mom wins the Powerball! I hope she wins again tomorrow!”

I spend a lot of time being excited about stuff that is rooted in the reality of people who have dementia rather than rooted in my own reality. But why is their reality any less worthy of being celebrated than my reality?

A couple weeks ago, a women with dementia told me that her cat had a litter of 102 kittens. I know the woman has not been out of the nursing home for a year, and I know cats don’t have litters of kittens that large. Still, I found myself getting genuinely excited as we chatted about the kittens. I asked her to tell me more about the kittens. She said most of the them were green and they were all healthy.

“Green? Are you kidding me? They sound adorable!” I said.

“Well, it’s amazing what they do these days,” she told me, shaking her head incredulously. “People can just do it all. You never can tell what color it’s all gonna turn out.”

As I left the nursing home that day, I realized hearing about this exceedingly large, amazingly healthy, and colorful litter of kittens had made my afternoon.

When we care about someone, we get excited when they get excited. It doesn’t matter if what they are excited about isn’t really in our wheelhouse. It doesn’t matter if it’s rooted in our reality. It doesn’t even matter if it doesn’t make sense.

It’s just what you do for a friend.