Category Archives: dementia

Conferencing in Dementialand (or What You Learn by Observing Minglers)

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I’ve spent the last few days at the Alzheimer’s Association International Conference in Washington, DC. You may have seen some news articles discussing the research that was presented at the conference. Although the conference had some research on psychosocial therapies and technologies to help people with dementia, it’s not surprising that perhaps that biggest headline to come out of the conference pertains to a drug that could possibly slow the progress of Alzheimer’s in the early stages of the disease—if it pans out. And I’m cautiously optimistic that it will have a significant benefit for some individuals with the disease. If you think I’m tempering my enthusiasm, you’re right. I often do this in response to the media overstating the effectiveness of a potential treatment that may be years away from being available anyway.

Sometimes I hear individuals with Alzheimer’s and care partners make comments about how slow progress is in the area of Alzheimer’s research. And I can’t blame them. We’ve been slow to go to battle against dementia in general. Funding has been limited. We’ve traditionally viewed Alzheimer’s as an “old person’s disease” and we’ve thought of better ways to spend our money than on our aging population. Furthermore, protocols to ensure the safety of any drugs and therapies are stringent to make sure treatments are safe for humans before they are used. And, sure, this means longer time periods before we can try therapies with individuals who could benefit from them.

A man with Alzheimer’s told me recently that he’s given up hoping that there will be an effective way to slow or stop the disease in time to help him. Now he just hopes that there will be something to help his children. I wanted to tell him that I thought something would be available in time to make a significant difference in the course of his disease, but I couldn’t. With reasonable confidence, I did tell him that I thought we would have more treatment options for his children if they were to be diagnosed.

Here’s why I could look him in the eye and tell him that…

My dementia-related research publications are in the area of professional and family caregiver knowledge, education, and intervention. In sum, it’s psychosocial. When I talk about my own research, I’m not talking about drug trials, PET scans, and biomarkers. I’m not talking about genes or neurodegeneration.

However, this week I was in a world where neuroscience nuances were hot topics of conversation. I’ve been told I have a very distinct “concentration face,” and I’ve been told that face looks a bit angry—even though it isn’t intended to be. I have a feeling I was wearing my “concentration face” while trying to process this stuff.

It was good for me. I need to be up-to-date so I can convey scientific knowledge to individuals and families. I teach this stuff in my college courses. And it helps me to understand why people with Alzheimer’s think, feel, and behave in the way that they do. It also reminds me not to be complacent because I have a lot to learn. However, the biggest reason it’s good for me is because it makes me more optimistic.

At this point, research is at an exciting place, but it still moves slower than we all wish it did. What makes me optimistic is not just the research…it’s the researchers. I read a lot of research articles about Alzheimer’s…but seeing a group of researchers proudly present the state of their project to a crowd of fellow scientists, professors, practitioners, and press? It reminds me that this is about people.

It’s about people with dementia, of course. It’s about their families and care partners. Then we’ve got professionals, like individuals who work for the Alzheimer’s Association and work tirelessly for advocacy and fundraising. Others work in nursing homes or memory care communities and see individuals who struggle with Alzheimer’s on a daily basis. What I want all of you to know, despite what you might think about the level of funding of Alzheimer’s research compared to research for some other diseases, is that the researchers are in this, too.

I met researchers at the conference who work 80 hours a week. They sacrifice time with their families (maybe to a fault) and forego vacations. They are committed and passionate. Some of them actually have little direct contact with those with dementia. They spend their time in a lab, maybe doing statistics or looking at brain scans. You might think about their daily routine and think they are detached from the actual day-to-day life of those affected by Alzheimer’s. If you have Alzheimer’s, it’s true that they might never really know what you’re going through. Maybe they will never know the challenges of a family care partner. But I want you to know that they are in this as well. And they do care. It’s more than a job. It’s their purpose.

At the conference, there was an area in the lobby with a huge sign that said “Mix and Mingle.” If the thought of that sign makes you cringe because you’re slightly socially awkward, we might be kindred spirits. (When I was a kid, my parents told me not to talk to strangers. I still typically follow their advice.) I spent just a bit of time in the mingling area—much of it on my laptop feeling like a kid standing in the corner at a middle school dance. My thoughts alternated between “Somebody PLEASE talk to me,” and “I hope nobody tries to talk to me.”

But I did eavesdrop on mingling. I’m much better at observing and analyzing human interaction than participating in it. There were some conversations about when it was best to take an Uber versus a cab (quite useful for someone who lives in Cedar Falls, Iowa) and how the heat index was well over 100 degrees. This is also how I learned about the National Crime and Punishment Museum, which happened to be right down the street and was the best $21.95 I’ve spent in a while. However, much of the conversation I (over)heard was about…Alzheimer’s.

The researchers could have gone to sit at their hotel pools or see DC attractions during conference breaks, but they didn’t. They hung out and talked about…Alzheimer’s.

Sure, you can make some pretty negative accusations about huge money-hungry pharmaceutical companies. I am not naïve to how they drive research in the field. But this is about people. And this week I got to meet some pretty motivated, bright, and optimistic people. It’s those people that will eventually crack Alzheimer’s.

Earlier this summer I was talking to a women with whose husband had passed away from Alzheimer’s. When she asked if I was going on any trips this summer, I told her that I’d be attending this conference.

She said, “You tell those nerdy scientists that they don’t know everything about Alzheimer’s until they see their spouse waste away from it.”

She’s absolutely right. They don’t know everything about Alzheimer’s. They may not know what it’s like to have the disease or what it’s like to be a care partner. But that’s not going to stop them from working 80 hours a week to find effective treatments and an eventual cure.

Following Up in Dementialand

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Several months ago I wrote a blog post about why I dislike the movie, The Notebook. In short, I take issue with how it presents Alzheimer’s. On an unrelated note, I think it promotes stalking as romance.

You can read all about it here:

https://welcometodementialand.wordpress.com/2015/03/09/my-least-favorite-dementialand-movie/

I had no idea the Facebook messages and emails I would get after this post. Sure, some people agreed with me. Other people sent me comments like:

“Chill, honey, it’s just a movie.”

“So what if it’s not realistic. It’s a damn movie. Relax.”

“You don’t seem to understand the purpose of a movie. Why do people have to overanalyze everything and take away all the fun?” 

I was surprised that this post caused a stir, but I’ve realized that I’m a poor judge of which of my blog posts people will be controversial. I never would have guessed that my post about The Notebook would earn me the most hate of all 50-some posts I have written. People acted like I was killing kittens. And I can laugh about this now…

I predicted that Monday’s post about care partners who pray for their loved ones to pass away would offend someone. I thought I’d get a few emails from people who didn’t like the way I presented this, or maybe were just uncomfortable with the whole premise.

I got a little bit of feedback on Monday morning, mostly from people who said they could relate to the post. A few people thanked me, and in general people said reading the piece made them feel a bit more comfortable with their experience of wishing a loved one would die–rather than continue to live a life that they were pretty certain wasn’t worth living. I went for a run and checked my email when I got back. And whoa.

I had a lot of emails. Nineteen to be exact. They were from individuals who had experiences to share that related to the blog piece. Many of the emails were from care partners or former care partners of those living with dementia. However, quite a few of the emails were from those who had lost a loved one to cancer or another illness. And I thank those of you who gave me permission to share parts of your emails and Facebook messages. (A few people also posted very insightful comments on the actual blog post, if you are interested.)

Here are excerpts from the messages I received:

“My mother in law lives with us and has vascular dementia. I hate to say it, but I’m ready for her to pass away. It’d be different if I thought she had any joy in her life now. But I don’t think she does. There is a time when somebody is just done. She’s done. But her body is still here. I haven’t told my husband this. I don’t know if he’s there yet.”

“I have felt guilty for years because my mom was dying of cancer and I wished it would just be over. I prayed for her suffering to be done. Then when she died I felt awful. Not because she was gone but because I prayed for her to be gone. But she was suffering. I just couldn’t do it anymore.”

“My mom has Alzheimer’s and she has had it for about 10 years. The first 5 or so years she was happy. Now she’s not. She lives in terror. I know it must be scary for her. It’s scary for me. I just want it to be over. I want the nursing home to call me and tell me she’s gone. When the phone rings, I hope they are calling to say she’s gone. Maybe that’s awful, but it’s the truth.”

“My dad doesn’t want to be here anymore. He has cancer and Alzheimer’s. We don’t make our animals suffer. We know the kindest thing is to end their suffering. But people have to suffer until the bitter end and we have to watch it….Dad asks me to help him end it in a joking way. He says I should just shoot him and laughs. But I wish I really could.”

“For many years I have felt bad about praying for my mom to die when she was at the end of her life. The doctor kept giving her antibiotics and meds. I wanted them to stop giving her the medicines but I didn’t know how to tell them that and was scared they’d think I was a bad person. So I kept giving her all these medicines but hoping they wouldn’t work…Reading this made me feel more normal.”

“My mom had Alzheimer’s and I prayed she’d die for over a year. After she finally passed, I missed being in dementialand. I guess I got used to living there. I also felt useless like no one needed me. I didn’t know how much I needed to be needed.”

“Amen. My husband is at the end of dementia and has COPD. He is tired. I am tired. I don’t eat, I don’t sleep, he doesn’t know what’s going on. I want to fast forward time. If I had a remote control I’d hit fast forward. Then I think about how I know that after he’s gone I will want to rewind but still can’t stop from wanting to hit fast forward. Don’t know how to change how I feel.”

“I thought I would feel sad when my sister died of Alzheimer’s but I didn’t. I really just felt mostly relief. But I still feel horrible that I felt relief. I feel like a good sister would’ve been sad. This blog post helps a little.”

I usually feel good when I write something that people “get.” If people say they can relate to something I write, I feel like I’ve been successful. However, I didn’t get that feeling as I read through people’s comments on this one.

I just felt…sad.

Praying for the End in Dementialand

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I was 23 when my grandpa passed away. He had a lot of chronic health conditions, including diabetes, and he’d recently had a leg amputated. The last time I saw him in person, he kept calling the guy I was dating at the time “Steve” (although his name was not Steve) and he was very grateful to “Steve” for helping him figure out the remote control to his crappy TV at the hospital. The last time I talked to him on the phone, he was telling me about a church picnic that he had attended. He mentioned he brought brownies in a basket. There had been no church picnic.

I remember sitting on the bed in my small grad school apartment with my black cat, Teela, as my mom called me to tell he that he died. It seems surreal that I still have Teela (although now she has three doggie brothers and a feline sister–oh, and a dad!) and am looking at her in her kitty condo as I type this today. It seems so long ago, but I guess it wasn’t that long ago because I still have Teela–although she is a bit heavier and moves slower…I could say the same about myself though.

I asked my mom if she thought I should call my grandma to express my condolences. To be honest, I wanted her to tell me not to bother Grandma. I was a little nervous to make the call. I didn’t know what to say. When Grandma answered the phone, she launched into a story about the Red Roof Inn she was staying at near my grandpa’s hospital. She had spent a lot of nights there, and they were kind enough to not charge her for the night my grandpa died. She was absolutely overwhelmed by their kindness. I think of this every time I see a Red Roof Inn to this day.

I didn’t really know what to say when she paused after praising the employees of the Red Roof Inn, so I blurted out, “I’m sorry about Grandpa.”

“Oh, honey,” she said. “I was praying for the Lord to take him. I knew he wasn’t gonna be strong enough to come home after losing that leg. It was the best thing.”

The best thing?

At that point in time, I had this idea that we all should fight for our lives to the bitter end. I saw death as failure, not as a natural part of life. And I wasn’t sure what I thought of someone hoping and praying for a loved one to pass away.

In a way, I was glad my grandma accepted my grandpa’s death on some level. On the other hand, I couldn’t wrap my mind around the notion that my grandma prayed for my grandpa to die. I can assure you that the experiences I have had between then and now have absolutely allowed me to wrap my mind around this.

I was speaking with a woman recently whose husband has a type of dementia that can progress very quickly. I pointed out that this rare type of dementia has a shorter life expectancy than Alzheimer’s and most other types of dementia. I had only known this woman for about…3 minutes…so I worried that I’d said too much and was perhaps being a bit pessimistic and blunt when I had no idea where she was at with this.

“Oh, thank God,” she said. “The quicker this progresses, the better.” Then she looked horrified, like she couldn’t believe she said this to me.

There are many people who live well with dementia. Unfortunately, her husband is currently not one of them. And she wants this over as soon as possible, for him and for her.

Then she asked, “Am I a bad person for wishing he dies sooner rather than later?”

I wasn’t quite sure how to respond. It seemed like a question for a ethicist, pastor, or philosopher rather than for me. All I could do was reassure her that her feelings were normal considering the circumstances. She was absolutely right that he seems to have little quality of life. He spends most of his day in their bed–but with his eyes open–and he gets upset if she tries to turn on the lights or the TV. He recently told their kids that he was sorry he ever had them, and he had even become aggressive toward one of his grandchildren. She also pointed out that he’d be really upset if he realized that all the money he had worked so hard to save would likely be eaten up by a nursing home.

So, are you a bad person for hoping that your loved one with late-stage dementia passes away rather than lingers on? Absolutely not. This is normal. It’s also normal that you might wish for them to pass away in one moment but in the next minute be willing to do anything to keep them on this earth.

And when they do die, it is normal to feel guilty that you wished that they would pass away and then want them back. It is normal to feel a variety of emotions when a loved one with dementia dies, but one of those emotions may be relief. And–no–none of this makes you a bad person. It makes you human.

If someone says to me that they want their loved one to “go quickly” or “leave soon” or any other euphemism we can use to avoid the actual term “death,” it may be partially from a selfish place–because being a care partner is demanding.

However, I find that more frequently it has nothing to do with the care partner and everything to do with the person with dementia. While some people with dementia live a life worth living right up until the moment they depart, we cannot say that everyone with dementia has a positive quality of life from dementia to death. It’s just not true. Alzheimer’s, Huntington’s, Lewy-Body Dementia, frontotemporal dementia…these can be cruel diseases.

When we look at our loved ones and see depression, anxiety, and pain (physical and emotional), we may hope for death. Don’t beat yourself up if you pray every night for God to peacefully take your parent, spouse, or sibling. No judgment here. And if you attend a dementia caregiving support group and mention that you are ready for your loved one to pass away, you will see a chorus of nods and knowing looks.

I fully anticipate that this post will offend someone. And I am offended as well. I am offended that dementia causes such suffering that one would at some point hope for death for a family member or friend–and that as a society we haven’t been empathetic or supportive enough to those in the midst of this journey.

Friendship Inside (and Outside) Dementialand

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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

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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

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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

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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)

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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.

You Don’t Know Unless You Live in Dementialand

dementia

As I’ve said before and so has others, you will never know unless you have this disease. It sucks! Nothing I can say other than that.

Those are not my words. They are the words of someone with younger-onset Alzheimer’s. Her name is Melanie and she is in her early 40’s. I read the blogs of many individuals with dementia, but there is something about her blog that keeps drawing me in. I think it’s because when I look at her picture I see someone who looks like they might hang out with my group of friends if they lived in my town.

I want Melanie and others who share their raw and personal experiences with dementia to know that what they are doing is meaningful. Instead of reading my words today, I want you to read her words. You will learn much more about dementia from her in 15 minutes than you ever can from me.

You can read her most recent post (which I’ve read about ten times in the last week) here:

https://mwagner21.wordpress.com/2015/06/09/the-end/

Thank you, Melanie. You are making a difference.

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

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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.