Anticipatory Grief and Dementia

Anticipatory grief.

I first learned the term when I was in graduate school. I threw it around a lot when I was volunteering for hospice. Now that I work with families impacted with dementia I apply the term frequently.

It could be described as the emotional response to the pending death of a loved one–but I know people who have a loved one with dementia that have experienced anticipatory grief when death was still years away. It’s seeing someone you care about slip away little by little. It’s looking at someone right in front of you who doesn’t recognize your presence–and you know they never will again.

I’ve heard Alzheimer’s called the “long goodbye.”

That’s anticipatory grief.

Sometimes we think an extended period of anticipatory grief means that we will be prepared for a death. But I don’t buy that. Sure, maybe there’s some relief when we’ve been processing the loss for some time. Yet we can’t pay our dues with anticipatory grief…grief after a death still comes for us.

We grieve our loved ones when we lose parts of who they were–when they no longer recognize us, when the lose the ability to communicate verbally, when they can no longer drive, cook, or mow the yard. We grieve bit by bit. You’d think we’d be all out of grief at some point, but it doesn’t work that way. Grief is a lot like love (and closely related to it). It’s pretty limitless.

It’s okay–and normal–to grieve someone who is living.

But we can continue to enjoy the moment even when we are experiencing anticipatory grief. We can grieve what our loved one has lost while appreciating what is left. Grieving someone doesn’t mean we finalize our relationship with them. It doesn’t mean we write them off.

It just means we mourn what we’ve already lost while preparing for more loss. In our heads, we may be composing eulogies and visualizing funerals. And many of us live like that for a long time. We get through by hoping for a “better” day even when we know someone isn’t getting better.

A few months ago, older gentlemen who attended a dementia support group I spoke at asked me if it was normal that he visually rehearsed his wife’s death. At night, he would sit in his recliner and practice what he wanted to say to her as she neared the end. He had found some CDs he’d like to play for her in her final hours. He’d written a short script of what he’d say when he called family to let them know she was gone. He knew exactly who he wanted to stay at his house in the days after she died (and who he didn’t).

“That’s morbid, isn’t it?” he asked me.

In order for something to be morbid, it has to be abnormal and unhealthy. (I know this because I just looked up the definition of morbid.) And this isn’t abnormal or unhealthy.

Death, like birth, is a part of life. And we rehearse births in our society. We decide who we would like to attend a birth. I know plenty of couples who have had “birth playlists.” Mother are encouraged to make birth plans. We anticipate birth and we make a plan.

Why should death be any different?

Someone who lost their wife decades earlier–and was happily remarried–once told me that there is no finish line to grief. Sure, you develop a new sense of normal and you do your best to move forward, but the grief doesn’t have a definitive end date.

Perhaps grief doesn’t always have a clear start line either.

 

Dementialand and Nursing Homes and Dying OH MY! (A.K.A. When Your Presentation is Postponed Due to Lack of Interest)

I had planned a presentation that broke college students could not be bribed into attending. I mean, college students love pizza. And not even the power of free pizza could get them to show up to listen to my presentation. Wrap your brain around that.

About a month ago, I was contacted by our university’s honors program and asked to do a program for something called “Pizza with a Prof.” The professor (in this case, me) gets to choose a topic to talk about while the students listen and eat pizza. I was assured the prof would get some pizza, too. And, hey, I rarely turn down free pizza–unless it’s from Domino’s.

I thought I’d talk about some of my favorite gerontology-related topics. And–time to get excited here, folks–I put together a short Powerpoint presentation complete with a few photos of some of my favorite people, Drs. Elisabeth Kubler-Ross and Alois Alzheimer.

I chose a title for my presentation: “Nursing Homes, Dementia, Dying, and Other Non-Depressing Topics.”

For some odd reason, I thought this title would draw the interest of quite a few students. It would also show that I had a sense of humor. I anticipated that lots of students would sign up. I was wrong.

The presentation was scheduled for last Thursday. I received an email on Wednesday postponing it due to lack of interest. Only five people were planning to attend.

I had planned a presentation that broke college students could not be bribed into attending. I mean, college students love pizza. And not even the power of free pizza could get them to show up to listen to my presentation. Wrap your brain around that.

My gerontologist heart broke.

Okay, I’m exaggerating. My feelings weren’t hurt, and I didn’t take it personally. Maybe being confronted with one’s own aging process and mortality during lunch isn’t up everyone’s alley, even if the pizza is free.

My friend, Jessica, who coordinates the honors program, said maybe the day just didn’t work well for students. She said, “Your topic is awesome.” Of course, she’s one of my best friends. What is she supposed to say? Students don’t want to hear about death and nursing homes while they eat? That I only talk about totally depressing things?

I’m thinking a presentation titled “Cute Kittens and Funny Memes” might have garnered more interest. Or maybe a Powerpoint on the history of the Obama-Biden bromance.

My area of work as a gerontologist isn’t usually that interesting to people…until it’s really interesting (and relevant) to people. Dementia is boring. Dementia is sad. It’s something we don’t want to discuss. And then it all changes when someone we love has dementia. That’s when I get late night Facebook messages (which I don’t mind, by the way). That’s when people want to take me out for a glass of wine or a latte and talk dementia. Things become interesting when they matter to us. We care about issues when those issues impact us and the people that we care about.

Many of my college students are not comfortable with discussing death. I’d say it’s because they are 18 to 23 years old, but it’s not. I know people much older who are not comfortable with the topic of death. When I do presentations and cover issues related to dying, I see a certain percentage of my audience become visibly uncomfortable. Over time, I’ve learned to become comfortable with their discomfort.

I once had a lady tell me that the information I discussed on end of life issues was useful, but it was just too early in the day to think about such things. She recommended I not talk about death before 3 pm. I told her I’d take that under consideration. (In my defense, I was speaking at a “Families and End of Life” symposium that she had registered to attend.)

Aging is a topic of irrelevance to many people because they cannot wrap their mind around the idea that they will someday be old. It’s not complicated–we all get older (unless we die, of course, which I think is way worse than getting old). However, it’s difficult for most of us to fully grasp that we may someday be the older person who is limited in movement or cognition. We might be the older person who lives at a memory care community, assisted living, or nursing home.

We relate to kids because we are all former kids. In fact, I once heard a six-year-old tell a four-year-old, “I know what you are going through. I used to be four years old.”

None of us are former old people–save those of you who might have been reincarnated. I know what it’s like to be 10, 16, and 19. I don’t know what it’s like to be 79, 86, or 90. Sometimes it’s easier to pretend I’ll never get there and live in denial of the aging process. (I should add that it’s easier to accept the aging process when I see older adults who are healthy and thriving. Although they are typically not my “target” population, there are a lot of them out there.)

As much as I talk about dementia…as much as I talk to people with dementia…as much as I talk to loved ones of people with dementia…I am in denial that I could at some point have dementia. Logically I know it could happen to me, but it won’t happen to me.

When I chat with someone who has dementia, I’d like to tell you that I’m empathetic because I know that someday I could be that person, but I don’t think I really know I could be that person. If I’m being completely honest, I think a little bit of denial is protective for me in this case. If it were constantly in the back of my mind that I could experience dementia, I’m not sure I could hang out with people who have dementia.

I know that the population of individuals with dementia is a population I could join at any point, but it’s just one of those things that won’t happen to me…even though I know it could happen to me. I push any thoughts of being diagnosed with Alzheimer’s, Lewy-Body, or Frontotemporal dementia out of the realm of possibility, and I’m pretty effective at keeping those thoughts buried. I manage to think about dementia without constantly confronting the possibility that I could have dementia at some point.

I can’t judge college students for not wanting be in an environment that forces them to confront death and dementia. I don’t want to confront my own death and potential dementia either. I’m just really good at pushing it out of my mind at will.

My presentation has been rescheduled for this Wednesday. Maybe the last date happened to be a day that just didn’t work out with people’s schedules. Maybe the students planning the presentation didn’t do enough marketing the event. Or maybe I should change the title to “Who’s Going to Get the Final Rose on This Season of the Bachelor and Some Pics of Pug Puppies.”

And when they show up–BAM–switcharoo.

Nursing Homes, Dementia, Dying, and Other Non-Depressing Topics.

Let’s see how fast they can run carrying their free pizza.

 

 

 

Living in the Moment and Planning Ahead in Dementialand

But they’re scared. They understand Alzheimer’s is a fatal disease. They’ve watched the Glen Campbell documentary. They’ve scoured the Alzheimer’s Association website. They want to know everything they can to be as prepared as possible for the journey ahead. In many ways, they are the type of family that I appreciate working with–they actively seek out information to assist their loved one now and in the future.
Yet, there’s a point at which people can become too fixated on the diagnosis. There’s a point where education and preparation morph into worry and anxiety.
“All I think about all day is my mom,” the woman tells me. “I think about what her future holds and when she’ll be in a wheelchair. When I close my eyes, I picture her in a smelly nursing home being taken care of by people who don’t even know her.”

I spoke to a group of professional and family caregivers last week. After talking for an hour and a half, I was gathering my belongings (including some delightful chocolate turtles and a classy purple umbrella that the Alzheimer’s Association gave me for speaking) when a professional-looking woman walked up to chat.

Her mother has Alzheimer’s. Although they’ve discussed a memory care community, she lives at home with her husband, and she has a lot of good days. Once in a while she can’t find the bathroom. She’s no longer able to drive. And they gave their beloved dog to a family member because they were worried she was going to let it outside and forget about it. However, life is okay right now.

She goes to church every week, and she has a great group of friends who pick her up for lunch regularly. She still cooks every evening even if her husband has to help a bit more than in the past. She even volunteers at a local nursing home to help the “old people” play bingo.

But they’re scared. They understand Alzheimer’s is a fatal disease. They’ve watched the Glen Campbell documentary. They’ve scoured the Alzheimer’s Association website. They want to know everything they can to be as prepared as possible for the journey ahead. In many ways, they are the type of family that I appreciate working with–they actively seek out information to assist their loved one now and in the future.

Yet, there’s a point at which people can become too fixated on the diagnosis. There’s a point where education and preparation morph into worry and anxiety.

“All I think about all day is my mom,” the woman tells me. “I think about what her future holds and when she’ll be in a wheelchair. When I close my eyes, I picture her in a smelly nursing home being taken care of by people who don’t even know her.”

She asks me about a timeline. She was diagnosed a year ago, and the doctors says she’s in stage 4. How long will it be until she can’t live at home anymore? How much longer will she be able to walk? And talk? When will she be incontinent? And when will she die?

“We just need some estimates so we can plan, you know, financially,” the woman tells me. I’m a planner by nature, so I understand.

Although I understand, I’m not much help.

You may have read about the seven clinical stages of Alzheimer’s. If you haven’t, you can learn more here:

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

There are times I find the seven stage conceptualization useful. When professionals communicate with other professionals, it’s valuable to be able to indicate a person is in stage 3 or stage 6 to quickly relay information. (I will add that I hate when people are referred to by their stage, as in “She’s a stage 6;” she may be in stage 6, but she’s not a stage 6. There’s a difference to me.)

I’ve found that sometimes my attempts to discuss the progression through stages with families have not been successful. When I say someone is in stage 4, they want to know how long stage 4 lasts. They are unsatisfied when I say something vague like, “It varies.” They want to know why their loved on is classified in stage 3 when their verbal skills appear like the verbal skills of someone in stage 6. I say something like, “Various areas of the brain decline at differing paces.”

I typically end up saying that these stages aren’t an exact science…and they’re not. It’s not like a person goes to bed in stage 5 and wakes up having transitioned into stage 6.

I have started to use the terms early stage (mild), middle stage (moderate), and end stage (severe) rather than the seven stage model when I talk to families. Still–families want to know the length of each stage. I don’t know how long early stage will last for each person, nor do I know how long middle stage and end stage will last. My hope is that most of the duration of the disease is spent in the early stage. When I share that thought with families, they usually agree.

I give families a really hard task when I visit with them. I tell them to be prepared, as much as possible, for the realities of the disease. Obviously, you have to look ahead to be prepared. In the next sentence, I tell them to focus on the moment–because that’s how you find joy when you live with dementia.

And, if you think about it, it’s how we find joy in life more generally. We lose the joy in the moment if we think too much about what could happen in the future. Yet, if we fail to plan we plan to fail (or so my high school economics teacher told me).

Plan ahead and live in the moment.

How do you even do that?

I struggle to do it in so many areas of my own life. Sometimes I can’t even enjoy a Sunday evening at home because I’m too focused on the tasks I have to accomplish in the week ahead. And, if I’m being honest, I have anxiety that boils down (like most anxiety) to not being able to focus on life in the moment. Like many of us, I can’t shut down a fixation on potential future events that may or may not ever actually occur.

A few years ago I read a book called Always Looking Up: The Adventures of an Incurable Optimistic by Michael J. Fox, who is an admirably optimistic person, as you might guess by the title of his book. He points out that we often worry about the worst case scenario, and the worst case scenario rarely happens. He also mentions that, even if the worst case scenario does occur, worrying forces you to live that experience over and over when you really only need to live it once.

This part of the book had such an impact on me that I remember exactly where I was when I read it. I was sitting in the Minneapolis airport right next to a fast food Chinese place called “Wok & Roll.” Now whenever I pass that same “Wok & Roll” during layovers in Minneapolis I think of Alex P. Keaton and Marty McFly. Never in my life has a book had such a strong association with a place.

Michael J. Fox is right, of course. Worry is a waste of time. Although it may be that simple, it’s not that easy. Worry cannot be that easily turned off by those of who are prone to it. Logically reasoning yourself to shut down your anxiety isn’t necessarily effective. In fact, it may increase worry because then you worry that you’re worrying too much. Meta-worry.

As you can probably sense, minimizing worry because worry isn’t productive is something that’s challenging for me. And I know I’m not alone in this.

How am I supposed to give people tips on how to plan ahead and live in the moment in the face of a dementia diagnosis?  I can think of few things I’m less qualified to do.

The woman I spoke with last week was trying to planning ahead. I couldn’t fault her approach. She had toured memory care communities. She had taken her parents to speak with a financial planner. She’d put a package of Depends in her parents’ laundry room…for when the times comes. She was trying her best to, as she put it, “brace for a storm.”

I want her to be able to find joy where her mom is at today. I try to figuratively pat her on the back for her efforts to prepare for the future. Then I tell her that there are no estimates for when her mom will reach certain milestones. She pushes me again to guess how many years her mom has left. I’m tempted to throw a range of numbers out, but I resist. Alzheimer’s is fatal, but each individual has their own trajectory.

She gives it one more shot.

“My daughter is three,” she tells me. “I want to know if Mom will be around when she graduates high school.”

“I’d be pretty surprised if she were,” I say. I don’t know if this is the right thing to say. I’m sure I could have been more eloquent. In that moment, she seems grateful to me.

She thanks me for chatting, compliments my sweater, and wishes me a safe drive home.

 

 

 

 

 

 

 

 

 

 

The Critical Emails I Get in Dementialand (and How I Came to Be Okay With Them)

When I first started writing this blog about 16 months ago, the only feedback I received was positive. Overwhelmingly and sometimes ridiculously positive. I repeatedly heard that it was smart, insightful, funny, and poignant. At that point, my readership included only my mother, my husband, and about four friends. None of them had a negative word to say unless it was to point out a typo.

My readership has expanded. I have “subscribers.” Sometimes I see that my blog gets shared on Facebook by people I don’t know. Of course, most people who write a blog hope that more than six people read it, so this is a good thing. However, it’s forced me to realize that not everyone always finds my blog smart, insightful, funny, and poignant.

At first, I wasn’t okay with this. People’s criticisms (especially when they are mean rather than constructive) cut me hard. I lost sleep. I was in a foul mood. I spent hours crafting email rebuttals to the emails I received. If you’re wondering what types of critical emails I received, here’s a brief summary (paraphrased) of some readers’ thoughts….

You don’t know anything about dementia unless you care for someone with dementia 24/7. You can’t learn about Alzheimer’s by getting a PhD. You probably have never even provided care for someone with dementia. You act like everyone with dementia is the same when they’re not. You don’t know the difference between the terms Alzheimer’s and dementia (this person was kind enough to send me a Wikipedia link to clarify–ummm–thanks?). You need to write from a Christian perspective. There are diets that cure Alzheimer’s, and you should be writing about that.

I once had a guy email me and insist that the Alzheimer’s Association already had a cure for Alzheimer’s but didn’t want to reveal this because they’d all lose their jobs. He seemed to think I was in on this conspiracy. I was a bit flattered that he’d think I, of all people, would be in on this conspiracy.

There’s a reason I only look in my spam folder about once an month, and it’s not those Nigerian princes whose whole families have died in tragic bus accidents.

Comments like this used to sting, even if they were off-the-wall and ridiculous. I’ve gotten in a few passive-aggressive email and Facebook arguments in an effort to defend myself. In fact, it’s hard for me to revisit these criticisms here without writing a rebuttal to each, but I’m not going to give in to that urge. That’s not what this post is about. (And I must admit writing this blog has really helped me develop thicker skin. Furthermore, I’ve realized that people’s comments are more a reflection of where they are in their journeys with dementia than my work, and I’m not saying that some people have not had valid points.)

This post is actually about the two most common criticisms I get about my blog. And that’s where I will squeeze in that rebuttal.

One of these criticisms, which commonly comes from caregivers, is that I portray dementia in too positive of a light…that I look at this through rose-colored glasses…that I find positivity and humor where there is none. The other criticism, ironically, is that I portray dementia too negatively…that I focus too much on the end and not enough on the years that people with dementia can live purposeful and fulfilling lives.

My hope is that someone who reads my blog regularly (although I don’t expect anyone except my mother and husband has read all 101 posts) would not make either of these claims, but I can understand these criticisms coming from someone who has read a few posts here and there. Sometimes I am more negative, and sometimes I am more positive. That’s a reflection of my recent experiences with dementia and likely a reflection of my mood and other events in my life as well. I have my own ups and downs. Sorry not sorry.

When I started this blog, I didn’t have a master plan. You give me too much credit if you think I set out to portray dementia negatively or positively. There was certainly never an agenda. I set out to share my own insights and experiences. I just desperately hoped I could find something to write about each week and not make a fool of myself. In time, that hope turned into fear that at some point I would not be able to find a way to work “Dementialand” into each and every blog post title. I had a dream one night that I wrote an absolutely brilliant post but never published it because there was no way to incorporate “Dementialand” in the title. I woke up in a cold sweat.

This blog is where I’m at on a particular day. And, although I had no intention of portraying dementia positively or negatively, I’m somewhat glad that I can fall on both ends of the spectrum. In a way, I’m proud that I get criticized for being both overly positive and overly negative.

There’s a risk in shedding a positive light on dementia. The general public doesn’t understand what Alzheimer’s and related dementias do to people. People still think this is just about forgetfulness–telling the same annoying stories repeatedly–having to be reminded to brush your teeth–calling your grandkids by the wrong names. As a society, we need to understand it’s much more. We need to understand that dementia kills people…and not just old people. The risk in minimizing the seriousness of diseases that cause dementia is that this hurts the efforts of those who fundraise to increase support and research.

However, there are people out there diagnosed with Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia, and vascular dementia living quite well. There is something between diagnosis and death. It’s called life. Someone with early-onset Alzheimer’s recently told me that she’s dying from Alzheimer’s and living with Alzheimer’s all at once, but she’s thinking about the living part. She estimates she has one or two “good” years left. She refuses to waste them. As I write this, she’s in Hawaii with her family. She knows it’s probably one of her last vacations, but she’s there now.

Dementia is about death and dying. Alzheimer’s, Lewy-Body Dementia, Frontotemporal Dementia…all terminal diseases. Dementia kills people, and I can’t apologize for being blunt on that. I give several community presentations on dementia each month, and people are still not getting this. They act offended when I mention that dementia is fatal.

And yet many of my friends with dementia have good lives. They smile. They laugh. They love. They spend time doing things that are meaningful to them. Some people with dementia are happier than some people without dementia. Some people with dementia are happier than…me. I can use the terms hope and dementia in the same sentence.

None of that changes the reality of the struggles and challenges of dementia. None of that changes the need for more funding and research. None of that changes the fact that no one should have to forget their loved ones. And none of that changes the devastation of these diseases.

So before you send me an email about how my blog is too positive or too negative…a couple things. First of all, make sure you’ve read more than one post. And second, know that I’m not trying to convince you of anything. I’m not trying to tell you that dementia is no big deal. I’m not trying to tell you that dementia steals every joy in life upon diagnosis. Neither is true.

Life ain’t a fairytale–whether or not you have dementia. Stuff goes all wrong, but you have to find a way to survive and (when you are able) thrive. It’s not that life is good and then bad and then good again. Life can be good and bad..and funny and sad and poignant and a million other things…all at once.

Following Up in Dementialand

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

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.

Habits of Sane Caregivers in Dementialand

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. The Ellen Show. 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

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.

But When Are You Supposed to Grieve in Dementialand?

I gave a presentation for dementia family caregivers at a memory care community last fall. A middle-aged woman in the front row did not seem impressed with me at all. She almost scowled at me when we did make eye contact, but for most of my presentation she stared at the wall above my head. I wondered if I had said something to offend her. After I was done talking, she came up to me.

She blurted out, “My husband has early onset Alzheimer’s. So when am I supposed to grieve?”

I asked her what she meant. She said she grieved when he was diagnosed. She grieved when he had to move to the memory care community. She grieved again when he no longer knew who she was.

She seemed so angry. I wasn’t sure if she was angry at Alzheimer’s, grief, or me. Maybe all three of us.

“When he dies, am I supposed to grieve again?” she asked me. She seemed almost annoyed at the idea of having to grieve again after all the grieving she had already done.

This question likely stemmed from concept I mentioned during my presentation. I had talked briefly about “ambiguous loss,” which means that there is some uncertainty about whether someone is gone. Examples would be soldiers who are missing in action and people who are in comas. More recently, we’ve applied this term to people with dementia.

When do you grieve when you’re not sure if people are dead or alive? Do you grieve if they’re right there with you but they linger somewhere between this world and another? Those are the types of questions families undergoing ambiguous loss encounter.

When someone dies in a car accident, grief comes all at once. When someone dies of Alzheimer’s, the loss is much different. I’m not making the case that it’s easier or harder, better or worse. But it’s a different journey. We may feel like we’ve lost our loved one little by little over years. In some ways, we might feel like there is little left to lose when death comes. And yet, even if there is relief, there is still a loss.

I’m not an expert on grief, but I will tell you this… I hate Elisabeth Kubler-Ross’s stages of grief. You know the model. There’s denial, anger, bargaining, depression, and acceptance. I used to think these stages didn’t work for dementia because of the long goodbyes and multiple gradual losses involved in diseases that cause dementia. But it’s only recently that I’ve realized that these stages don’t work for grief in general.

In defense of Kubler-Ross, she eventually came to state that all stages were not experienced by everyone, that the stages did not always occur in order, and that some people experienced emotions outside of the five that she listed. Most thanatologists (those are people who study death–fun, right?) acknowledge there is no real research or evidence to support Kubler-Ross’s stages.

Despite these limitations, people generally really like the theory. Why? Because it’s comforting to think we progress through these stages and come out at the other end (acceptance). But when we lose someone close to us, it’s not that simple. Grief just isn’t that clean and tidy.

And when we grieve, we often have the expectation that the progress will be linear. That we will “progress” forward at a steady rate toward some end goal. But in reality, there is no end goal. There’s no point where we won’t hurt. The best case scenario is that we get to a point where life is enjoyable despite the pain.

We often are also told that our grief will make us better, stronger people. I think that’s a bunch of crap. A college student of mine lost her sister and received a sympathy card that suggested she would emerge on the other edge of her grief as a wiser and more loving individual. She said she didn’t want to be wiser and more loving; she just wanted her sister back.

I once talked to a woman who had just lost her husband to dementia. She was relatively young (probably in her 50’s). She told me she was scared she could never enjoy life again, but her bigger fear was that she could enjoy life again. And if she could enjoy life again, what would that mean about her? It terrified her that a week or so after her husband’s death she went out with some friends for margaritas and actually had a pretty good time.

“But my husband hadn’t known me for a year,” she said, as if she needed to defend herself. She certainly didn’t need to defend herself–not to me, anyway. “It’s like I didn’t know what stage to be in…so I went out for margaritas. In my mind, I shouldn’t have gone out for margaritas until he was gone at least a month.”

And then there was the woman who had lost her husband to Alzheimer’s after taking care of him for 15 years. She said when she passed she felt a lot of things, but the overwhelming feeling was uselessness. Who was she if she was no longer his caregiver? Was there even a reason to get up in the morning? Although she was continually frustrated by her husband’s dependence on her (and resentful of her caregiving responsibilities), she cried after he passed because no one needed her. Kubler-Ross never mentioned uselessness.

The problem with the Kuber-Ross stage theory is that it sets up some expectations and predictions for grief. And when we don’t follow the path we expect, we think we’re doing something wrong. This is even more evident when we experience “long goodbyes” like those that happen in Alzheimer’s.

When that woman asked me if she was supposed to grieve again when her husband died, I didn’t have a good answer. I told her however she felt at his death would be okay, and she wouldn’t really know until she got there. I drove two hours home that night (in a blizzard, nonetheless) thinking about what would have been a better response.

I wish I had said that there is no “supposed to” when it comes to grief.

Tequila in Dementialand

A woman had recently been admitted to hospice and her family wanted to go out of town to attend a wedding. The volunteer coordinator asked if I might be able to stay with her for an evening.

Bev (not her real name) was a divorcee in her 70’s who had had vascular dementia. She’d experienced several strokes and had been told she was in heart failure. I know she had a constellation of other health issues as well. As a former director of nursing at a nursing home, she knew where this was headed.

When I first came in, Bev offered me a drink. I made a rule for myself when I started volunteering for hospice to say yes when I was offered food or drink because people often feel the need to give me something and–to be honest–I really like eating and drinking. But when I asked Bev what she had, she threw me for a loop.

“There’s beer and wine in the fridge,” she said. “Do you like tequila? What do you like? There’s hard stuff, too.”

And she wasn’t kidding. Bev had the most well-stocked home bar I’d ever seen. Several kinds of tequila, rum, multiple flavors of vodka, whiskey, bourbon, you name it…. I’ve been to many bars that did not have that selection of alcohol.

“Do you have any soda?” I called from the kitchen.

“For a rum and Coke?” she asked. I laughed out loud, but it wasn’t a joke. I grabbed a Coke. Just a Coke.

Bev kept forgetting who I was and why I was at her house (although this didn’t stop her from continually offering me alcoholic beverages throughout the evening). She’d ask me to remind her who I was, but it didn’t seem to bother her in the least that there was someone in her house that she didn’t recognize.

Despite her dementia, Bev was pretty clear on some things. She knew she was in hospice, and she knew she had limited time. She was certain of how she wanted to die.

She told me that she had a large extended family and they spent a lot of time at her house. She told me that she thought it was partially because they loved her and partially because she kept her bar stocked. At least four nights a week she had a crowd at her house. They drank, played cards, watched movies… And she had already told her family that this was not going to change now that she was in hospice.

“The party goes on,” she told me. She didn’t want a bunch of solemn goodbyes.

Then she asked me if I’d pour her a glass of tequila. I didn’t know what to say. This was the first and last time a hospice patient had ever asked me to play bartender. I had a cell phone number for Bev’s daughter, so I decided to give her a call. I asked if her mother was allowed to have a glass to tequila.

The daughter said that Bev’s doctor had told them it was okay for Bev to have one drink each night. I felt a little bit uncomfortable pouring a drink for my hospice patient, so I brought her the bottle and a glass. With shaky hands, she poured it herself.

As we were sitting together and Bev was having her tequila, there was a knock on the door. It was two guys delivering a hospital bed. Bev’s daughter had indicated that they might be stopping by.

“Where does the bed go?” one of the guys asked.

“Right here,” said Bev, motioning to her dining room. The two guys and I gave her a funny look.

I decided I had better call Bev’s daughter. I explained to her that Bev was intent on having the hospital bed in the dining room. Bev’s daughter wanted to know why, so I asked Bev. She took a long drink of her tequila before answering.

She explained that she wanted to be in the midst of everyone. She didn’t want to be isolated upstairs in her bedroom as her condition progressed. And, she told us, she needed to make sure the bar was stocked. This was something that Bev had given some thought to. Her daughter hesitantly agreed, and the two guys brought the bed in.

They set up the bed and left. Bev turned to me and asked (again) who I was and why I was at her house. After I told her, she told me I should get myself a glass of tequila. My high school and college peers had not pressured me to drink as much as Bev was pressuring me to drink.

Although she was having difficulty remembering who I was, she was open to sharing details of her life with me. She told me that her husband had left her a few years ago. I had a feeling it was a few decades ago, but that didn’t matter. She mentioned that he “couldn’t handle the party of my life.” She told me that her husband thought she was an alcoholic.

“Maybe I am an alcoholic,” she said, leaning in. “But I’ve had a pretty good life.”

Her daughter got back about 10 pm. At this point, Bev was fighting to stay awake on the couch. As I left, she offered me a drink “for the road.” I was putting on my coat in the foyer when I heard her ask her daughter about me.

“Now, who was that? She seemed nice but I guess she doesn’t drink. I offered her the special tequila,” she said.

About a month later, the volunteer coordinator called to let me know that Bev had passed away. I didn’t ask for any details. I wanted to think she passed away in that hospital bed in the dining room with the party continuing around her.

I can’t drink straight tequila, but that night I had a margarita.

Bev was wrong about me. I do drink. I only wish I could’ve used some of her good tequila in that margarita.