Mirrors, Strangers, and Friends in Dementialand

I know a man who accused his wife of cheating because this old guy showed up in their bedroom at night. I recently talked to the daughter of a man who refuses to take showers because he is sick of a creepy dude watching him. A woman at a local nursing home thinks that the woman in the mirror is actually the woman in the next room, and she keeps telling that woman to find a hobby instead of sitting there all day. And I know multiple individuals with dementia who have told family members that people are breaking into their homes. A few have even called the police.

When I was a kid, my mom worked at a nursing home. I remember one particular incident like it was yesterday–although it was (gasp) about 30 years ago.

My mom, a resident, and I were walking down a hallway. There was an expansive mirror on one side of the hallway. The resident had taken a fall a few days before. The fall had left her with nasty black eye and bruising all over one side of her face.

The resident caught a glimpse of herself in the mirror and froze. I thought she was about to make a comment about how awful her face looked, but she didn’t. She didn’t even know it was her face.

“What the hell happened to that old bag?” she exclaimed.

I remember being fascinated with how this person could look in a mirror at herself and think it was someone else. As I sit here thirty years later, I still find this one of the saddest, scariest, and most interesting things about dementia. Seeing a person look in the mirror and not recognize themselves always takes my breath away.

I know a man who accused his wife of cheating because this old guy showed up in their bedroom at night. I recently talked to the daughter of a man who refuses to take showers because he is sick of a creepy dude watching him. A woman at a local nursing home thinks that the woman in the mirror is actually the woman in the next room, and she keeps telling that woman to find a hobby instead of sitting there all day. And I know multiple individuals with dementia who have told family members that people are breaking into their homes. A few have even called the police.

A woman in a support group told me that one day she walked into the bathroom to see her mother washing her face–except it was the face in the mirror. She was getting angry that the woman wouldn’t stay still.

Mirrors are confusing and often agitating for people with dementia. There’s an easy solution, of course. You can take them down. In a family home, curtain rods can be placed over mirrors so that they have adjustable curtains or drapes.

I do know several people with dementia who have made friends with the figure in the mirror. One man chats away to his buddy as he brushes his teeth and bathes. He seems to think it’s someone he served with when he was in the Navy. Another women I know is convinced it is her mother who stares back at her, and she finds this comforting.

The grandmother of one of my friends used her friend in the mirror to reinforce her own opinions. My friend would walk into the nursing home room, and her grandma would say something like “Your shirt is too low cut. You look like a hussy.” Then her grandma would motion to her friend in the mirror and say, “And she agrees with me.”

Fortunately, her family decided to accept the friend in the mirror as part of their grandma’s reality rather than argue with her perception. My friend says she was outvoted on everything–because of that dang lady in the mirror who seemed to agree with grandma on fashion, politics, religion, and TV shows. (The lady in the mirror always wanted to watch Divorce Court, which happened to be grandma’s favorite show as well. What a coincidence.)

The young adult son of a woman with Alzheimer’s told me that he was somewhat prepared for the day that his mother didn’t recognize them. It wasn’t easy, but he saw it coming. He expected there’d be a moment when his mother would look at him blankly and not recall who he was. All the brochures and website had warned him.

He told me was unprepared for the day their mom did not recognize herself. She looked in a mirror and asked about the person looking back at her.

Her son said, “That’s my beautiful mom.”

She responded, “Oh, I don’t know your mom, honey.”

How strange is a disease that it can make you forget yourself?

 

 

The Most Difficult Dementialand Post I Have Written to Date (aka What Dementia has in Common with Depression)

This was not the post I intended to publish this morning. In fact, I have a post written on police officers and how they work to help those with dementia…but that has to wait until next week.

My heart is somewhere else right now.

Wednesday there was a suicide on the college campus where I work as a professor. Her name was Katie, and I didn’t know her. In fact, this was her first semester here. Her peers and professors tell me she was well-liked and bright with a smile that lit up a room. She had plenty of friends and a supportive family. Yet, she struggled with depression and anxiety.

The more I hear about Katie, the more I relate to her. I even lived on the same residence hall floor where Katie lived and died. I’ve never been in a position where I considered taking my own life, but I was once a college student with clinical depression. I felt like a failure because, despite knowing I was loved and feeling like I had a bright future, I couldn’t find a way to get rid of a plague that kept me from being me. I lost a drastic amount of weight. I was exhausted but only slept a couple of hours a night. I just wanted to feel normal. I knew there was nothing in my life horrible enough to warrant how I felt, but I still couldn’t make myself feel better no matter what I tried.

This continued for three months before I marched myself to the student health center and said I thought I had depression. The nurse treated me with strikingly little compassion. Little did I know it was the beginning of a journey (still on-going) of working with health care providers with various levels of knowledge and kindness. I got through it, though, and very slowly things got better…until they got worse a couple of years later. I survived that, too, and I’ve survived a few more major depressive episodes since. I have no doubt it’ll happen again, and I’ll endure that as well.

Fifteen years later, I’ve finally come up with a way to describe depression…or at least my experiences with depression. It’s like getting a phone call with tragic news (like the death of someone you love or finding out a family member has cancer). Your stomach turns. A weight settles on your shoulders. You don’t know how you will cope with whatever news you’ve just been given. You don’t know what to do next. That’s what I feel like when I’m depressed–except there’s no tragic news. I walk around carrying that feelings for days or weeks at a time. It still happens, but it’s less scary than it was that first time. It’s less scary because I know that I won’t always feel that way. It can and will get better.

I’ve come to terms with taking anti-depressants for the rest of my life. They don’t cure depression, but I don’t know where I’d be without them. (And, yes, I am prepared for the onslaught of emails and comments I may receive about how I should stop taking anti-depressants and—insert your genius solution here—turn to God and more specifically YOUR church, eat more good fats, find a good chiropractor, etc.) I don’t think everyone should be on an anti-depressant. I think there are many people who will need them at certain points in their life but then be able to stop taking them. And then there are people like me…who may have to take them their entire life. Ten years ago my goal was to wean myself off anti-depressants. Now my goal is to be happy.

One of the most difficult aspects of being a person with depression is listening to other people make comments that imply you just aren’t trying hard enough to be happy, that you’re making a decision to be miserable, or that you just have a bad attitude. I have been told that I have no reason to be depressed and that there are lots of people worse off than me. People have said that I just need to think more positively. When I have been at my lowest, I have been told to cheer up. (Gosh! If only I had thought of that! How helpful!) It’s similar to telling someone with no legs to go run a 5k. Depression is an illness, not a choice.

A few years ago, I overheard a conversation at a nursing home that helped me relate to people with dementia on the basis of my own depression. A nurse asked a resident if she had eaten her evening snack yet. The resident said she didn’t remember. The nurse told the resident that she wasn’t supposed to give her more than one snack, so she’d have to think really hard to remember if she’d eaten her snack. The resident, understandably, got angry.

“Don’t you think I’d remember if I could?” she asked. “Do you think I’m just not trying?”

Not all people with dementia have that much insight, but she had a point. And I made a connection.

There are people who think having depression means you’re just not trying hard enough to be happy. There are also people who think having dementia means you’re just not trying hard enough to remember.

Physical illness and injuries are easier to understand–not just for those around us but for us. I’ve had kidney stones and knee surgery. I never felt betrayed by my kidneys or my left knee. I have felt betrayed by my brain when I’ve struggled with depression. While my kidneys and my knees are part of me, my brain is…me. I feel like my battle with depression is a battle against myself. And it’s hard to wrap my mind around that. How do you separate your illness from yourself when your illness is at the core of who you are (your thoughts, your emotion, your cognition)?

Someone with Alzheimer’s once told me that she felt like her brain was cheating on her. It was a traitor. She told me that she was trying so desperately hard to do everyday things–things that came easily to her in the past–and her brain just wasn’t on board. When she was trying harder than she ever had in her life, people around her were doubting she was trying at all. Her awareness of this made me particularly sad, but I am sure many people with dementia have similar feelings whether or not they are able to express them.

A few years ago, I had a college student who had been in Iraq. He came home with a brain injury that caused dementia-like symptoms as well as anxiety and depression. I tried my best to accommodate his desire to continue as a college student and finish his degree. One day in my office he made a comment about being jealous of veterans who came home with more “visible” injuries, like amputations. He told me that they were always being thanked for their service and called heroes. He felt he was just perceived as a slacker who had given up on life–when he was trying harder than he had ever tried before. For days, I thought about how ridiculous it seemed that a person would be jealous of someone who lost a limb at war, but I really did get it.

Physical injuries and illnesses are somehow more legitimate and heroic than health issues that we cannot see with our eyes. I’ve seen this phenomenon when people with dementia are humiliated for not remembering loved ones (“You know who that is, Grandma!”). We do a better job of being understanding when someone can’t walk than when they can’t remember. We can see their legs wasting away, but we can’t see that their brain showing signs of decay and shrinkage…even when that’s exactly what may be happening.

This post is a bit of a “coming out” for me. I’ve come a long way from being that depressed college student living on the 5th floor of Bender Hall. I still have depression. I’m not cured, and I’ve accepted that I never will be.

I hesitated to publish a post where talked about my own struggles with depression. In fact, I even sent a text to two friends last night who I knew would encourage me to go ahead and hit “publish” because I knew I needed the push.

I am ashamed to admit that I hesitated to publish this because of the stigma that surrounds mental health issues like depression. However, that’s not fair of me. It’s not fair of me to be “in the closet” about my depression when I continually applaud people with Alzheimer’s and other dementias for speaking out in a world that still stigmatizes dementia.

I can’t encourage people to speak out about dementia if I’m unwilling to speak out about depression.

Let’s get over the stigma.

Critical Nitwits in Dementialand

I was speaking at a support group when an older woman told me that her husband, who had Alzheimer’s, needed 24/7 care. She said she was able to be home most of the time, but she was continuing to work about ten hours a week at a liquor store. She explained that her job paid little more than minimum wage. She paid more for her husband’s care than she made at the liquor store. A lot more.

Then she listed off the reasons that she kept the job. First, she enjoyed it. She liked the social aspect of talking to people about booze. Second, she wasn’t sure if she could get the job back if she quit, and she didn’t know what the future held. Third, she needed to get out of the house sometimes or she would lose her mind. Fourth…I stopped her before the got to the fourth reason. I don’t know how many reasons were on the list.

“You can stop justifying this to me,” I told her.

“So you understand?” she asked.

I did understand, but that didn’t really matter. What did matter was that she understood. She understood her reasons for continuing to work, and they made sense to her. That’s what mattered. She may have been looking for some support for her decision to keep working, and I get that. However, the way she justified her decision to me indicated that she felt the need to justify it to others in her life as well. It bothered me that she felt the need to defend her choice to continue working.

Caregivers have to make a lot of rough decisions. Sometimes those decisions are supported by others. Sometimes they are not.

I don’t understand how you can put Dad in a nursing home.

I don’t get why you are touring assisted livings. Grandma is fine at home.

It doesn’t make sense that you took her off that drug.

Mom is a safe driver. You broke her heart when you took her keys away.

Most people with dementia have one or two primary care partners. I often work with these primary care partners, who feel that their decisions are criticized by those a bit more removed from the situation. And these care partners spend a lot of time explaining and justifying their decisions.

I used to try to help these care partners come up with ways to effectively communicate their reasoning. To some extent, I still do this. However, I’ve shifted my focus to helping care partners cope with those in their life who might be judgmental of their decision-making.

If you are a care partner who is questioned about your decisions, explain concisely why you did what you chose to do. And then…stop explaining it. Just stop. If they don’t get it after one explanation, they won’t get it after 27 explanations. Just move on with the knowledge that you are doing the best that you can. And that’s all you can do.

We make the best decisions we can with the knowledge we have at the time. Sometimes we make bad decisions in caregiving, as we are prone to doing in other areas of life as well. Maybe your family and friends are eager to point out when you’ve made a bad decision. Some people are like that. You can’t change them.

Often it’s a relative who shows up in town for a weekend and has “all the answers.” (Yeah, that’s sarcasm. In fact, I speak fluent sarcasm.) Sometimes it’s a friend whose well-intentioned advice isn’t that helpful. I see caregivers who spend a lot of time and energy explaining their decisions to these people, and caregivers don’t have excess time and energy. So you know what? Stop explaining yourself. Stop justifying your decisions. Just stop.

There are two types of people. The first type of person understands you and supports you. There is no reason you need to explain or defend yourself to them. They understand that maybe your decision is different than the one they would have made, but they are a different person than you are. They understand that you have to do what works in your situation. They get it. If you are lucky, you have many people like this in your life. If you don’t, you need to find more…immediately.

Then there’s the second type of person. Perhaps you have a few of these people in your life. (Well, if you are lucky, it’s only a few.) They look for fault in the people around them. They forget that different things work for different people. They expect that everyone is like them and should make the same decisions they would make in similar circumstances. They listen with the goal of finding fault in what they hear rather than finding understanding or common ground. If you have many people like this in your life, you may need to reassess your social circle…immediately.

There’s no reason to justify your decisions to the first type of person, and it’s futile to explain them to the second type of person. Save your breath.

We can’t always eliminate the second type of person from our lives–although when it’s reasonable, it’s worth considering. What we can do is stop trying to win their approval…because we never will. You set yourself up for failure when your confidence about your caregiving decisions is dependent on critical nitwits. You have to find a way to care less about they think. You’ve got to tune them out.

The best way to do this is to fill your life with as many supportive people as possible. You need to find people whose supportive voices drown out the unsupportive voices. Maybe you find these people at a support group. Maybe you find them online. Maybe they’re at your church. But you find them.

If my husband had Alzheimer’s and needed 24/7 care, would I work ten hours a week at a liquor store even if the job actually cost me more money than it paid?

Maybe. I’m honestly not sure. But it doesn’t matter.

It doesn’t matter because the woman at the support group is not me. We are different people. What works for one caregiver may not work for someone else.

She didn’t have to explain to me why she kept her job. It doesn’t matter if I get it. It matters that she gets it.

Aggressive Behavior in Dementialand

My cell phone rings in the morning as I’m blowdrying my hair before work. I look at the number, and I’m not sure who’s calling. I’m tempted to assume it’s a wrong number and not answer. I’m running late. I figure if it’s someone I know, they can leave a voicemail. However, something tells me to answer.

It’s a friend of a friend that I’ve met with before. I’ll call her Laura. Her and her husband, Al, are in their early 70’s. He has Alzheimer’s. He was diagnosed about five years ago. The last time I talked to Laura, Al was able to work at a part-time job and drive.

When I answer the phone, Laura tells me that she doesn’t know what to do. Al has been declining quickly. He needs help using the restroom. He forgets to eat. The other day he didn’t even know how to open a door.

But that’s not why Laura called. She called because he didn’t sleep last night. He wandered around the house, disorientated and muttering to himself. At about 3 am, she tried to get him to come to bed. It was dark and he didn’t recognize her. He pushed her down on the couch and started to put pressure on her neck, as if he were trying to choke her. Laura mentions several times that he didn’t leave any marks on her neck. I’m not sure if she’s trying to reassure me or herself.

Then he shuffled off and went out onto the deck. Laura spent the next couple of hours watching him from the window. She was worried he’d wander off and get lost, but she was also scared to try to convince him to come inside.

“I don’t know what to think,” Laura tells me. “He’s a gentle guy and we’ve always had a great marriage. He’s never been abusive.”

I explain that this has nothing to do with whether or not he’s a kind and gentle person. It has nothing to do with their marriage. It has everything to do with Alzheimer’s.

I tell her that he’s scared. The rest of the world may perceive Al as being in his own home–a familiar environment in which he has resided for decades–with his wife of almost 50 years. However, Al’s behavior tells me that he wasn’t in a familiar environment with a familiar person. He was in a scary place where he was approached by someone he didn’t recognize.

The term aggression in relation to people with dementia makes me uncomfortable. When we say someone is aggressive, we generally mean that they are unprovoked (rather than defending themselves) and intending to use force to hurt someone. However, I would argue that aggression among those with dementia is almost always a result of fear.

The way that someone with dementia perceives the world around them often results in a feeling of being threatened. What does anyone do when they are threatened? They lash out. It’s a natural reaction. When people with dementia show aggressive behaviors, these behaviors often make sense if we consider how they might be perceiving the world around them.

I ask Laura a few more questions. I learn that Al used to be a hunter, and Laura came home recently to find that he pulled out a few guns and put them on the kitchen table. He explained to her that someone had been messing around in the garage, so he had to be prepared. It scared Laura enough that she asked her son to come and get Al’s guns.

“I’m pretty sure that no one was in the garage,” she tells me. “But I guess you never know.”

On another day, he was convinced that “the militia” was after him. He had a bunch of knives out on the counter. He had also kicked the dog a few times, which was something the “old Al” would never have done. It horrified Laura.

Laura keeps telling me that she doesn’t think Al would ever hurt her. (She’s more worried about the dog, she says.) I have to think that if she really believed this she would not have called me before 7 am. She’s scared.

I tell her that she needs to get Al a medical check up. I am particularly concerned that he may have a urinary tract infection, which is often linked to aggressive behavior in those with dementia. She agrees he needs to go to the doctor, but she has no idea how to get him in the car. She doesn’t think he’ll go willingly.

Then I ask her if she’s checking into long term care options. There is a pause. The kind of pause where you wonder if the call has been dropped. Or if someone has hung up on you.

Finally, Laura tells me that she can’t do it. She can’t even think about Al living in a nursing home. He’s been a good husband and she will take care of him at home. She says he deserves that, and she promised their kids that he’d stay at home. She insists she’s doing okay. I point out that she wouldn’t have called me if she was doing okay. Dementia caregivers don’t call me to say they are doing fine.

I tell Laura that Alzheimer’s is a cruel beast, and sometimes it forces us to make choices that we don’t want to make. Most people are not really excited about the idea of someone that they love going to a nursing home or memory care community, but sometimes it’s the decision we have to make. I’m concerned that he needs a level of care that can no longer be provided in home. And I’m concerned about her well-being and safety.

I tell her that she can’t continue to live like this. She’s not sleeping. She’s not eating. She says she’s sick to her stomach all the time. She’s particularly worried about him hurting the dog. She can’t have people over to the house because it seems to agitate him. And she can no longer leave the house because she’s not comfortable leaving him alone.

“I can handle him at home,” she says. “I mean, how long can this go on?” I have no idea if this is a question she wants me to answer or a rhetorical question. I answer anyway. I tell her it could actually go on for quite some time.

I give her some advice on community resources. I tell her not to be afraid to call the police if she has concerns about her safety or Al’s safety. We talk about support groups, but she doesn’t seem interested. I suggest she start checking into nursing homes and memory care communities. Although she earlier said she couldn’t do it, she says she’ll consider it. She might be appeasing me.

Then I hang up my phone and get back to drying my hair. I head to work and get on with my day. I’m not sure if what I said to Laura was even close to helpful. Yet I’m not sure what I could have said differently.

That evening I get a call from Laura. She tells me Al is in the psych ward. She is upset because she thinks they gave him too many sedatives when he arrived. In her words, he’s a zombie. She’s also frustrated because they used restraints when she didn’t feel it was necessary. A social worker told her that there’s no way she can take Al home. They need to talk about other options.

Yet, she also tells me she’s feeling relieved that he’s out of the house, and she’s excited to get a decent night’s sleep. In the next breath, she says she’s feeling guilty for feeling relieved.

I hang up the phone as my husband is getting home from the gym. I pour a glass of Riesling. We sit on the couch together and watch some mindless TV with our dogs. We both vent about work. We talk about the weekend plans we have with friends.

My mind drifts, and I wonder if there could ever be a day when my husband sees me as a stranger. Despite my experience with dementia, I can’t fathom it. I can’t wrap my mind around that possibility. It’s not something that could happen to us. Not now, not in five decades, not ever.

I can’t stop thinking about how cruel it is that fifty beautiful years of marriage must end this way for Al and Laura. I want Laura to have peace, but I can’t tell her how to get there. I can explain dementia, but I can’t help her make sense of it. Sometimes there isn’t a silver lining, and sometimes you come up empty in a search for meaning.

Forgetting Your Manners (Among Other Things) in Dementialand

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Special and Weird Kind of Loneliness in Dementialand

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

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

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

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

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

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

That’s what I thought that quote was about.

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

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

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

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

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

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

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

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

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

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

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

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

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

Before and After in Dementialand (Or Why I Watch TLC and HGTV)

I was talking to some friends a few weeks back, and the TV show My 600-Pound Life on TLC came up in conversation. It’s a reality show about super-obese individuals who get weight loss surgery and attempt to change their lives for the better.

For some reason, I was hesitant to admit to my friends that I watch the show. I wanted to say I had never heard of it. I wanted to say I had no interest in watching a reality show like that. Yet, the truth is that I have a season pass on my DVR. I started thinking about what it was about this particular show that I enjoy, and I finally realized why it appeals me. I love a good before-and-after.

I used to watch What Not to Wear. I DVR’ed that one as well. I would watch the beginning but then fast forward to the end. I didn’t care about all the shopping and hair talk in the middle. The make-up tips didn’t interest me. I only cared about the before and the after.

I’m really not that into homes, design, or decorating, but I watch a bunch of shows on HGTV. Why? Because I enjoy the transformation. I love the idea of taking something that is in shambles and making it something wonderful. I also have somewhat of a crush on the Property Brother that does the construction. (The one that does the real estate number-crunching stuff just isn’t my type.)

I really get into those house-flipping shows. There’s Flip or Flop, Rehab Addict, Fixer Upper… If you know me at all, you know I have no interest in flipping a house. If I ever talk about flipping a house, please do an intervention. I like the idea of flipping a house, although it’s not something I have the skills to pursue. I just like the notion of transforming something into something much better. It’s about the before-and-after. The before is dull and drab. The after is bright and shiny.

I also watch Intervention on A&E for the before-and-after effect. Someone might be a drug addict before but maybe–just maybe–they can be a productive member of society after. There a certain level of hope in that.

In grad school, I lived with my friend, Lisa. We would watch Intervention every Sunday at 9 pm. Exactly at 9:40 (as the family was just gathering for the intervention), Lisa would say it was time for her to go to bed. It still bothers me that she didn’t get to see the after of all those drug addicts. Why watch if you don’t get a chance to see the after? Couldn’t she stay up past her bedtime just one night a week? (As a side note: Lisa was a pretty great roommate. My only complaints about her are that she wouldn’t watch the end of Intervention with me and she had the willpower to eat only one cookie per day out of a huge bag in the freezer.)

Families impacted by dementia are often caught up in the before-and-after. There are the years before dementia. Then there’s the after. Everyone with dementia is different, and dementia affects everyone in a different way. But there’s no doubt that the after is not the same as the before. (A person with Alzheimer’s once said to me, “I’m still me but I’m a different me.”)

When I meet someone with dementia that has progressed past the earlier stages, I notice that their family often needs to tell me about the before. Maybe she used to be a successful real estate agent who could sell any house in a week. Maybe he was a teacher who touched a thousand lives. Maybe he was a cop or a firefighter who selflessly served his community. Maybe she made the absolute best apple pies on the face of the earth.

And I always listen when they tell me about the before. There is value in knowing about the before. It helps us to connect with an individual with dementia when we know where they’ve been, but I feel like the family is sometimes telling us this for a different reason. They are telling us about the before because the after isn’t enough. They want us to understand that this person is more than what we see in front of us.

I once met a woman with Alzheimer’s who had been a fantastic golfer. She and her husband traveled around the country playing in golf tournaments. Her family told me that she had been incredibly competitive…to the point where she would trash talk other female golfers. Her kids told me that she didn’t make a lot of friends on the golf course, but she won a lot of huge trophies which now decorated her room at the memory care community as reminder of her before. She once told an employee that she won all the trophies for having the largest cow at the state fair. Obviously, they didn’t hold the same meaning to her that they did to her family. They were a before thing. She was in the after.

As her Alzheimer’s progressed, she could no longer go out and play nine holes of golf. Her kids started taking her to the driving range until she was unable to do that. After she moved into memory care, a creative staff member went to Walmart and bought a few items so they could set up a mini-golf course in the hallway. The woman lit up like the staff had not seen before. The ball never went in the hole, but she would putt up and down the hallway for hours.

The staff expected her family to be excited when they arrived and saw how much fun she was having. They were not excited. In fact, they were angry and saddened. They thought it was demeaning that a woman who had once been a competitive golfer was now aimlessly pushing a wiffle ball up and down the hallway with a plastic golf club. They were caught up in comparing the before to the after.

I realized recently that my love of the before-and-after does not extend to working with individuals with dementia. It’s not that I don’t care about the before. It’s fun to hear about a person’s past, and the before holds some keys to what might work when you try to improve the qualify of life for someone with dementia. Most importantly, no one wants their life to be forgotten. We want to know that people will remember what we did and how we did it. We want to know that what we’ve done has been meaningful and worthy of remembering–especially if don’t remember it ourselves.

Although we should remember the before, we also need to let go of it. If we don’t let go of the before, we can’t appreciate the after. This is easier for a professional caregiver than a family caregiver. Professional caregivers don’t have a before in their mind when they work with someone who has dementia. Family caregivers often can’t get the before out of their mind.

I have recently realized that I must not be the only person who enjoys TV shows based on the before-and-after concept. There’s Restaurant: Impossible, Biggest Loser, Extreme Weight Loss, Flea Market Flip….You can probably name many more if you think about.
But there is no before-and-after reality TV show about Dementialand. I’m not sure how many people would tune in. When the after isn’t always bright and shiny, sometimes the show loses its appeal.

Small Victories in Dementialand

I try to respect people’s privacy. Within my blog, I change names and identifying details of individuals. And, when possible, I ask for permission to tell stories.

Almost without exception, people want their stories told. They are excited about the possibility they have had an insight or experience that others might find interesting or useful. They may not want their names given, but they want their stories out there. They want their stories told not because they want attention or credit, but because their story might help someone in a similar situation. And I love that most people are like this. When it is possible, they want to use their own struggles to make life a little easier for someone else, even if they’ve never met that someone.

I had a “first” of sorts this week. I was out running errands wearing bleach-stained sweats and a baseball hat. It was one of those days when you hope you don’t see anyone you know, but I did. I happened to run into an acquaintance, Shirley, who reads my blog, and she told me a story.

After she finished the story and was walking away, she said, “If you think this story could help someone else, please feel free to repeat.” I do think it could help someone else, so I will repeat.

Shirley’s mom has Alzheimer’s and lives in a nursing home. At this point, she rarely remembers family members, and Shirley has started calling her by her first name because “Mom” doesn’t make sense to someone who doesn’t remember she has kids.

A while back, Shirley and a family friend were visiting the nursing home. They had brought in some Blizzards from Dairy Queen and were helping Shirley eat hers.

With a mouthful of Oreo Blizzard, Shirley’s mom said to Shirley, “Honey, you make good food. Is there a comment box here? I want to write a comment about how nice you are. Maybe you’ll get a raise.”

As Shirley told me this story, tears welled up in her eyes. She explained that as a kid she had always sought her mom’s approval but never felt like her mom was able to express admiration or pride. She never felt quite good enough for her mom. Despite her mom identifying her as a nursing home staff member, Shirley had this overwhelming feeling of satisfaction that she had done something that met her mom’s approval.

As they left the nursing home, the family friend said to Shirley, “It’s so hard for me to watch how your mom doesn’t even recognize you. I feel so bad for you.”

I talked with Shirley about how two people can perceive the same situation very differently. Although the friend saw this interaction as sad, Shirley left the nursing home with a sense of peace and contentment she hadn’t felt in a long time. What her mom had said was so meaningful that it took her breath away. And her friend simply saw a woman with dementia who no longer recognized her own daughter.

Dementia is not a “look on the bright side” type of thing. It’s a fatal disease that leads to emotional and physical pain. It gradually robs us of our friends and family members. We can’t prevent it, and we can’t slow its progress. I would never tell a family or individual to see the glass as half full after there is a diagnosis of Alzheimer’s or a related dementia.

And, yet, sometimes there are these poignant moments, and you have a choice about how you interpret them. When you are able to find a positive way to interpret an interaction with someone who has dementia (when you could interpret it negatively), you win. It’s absolutely a victory.

Sometimes you don’t get a lot of victories with dementia. So you gotta grab them when you can.

In that moment, it was Shirley 1, Alzheimer’s 0. Maybe the score would be different the next day, or even in 10 minutes. But you only focus on the game you’re playing right now.

Thank you for sharing that story with me, Shirley. I rarely cry, but you almost made me tear up in the snack aisle at Walgreens.

Why There Are No Superheroes in Dementialand

Tuesday was National Superhero Day. There’s a day for everything, right? Pancake Day, Oyster Day, Star Wars Day.

Superhero Day got me thinking in a way that National Frozen Food Day, Johnny Appleseed Day, and Goddess of Fertility Day did not. (However, National Frozen Food Day did make me crave frozen French toast sticks and tater tots.)

I’ve been thinking about how I don’t believe in superheroes, and I take issue when people call other people superheros.

I have a friend who is pretty impressive. She gets up every morning at 4 and runs 6-10 miles. Then she works all day. At night, she teaches a couple of yoga classes. She’s kind, funny, and humble. I don’t know how she does it. I’ve heard a lot of people say she must be a superhero.

But saying she’s a superhero doesn’t do her justice. Superheroes have special powers. They have capabilities that the rest of us don’t have. That means superheroes aren’t really that inspiring or impressive. My friend doesn’t have any special powers. She does what she does because she chooses to rather than because she’s some special breed. I think that’s more powerful than having some sort of superpower status.

I’m not inspired to go out and fight crime in my community because a superhero does it. I might be more inspired if a real person did it. To me, real people doing impressive things are infinitely more amazing than superheroes.

I am in awe of some of the dementia caregivers I have met. They are family members, friends, neighbors. They never sought out the caregiving role. It wasn’t a job they applied for and it wasn’t a path they chose, but they do the best they can.

It’s a guy who plays Uno with his wife for hours even though she doesn’t remember the rules and they are basically pushing cards around on the table aimlessly. And it’s not a burden to him. He loves every minute of it and knows someday he’ll cherish this time spent together.

It’s a woman who patiently answers the same question over and over when her husband with Alzheimer’s asks it …again…again…and again. And, amazingly, she answers in the exact same tone of voice the first time and the thirteenth time.

It’s a daughter who knows her mom’s medical record like the back of her hand. She organized and systematic in caregiving. When her mom is hospitalized and a medication mistake is made, she’s quick to correct it.

And I’ve often mistaken some people with dementia for superheroes. I know people in the earlier stages of dementia who do public speaking, sit on panels, and write books. I am in awe of them for the courage they show in times of uncertainly. They put themselves out there despite their own fears. They help me learn things about dementia that I could learn in no other way. They are making more of a difference than they realize.

A couple of days after September 11, 2001, I heard something that has stuck with me. When there is a disaster or a tragedy, you will see good-hearted, kind, and giving people stepping up to the plate. You have to look for those people and notice that positivity or your spirit can be destroyed by witnessing the devastation. And I was amazed (and continue to be amazed) at the good that 9/11 brought out in people.

But all those people sifting through debris at the World Trade Center? They weren’t superheroes. They were ordinary people stepping up to the plate in extraordinary ways. They were real. And I don’t think we can fully appreciate their actions unless we understand that they were real people with friends, families, strengths, vulnerabilities, fears, and favorite TV shows.

I feel the same way about some of the people I’ve met in the dementia community. They step up to the plate in times of struggle and tragedy. I remember having a conversation with the son of a middle-aged woman who had dementia. He had changed his work schedule to work third shift so that he could stay with his mom while his father worked during the day. He and his father had worked out this plan to delay placing his mother in a memory care unit.

When I was speaking with this guy after a support group meeting, I noticed a woman standing nearby eavesdropping on our conversation. Finally, she jumped in and said, “Wow. You sound like Superman.”

The man made some jokes about how no one had ever seen Superman and him in the same room. Then he pointed out that he was in no way a superhero. In fact, he was sleep-deprived son who was just trying not to screw everything up. He said that some of his days with his mom were epic disasters, but he kept thinking about how he could do better–and he kept showing up.

He told us that a few weeks ago he had forgotten to get gas and found himself stranded and embarrassed on the interstate…with his mom in the passenger seat. And a good day was when he had time to grab matching socks. He confided that he had no idea how much longer he could do this. He said that he often wondered if he needed to be on anti-depressant and he really wanted to start going to church again but Sundays were his only day to sleep in.

It’s only after I hear about the real struggles of caregivers that I appreciate what they do.

Superheroes don’t impress me. Real people do.

Stuffed Cats and Real Cats in Dementialand

I once got in a tense argument about whether a stuffed cat was a real cat. For the record, it was a stuffed cat but really it was a real cat.

About ten years ago, I was visiting with a hospice patient on a weekly basis. Linda-not her real name-had vascular dementia (as well as multiple other health conditions) and lived at an assisted living. She was reserved when I first started stopping by, and I had trouble connecting with her.

One day, I notice a stuffed cat sitting on her bed. She sees me looking at it and asks if I like cats. I tell her that I do. She smiles.

“Well,” she says. “You’ll love my Tiger. He is quite a cat.”

I’m not sure if she thinks Tiger was a real cat or not, so I walk over to pet him.

“Be careful,” she warns. “Tiger still has his claws.”

Yep. Linda thinks Tiger is a real cat. I shift gears and start interacting with Tiger as if he is a real cat. In other words, I step into her reality. Linda perks up some, and suddenly we have a connection. I figure out that Tiger is the key to engaging her.

Every time I stop by, I ask about Tiger right after I come in. He’s usually on her bed. Sometimes I pick him up and put him on the windowsill so he can watch the birds. A few times we find a nice sun puddle on the floor for him. One day she mentions that Tiger looks chunkier and accuses me of sneaking him tuna. I confess, and she smiles. I even buy Tiger a toy. Yes, I spend $5 on a toy for a stuffed cat. And Linda is beside herself with excitement, and I’ve forgotten that Tiger isn’t a real, living, breathing feline.

I come by one summer day while her son is visiting. When I ask Linda about Tiger, he rolls his eyes.

He tells me, “I’ve told her time and time again that Tiger has been dead for five years. He got hit by a car on the highway.” Linda looks at him, and then at me. I’m really not sure what to say.

“Actually, Tiger’s okay. He’s right here,” I say tentatively. The son takes a long look at me as I pet Tiger. I’m pretty sure he’s wondering if I’m the biggest idiot he’s ever met.

“You are petting a stuffed cat,” he says. “That’s not a live cat. It’s stuffed.” Let’s just say Linda’s son and I are not on the same page here, and I’m not about to let him break his mother’s heart.

“No, Tiger is a real. Alive and well,” I say. This is awkward. The son is not going to relent, and neither am I. I have now decided I am not going to admit to the son that the cat is stuffed. And once I pick a battle, I’m all in. He glares at me.

“Do you really not know this cat is stuffed? We bought him at Walmart,” he responds. “This is a stuffed cat.” At this point I should take this guy out in the hallway and explain why I am set on insisting Tiger is a real cat, but I don’t think of that at the time.

“Well, Linda knows that Tiger is real, so Tiger is real,” I say. At this point, I have Tiger cradled in my arms. I’m squeezing him tighter and tighter as I get more and more frustrated. If Tiger were alive, I might have suffocated him.

The son stares me down. It’s intense. Linda looks at me, and then at her son. He sighs and walks into the other room. I consider it a victory.