Saying No and Leaving Early in Dementialand (aka I Wish You the Best Possible Holidays)

You do not have to buy a present for every single person you’ve called a friend since middle school. If you don’t have the time or energy to send out holiday cards, then don’t do it. Maybe Midnight mass just isn’t in the cards this year. No one ever died from only having one choice of pie at a holiday dinner (unless it’s pumpkin pie, which is disgusting since pumpkin is a decorative item and not a real food–just an opinion).

If you’ve read my blog for a while now, this post might seem somewhat familiar. Every fall, I feel the need to kick off the holidays with a bit of advice for my readers with dementia and for those who love them.

If you live in America, you know that Thanksgiving is approaching. And then Christmas is right on its heels. I know that our belief systems and geographic locations dictate which holidays we celebrate. And I don’t care what holidays you celebrate….Hanukkah, Winter Solstice, Kwanzaa, Boxing Day, Faux Fur Day (which is on December 1 and is seriously a real thing)… I know I’m missing dozens. Don’t hold that against me.

My message is intended for you no matter your religion and cultural affiliation. Just change the customs and rituals. Insert your own. If there’s one thing I know about dementia, it’s that it doesn’t discriminate based on ethnicity or religion (or sexual orientation or political party, for that matter). It’s all about equality here in dementialand.

Here goes:

You do not have to do every single thing you’ve done on every holiday in the past. Yes, you can skip the community tree lighting. No, you don’t have to serve the holiday meal at the Salvation Army just because you’ve done it five consecutive years. Yes, it’s okay to give cash as gifts so you don’t have to brave the madhouse of humanity know as the mall. No, the neighbors won’t judge you if you don’t put up lights this year (and if they do, screw them).

If Grandma seems stressed out by being around the chaos that is the family holiday gathering, it’s okay to take her back to the nursing home earlier than planned. If your mom–who is approaching end-stage dementia–doesn’t have any interest in eating the turkey or ham, it’s fine to let her have a few cookies instead.

Grandpa has always made it a point to go to the kid’s holiday programs at school, but we may have to accept that it’s just too much this year. Or maybe we can take him for the 10 minutes his grandkids perform and then get him the heck out of there before he has what his family refers to as a “meltdown.”

We love our family rituals. And family rituals can be fantastic–but we can’t be so tied to a ritual that we force a person with dementia into a situation that isn’t a good fit.

One of my friends told me that her extended family goes to a holiday parade in Chicago together every year. It’s a long drive and a lot of walking. And—this is a part that many of us, even those without dementia, struggle with–lots of people in close quarters. Her mother, who has younger-onset Alzheimer’s, refused to miss it.

To make a long story short, her mother was exhausted by the time the parade started. The sights and sounds were just….too much. Her exhaustion resulted in frustration. Her frustration resulted in some uncharacteristically mean comments directed toward family members. At one point, she told her grandchildren that they were bad children and they would be getting boxes of rocks for Christmas.

She even picked up a piece of candy that had been thrown in her direction by a parade participant and put it in her mouth….without taking off the wrapper. In retrospect, my friend wonders if they could have found a smaller parade that was closer to home, but they were so tied to their ritual that it never crossed their minds.

Many people with dementia love being around children. However, we have to understand that being around children can be exhausting for all of us –especially those with dementia. The dementia brain struggles in chaotic environments, and I don’t know of many environments more chaotic than holiday gatherings with cousins running around like unruly punks. Oh, add in their new toys, especially those toys that happen to be ridiculously loud. The dementia brain is going to tire quickly. Heck, my brain tires quickly. (Give me a break here. I am a childless gerontologist.)

And then we say the person with dementia is “being difficult”–when in fact we have put them in a difficult situation and they are having a difficult time. It is okay to limit the time someone with dementia spends with children. If you have dementia, it’s fine to say, “I really enjoyed hanging out with the kiddos, but I think it’s time for me to leave.” It’s okay for you to slip into a spare bedroom and take a break.

You don’t have to apologize. You don’t have to feel guilty. You don’t have to explain. You have my permission to remove yourself from a situation before it becomes anxiety-provoking. And you have my permission to preserve your mental and physical energy. The holidays are a marathon, not a sprint.

There’s a simple little trick that works for my husband and me around the holidays–and it also has some usefulness for dementia carers. It’s pretty simple: Always drive separately.

Your sister could pick up you and your spouse, who has Alzheimer’s, and give you a lift to the holiday gathering. It’s nice she offered. You appreciate that she’s thinking of you.

But…consider how long your sister might want to stay. If your spouse starts showing signs of stress, you might want to hightail it out of there. That’s harder if you don’t have your own vehicle. No matter the event, always have an escape route–even if that escape route is an Uber or a Lyft.

There are going to be these people who don’t understand. Maybe they are family. Maybe they are close friends. They are not going to get why you need to leave the party early. They are not going to comprehend why you can’t attend an event that you’ve attended every year for 20 years. They are going to think it’s weird that you are giving out ten dollar bills instead of thoughtful gifts this year. They are going to question why you showed up at Christmas dinner and contributed red Solo cups instead of a gourmet dish. (To be fair, I do the last one and I don’t have dementia, nor am I a caregiver.)

You can explain it to them if you want. If you have a need to sit them down and tell them about the challenges of dementia, go for it. You can show them this blog post if you like. But….don’t expect them to get it.

Sure, it’d be nice if they’d understand. It’d be great if everyone respected your limits and encouraged you to listen to that voice in your head that sometimes chimes in and says, “Too much.”

Even if people are well-meaning, they often don’t understand how tiring it is to have dementia. They don’t understand that holiday rituals practiced for many years just may not be realistic this year.

The good news is that you don’t need their permission to take a break. You don’t need their okay to exit the party or to not show up in the first place. They don’t have to be cool with your holiday plans. This isn’t about them.

So do what you’ve got to do to this holiday season–even if what you’ve got to do is different than what it used to be.

I give you permission to say “No, thank you,” this holiday season. If that doesn’t work, I give you permission to say “Hell no!” I also give you permission to say “Yes,” and then later on say, “Nope, it’s not gonna work.”

And I give you permission to leave the party without saying goodbye to each and every person there. Sometimes it’s just time to go.

So let go of those rituals. Forget those expectations.

You do not have to buy a present for every single person you’ve called a friend since middle school. If you don’t have the time or energy to send out holiday cards, then don’t do it. Maybe Midnight mass just isn’t in the cards this year. By the way, no one ever died from only having one choice of pie at a holiday dinner (unless it’s pumpkin pie, which is disgusting since pumpkin is a decorative item and not a real food–just an opinion).

It’s okay to not put up a Christmas tree. It’s okay to put up a Christmas tree and leave it up until March. Also, I promise your kids and grandkids can grow up to be functional adults if you don’t participate in that weird Elf on the Shelf deal. Oh, I can definitively prove that the world doesn’t end if you don’t have time to wrap gifts and just give people things in plastic Target bags. I don’t think I’ve used wrapping paper since Obama’s first term. Think about all the money I’ve saved to spend on wine.

And always keep in mind that Chinese restaurants are open on Christmas Day. In a jam, you can never go wrong with some takeout moo shu pork and eggrolls. On a side note, I googled which wines pair well with Chinese food. Go with the Riesling.

I said something really dumb a few days ago. It wasn’t the first time and won’t be the last, of course, but I keep thinking about it.

A woman was telling me about her challenges as a caregiver. Her husband, who has frontotemporal dementia, is about to get “evicted” from a nursing home for being “disrespectful toward staff.” (Don’t get me started.) In addition, she’s been diagnosed with lung cancer. After I listened to her talk about how she can’t sleep at night, we wrapped up our conversation.

“Happy holidays,” I said. Yeah. That was stupid.

She laughed. We both realized how idiotic, although sincere, my holiday wishes were. Sure, I wanted her holidays to be happy, but it seemed a little pie-in-the-sky. I tried to recover.

“Well, best possible holidays!” I said.

So that’s it. Best possible holidays to you.

Maybe that means you’re gonna thrive this holiday season. Maybe you’re just gonna survive. But either way….

Best possible holidays to you, my friend.

 

 

 

Nursing Homes and Guilt Traps in Dementialand

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

If your loved one is living in a nursing home and this makes you feel like an awful person, STOP. Just stop. You are not an awful person. You are a human being who is doing the best that they can.

Let’s face it. We don’t know many people who say, “I hope someday I get to live in a nursing home.” Sure, some nursing homes are better than others. Yet, even the best nursing homes are not home—even if we allow people to move in their own furniture and plaster family pictures everywhere. Bringing a recliner from home doesn’t make a place home.

If you’ve heard someone say, “I could never place my loved one in a nursing home,” and it broke your heart a little bit when you pictured your dad in his nursing home room….please know that this person has not experienced what you have. They’ve never been at a hospital when a social worker told them that their mother absolutely, positively could not go back home but needed to be out of the hospital within 24 hours. They’ve never had to have a talk with their dad about how the money the family had pooled for in-home care was depleted, and there was no way for him to continue living in his own home. They have never been in a position where a nursing home is their best—although not a great—option.

In a perfect world, nursing homes would be unnecessary. We would all live healthy, independent lives until we dropped dead suddenly at the gym at the age of 95. We’d wave goodbye to fellow gym rats as we fell off the treadmill, and that’d be that. I’d love for that to be my farewell to the world. My goal is to die very old and very suddenly—and to inconvenience no one in the process. As a gerontologist, I’m smart enough to know that’s unlikely.

Medical technology can cure us of ailments that used to kill us. We survive acute illnesses but must live with chronic ones. And people, because of this annoying issue of having to earn a living, can’t always quit their jobs to provide 24-7 care to Grandma, Grandpa, Mom, or Dad. (And, to be honest, not everyone is physically and emotionally capable of being a full-time in-home caregiver.)

And then there are people who promise their loved ones that they will never place them in a nursing home. I once had a woman say to me, “My husband and I promised we’d never do that to each other.”

I can promise my spouse a lot of things. I can promise I’ll never cheat on him. I can promise I’ll never blow all our money at the casino. I can promise to always take the kitchen trash out when it’s overflowing. (Bill, I promise you the first two–I make no commitment to the third. The third was just an example.) You see, those are things I can control.

I can’t promise him I will never get in a car accident. I can’t promise him I’ll never lose my job. And I can’t promise him that he will never live in a nursing home.

There are things in life that are out of our control.

So we sometimes must consider a nursing home. Not because we love the idea—but because this is reality and we have limited options. Few of us have the money to pay for round-the-clock home care. And our homes often aren’t equipped to provide the type of environment to keep an individual with Alzheimer’s or related dementia safe. So we check out nursing homes.

And we get a sick feeling in our stomach when we see the people who live there. They are sitting in wheelchairs by the nurses’ station. They are waiting…but for what? For dinner? For bingo? For death? Some of the staff members are smiley, pleasant, and kind. Others seem to hate their jobs. Most are rushing around without time to chat. We identify what we consider to be the best nursing home in our desired area. Maybe it has a bed available; maybe it doesn’t. And that’s the sometimes ugly, often painful process.

We move our loved one with dementia into the nursing home. Sometimes they are aware of where they are and exactly what’s happening…sometimes they aren’t. Maybe they are pleasantly confused; maybe they are terrified. Either way, we feel like the most disgusting scum on the face of the earth.

And what other people say doesn’t help. Maybe someone in your support group says something like, “I’ll never put Harold in a place like that after what a great husband he’s been.” (In fact, this is a direct quote from a support group I once visited—except his name wasn’t Harold.) Maybe if Harold had been a jackass of a husband she’d already have placed him in a nursing home?

Perhaps someone in your own family makes a backhanded comment about how you didn’t invite Mom to live in your basement bedroom. What they don’t understand is that you’d be terrified she’d fall down the steps to the basement and you can’t quit your job—and honestly don’t want to—to be home with her all day. Maybe they don’t understand that her disease will leave her unable to bathe herself and use the toilet on her own. Your own physical health makes you incapable of taking on those challenges. And you didn’t see a line of people volunteering to let her live in their spare bedroom.

Maybe your siblings weren’t anywhere to be found during this process. Maybe they weren’t willing to be involved in making a decision but showed up just in the time to tell you that you made the wrong one. Perhaps they visited Dad once in the last year and he really rose to the occasion. He had the energy of a teenager and mental sharpness he hasn’t possessed in five years…for that one day. (Yeah, that happens a lot when you’re trying to convince someone that your loved one is struggling—just like when your car doesn’t make that clunking noise when you take it to the mechanic.)

Now your siblings can’t figure out why you have turned into such a villain and are insisting on imprisoning your dad in a nursing home. It wouldn’t be so awful that they thought you were a villain if there weren’t this voice in the back of your head echoing the sentiment each time you visit the nursing home.

So stop. Just stop. You aren’t a villain. You aren’t a bad person. You are just a person—doing the best you can under circumstances that aren’t great. And you’re not alone.

Sometimes a nursing home really is the best option. It doesn’t mean we like the idea. It doesn’t mean we’re abandoning our loved one. It means that we had to make a hard decision.

And sometimes the best of our limited options isn’t great.

When You Are Accused of Being a Diva in Dementialand

You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.

Today is my third (of a still undetermined number) of Q & A’s in Dementialand. Today’s question is from an individual who has been diagnosed with Frontotemporal Dementia.

Dx bvFTD in 2007 (right after I did a kidney donation to a guy in Los Angeles, so it was my last legally sane act…I am so damned blessed).

I’ve been trying to find some information about sensory overload/flooding in FTD but have only found it on sites for autism and TBI. My family, in which there is no discernment between mental illness and organic disease, doesn’t actually believe in FTD and, therefore, I don’t have it, I’m just a diva. I cannot be with them or anyone else for any reason because the effects on my ‘self’ are devastating and sometimes takes days to recover. I didn’t even go to my dad’s funeral. I cannot tolerate someone else’s noise or loud talking; if a child cries I go into a rage. A kid at a museum display knocked into me to get in front and I pushed him right back and told him to STOP. The mother was livid and threatened me; I just looked her in the eye and told her to teach her damn kid about personal space.

All of the above are normal symptoms, I guess, but for the next time I’m told “Why won’t you come? It’s just the family” an article based on science would go a long way in an attempt to explain. I can no longer explain anything anymore (my caregiver is writing this for me based on my babblings).
Thanks so much for any information you can provide.

D

Dear D,

Let me start with this…I did a series of posts on dementia and the senses. Here you go:

Sight: What You See in Dementialand

Hearing: What You Hear in Dementialand

Taste: What You Taste in Dementialand

Touch: What You Touch in Dementialand

Smell: What You Smell in Dementialand

You can email these to your friends and family.  You can send them text links. You can print them out and mail them. You can even read them aloud or deliver them on a silver platter while wearing a tuxedo or ballgown. If I’m being honest, my friend, I don’t think this is going to make a bit of difference.

You see, these people have not yet been responsive to your diagnosis and the changes occurring in your life. They could have googled to learn more about Frontotemporal Dementia. They could have asked you or your caregiver questions. They could have shown an interest in learning how to support you. And they haven’t.

I wish I could tell you the words to say when they are disrespectful and doubtful of your diagnosis to make them understand. I regret to tell you that these words don’t exist.

You are not a diva. You have a disease. It is a real disease; you can “see” the disease at autopsy–and many times on various scans during life. And while most people associate dementia with memory loss, it’s about total brain failure. And sensory overload is a large part of this. In fact, I believe the anxiety caused by sensory overload is one of the least talked about–but most debilitating–aspects of various types of dementia.

The dementia brain works very hard to interpret its surroundings. When it gets tired (which doesn’t take long), the individual with dementia is no longer able to control their emotions and impulses. At this point, the person who has dementia may become irritable and difficult to be around. Or they may shut down completely. We sometimes say they are giving us a hard time, but they are really having a hard time.

You can tell your loved ones this, but I am not convinced it’s going to make a bit of difference. In fact, explaining the symptoms of a disease that they believe doesn’t exist in the first place probably won’t get you too far.

You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.

So why can’t you come when it’s just family? Because you’re not feeling up to it. Because you’re feeling overwhelmed. Because you need a break. Because spending your precious mental energy on being around people who don’t make an effort to understand you just isn’t worth it. I don’t care what you tell them. There’s never going to an explanation that’s good enough–so tell them what you want. And leave it at that.

You have a reason (and a valid one) for not attending your father’s funeral. If people ask, explain it once. If they don’t get it, stop. Just stop explaining yourself. It’s not worth your time, and it’s not worth your limited energy. Walk away, figuratively and literally, from people who question whether you really have a disease. In the best of circumstances, arguing with family is energy-zapping and frustrating as heck. To you, it’s positively toxic.

You ain’t got time for this.

 

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. 

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.

Why Dementialand Needs an Orientation

There’s a lot people don’t tell you about dementia.

The doctor says your loved one has dementia. Maybe it’s Alzheimer’s. Maybe it’s Vascular Dementia, Lewy-Body, or Frontotemporal Dementia.

The doctor only has a limited amount of time because that’s how our medical system works. You go home. No one teaches you how to live with dementia. No one tells you what challenges might lie ahead. You think it’s about forgetfulness, but you will learn that it’s much more than that. It’s about brain failure, and your brain is the control center for your body. Dementia can cause a person to be unable to swallow and control motion. If it progresses far enough, a person isn’t able to eat, talk, or walk. Maybe no one told you that.

No one tells you what to do when your loved one forgets they can’t drive anymore or when they insist that they have to go to work when they haven’t worked in 15 years. No one teaches you how to deal with a previously mild mannered mother who is screaming obscenities you didn’t know she knew. What do you do when you have to buy Depends for your dad and he takes them off and tries to flush them down the toilet? How do you make sure Grandpa doesn’t leave the house and get lost when he gets up at 3 am?

When your mom starts saying she doesn’t have any kids, should you tell her she actually has three? Should you explain to her that your dad passed away years ago when she asks when he’s coming home? And if your grandma starts slapping you when you tell her she has to take a bath, should you push the issue? How often does she really need to bathe, anyway? No one told you how to deal with this.

I spoke to a woman this week whose mother has dementia. Her mother constantly apologizes to her, making statements like, “I’m sorry I’m not the mother I used to be. I’m sorry I can’t be there for you.” And then they both cry.

After a few years of this, she finally came up with a response. Now she says, “You may be a little different than you were. I loved the person you were, and I love the person you are now.” She says she regrets that it took her years to learn how to figure out the right thing to say.

No one tells you how to help your loved one through the extreme anxiety that may come with navigating an unfamiliar world. No one tells you what to do when they cry but can’t tell you why they are sad. And what do you do when they get really pissed about something that never even happened? What if they think another family member is stealing from them?

You promised them you’d never put them in a nursing home. But what do you do when someone needs to be with them 24/7 and you have a full-time job? How can you break that promise without feeling guilty for the rest of your life? And how do you figure out which nursing homes are best for people who have dementia anyway? Also, you can’t figure out how you’re going to get your 250 pound father in the car and to the nursing home when he says he’d kill himself before moving there.

And when is it okay to laugh? A woman once asked me if she had done the right thing when her husband forgot to pull up his pants and waddled out of the bathroom with his Dockers around his ankles in front of company. I asked what her response was. She said, “I laughed, but I don’t know if I’m supposed to.”

No one tells you if it’s okay if you aren’t always completely honest with someone who has dementia. I recently talked to a man whose dad died of Alzheimer’s. He said, “I wish I have known it was okay to lie sometimes. That would’ve made it a lot easier.”

Although I’ve referred to how a family is unprepared for the challenges they might encounter, the same is true for individuals who have been diagnosed. How do I cope with changing abilities? How do I tell other people about my diagnosis? Am I able to handle my own finances? What can I do to make sure I remember to take my medication each day? (Once someone with Alzheimer’s said to me, “I’m on some meds for my Alzheimer’s, but I don’t always remember if I’ve taken them. Maybe if I remembered to take it, I’d remember to take it.” How’s that for irony?)

There’s a recent research study by the Alzheimer’s Association that suggests less than 50% of people with Alzheimer’s are even told of their diagnosis. How can you prepare for something when you’re not given all of the information?

According to the Alzheimer’s Association, one out of three older adults dies with Alzheimer’s or a related dementia. In a nation where dementia is so common, how can we be so unprepared? Sure, we wait and hope for a cure…but in the meantime, how can we neglect to provide the education and support so many families need? And why can’t we talk about dementia without embarrassment or stigma?

And although I am confident we will someday find a cure, it will not be today. I’m not a pessimist, but I am a realist. Medical technology has increased our lifespan–which has in turn increased the likelihood that we will experience dementia. In other words, we can save you from all this other stuff so you’ll live long enough to get dementia. Yet, we are completely unprepared for the challenges dementia brings.

And it’s not just about old people. I know several people who were diagnosed in their 30’s. And I don’t think I fully understood this tragedy of this disease until I stood face to face with someone who was my age and had just been diagnosed. She even looked a little like me…I went from knowing ‘this could be me someday’ to ‘this could be me.’ There’s a difference.

Alzheimer’s is a fatal disease. Lewy-Body Dementia and Frontotemporal Dementia are terminal illnesses. Dementia kills people. I hate to be this blunt, but I think society’s lack of understanding of the terminal nature of dementia stagnated research for many years. We think it’s just about old people becoming forgetful, but it’s not just about old people and it’s not just about forgetfulness. It’s about total brain failure. Alzheimer’s has no survivors. You will die from it or with it.

I have to be careful when I mention that dementia is fatal. Many individuals and families impacted by dementia don’t realize this. In the past, I have stated this in a very matter-of-fact way, but sometimes it’s the first time that people are hearing it. No one tells them.

There are also positive things that no one told you about. You might smile because your mom laughs at something that she sees…but no one else sees. You don’t care that she’s having visual hallucinations or has issues interpreting what she sees. You’re just grateful she finds humor in something.

It might make your day that your dad thinks he is a New York City subway station as he wanders around the nursing home. After all, he loved the subway and New York was his favorite city. Grandma has been retired as a teacher for many years, but she conducts class in her memory care unit using dolls as her pupils. She finally has a sense of purpose again, and it makes you happy. No one told you that you that such things would make you happy. You didn’t realize the challenges of caregiving for someone with dementia, but you also didn’t know about these unexpected moments in which you would find joy.

No one told you that some friends and family would abandoned you. Sure, maybe they say that they pray for you and think of you all the time, but they aren’t there offering to run to the grocery story or stay with dad so you can go out to lunch. On the other hand, no one told you that some people would step in and amaze you. Maybe they’re not the support system you expected, but they get you through the day.

I advise incoming college freshmen at summer orientation each year. When young people graduate high school and progress to college, they must adapt to a new set of norms, an entirely different culture, and different goals. What worked in high school may not work in college. For that reason, there is an extensive two-day orientation to Collegeland. It includes sessions on financial issues and tips for success. There is no such orientation to Dementialand.

I wish there were an orientation because there are a lot of things about Dementialand that no one told you.

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.

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.

Mistaken Identities in Dementialand

I spoke at the Illinois and Iowa Quad City Family Conference on Saturday. We had a great turnout, and even had some press coverage:

http://qctimes.com/news/local/caregiver-conference-attracts-its-biggest-crowd-ever/article_ee4294a2-6fb4-5e3e-ba81-64b7666b8288.html

(Please note that I hate my press photo and have no idea why it appears that my hair is longer on one side than the other.)

After I spoke, a small line of people formed by the stage to talk to me. I jumped off the stage because I didn’t want to “talk down” to people. This jump turned out to be a poor decision. I had on heels and should’ve used the steps. I practically took down a lovely woman in her 50s with me when I landed. Fortunately, she seemed willing to break my fall. After I was pretty sure I would not need medical attention, she told me a story.

Her mom has Alzheimer’s. Her father had been an abusive alcoholic and left her mother decades before, and her mom had remarried. On most days, her mom didn’t remember that her first husband had walked out, and she certainly didn’t remember getting remarried. She called her second husband by her first husband’s name. Ugh.

A side note about being mistaken for someone else…If we like that person, we generally tolerate it much better. For instance, I went to high school with a girl named Kelly Oliver. I didn’t think we looked all that much alike, but I got called Kelly once in a while. I will add that Kelly was cute, athletic, and the sweetest person you’ll ever meet. I corrected people when they called me by her name, but I also didn’t mind being mistaken for her. I was flattered.

This guy was in a different boat. Not only was his wife unable to correctly identify him, she was mistaking him for someone who was a real jerk. I’m sure he wasn’t a fan of his wife’s first husband, and now (in her reality) that’s who he was. She would even make occasional comments about how needed to stop drinking, go back to Alcoholics Anonymous, and stop cheating on her.

I asked the woman how her mom’s current husband responded when he was mistaken for her first husband. She told me that he had stopped correcting her. He had even apologized for “his” past drinking problems and “his” affairs. Then he promised that this part of life was behind him and he would always be there for her now. It sounded like he made his promise quite a bit, and it seemed to comfort his wife. In fact, she would usually smile and say something about a “new beginning” for them. For the time being, his strategy seemed to be working. I was impressed. Really impressed.

I’m always telling families to stop arguing about who you are. Just roll with it. However, it’s a lot easier to do this when you’re mistaken for someone who you like and respect. When you’re not flattered by who grandma thinks you are, you tend to get a little bit more argumentative.

I once was visiting a memory care community when I heard a young woman tell her grandma in an annoyed tone, “Grandma, I’m Hannah. Liz is my sister. You can tell us apart because Liz is A LOT heavier than I am. And her nose is bigger.”

I think I might have laughed out loud. If grandma can’t tell her granddaughters apart, she is probably not going to remember the next time she sees them that Liz is the heavier of the two and needs a nose job. And, on the off-chance she does remember, she may tell Liz that she recognized her because she’s fat and has a big nose. Not exactly a win-win situation.

The take-home message here is that we can have a connection with someone even if they don’t know who we are or thinks we are someone else. Often times, we destroy that opportunity for connection when we spend time arguing about who we are.

I know it’s hard. And you get to grieve, but you don’t get to do it in front of them. If mom thinks you’re her sister instead of her daughter, continue on and have a positive visit. Talk about the weather. Smile and laugh. Then, after you leave, cry in the car. Or call a friend to vent.

It’s brutal to accept that someone you love no longer recognizes you, but accepting that may be the key to enjoying time with them. Sometimes we have to let go of what was in order to enjoy what is.

“Role Reversal” in Dementialand

Although I used the term “role reversal” in the title, I’ll be really clear in telling you I don’t like it. I hear people say things about how they’ve become a mother to their own mother, or something to that effect. And I get where they are coming from, but caregiving for an older adult is different from parenting.

First of all, most of us get about nine months to prepare for parenting. We have adequate time to prepare a room. Oh, and people throw us a shower. You even get to go to SuperTarget with a scanner and scan all the items that will be useful to you in your role as a parent. Then all your friends get together and wish you well on your parenting journey.

You might even get to play some games involving wrapping toilet paper around your stomach or melting candy bars in diapers to see if you figure out what candy bars they were. Oh, and there will be cake and punch. Maybe even those melt-in-your-mouth mints.

I’ve never seen anything like this for caregivers. You typically don’t know that in about nine months your mom is going to need a lot of help and you’re going to have to drop everything. No one gives you a due date for when you are going to start your caregiving responsibilities. If there’s a crisis and your dad is moving in, you don’t get time to paint the room baby blue and go shopping for new furniture.

Can you imaging the gifts you might register for before your caregiving shower? I was talking to a friend whose mom has Alzheimer’s and recently moved in with her. She said she’d register for wine. Lots of lots of wine.

Parenting is hard work. Don’t get me wrong here. I understand that parents, like caregivers, lack sleep. I understand that parents, like caregivers, are stressed and short on time. Parenting and caregiving both involve ridiculous amounts of multi-tasking. Both come with extreme highs and extreme lows, but I’d argue that we tend to be more supportive of parents than we are of those who caregive for older adults.

Furthermore, what I find is that “family-friendly” workplaces are more friendly to workers with small children than workers who have to leave in a rush because their mother with dementia is wandering in the road. Caregivers who balance work and caring for a family member may be cut much less slack than parents in the workplace. And often workplace policies are written with employees who have children in mind…without regard for employees who care for older adults. Apparently, that’s not family?

When I browse Facebook posts, I see stuff like from parents about their kids’ accomplishments, from potty training to spelling bees to high school sports achievements. Recently I saw a post from a mom about her son, who had just used the potty for the first time in exchange for a few M&Ms. It was complete with a photo. I’ll leave it at that. Can you imagine if those caring for an older adult made posts like this on Facebook? I’m not sure how many likes they might get.

Lots of my Facebook friends post about funny things their kids say. I see plenty of pictures of little girls who have gotten into mommy’s makeup and smeared lipstick all over their faces. A caregiver I know recently busted her mom heating up cans of Diet Coke in the microwave. Should she have taken a picture and posted it on Facebook?

I talked to a family caregiver who was caring for her aunt. Her aunt would wake up during the night and need to use the bathroom. Not wanting to disturb anyone, she would quietly tip-toe down the hallway. However, she was unsteady on her feet and would (on a good night) knock a bunch of pictures off a table trying to stabilize herself or (on a bad night) take a fall.

Her niece gave her a bell and insisted she ring the bell so someone could come help her to the bathroom. She would never ring the bell–until one night she did.

Her niece was pretty excited that she would now ring the bell, but when she tried to tell her friends and co-workers about this “breakthrough,” they didn’t celebrate with her. They just gave her a look of pity, and that wasn’t really what she was going for. Apparently, this isn’t the type of accomplishment that society celebrates like a kid winning a spelling bee.

Caregivers don’t get a peer group like parents. If you’re a parent, you have the parents of the children on your kids’ soccer team. Or the parents of the kids who are in the play with your daughter. You have a built-in network of people who might be sharing some of the same joys and challenges that you are. It’s harder to find that built-in network if you are taking care of family member who has cancer, dementia, or another serious illness. You have to make an effort to find those people who get it.

After Thanksgiving, holiday cards and letters begin rolling into our house. My husband and I (who are in our 30’s and don’t have kids) are swamped with cards from proud parents. And it’s a good thing. People should be proud of their kids.

But where does caregiving fit into your family Christmas card? How do you fit in that paragraph about how your mom with dementia moved in because she kept overdosing on her meds? Should you add something about how your grandma has no idea who you are but you feel like your connection with her brings you both a lot of joy? There seems to be no place in the family Christmas card for the negative or positive aspects of caregiving.

When you’ve got a new baby, you probably have no problem finding a babysitter. Let’s face it–people think babies are cute. Most people, especially women, like to hold them, try to get them to smile, listen to them babble. But asking someone to stay with your loved one who has Alzheimer’s so you and your husband can have a night out? That may not be as easy. We are comfortable with the idea that babies need 24.7 care. We are totally uncomfortable with the idea that some adults may need 24.7 care as well.

A couple of years ago I reported for jury duty. A woman in the jury pool explained to the judge that she was breastfeeding. She wasn’t sure exactly what she should do if she was chosen for a jury and had to stay the entire day. The judge was sympathetic, and he dismissed her.

Recently, someone asked me if I thought she could get out of jury duty because she cared for her 85-year-old mother who wasn’t able to be left home alone. She couldn’t find anyone to stay with her and didn’t think she should bring her to the courthouse. I honestly had no idea if that was an acceptable reason to be excused from jury duty. But I now know that breastfeeding is.

And let’s talk about our goals as parents. We tend to think we are good parents if we send our kids out into the world to be kind, successful, and happy adults. We watch them walk across stages at graduation, get married, get job offers…and we feel a sense of pride, like we’ve done something right.

How do we judge whether or not we’ve done a good job as a caregiver? When do we get to feel that sense of accomplishment? When do we enjoy those milestones where we get to pat ourselves on the back?

I’m not saying caregiving isn’t fulfilling. I’m not saying you don’t have joyous moments where you realize you’ve done something meaningful, valuable, and important by caring for your loved one. But the highs of being a caregiver are different than the highs of being a parent.

Parenting and caregiving are both adventures. I can’t deny that. But they are unique adventures. And the caregivers I know often struggle because they are caregiving within a society that is not set up to support caregiving. Saying we become parents to those adults we provide caregiving to ignores some of the distinct challenges faced by caregivers.

So caring for your mom who is in end-stage Alzheimer’s isn’t like taking care of a newborn baby. I’m gonna guess that no one threw you a shower and brought you gifts.