I’ve started using a new line in the next few weeks. Good for you, not for me.

You started doing adult ballet and it’s really changed your life…and you want me to tag along? Good for you, not for me.

You raise organic chickens in your backyard and think everyone should consider doing it so they can have higher-quality eggs? Good for you, not for me.

You have completely cut caffeine out of your life, feel great, and think I should do the same? Good for you, not for me.

I’ve got no problem with adult ballet. In fact, I think it’s pretty cool. I admire people who raise their own chickens (although I’m glad they don’t live next door to me). And I commend people who cut out caffeine. Yet I don’t plan on doing any of these things.

Why? Because I’m me. I’m not you. I’m different from you. What works for you might not work for me. And what works for me might not work for you.

I’ve only realized the last part of this recently. I must admit that I have on many occasions tried to help people by making suggestions that are based on me rather than them. Are you stressed? Running works for me, so you should go running. Wanna train with me for a half marathon? I publicly apologize to those friends I have done this to. Maybe running isn’t your thing. I get it now. And I’m sorry I pressured you 500 times to register for a race without listening when you said running wasn’t your thing. I wasn’t helpful, and I understand that now.

We are different people. We react differently to situations and events. We are helped by different coping strategies. We are just different.

In Dementialand, I am sometimes asked questions like, “What would you do if it were your dad?”

These questions are usually in reference to living arrangements and care. Is it time for someone to move to a nursing home or memory care community? Should we consider moving them into our home? Do we need in-home health care? Should I quit my job to stay home with them all day? Would it be a good idea to call hospice?

When tough questions come up and a person can tell I’m intentionally avoiding giving them straightforward advice, they often cut to the chase and ask, “But if this were your loved one, what would you do?”

I know why they ask this. A few times, I’ve sat in a doctor’s office and asked the same question. If I’m getting lost in a plethora of information and don’t trust my own instincts, I ask an expert–What would you do?

Even if the expert answers that question honestly, how much information does that really give me? That person is not me. They are a different person with different priorities. They have different vulnerabilities and fears. A right choice for them might be a wrong choice for me.

I was visiting recently with a woman in her 70s whose husband had Alzheimer’s. She was struggling with whether or not he should remain in the nursing home he had lived in for a couple years or come home with hospice support. We talked about the potential advantages and disadvantages of both options. Then she asked me, “If it were your husband, what would you do?”

It’s not really a fair question–for a few reasons. First of all, I struggle to put myself in that mindset. I cannot, with confidence, say what I would do. I can speculate, of course, but it’s insincere of me to tell you what I’d do in your situation when I’ve never been in your situation. I haven’t walked a mile in your shoes. I’m not gonna pretend I have.

Also, how much does it matter what I’d do in your situation? Because it’s your situation. What I would do is not always what you should do. It doesn’t matter that I know a lot about dementia. It doesn’t matter that I’ve been involved with the hospice industry. It’s still not my situation. We need to talk about your situation.

Last summer I read Being Mortal by Atul Gawande. Gawande is a physician who must visit with patients and their families about end-of-life decisions. (He is also my current favorite author, although I can’t figure out when he has time to write books.) He suggests that these discussions require no less skill than performing an operation, and I could not agree more. In these discussions, he asks about people’s hopes and fears. What are your hopes about this situation? What are your fears about this situation?

I decided to ask the woman these questions. Her hopes and fears were unique. Her hope was that he would die a peaceful and pain-free death surrounded by family and good friends. No surprise there. She also hoped that she’d be able to keep her part-time job as a receptionist because she felt it was the only thing keeping her sane. She hoped her husband’s care wouldn’t be expensive because he had saved for their grandson’s college fund, and he’d be heartbroken if that money was spent on his end-of-life care.

Understandably, she had many fears. She worried about providing care at home. She worried he’d fall out of bed and she wouldn’t have the strength to help him up. She was scared that she wouldn’t be able to take care of his incontinence. She said she wasn’t sure she had the stomach for it, although she hated herself for feeling that way. She wasn’t sure if her son and daughter-in-law would be all that helpful if she brought her husband home even though they promised they would be.

She had recently been to an Alzheimer’s caregiver support group. Unfortunately, the support group was a catalyst for another fear. She feared that the people in the support group were better caregivers than she was. Some of them visited their loved ones in the nursing home for most of the day. She could only handle being there a couple hours. A few of them vowed to keep their loved ones at home because they didn’t believe a nursing home could provide adequate care. She knew she would have had a breakdown if he had lived at home the past couple of years.

She’s not an inferior caregiver. She’s just a different person. She’s not doing it wrong, and the other caregivers aren’t either. It’s not a matter of wrong or right. It’s a matter of figuring out what works for you. We get ourselves into trouble when we forget we are different from other people. When we try to imitate what works for others without paying attention to who we are, we struggle.

Once I was convinced to become a member of a church that wasn’t a good fit for me because it was a perfect fit for a friend. I’m not saying it was a bad church. It just wasn’t my church. I tried to make it fit but it just didn’t. Good for you, not for me.

I once signed up for a six-month Tai chi class (and hated every minute of it) because someone told me how Tai chi had positively impacted them. I spent my time in the class trying to figure out why I was so bored by moving in slow motion when everyone else in the class seemed to think it was so powerful. Good for you, not for me.

In Dementialand, we are confronted with a lot of choices. Should Mom move to a nursing home? Should Grandma take Aricept? Should we have a home health care aid to help Mom bathe? Should we consider an anti-depressant for Dad? Should I go to counseling to help me deal with this stress?

There is no universal right choice. Someone else may be in a similar situation, and the choice that has worked out perfectly for them may turn your life into a hot mess.

We can celebrate that a person has found what works best for them while understanding that it may not be for us.

Good for you, not for me.

On an average day, a shower takes me six minutes. It takes me about six minutes to dry my hair. (It used to take about nine, but I got it cut.) I can put on make up in less than five minutes. If I have a few extra minutes, I can use them to flat iron my hair…which takes about four minutes. Why does any of this matter?

Having a rough idea of how long it takes me to get ready is important because it tells me when I need to start getting ready. If I have to leave the house at 8 am, I try to be in the shower at 7:20. If I jump in the shower at 7:30, I can make it, but I’m gonna feel rushed. If I jump in the shower at 7:40, people usually say things like, “Are you feeling okay? You don’t look like yourself today.” (And I usually mention that I’m feeling great because I slept an extra few minutes–but I’m not wearing concealer.)

Having an accurate estimate of how much time it takes us to do certain tasks is key in getting through the day. If I make a cup of coffee to take with me, will I be late? Do I have time to stop at the grocery store on my way to dinner with friends? What time do I need to leave my house to get to the basketball game before it starts? Your brain negotiates stuff like this all day long.

When I wake up today, I will look at my Google calendar. I can see that I teach a fitness class at 8 am, as I do a few times each week. However, my Google calendar doesn’t list the timeline of events that I must complete in order to get to the point where I will be in a position to teach aerobics at 8 am. Those are mentally noted in my brain and I work backward from 8 am to decide what time each task needs to be complete–but they aren’t the type of thing that you write in your planner.

Between 7 and 7:30, I will put on my workout clothes and put my hair in a ponytail. I will eat my breakfast, which is typically a smoothie that I blend in the dynamite Vitamix blender that my husband and I bought as a Christmas gift for ourselves. I will doublecheck to make sure that my iPod is charged. (As an aerobics instructor, a dead iPod is the stuff of nightmares.) In winter, I will put on pair of boots and carry my workout shoes with me so that I don’t track muck into our gym.

I will leave the house by 7:30. I will drive to the gym. Once I get there, I will go into our employee office for a few minutes to write out an outline of the class I plan to teach that day. I will grab a key to the equipment closets and sound system. I will head down to the gym, unlock everything, do a soundcheck, and start getting out the equipment we will need for the class. At about 7:57, I will choose the music playlist for the morning. (My crowd generally likes Motown and dislikes techno. Really dislikes techno.) If all of the previous tasks were completed on time, I will walk to the front of the gym at exactly 8:00 and start teaching my fitness class.

Keep in mind that the very first thing on my Google calendar was “fitness class” at 8 am. However, there was a lot that had to happen before 8 am to put me a position to start the class at 8 am. (And there are hundreds of tasks I didn’t mention, like putting up the garage door so I don’t back into it–not that I narrowly avoided this one Monday morning recently.) On the mornings I teach, these tasks have just become second nature. And, I’m guessing, you have similar routines.

You know what time you have to start getting dinner ready to have it on the table at 6 pm. You know what time you have to get your kids out of bed to have them to the bus stop by the time the bus comes. You know what time you have to leave to make it to your hair appointment on time. But there are literally hundreds of small events that must be completed on a timeline to put us in position to accomplish the daily tasks on our schedules.

You might have guessed where I’m going with this… People with dementia struggle to manage time and tasks.

A few years back, I went to listen to a speaker. He was a man with Lewy Body dementia, and I’m not sure exactly how to explain how amazing his speech about living with dementia was–except to say that I was certain he was far more articulate, more insightful, and much funnier than I am when I do public speaking. I tried to pay attention to what made him such a great presenter so I could implement some of the same tools. To be honest, I was worried he was a fraud–or maybe misdiagnosed.

I was fortunate enough to get to go out to dinner with him that evening. His wife had to help with navigate the menu, and he kept getting confused about where he was and where he was headed next. I tried to ask, in the most tactful way possible, how a guy who was too overwhelmed by a restaurant menu to order without assistance could get up and speak flawlessly in front of a hundred people. He and his wife quickly confirmed to me that he was not a fraud and was likely not misdiagnosed.

He told me that speaking in front of a crowd was easy. It was the process of getting to that point that was difficult. He said that he had a planner where he kept track of his obligations. He would often look at his planner and see that he had a speaking engagement. It was the couple of hours before the speaking engagement that overwhelmed him. He couldn’t manage the tasks he had to do to get ready and get there without constant prompting from his wife.

His wife relayed a story about a recent community event where he was the featured speaker. They had to be there at 7 pm, and would have to leave their house by 6:30. At 5, she told him it was time to take a shower. He took his shower, while she showered in the other bathroom. After she finished showering and putting on her makeup, she came to check on him. He was sitting on their bed, still wet and naked as a jaybird (her term–I’m not even sure what jaybirds look like or why they are the most naked of the birds).

“I told him to shower,” she said, with a laugh. “I guess I never told him to dry off and put clothes on.”

She threw him a towel and told him to dry off. Then she pointed out the clothes he was going to wear that night. Next she went back to the other bathroom to blowdry her hair and finish getting ready for the event.

At about 6:15, she checked on him again. This time she couldn’t find him. She smelled something–and it smelled good. It smelled like someone was grilling. And she realized that someone was her husband.

She stepped out on the deck to find him all dressed up, putting burgers on the grill. She asked him what he was doing.

“I’m hungry,” he said. “I’m making us cheeseburgers.”

She tried to explain that there was no time to make cheeseburgers. She told him that they had to leave in 15 minutes. He took the burgers off the grill and put them back in the fridge. She turned off the gas grill when she realized he had neglected to do so.

Then, she drove him to the event, where he beautifully explained the challenges of living with dementia to a large crowd. In fact, he explained it so well that it was hard for some people to believe he had dementia.

“He does great at public speaking once we get him up there,” his wife told me. “But getting him to that point? It’s a struggle.”

I know a woman, Lena, who was always punctual. In fact, she was critical of those who were habitually late. Lena once told her own daughter that her chronic lateness was a sign that she was selfish and inconsiderate. When Lena started showing up late to work and social events, people knew something wasn’t right. It wasn’t that she didn’t know she had to be somewhere at 7 pm. It was that she struggled to mentally schedule and complete the tasks needed to actually get there at 7. She couldn’t set a timeline to get dressed for the event by 6:30 and leave by 6:45. It was the first sign of dementia noticed by her family and friends.

Think about your days. Think about all the places you are expected to appear at certain times prepared for whatever you came there to do. Work. Meetings. Appointments. Lunch with friends. A concert. A basketball game. Dropping your kids off at soccer practice. Happy hour. For most of us, we’re talking about a dozen events each day. Imagine if you struggled to figure out the steps you needed to take to get there for each of them. You’d be exhausted by mid-morning.

And then sometimes we have to use a lot of mental energy to plan for events that don’t even involve leaving our homes….

I can’t say I’ve ever cooked a real Thanksgiving dinner for a large crowd. If I have it my way, I never will. And it’s not because I’m a bad cook. (To be fair, I probably am a bad cook, but that’s not why I won’t do it.). I don’t want to take on this challenge because the idea of managing time and tasks to put a complete dinner on the table at a certain time completely overwhelms me. To me, the most challenging piece of pulling off a meal like this is managing your timeline so that everything is hot and ready at your designated meal time.

A friend of mine visited her grandma for Thanksgiving this year. Her grandma was hosting a large crowd of family and friends for a 5 pm meal. When my friend arrived at 3:30, the turkey was still frozen. When my friend asked her grandma about it, her grandma told her that she would put it in the oven after the green bean casserole was done baking. When her family tried to explain that the turkey should have gone in the oven about noon, my friend’s grandma got argumentative–because she had cooked dozens of Thanksgiving meals and wouldn’t put up with anyone telling her she didn’t know what she was doing. She was diagnosed with Alzheimer’s a few weeks later.

Dementia is known for impacting memory, but it impacts brain function more broadly than most people realize. It affects planning–which means people with dementia are often challenged by looking ahead at the day’s schedule and taking appropriate steps to carry out that schedule.

That doesn’t mean they are unmotivated. And, no, they are not trying to be frustrating. It’s just…dementia.

According to Stephen Hawking, “Half the battle is just showing up.”

Maybe he should have left out the word “just”—because showing up isn’t always easy.

And I’d say that often showing up is more than half the battle in Dementialand.

I believe most people are good most of the time. I think most people want to help other people. But helping isn’t always as simple as it seems…

This is how helping should go–Someone needs help. We receive a signal that help is needed. We reach out. The other person accepts our help gracefully. We provide the type of help that they need in the way that they prefer to receive help. They are thankful. We feel good about ourselves. In the future, they help us.

We all know that this isn’t always what happens. A lot of things can go wrong, actually, despite our good intentions. Maybe the person denies they need help in the first place. Or maybe you find out later that the person was deceiving you and didn’t need help at all–and you feel betrayed. Perhaps you provide too much help, too little help, or the wrong kind of help. Maybe you were asked to give help that you didn’t have the qualifications, skills, or knowledge to provide.

It could be that they don’t seem to appreciate your help. They give you an inadequate thank you or no thank you at all. They could thank you in a way that you don’t recognize. Maybe we start to give help and they push the limit…leaving us feeling like they have taken advantages of us. Or when we need their help in return, they seem to forget that we provided them with help in the past. If you think about it, the whole process of providing and receiving help is pretty complicated. It’s no wonder that sometimes things go sour.

There are unlimited ways this plays out in life. Think about all the times you’ve tried to help people. You had the best of intentions. But things didn’t go as you’d hoped. It happens a lot…in big ways and small ways. It leaves us hurt. And it happens in Dementialand.

You probably think I’m talking about care partners who are trying to help individuals with dementia. Sure, that’s part of it. I can think of many times I’ve tried to help people with dementia and it hasn’t worked out as planned. Once I helped a woman at a nursing home walk to the dining room. I realized later that she thought we were leaving the facility to go to a birthday party. When she understood that I was helping her walk to the dining room, she said I was a conniving little girl. (For the record, I was about 35 years old). I wanted that warm, fuzzy feeling you get after you lend a hand. Nope. I got an insult instead. I didn’t take it personally, but it wasn’t pleasant nonetheless.

Care partners are often trying to help but–in the opinions of their loved ones with dementia–providing help that isn’t needed. Care partners may think they are helping by reminding their loved one that they no longer have a driver’s license. The care recipient may not see that as help. In fact, they may see it as hurtful. It’s difficult to help someone who doesn’t think they need help. But so many of us have to do it–and not just in Dementialand. (One of the biggest challenges I’ve encountered in my personal life and professional life is the complicated issue of trying to help someone who does not see that they need help–or thinks that the type of help they need is totally different than the type of help you think they need. This happens frequently in my job as a college professor. It also happens in my marriage, and–to be fair–every marriage.)

It sounds like a dumb statement make, but it’s worth saying it explicitly: People with dementia can be helpful and often are quite helpful. They can be the helpers, as well as the recipients, in scenarios. I have a friend with younger-onset Alzheimer’s who is quite capable of being useful in many ways. She has always been quite talented, and she’s still in the early stages of the disease. She struggles to get people to accept her help. They worry about whether she’s capable so they take away her opportunities to contribute. When she does help, she is not genuinely thanked; instead, she feels patronized, like a small child allowed to help her mom in the kitchen for the first time. Her attempts to help often leave her feeling insulted rather than fulfilled.

I know a lot of families who are struggling with caring for a loved one with dementia. I am always encouraging others to reach out to these families and provide assistance. They may need emotional help, like someone to listen, but many times the help they need is more practical (mowing the lawn, running errands, etc.). Sometimes I am critical of our communities because we don’t reach out to these families. However, I have to admit that many times these families do not accept help when people do reach out. Accepting help is part of the equation, too. We need to accept offers of help.

Sometimes accepting help makes us feel guilty, but it shouldn’t. A colleague of mine had breast cancer a few years ago. She’s a person I really enjoy and admire, so I gave her the vague, “Please let me know what I can do to help you.” It was a sincere statement. I wanted to be able to help, but I didn’t know how to help without being intrusive and pushy. I was incredible grateful to her the day she called and asked if I could pick her up from a medical appointment. She needed a ride, and I needed a way to feel helpful. I was probably as thankful for the opportunity to help as she was for ride. That’s the way helping should work. She had no idea how grateful I was that she followed up on my offer. Some of my families who are affected by dementia should take a lesson from my colleague.

When I think about caregiving in Dementialand, a lot of stress and many conflicts stem from attempts to help that don’t go as planned. Our idea of the help required is not congruent with the other person’s idea of the help required. We may step back and take a different approach. We decide to provide more help. Or less help. Or a different type of help. We may try to explain our approach to helping in an effort to convince the other person that our type of help is the type of help that they need. We do something different because what we are doing isn’t working. Sometimes our new strategy doesn’t work either. Or maybe it works for a while…until it doesn’t anymore. And we adjust again. It’s a dance.

Our attempts to help sometimes end in hurt, and that’s inevitable. But we keep trying to help.

Sometimes in life you need a little bit of perspective. And sometimes people say just the right thing at just the right time.

I was having a bad day. I could list the things I was struggling with–a few bigger things and a lot of inconsequential things–but I won’t. I’ll just say that I wanted to go home and take a nap…for about a week.

But I couldn’t. I had scheduled an activity with some people who had dementia. As I drove up to the building, I didn’t really want to go in. I was going to have to fake enthusiasm because I sure wasn’t feeling it that day. I slapped on a smile that was not the least bit genuine and buzzed my way in.

One of my favorite friends with dementia (and favorite people, for that matter), who I will call Oliver, was quieter than usual. As I was leaving, I asked him if he was okay.

He told me that he had experienced a minor stroke recently and injured his ribs in a fall while recovering.  Because he wasn’t able to move around much, he developed a pressure sore on his hip. This pressure sore became really painful and infected. While on antibiotics for the infection, he developed oral thrush. He also mentioned that he was struggling with some ongoing complications of diabetes. Oh, and he had prostate cancer–but he’d had that for several years.

Oliver had early stage dementia, and I found myself hoping that perhaps he had confabulated at least part of this tale. Nope. An employee stood behind him and nodded, confirming his story.

“I am so sorry you are dealing with all of this. It sounds like you’re having a rough time,” I said.

Oliver responded, “It’s not that bad. At least I don’t have acid reflux.”

I must have shot him a funny look because he restated his point.

“It could be worse. I could have acid reflux,” he said.

I wasn’t sure what acid reflux had to do with anything, so I asked, “Do you get acid reflux a lot?”

This time he gave me a funny look.

“No,” he responded. “Why do you ask?”

I shrugged. I guess it didn’t really matter. The guy was just grateful that he didn’t have acid reflux. He might have cancer, diabetes, thrush, an infected pressure sore, and injured ribs, but he did not have acid reflux. If could be thankful for that, I should stop asking questions.

I left that day thinking I had 99 problems but acid reflux wasn’t one. If Oliver could recognize that his situation could be worse, I could certainly realize that my situation could be worse.

I’ve developed a coping strategy, thanks to Oliver. And it’s an effective one for me. Whenever I’m having a rough day, I think of one bad thing that I am not experiencing. I know that this sounds ridiculous, but sometimes it’s so ridiculous that I have to stop and smile.

I remind myself that things could be worse–and then I come up with one way in which things could be worse. I could have accidentally burned down the house by leaving on the space heater. I could have backed into the garbage can on the way out of the garage. Or I could have leprosy. If you stop and think about all the things that have gone right which could have gone wrong, you realize that a lot of things have gone right.

Then next time you are having a bad day, complete this sentence: It’s not that bad. At least I _______.

If you can’t come up with anything better, fill in the blank with “don’t have acid reflux.”

Unless, obviously, you do have acid reflux–in which case you will have to come up with something else.

Someone once told me, “When you assume, you make an ass out of u and me.”

But a while back, I did make an assumption. And I was wrong.

I was visiting a memory care community. Two women were chatting in the common area. I would estimate one of the woman at about 55 years old, and the other woman at about 75. (I must admit, however, that I am terrible at estimating ages, although you might expect a gerontologist would have a special talent in that area. Nope. But I’ve learned to error with lower estimates if I must error.)

The women were laughing a lot. I couldn’t hear their conversation, but it seemed pleasant and upbeat. I watched out of the corner of my eye as both women stood and hugged. The older women had tears in her eyes as she said goodbye to the younger women. I made an assumption that they were mother and daughter. That assumption would turn out to be correct.

I was absorbed in my own business for a few minutes. I used the restroom and set up for a presentation I was doing for staff. Then I noticed the older woman exiting the facility through the front door.

Here’s where I made the assumption that was not correct.

Thinking the older women was a resident with dementia, I found an employee and told her that I thought one of their residents had left the building. Understandably, she did a panicked speed walk to the front door. Then she looked at me.

“Um. Where?” she asked. I pointed at the older women, who had almost reached the parking lot. The employee gave me an annoyed look.

“That’s Donna. She’s not a resident. Her daughter lives here,” she said. I must have looked skeptical because she added, “Her daughter has Alzheimer’s.” (By the way, Donna is not a her real name. I’m using a pseudonym to protect her privacy and also because I’m somewhat bad with names. I don’t remember her real name.)

I had correctly assumed they were mother and daughter. I had incorrectly assumed it was the mother who had dementia. I felt a bit embarrassed for causing a panic. Then I thought about how I had fallen prey to one of the myths of Alzheimer’s and related dementias.

We tend to think dementia is only about old people. And it’s not. There are people who can say, “My daughter (or son, for that matter) has dementia.”

Between 5% and 10% of individuals with Alzheimer’s have the younger-onset variety, which manifests before age 65. I once met someone who was diagnosed with Alzheimer’s in their late 30’s, and I’ve met many individuals who were impacted in their 40’s and 50’s. Other types of dementia can also affect younger individuals.

I once had a strange conversation with my mom. To be fair, I’ve probably had many strange conversations with my mom, but this one comes to mind today.

I can’t remember how we started the conversation or even the specific topic, but the following words came out of my mom’s mouth: “If I die before you do….”

It was a very matter of fact statement thrown into a practical conversation–not meant to be dramatic in any way.

I continued her statement naturally without much thought “….and I hope you do.”

On the surface, it might even seem to be a not-very-nice thing to say, but I meant it. I hope my mom dies before I die because the alternate scenario would be a million times more difficult for my mom. And I think she’d agree. I hate the thought of grieving my mother but I’ll take it as a natural part of life…because it’s better than the thought of my mother grieving me. And I don’t mean that selfishly. I hope to be able to accept the loss of my mom when she gets old…really really old… I don’t think my mom could ever, under any circumstances, accept losing me. (Does that sound egotistical? I don’t say this because I’m great. I say this because she’s a mom.)

Most of us expect to lose our grandparents and parents. That’s the normative sequence of events. Of course, we hope that they are here long enough to see us well into adulthood. We want them to see us accomplish things. We want to become people that make them proud. But we know that they won’t be around forever. It’s not a fun thing to think about it, but it’s life. We expect to grieve grandparents and parents after they pass away in old age. We don’t expect to grieve our children and grandchildren. That’s not supposed to be part of life. We aren’t supposed to outlive people we produce.

My grandmother passed away from cancer in 2012. Her son, my Uncle Terry, died of cancer about six months later. There was a lot of loss in my family in a short time. Looking back, I am thankful that my grandmother was not on this earth to see Uncle Terry pass away. He was there the last few days in the hospital to say goodbye to her. I’m sure it wasn’t easy for him, but I will forever be grateful that the roles weren’t reversed. After all, no one wants to outlive their kids.

We associate Alzheimer’s with aging. We think of dementia as something people get when they are nearing death anyway. Yet, dementia is not normal aging. Dementia is caused by various diseases, and we need to find a cure for those diseases. I hate dementia when it happens to anyone of any age. There is a certain level of acceptance when it occurs in older adults–and there shouldn’t be. Sometimes people don’t think your quality of life matters when you get to a certain age. I think that’s bullshit. It’s a statement made by people who cannot wrap their minds around the possibility that they will someday be “of a certain age.” I often think we have more empathy in our society for injured puppies than for older adults who may be suffering.

I found something particularly heartbreaking about a woman visiting her daughter who had dementia. I’m sure part of that sadness was because the woman with Alzheimer’s was fairly young, but it was more than that. I see plenty of daughters visiting mothers with dementia, and many of those mothers are in their 50’s or early 60’s. Younger-onset dementia isn’t as rare as I wish it were.

This may have been the first time I’ve seen a mother visiting a daughter with dementia (with the exception of individuals with Down’s syndrome who have dementia–which is common), and I couldn’t get the image out of my head. Is it harder for a mom to see her daughter struggle with dementia than vice-versa? Or is it just hard to see someone you love negotiating Alzheimer’s or another dementia–no matter who it is? I’m not sure it’s worth a philosophical debate, but there is something that seems extra unfair about watching your child, even if that child is grown, on a journey with dementia or another serious illness.

Several years back, I struck up a conversation with a resident at a nursing home who was a very sharp and aware 80 years old. She had lost her only child in a car accident many years ago. She explained to me that her life had been divided into three trimesters–just like her pregnancy, ironically. And, at the age of 80, she realized that her three life trimesters were pretty much equal in number of years. The first trimester was before she was a mother. Her second trimester was when her daughter was alive. Her third trimester was after her daughter passed away. From her perspective, she was an entirely different person in each trimester. She had spent the entire last trimester wishing she, rather than her daughter, had been in that car.

She told me she was ready to die because she did not want the longest trimester in her life to be the trimester after her daughter died. Then she told me that sometimes she wished she had “that Alzheimer’s” so she could forget the pain of losing her daughter. I told her that, unfortunately, she seemed sharp as a knife and I didn’t see any type of dementia in her near future. That probably wasn’t the right thing to say, but I didn’t have anything better.

I don’t have a prescribed message for you today. But here’s what I know…. In a perfect world, grandparents would die before parents, who would die before their children…And everyone would get old before they die. That’s how it’s supposed to be. But it doesn’t work that way. And we want to think that these people we lose “out of sequence”–who we aren’t supposed to lose–are in a “better place.” But isn’t the best place right by our side? (And no, we aren’t selfish to want them to stay.)

In a perfect world, if some people had to get dementia, those people would be in their 90’s or maybe even 100’s, but that’s not the case. Dementia isn’t just about our parents and grandparents. It’s also about our siblings and spouses. Sometimes it’s about our children. We have to stop thinking it’s about the generations above us. Really, it’s about all of us.

We think about dementia and old people come to mind. And I can’t criticize people for making this association.

After all, when I saw a mother and daughter in a memory care community, it never occurred to me that the daughter could be the one with dementia.

Letting go is the hardest thing.

And we have to do a lot of it throughout our lives.

We have to let go of things. Old clothes. Furniture. Appliances. Toys. If we didn’t let go of things, we’d all be hoarders. Letting of things isn’t as easy as it sounds, though, because things have meaning. Things remind us of people who are gone and times that have passed. Things remind us of moments, events, and milestones. Sometimes we are scared that getting rid of things means getting rid of memories. It doesn’t, of course, but tell that to someone as they are going through a loved one’s belongings after they’ve passed away. We attach emotionally to items that are tied to people, places, and times that were meaningful. That’s normal, but we can’t physically carry all of these items with us throughout our lives. We literally don’t have room. We have to let go of some of it.

We let go of our dreams. Sometimes, we have to let go of one dream to achieve another. We give up our goals to free up time and energy to seek out new goals. Sure, our parents and teachers told us to be persistent and to try, try, try again, but there’s a time to move on. (Case in point: A friend of mine was telling me about a guy she knows who wanted to be a rapper. This guy–who is now close to 40–still wants to be a rapper. He lives with his parents and waits for his break… Maybe it’s time to let go and pursue a new dream.)

Then we let go of people. Or we try to let go of people, anyway. We have to let go of people when we end romantic relationships. It’s not easy, even if we know the relationship isn’t working. When I was dumped and heartbroken in my early 20’s, my wise sage of a friend Lisa said something that has stuck with me. She told me, “Letting go of the wrong person means you’re one step closer to finding the right one.” I have repeated this to at least a dozen crying female college students in my office over the last nine years. Breaking up isn’t a failure. It’s progress, right?

We have to let go of friendships when they no longer serve us. It doesn’t mean we’re angry or upset. It just means that our time and emotional energy is best spent elsewhere. Looking back, I’ve clung to some close friendships in my life long after I should have let go. My mistake was thinking that if a friend brought something positive to my life at some point, they were meant to be a forever friend. I don’t think that anymore. Forever friends are amazing, but you’re only gonna get a handful–and that’s if you’re lucky. Other friends come and go, and those temporary friendships aren’t failures. You just have to know when to move on.

There’s a lot of letting go in Dementialand. We let go of people when they die, but all stages of dementia involve letting go. People with dementia let go of their jobs. They let go of their driver’s licenses. They let go of the roles and responsibilities that they played throughout their lives. One of my friends told me she had to let go of being a perfectionist when she was diagnosed with Alzheimer’s. Sometimes people with dementia let go gracefully, and sometimes they don’t. I can’t blame them to being angry and for fighting the inevitable. They have every right to be mad at dementia for what it has taken from them. Yet, somehow, they cannot allow that anger to take away what dementia has left behind.

I often use the phrase, “Let go of what was to enjoy what is.”

I usually say it in some overly pleasant, patronizing term, as if it’s easy to do. I usually say it as if it’s something that I do with grace. For the record, I am not good at letting go. It’s hard for me. And I’m not unique in that.

A friend of mine has a mother who is in her 80’s. Although her physical health is impressive for someone in her 80’s, she shows some symptoms of dementia. She has become more self-centered and isolated. She doesn’t want to leave her home, and she struggles to focus on a conversation.

My friend said to me, “I know my mom’s still here, but I have to let go of who she used to be. And I really liked who she was.”

I thought about this statement…It is important for her to let go of who her mom was. Letting go of the person her mom was can allow her to enjoy the person her mom is right now, in this moment. It’s okay to admit that some of her favorite things about her mom are gone. It’s okay to grieve for aspects of the relationship that are no longer possible while enjoying those parts of the relationship that are still possible.

Reminiscing about the past is great, but clinging to it only brings disappointment. People with dementia are not the same as they were ten years ago. To be fair, the rest of us aren’t either. We change. We struggle with our own changes. We struggle with seeing changes in our loved ones.

We struggle to let go of skills and abilities our loved ones used to have. We can’t accept that they can’t tie their shoes. They could do it a month ago. We don’t know why they can’t remember who we are all of the sudden. Maybe it’s because we colored our hair or lost a little bit of weight. We want to think they’ll know who we are next time we stop by. Sometimes we even argue, “Grandma, you know who I am. Think hard. I know you do.”

We struggle to let go of the activities our loved ones used to enjoy. I spoke at a support group over the holidays. A woman in the group told me how she’s finally let go of her husband’s love of going on long car rides out in Iowa farm country. It used to be their Sunday activity. Now, it just makes him anxious. He asks where they are, where they are going, when dinner is, when they will be home. After a couple months of this, she let it go. She wishes she’d let it go sooner, but she just couldn’t. He really used to love those Sunday drives.

In my experience, caregivers struggle to let go of control. You have to let go of the notion that you have any control over a disease like Alzheimer’s. You know what happens if you make all the right decisions regarding your loved one with Alzheimer’s? The Alzheimer’s gets worse. Sure, you can have an impact on quality of life, but you cannot stop the progress of the disease. Although this sounds like a negative statement, I find that many dementia caregivers find comfort in knowing that decline is not a result of any of their actions or lack of actions. I know one caregiver who repeats the phrase “I didn’t cause this, I can’t change it, and I can’t cure it” to herself before bed each night. It’s her way of letting go.

Life is about letting go. Sometimes, unfortunately, we have to let go before we feel the story is really finished. We can’t go back. It doesn’t matter if we want to. It doesn’t matter if the past was better than the present. All we’ve got is the present. Sometimes the present is bittersweet, but–as one of my friends with dementia recently reminded me–there is still sweet in bittersweet, even if sometimes it’s just a little bit of sweet. Otherwise it would just be bitter.