Category Archives: families

It Goes On

alzheimer's, alzheimers, caregiver, caregiving, death, dementia, dying, families, frontotemporal dementia, lewy body dementia, , ,

Her husband had Alzheimer’s, so she became a caregiver. She never wanted to be a caregiver. It’s not like she filled out an application for this job. It’s just what you do when your partner has dementia.

She described it as a roller coaster of a journey, and she resented the trip. There were moments of joy. There was a lot of laughter. But overall she felt cheated. Cheated out of the trips she and her husband planned for after retirement. Cheated out of how she thought she and her husband could provide childcare for the grandkids. Just cheated.

She wanted some time to herself, but she never seemed to have it. She wanted her kids to come over and stay with their dad, but they never did. She told her friends she dreamed of being able to wander around Target aimlessly on a Sunday. And sometimes all she wanted was to be able to take a hot bath without her husband walking in and needing help with something.

She wanted to sleep through the night but hadn’t in a few years. She wished she had the time and energy to put in an old fitness DVD and do a workout. Her friends invited her to go out for dinner once in a while, but they knew she’d say no. Eventually they stopped asking.

Then her husband died.

And the strangest thing happened.

She didn’t know who she was.

Every other role in her life–friend, volunteer, mother, grandma, neighbor, reader, traveler–now seemed unfamiliar and uncomfortable. And she found herself yearning to be a caregiver again.

There was a sense of relief, of course, when she had more freedom. But she also just felt empty.

She didn’t realize it at the time, but the caregiver journey–as difficult as it had been–was a journey that made her proud. She had been a great caregiver to her husband. She felt a sense of accomplishment. When she looked back, she realized that her years of caregiving for her husband were sacred and meaningful.

And yet she still felt resentful and cheated.

But she’d go back.

If she could rewind time and re-live those experiences of bathing her husband and brushing his teeth and making sure he ate, she’d do it in a heart beat. It was exhausting. And frustrating. But it also gave her this feeling of warmth and purpose. It was like she was put on this earth to care for him. And she did care for him. She fulfilled her mission.

She had a hard time finding another role that gave her that sense of purpose. Being a grandma was fun, but her grandkids were getting to the age where they didn’t need her. She started going out with her friends but felt isolated because they couldn’t really relate to what she’d been through. She did some solo travel but it just made her realize that no one really needed her.

And she’s still figuring it out. She signed up at a gym and is doing some group exercise classes. She wants to volunteer at a hospice but the training isn’t for another month. She brings snacks to her grandson’s soccer games. She’s doing some reading on finding a purpose and living a meaningful life and makes fun of herself for the stack of self-help books on her nightstand.

She knows she will get there. She’s surprised that the hardest role she’s even taken on is so hard to let go. She hated all the stuff she now misses, and it doesn’t make sense. She’s angry at herself for not finding more joy in the daily caregiving grind.

We are all constantly re-defining our role and purpose in this life. We are all searching for meaning.

But she’s really doesn’t know why she’s here now, and she has faith she will figure it out in time.

And this brings me to one of my favorite quotes:

In three words I can sum up everything about life: it goes on. –Robert Frost

Dementia and the Unfairness of Life

aging, dementia, families

I spoke at a brunch on Saturday. As I was grabbing my coat to leave, I was approached by an older woman in a beautiful purple paint suit and matching purple hat.

She told me she was 96.

I wasn’t sure how she got to the brunch, but I think she may have driven herself.

She was vibrant with amazing skin. She spoke eloquently and had a friendly, approachable way about her.

I liked her immediately.

In our conversation, she mentioned that her daughter has dementia. I thought I misheard her. I asked for clarification.

Yes, her daughter has dementia. I was hoping I had misunderstood.

Her daughter is 72 and is the process of moving into a facility with her spouse.

I don’t have children, but I can say with confidence that being confronted with the possibility of one of your children passing away before you has to be one of life’s cruelest situations.

It’s not supposed to happen. We see our grandparents die. We see our parents die. We aren’t supposed to see our children die.

It’s not the order of things.

We think dementia is about our grandparents. We think it’s about our parents, maybe our spouses, or perhaps our siblings.

We don’t think of dementia being about our children.

For this 96 year old woman, it is about her child. Her child may be 72, but her child is still her child.

I didn’t have a lot of offer her in our conversation. I could have said it’s unfair but that’s so obvious it didn’t seem worth saying. I told her “I am so sorry,” but that seemed inadequate.

I put pressure on myself to find the right thing to say, but sometimes maybe there isn’t a right thing to say.

The Forgetting and the Remembering and the Forgetting

alzheimer's, caregiver, caregiving, dementia, families, lewy body dementia

I often talk to loved ones of individuals with dementia. They tell me that one of their biggest fears is coping with the moment when their loved one no longer knows who they are.

But it’s seldom a single moment in time.

Typically, it goes something like this:

They blank on your name and need a reminder. They think you are someone else. They know your name. They don’t know who you are but then suddenly they do. They know everything about you but call you by a different name. They stare at you blankly and ask who you are. They know your name. They don’t know your name.

Maybe all of that happens over a day, a week, or a year. Dementia isn’t something that pulls off the band-aid quickly.

I was spending time with a group last week. After more than an hour of visiting with her, a friend living with dementia took a look at the woman next to him and retreated backward.

In a panic, he asked, “Now who are you?”

When he searched for our names and our relationships to him, they just weren’t there. Why did they disappear at this particular moment? We don’t always know. But they came back in about two minutes.

And does it make sense that they remember your brother (who comes around once a year–either for Thanksgiving or Christmas but never both) but they don’t remember you (who sacrifices much of your time, effort, and finances in the name of their care)? Nope. But sometimes life doesn’t make sense and getting mad at it doesn’t change anything.

You’re allowed to be mad, though. It’s maddening.

Dementia’s progress isn’t linear nor is it predictable. People living with dementia don’t start forgetting people in the order of “not significant in my life” to “has always been my favorite although I’d never admit it.” People with dementia don’t forget loved ones because they are mad at them. REPEAT THAT TO YOURSELF.

People with dementia don’t forget loved ones because they are mad at them.

And it’s not that people exit the mind in a moment and never return. You can be forgotten and then remembered and then forgotten and remembered.

In addition, knowing when you’ve been “forgotten” isn’t always so clear-cut.

People have told me that Mom remembers their name but not that they are related. Or that Dad recognizes them as his son but is never sure which son. Or, wait, maybe he’s a nephew.

Several people with dementia have told me that they seem to remember people with their hearts even though they may not remember them with their heads. Sometimes they feel a sense of familiarity or even love when they don’t know who someone is. To be remembered by someone’s heart doesn’t sound all bad, does it?

But I am not Suzy Sunshine. You probably know that by now.

How can someone who gave you your name forget your name? I won’t try to talk you out of being sad.

Like many things with dementia, it’s not one moment. It’s a lot of moments.

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

alzheimer's, caregiver, caregiving, dementia, dementialand, families, nursing home

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

aging, alzheimer's, caregiver, caregiving, dementia, families, nursing home

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

alzheimer's, alzheimers, caregiver, caregiving, dementia, families

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

aging, alzheimer's, caregiver, caregiving, death, dementia, dying, families, hospice, lewy body dementia, pwd, , , , , , , ,

Sometimes I write for people with dementia. Sometimes I write for people who have no experience in Dementialand. But today…today I am writing for dementia caregivers. And, really, for all caregivers.

If you are a caregiver, things can get pretty rough. I can show you research studies on the rates of clinical depression among caregivers. Spoiler alert–they’re astronomical. (They’re high among caregivers and higher among caregivers of those with dementia.)

Your life has to be lived one day at a time…maybe even one minute at a time. You get angry. You want to say that you’re angry at the disease and not the person, but I know that sometimes it’s not always easy to separate a person and a disease when you’re living on a couple hours of sleep a night.

All caregivers struggle. Some struggle outwardly; others seems strong on the outside but bury their struggles inwardly. You are not alone in your struggle–but I know it seems that way sometimes. Maybe your family is supportive, but it’s likely some of them make your life more difficult rather than easier. I’m guessing some of them make you crazy. Maybe you’ve got some friends…but some of them probably just don’t get it, even if they try.

I’ve put together a list of habits that I typically see in caregivers that maintain their sanity. [And–let me state for the record–a caregiver that stays sane might sometimes feel like they are losing their mind. They might cry. They might get angry. Maybe they sometimes make poor decisions. They mess up (we all do, right?). They could be on Lexapro or another anti-depressant. But they get through…day by day…minute by minute.]

Habits of Sane Caregivers

1. They sleep. Sure, maybe some nights are better than others. But they find a way to sleep. And, when they start getting an unacceptable amount of sleep each night on a regular basis, they find a solution. Maybe this means having someone watch their loved one a few afternoons a week so they can take a nap. If anxiety keeps them from sleeping, they go to a doctor or a counselor. They understand that they can’t caregive without sleep.

2. They leave the house. I know a guy who cared for his grandma who had Alzheimer’s. At one point, he went over a week without leaving the house except to shovel and take the trash out. When other people heard about this, they thought of him as a hero. Staying in the confines on your home doesn’t make you a hero. It sets you up for depression and stress–which sets you up for sub-par caregiving. Get the heck out of the house once in a while.

3. They understand that others can give care, too. A husband I once talked to loved his wife so much that he wouldn’t leave her side….24/7. He didn’t trust anyone else to take care of her. He thought he was the only one capable. He had plenty of people volunteering to come over and stay with his wife for a bit, but he declined their help. Let go of the idea that you are the only one that can provide care. Maybe someone else isn’t going to do things exactly the way you do them. That’s okay. Accept help.

4. They have a sense of humor. I don’t know what makes you laugh. Funny movies. Videos of cute cats on YouTube. Conversations with friends. Comic books. Sports bloopers. South Park. Figure out what makes you laugh and actively seek that out. And don’t feel guilty for laughing.

5. They go to the doctor. The people who are the best about getting their loved one to the doctor when needed are often the worst at seeing the doctor themselves. And if you aren’t healthy, you can’t provide care. So go to the doctor for small health issues…so you don’t end up with big ones. I talked to a guy once who had a sinus infection but wouldn’t go to the doctor because his wife was dying from cancer. His sinus infection didn’t seem important when he thought about what his wife was going through. Ironically, it was his wife who finally told him that he needed to get his butt to the doctor to get some antibiotics–because he was getting increasingly irritable (or “pissy” as she said) since he didn’t feel well. You do the people around you a favor when you take care of your health.

6. They don’t feel guilty. As a caregiver, you mess up. Maybe you thought your wife only needed one pain pill, but in retrospect you should have given her two. Perhaps you tried to make dinner and it was a flop. Or you messed up the time of your grandma’s appointment and she was 30 minutes late. You gotta move on. Consider it a learning experience. Caregiving involves a set of practical skills, and we get better at those skills over time. When you make a mistake, don’t beat yourself up. Learn from it and move on. You have a limited amount of energy. Guilt is a complete waste of energy.

7. They understand that the goal is to have a good day. They understand that their loved one will not “get better.” They are realistic in understanding that decline is inevitable in the case of Alzheimer’s, Frontotemporal dementia, or a terminal cancer. Yet they get that tomorrow can be a better day, even when their loved one isn’t improving.

8. They forget about people who aren’t supportive. They don’t continue to count on people who don’t come through. It doesn’t matter if those people are family or friends. It doesn’t matter if they have known they for decades. They stop letting those people disappoint them. They find new people to support them. Sane caregivers make a conscious effort to surround themselves with people who don’t screw them over time and time again. And when people do screw them over, they don’t spend a lot of time calling them out on it. They don’t have the time to waste on that type of thing. In short, they don’t do drama. 

And a few final notes. If you are a caregiver, listen to me here. It is okay to eat frozen pizza a couple nights a week. It is fine if sometimes you don’t return a phone call. Your neighbors will just have to deal with it if you don’t cut your lawn for ten days. Don’t be too hard on yourself if your flowers die because you forget to water them. (Tip: Buy hanging baskets of flowers. If they die, throw them away and buy new ones. It’s what I do.)

I once overheard two women who were caring for their husbands with Alzheimer’s having a conversation about the demands of their everyday lives.

“You know what we need to do?” one said to the other. “We need to stop feeling bad about all this stupid shit.”

Exactly. 

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

alzheimer's, caregiver, caregiving, dementia, families, lewy body dementia, , , , ,

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

aging, alzheimer's, caregiving, dementia, families, , , , , , ,

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?

alzheimer's, caregiving, death, dementia, dying, families, , , , , ,

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.