The B Word in Dementialand

Burden. It means hardship, mental weight, or strain.

It’s a word caregivers at dementia support groups dance around awkwardly.

Caregivers vent. They talk about their lack of privacy or their dearth of support. They discuss their frustrations and challenges. They say they have no time to care for their own health or spend with friends. Every once in while, someone cries.

But then it usually comes back to a statement that goes something like this: “But it’s not a burden. I love her and I’d have it no other way.” Then they all nod knowingly in a sterile way.

One day, a woman made what I thought may have been a total support group faux-pas. She said it was a burden.

Let me start by saying that she was in her late 30’s with a couple of kids and a full-time job. Her mom had younger-onset Alzheimer’s and had moved in. For a few months, her mom had been able to contribute around the house. She cooked and did dishes. She could watch the kids for short amounts of time. She kept the house clean and pulled weeds. But lately her mom needed so much support to provide help that it really wasn’t help at all.

“Caring for mom is becoming such a burden,” she confided to the group. Everyone cringed at the word burden. “This disease is such a burden on our whole family but most of all it’s a burden on Mom.”

Although some members of the group seemed uncomfortable with her using the word burden, there was something about what she said that made me think. The disease is a burden, she said. The person isn’t a burden. And the disease is a burden to the person who has it even more than the caregivers.

We often say that we don’t mind caring for those we love when they are ill, whether that be with Alzheimer’s, cancer, or another disease. We tell others that we do it out of love. We say we wouldn’t have it any other way. I don’t doubt that this is the truth.

Yet, we wish that we didn’t have to do it at all. We don’t like it when our loved ones need care. We want to see people we care about doing the things that they enjoy. We hate seeing them in pain, whether it be physical or emotional. And that’s why we should hate Alzheimer’s…and cancer…and ALS…and cystic fibrosis.

What this woman acknowledged was not that her mother was a burden but that Alzheimer’s was a burden. And I agree. Alzheimer’s is a burden in a million different ways. Sometimes I feel like caregivers want to deny that the disease is a burden because if they use the word it means that they don’t love the person who needs care.

You get to love the person but hate the disease. In fact, I encourage you to hate the disease and to tell everyone you know how much you hate it–because we’ve spent too long ignoring the challenges this disease presents to individuals, families, and society.

I talked to a family a few months ago who had lost their father to Alzheimer’s before his 60th birthday. They had been through a lot. He had been asked to leave (in their words, “kicked out”) of several assisted livings and memory care communities for aggressive and inappropriate behavior. They had gone through his savings and the savings of his children to try to secure him decent care. Although they weren’t entirely sure, his family thought he died because he had aspirated food into his lungs and developed pneumonia.

“Is all of this normal?” one of the daughters asked me. “I feel like our experience with Alzheimer’s has to be worse than the normal experience. If it’s like this for everyone, people would be fighting harder for a cure.”

I’m not sure there is a “normal” with Alzheimer’s, but I hear a lot of stories like this. The disease can be a real nightmare. They didn’t want to care for their father. They’d rather he didn’t need care in the first place. We care for people because we love them but it’s that love that makes caregiving so difficult. And it’s okay that sometimes we get angry and sad because we have to be caregivers, particularly when the person who needs care is young enough that they really shouldn’t need care (in a perfect and fair world, anyway). It doesn’t mean that our loved one is a burden. It means that caregiving is hard.

I’ve talked with many individuals who have an Alzheimer’s diagnosis. Keep in mind that this is a life-limiting illness. Eventually Alzheimer’s progresses to the point where life is not sustainable. You will die from the disease or with the disease. I know I may sound harsh in pointing this out, but I still struggle to get individuals to understand it. Life doesn’t end at diagnosis (and I know many individuals living and living well with the disease), but Alzheimer’s is terminal.

However, I’ve never had someone after their diagnosis mention to me that their greatest fear is death. Never. When I talk to individuals who are newly-diagnosed, they almost always say that their fear is becoming a burden to their family. Their family usually jumps in and insists that they could never be a burden.

Sometimes it’s better to acknowledge that they will all be burdened by the disease itself. And they will all be burdened together because that’s the way love works. They didn’t ask for this disease and it’s not going anywhere.

At a memory care community recently, a woman with dementia walked up to me and said, “My brain has a clog and I’m carrying around a ball and chain.” I didn’t ask for further explanation, but I sent a text to myself immediately so I would remember her exact words. It struck me as a better description of dementia than anything I’d read in a textbook.

Her clog? Her ball and chain? Those are her burdens. People with dementia are not burdens. They are burdened.

Why Dementialand Needs an Orientation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But When Are You Supposed to Grieve in Dementialand?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Picking Battles in Dementialand

I don’t mean to criticize dementia caregivers. Caring for someone with dementia can be challenging and draining. But I talk to a lot of caregivers who create problems where I don’t see any.

Here’s an example. A woman approached me after a presentation I gave in the Des Moines area. She was concerned about her mom, who had been diagnosed with Alzheimer’s and recently moved in with her.

Always an avid reader, her mom kept with her life-long habit of reading a chapter each night before bed, except now she reads the same chapter each night. She didn’t remember she had read the first chapter the night before, so she read it again. Her daughter had given her a bookmark and even a short lecture on how to use it, but she was stuck on the first chapter.

I kept waiting for her to get to the problem. Then I realized this WAS the problem. But is that really a problem?

I asked the woman, “So why are you concerned about this?”

The woman responded, “She’s never gonna finish another book.”

I still didn’t see the problem.

I also knew a man with dementia who talked to his IV pole as if it was a guy from work. His wife asked me how to explain to him that it was an IV pole and not a person. I asked if his conversations seemed to create any fear or agitation. She told me that it seemed like his IV pole kept him company and he interacted with him like it was his best friend. Yet she was surprised when I told her not to try to explain his friend was an IV pole. How would you like it if someone to tried to convince you that your best friend was actually an IV pole? Seem ridiculous? It would probably seem just as ridiculous to him.

I had a hospice patient who had dementia about ten years ago. She had a habit of unloading the dishwasher and stacking all the dishes on the counter. Once she finished that, she loaded them right back into the dishwasher. She sometimes did this for a few hours at a time. Her family wanted to know how to stop her. I asked why they should stop her. She seemed purposeful and happy while she loaded and unloaded the dishwasher.

If someone with dementia is happy, safe, and free from pain and anxiety, ask yourself whether their behavior is problematic. It probably isn’t. Now, it may be annoying to you, but that’s totally different. And if it is annoying to you, you need to focus on how you can change something about yourself (your attitude, your environment) so it is less annoying.

Dementia presents plenty of challenges. We may have to find a way to keep people from wandering and getting lost. We may struggle with how to talk to grandpa about giving up his keys. Convincing someone to take medication can be a struggle. Sometimes we even have to stop people from putting inedible items, like marbles, in their mouths. Those are challenges.

Yet I notice that families want to create problems where they are none. And when we do that, sometimes we don’t save enough energy to problem-solve issues that really do need to be solved.

Shattered iPods in Dementialand

The other day I was getting on the treadmill when I dropped my iPod. It landed precisely on its screen. And, yep, the screen shattered.

It still works. Except if I want to adjust the volume. I’m still deciding how important that is.

My husband, Bill, calls me the Osama bin Laden of electronics. It’s fair (although he recently left a FitBit out in the snow for a week).

This is the third iPod I’ve dropped and broke in the past couple years. And I put one pair of headphones through the washer and dryer on Thanksgiving. Bill bought me a new pair for Christmas. I washed those a few days after the New Year. Miracle of miracles, those still work.

If I continue my electronic terrorist ways and happen to develop dementia, Bill might be in trouble. Because if I don’t remember breaking electronics, I will likely blame him.

Think about it. If I break my iPod and I don’t remember breaking it a couple of hours later, I will see a busted iPod and assume the only other person in our house broke it. Based on my reality, that’s a logical explanation.

Sometimes people with dementia become paranoid and accusatory. It’s frustrating, of course, but it makes total and complete sense.

A man with dementia can’t find his tools in the garage. He may have moved them a few weeks back, but he doesn’t remember that. So he thinks the neighbor stole them. (I cannot even tell you how many times I’ve heard a story about a guy with dementia who thinks the neighbor guy is taking his tools. Sometimes I have to wonder if there is really is a jerk going around northeast Iowa stealing tools from men with dementia.)

A woman gets a call from her doctor’s office to remind her of her appointment tomorrow. She doesn’t remember making the appointment. So she calls her daughter because her daughter must have made the appointment without asking her first. And she doesn’t think she needs to see a doctor in the first place.

People with dementia work within their own realities. For the record, so do people who don’t have dementia. But when the person with dementia and the caregiver live in different realities, it’s tough.

Caregivers tell me stories like:

“My husband thinks I mess up the TV by hitting all the wrong buttons on the remote. But he does it.”

“Mom leaves the oven on all the time. When she notices it’s on, she calls me and yells at me because she thinks I left the oven on when I was at her house.”

If you are a loved one of someone with dementia, what do you do when you get accused of something you didn’t do?

You step into their reality–which means you apologize. If you have a loved one who has short term memory problems that lead to accusations, you are gonna be saying “I’m sorry” a lot.

And, for most of us, that’s really hard. It’s difficult enough to apologize when you’re wrong. And now you’ve gotta do it when you’re not wrong.

And after you say, “I’m sorry about that,” you focus on modifying the environment. Can you change the set-up of the remote or TV so it’s harder to screw up? Can you unplug the oven or even take it out of the kitchen so Mom doesn’t leave it on?

So practice this line: “I’m sorry about that. Let’s see what we can do to fix it.”

Did you break it, take it, or mess it up? Nope. And it doesn’t matter.

Welcome to Dementialand.