Habits of Sane Caregivers in Dementialand

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

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

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

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

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

Habits of Sane Caregivers

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

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

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

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

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

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

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

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

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

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

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

Exactly. 

Family Ties in Dementialand

A friend who works in the health care field sent me a text to tell me that she was reading my blog. She mentioned having experience with a patient who had dementia, but that the woman always showed up at her appointments with a neighbor. Her family wasn’t around–or at least wasn’t interested in her care. My friend was sad that the woman’s family wasn’t there for her.

I sent a text back, telling my friend that the neighbor was this woman’s family.

It’s been a common theme over the past several years in both my personal and professional life.

Family is related to you by blood. Family is created by legal ties. And then there’s family that doesn’t fit into either of the previous categories. But when you need something, they’re around just the same.

I gave a community presentation on dementia caregiving about a year ago. Two middle-aged women came up after the presentation to ask a few questions: What if she’s not sleeping? Is it normal that she’s losing weight? Why does she have so much trouble keeping her balance? How do we get her to move into a facility when she doesn’t want to?

I made the assumption that the two women were partners and that the woman they were asking about was one of their mothers. As it turns out, I was half right.

They were partners, but the woman with dementia wasn’t one of their mothers. Or grandmothers. Or aunts. Or siblings. She was a woman who lived a few blocks down the street.

“How did you come to be a caregiver for a woman who lives a few blocks down?” I asked them.

They explained. This woman had been welcoming when they moved to the neighborhood twenty years ago. Not everyone in the neighborhood was so welcoming to a lesbian couple in the 1990’s. When they started noticing she needed a little extra help, they stepped in. They mentioned that she didn’t seem to have much family.

“But she does have family,” I said. “She has you guys.”

Anthropologists and family scientists call this “fictive kin”–family that is not defined by blood or legal ties. I actually don’t like this term because it makes me think of “fiction,” and there’s nothing fictional about fictive kin.

My students and I talk about family in the courses I teach. I ask them who their family is and what makes them family. We come up with a variety of definitions–not necessarily right or wrong, but maybe a little different for everyone.

One of my students came up with a definition that I can relate to. She said that the first few people you have to text when you get really good or really bad news are your family. Many of my students nodded knowingly.

To be fair, maybe it’s not texting for you. Maybe it’s calling them or stopping by their house. But those people who you can’t wait to share good news with? Those people who support you through tough times even when you don’t ask them to? I’m not sure I can think of a better definition of family.

Sure, I see people with dementia who have little support. But most of them are loved. Some are loved by people who are related to them by blood or legal ties. Some are loved by people who aren’t related to them. And the really lucky ones are loved by both.

About ten years ago, I got to know a hospice patient that I’ll call Lydia. She had Alzheimer’s and end-stage cancer. She was staying at a hospice house, and I visited her a couple times each week. I really didn’t know a lot about Lydia. She had a son, but I knew they weren’t close, and her husband had passed away decades earlier.

One day hospice social worker called me to let me know Lydia’s time was quite limited. I stopped at the hospice house knowing it would likely be the last time I’d get to see her.

As I walked into her room, I was met by Lydia’s lifelong friend Ellen, Ellen’s husband, and Ellen’s niece. Lydia had mentioned Ellen before, and I was excited to meet her. The three of them were sitting around Lydia’s bed, talking about fun times together, and doing a lot of laughing. Lydia wasn’t responsive, but I told them I certainly wouldn’t doubt that she could hear them. Ellen and her niece were drinking wine, which they joked about smuggling into the hospice house (although I’m guessing they probably did ask the staff for permission).

The hospice pastor stopped by. He asked if we’d like to say a prayer. Before he started praying, he asked, “Will her family be coming to say goodbye? Should we wait for them?”

Ellen looked at the pastor, somewhat annoyed, and responded, “Her family is here.” He proceeded with the prayer.

Blood makes you related, but shared DNA can’t make you family. Recounting someone’s life at their bedside while drinking wine at the hospice house? That makes you family in my book.