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. 

Tequila in Dementialand

A woman had recently been admitted to hospice and her family wanted to go out of town to attend a wedding. The volunteer coordinator asked if I might be able to stay with her for an evening.

Bev (not her real name) was a divorcee in her 70’s who had had vascular dementia. She’d experienced several strokes and had been told she was in heart failure. I know she had a constellation of other health issues as well. As a former director of nursing at a nursing home, she knew where this was headed.

When I first came in, Bev offered me a drink. I made a rule for myself when I started volunteering for hospice to say yes when I was offered food or drink because people often feel the need to give me something and–to be honest–I really like eating and drinking. But when I asked Bev what she had, she threw me for a loop.

“There’s beer and wine in the fridge,” she said. “Do you like tequila? What do you like? There’s hard stuff, too.”

And she wasn’t kidding. Bev had the most well-stocked home bar I’d ever seen. Several kinds of tequila, rum, multiple flavors of vodka, whiskey, bourbon, you name it…. I’ve been to many bars that did not have that selection of alcohol.

“Do you have any soda?” I called from the kitchen.

“For a rum and Coke?” she asked. I laughed out loud, but it wasn’t a joke. I grabbed a Coke. Just a Coke.

Bev kept forgetting who I was and why I was at her house (although this didn’t stop her from continually offering me alcoholic beverages throughout the evening). She’d ask me to remind her who I was, but it didn’t seem to bother her in the least that there was someone in her house that she didn’t recognize.

Despite her dementia, Bev was pretty clear on some things. She knew she was in hospice, and she knew she had limited time. She was certain of how she wanted to die.

She told me that she had a large extended family and they spent a lot of time at her house. She told me that she thought it was partially because they loved her and partially because she kept her bar stocked. At least four nights a week she had a crowd at her house. They drank, played cards, watched movies… And she had already told her family that this was not going to change now that she was in hospice.

“The party goes on,” she told me. She didn’t want a bunch of solemn goodbyes.

Then she asked me if I’d pour her a glass of tequila. I didn’t know what to say. This was the first and last time a hospice patient had ever asked me to play bartender. I had a cell phone number for Bev’s daughter, so I decided to give her a call. I asked if her mother was allowed to have a glass to tequila.

The daughter said that Bev’s doctor had told them it was okay for Bev to have one drink each night. I felt a little bit uncomfortable pouring a drink for my hospice patient, so I brought her the bottle and a glass. With shaky hands, she poured it herself.

As we were sitting together and Bev was having her tequila, there was a knock on the door. It was two guys delivering a hospital bed. Bev’s daughter had indicated that they might be stopping by.

“Where does the bed go?” one of the guys asked.

“Right here,” said Bev, motioning to her dining room. The two guys and I gave her a funny look.

I decided I had better call Bev’s daughter. I explained to her that Bev was intent on having the hospital bed in the dining room. Bev’s daughter wanted to know why, so I asked Bev. She took a long drink of her tequila before answering.

She explained that she wanted to be in the midst of everyone. She didn’t want to be isolated upstairs in her bedroom as her condition progressed. And, she told us, she needed to make sure the bar was stocked. This was something that Bev had given some thought to. Her daughter hesitantly agreed, and the two guys brought the bed in.

They set up the bed and left. Bev turned to me and asked (again) who I was and why I was at her house. After I told her, she told me I should get myself a glass of tequila. My high school and college peers had not pressured me to drink as much as Bev was pressuring me to drink.

Although she was having difficulty remembering who I was, she was open to sharing details of her life with me. She told me that her husband had left her a few years ago. I had a feeling it was a few decades ago, but that didn’t matter. She mentioned that he “couldn’t handle the party of my life.” She told me that her husband thought she was an alcoholic.

“Maybe I am an alcoholic,” she said, leaning in. “But I’ve had a pretty good life.”

Her daughter got back about 10 pm. At this point, Bev was fighting to stay awake on the couch. As I left, she offered me a drink “for the road.” I was putting on my coat in the foyer when I heard her ask her daughter about me.

“Now, who was that? She seemed nice but I guess she doesn’t drink. I offered her the special tequila,” she said.

About a month later, the volunteer coordinator called to let me know that Bev had passed away. I didn’t ask for any details. I wanted to think she passed away in that hospital bed in the dining room with the party continuing around her.

I can’t drink straight tequila, but that night I had a margarita.

Bev was wrong about me. I do drink. I only wish I could’ve used some of her good tequila in that margarita.

Dying in Dementialand

I pulled up at a nursing home in an impoverished part of Kansas City. It was 2006–before GPS was commonplace. I had printed out Mapquest directions to find this place. It didn’t help that it was raining, almost 11 pm, and that the nursing home was tucked behind an authentic hole-in-the-wall Mexican restaurant and one of those Payday Loans joints, but I found it.

I was part of a new volunteer program that a hospice in the area had started. If a nursing home resident was “actively dying” (a hospice term used to describe what is typically the final 24-72 hours of life) and didn’t have anyone to be with them, we were called. I had taken the 11 pm to 3 am shift with a women dying of Alzheimer’s.

Although often people don’t understand that Alzheimer’s can be a cause of death, it is a terminal diagnosis. Many people pass away from other causes before Alzheimer’s kills them, but at some point Alzheimer’s degrades the brain to a point where it can no longer provide support for functions like breathing, swallowing, and fighting infection. That was the point my hospice patient had reached. Her body systems were shutting down due to Alzheimer’s.

Her name was Opal. Actually, that wasn’t her real name. I’d like to say I changed her name to protect her privacy, but the fact is that I don’t remember what her name was. And I feel like a horrible person for not remembering her name. After all, I was with her on her final journey, and that’s pretty significant.

Opal was an African-American woman in her 70’s who didn’t live in a great nursing home. It was dirty, and it smelled awful. If a horror movie were set in a nursing home, it’d be this place.

And just when I thought things couldn’t get more eerie, I saw a large rat. Upon closer inspection, I realize it wasn’t a rat. In fact, it was a small-ish shaved cat. The nursing home liked the idea of having a cat but knew some people might have allergies…. It was perhaps the creepiest-looking cat I’d ever seen. I termed it “Rat-cat.”

I found out that Opal had a daughter living across the country who had visited several weeks ago. Her daughter had been notified that Opal was passing away, but she couldn’t make it back. According to the hospice volunteer coordinator, the daughter had said she saw no point in coming back because Opal wouldn’t know she was there anyway.

Opal hadn’t recognized anyone for several years, and she’d been unable to speak for quite some time. There were some greeting cards taped to the wall behind her bed. I felt guilty about snooping, but I read them anyway. Most were religious cards that appeared to be from cousins, nieces, and nephews. One note mentioned that the sender had included a gift card to Walmart. I’m pretty certain that Opal hadn’t been up for shopping for quite a while. Except for her daughter’s recent trip, Opal hadn’t had any visitors in months.

For tonight, Opal had me. She seemed comfortable but not at all alert. Her eyes were slightly open but she didn’t seem to be able to see anything. Her breathing was labored and they had her on oxygen.

My job was to make sure she seemed peaceful and to alert the staff if I felt she was in pain or distress. More than anything, I was there to make sure she didn’t die alone.

A young nursing assistant stopped in frequently to check on her. My original prejudices about the nursing home were challenged by her cheerful and efficient demeanor. She was amazingly gentle in repositioning Opal and kind in talking to her. The nursing assistant told me to come find her if “things start changing.” I knew what she meant.

I spent most of my time sitting in a chair by Opal’s bed. I didn’t talk a lot. The TV was on when I came into the room, so I left it on and stared at it mindlessly for a few minutes at a time. There were a couple of books of devotionals on Opal’s nightstand, and I thumbed through them without really reading. At one point, I did start reading something from the devotional books aloud, but it didn’t feel right so I stopped.

The nursing assistant mentioned that Rat-cat tended  to frequent the rooms of residents who are dying, and sure enough it stopped by a few times. Mostly it just sat in the doorway and stared at me. I stared back.

I left that night not knowing if Opal even knew I had been with her. I slept a few hours and went to work the next day. I was signed up to go back the next night but had a feeling she would pass away before I got there. However, Opal was still around at 11 pm the next evening.

If you know me, you know I don’t do well on limited sleep. As I headed back to the nursing home, I was exhausted. I stopped to get a soda at a 7-11. Somehow I was distracted by the Slurpee machine and decided to mix the cherry and Coke Slurpee–something I did frequently as a kid but probably hadn’t done in ten years. And it was so good.

I brought it with me into the nursing home and stopped to see the nursing assistant at the desk. When I got to Opal’s room, I realized I had left my Slurpee at the nurses’ station. I had just greeted her by putting a hand on her shoulder and telling her who I was when I thought I’d retrieve my Slurpee, but when I took my hand off her shoulder, she made a noise.

It wasn’t something that indicated she was in pain, but it wasn’t a “good” noise. I put my hand back on my shoulder and she was quiet. I took my hand off her shoulder again, and she made the same noise–and continued to make it–until I put my hand back on her shoulder. She obviously didn’t want me to take my hand off her shoulder. She didn’t want me to leave. And, yet, I really wanted that Slurpee.

I said, “I am just going to the nurses’ station to get my Slurpee and will be right back. I will even run.” Despite her making the same noise, I took off to the nurses’ station in a full sprint. I grabbed my cup and sprinted back. I put my hand back on Opal’s shoulder, and she was quiet again. I sat with my hand on her shoulder while drinking my Slurpee for quite some time.

Rat-cat came and sat in the doorway. I wasn’t quite as creeped out by it the second night. In fact, I had gotten over the initial shock of his appearance and realize he was–in his own way–almost cute.

I wish I could tell you that Opal rallied, or at least that she opened her eyes and shared some departing wisdom with me. I wish I could share with you that I learned a life-changing lesson that would make me an infinitely better person from my time with Opal. I’d love to say her daughter called to thank me for sitting with her mom or maybe that another family member stopped in to say goodbye. None of that is true.

She passed away that night about 45 minutes after I left. Another hospice volunteer was with her. Unfortunately, the hospice failed to let me know, so I went back the following night. Rat-cat was there, but Opal’s bed was empty.

As I sit here nearly ten years later, I would give anything to remember Opal’s real name.