Today I am presenting my third in a series of lists.
I’ve decided that there are two types of people–people who love a good list and people who feel tied down and burdened by lists. I am the former.
In fact, when I wrote out my to-do list for today and “make a list” was at the top of the list I got pretty excited. I even enjoy listing about lists–how’s that for meta?
Today’s list is about stuff I’ve learned in this field. What has surprised me is that what I’ve learned from my interactions with caregivers and individuals living with dementia works in other settings as well.
What you learn in Dementialand doesn’t stay in Dementialand. This isn’t Vegas, after all. What I’ve learned in Dementialand migrates to my family and work life in some pretty significant ways.
What I Have Learned in Dementialand
- It really isn’t that important that everyone knows you are right. And this is an observation from someone who always has to be right–as my husband points out (and as much as I hate to admit it, he’s right). This lesson doesn’t just apply to interactions with those who have dementia. Sometimes I have to bite my lip, be satisfied in knowing I’m right, and shut the hell up.
- People living with dementia may have a different reality than I do, and who’s to say that mine is “correct”? We all see the world through our own lens and with our own biases. I don’t care who you are, where you live, or whether or not you have dementia…you have your own unique viewpoint of this world. And sometimes– when I step into someone else’s world and see the world the way they see it–I realize that their view of the world is a lot more positive and life-affirming than mine.
- Two wrong are better than a right. That’s something someone with dementia said to me a few weeks ago. I’ve decided it’s my new mantra. Nope, two wrongs don’t make a right; they make something better.
- Silence is okay. Sometimes people living with dementia struggle to keep up a conversation. As dementia progress, they may become non-verbal. Resist the urge to chatter endlessly. Know that being together is enough. This also works when you are on a long car ride and you’re sick of talking to your friend or family member. Don’t fight the silence.
- Dementia isn’t funny, but some really funny stuff can happen on your dementia journey. I don’t know if laughter is the best medicine, but it’s a better way of coping than binge drinking. A lot of caregivers will say to me, “I know I shouldn’t find this funny, but….” Stop apologizing for using your sense of humor to get through.
- You can have a friend and have no idea who they are. This is frequently the case as dementia progresses. Two women at a nursing home may take comfort in each other with neither knowing the name of or anything about the other. Then again, I felt the same way about a guy who I saw walking his German Shephard on the trails by our old house almost everyday for five years. No idea who this guy was, but my interaction with him was one of the best parts of my day. You’d think you have to know a lot about someone to consider them a friend, but maybe you don’t. Perhaps a smile and a positive word each day is enough.
- I don’t get to decide if your dementia is a tragedy. I don’t get to define you as a “victim” or a “sufferer.” If you want to mourn having dementia, I have to allow you to do that. I’m not here to convince you it’s not that bad. On the other hand, if you tell me that you’re living well with dementia, I’m not going to argue. I’ll celebrate with you. I don’t get to define this journey for you…just like you don’t get to define the journey I’m on. You can’t write the discourse for someone else’s life.
- If you judge a conversation by how much sense it makes, you’re not appreciating the best conversations. I realized this when I was having a delightful conversation with a woman about how the peas that had fallen off her plate were running away from home. I’m totally left-brained, list-loving, logical, and data-driven, and it’s taken me a long time to get to the point where I can say this….but sometimes making sense is over-rated. I’ll take a pleasant conversation over one that is logical any day of the week.
- Most stuff really is okay. I mean, if Grandpa wanders out the front door into a busy road, that’s not okay, but it’s okay if he tells the same story a dozen times, if he calls you by the wrong name, if he forgets to put the clothes in the dryer for a few days, if he doesn’t take out the trash. It really is okay. And that reminds me that I’d better stop freaking out if I’m occasionally five minutes late to a meeting, if it takes me a few days to answer an email, or if I accidentally eat seven cookies when I promise myself I won’t have even one. That laundry I haven’t put away in the last week? It’s okay. My mom’s birthday gift arriving a day or so late (sorry, Mom, and happy birthday today!), it’s okay. Besides, my mom would worry I’d outsourced the task if her gift arrived on her birthday.
- You can’t predict who your heroes are going to be. When you’re going through a crisis, sometimes the people closest to you–the people who you expect to be there–disappear. And sometimes these people who you barely know, or maybe you haven’t seen in years, just step up and help like it’s the most natural thing in the world. Focus on these people rather than those people who disappeared. Look at who’s there rather than looking for who’s not there.
- If you want the world to think you’re busy, wear your hair in a ponytail. A guy with dementia told me that when my hair was in a messy ponytail. Now whenever someone at work asks to take on a new task when I have my hair in a ponytail, I feel more confident in telling them that I’m just too busy. Beware the ponytail, colleagues.
- Ask the dang question. We often over-complicate the questions we ask people with dementia. We do too much explaining. We explain why we are asking the question. We explain whether we think they should say yes or say no. They get so lost within the question that they’re unable to come up with a response. Instead of saying, “Mom, I am noticing it’s cold in here since I turned off the fireplace and wondered if you wanted an extra blanket for tonight, but I’m not sure if you’ll be too hot once you get laid down. I guess I could adjust the heat if you’d like. What do you think?” simply ask, “Mom, would you like a blanket?” I’m still working on this. I started a question at a work meeting this week by saying, “I’m not sure if anyone has thought of this but you probably have since we’ve been having this discussion for months now and you all have great ideas, so I’ll go ahead and ask even though it’s maybe a bit misguided…” Ask the dang question, Elaine.
- Sometimes life is about making the “least bad” choice rather than the best choice. Dementia (or any type of illness), financial situations, and family dynamics interact in a way that can be pretty tricky. Sure, maybe we’d like to quit our jobs to care for our loved ones with dementia. For most of us, that’s just not realistic. It’d be great if we could hire registered nurses to be in our home 24/7 to provide care for someone with end-stage dementia, but that’s not happening for the majority of us commoners. That daughter who chose to place her mother in a nursing home? Don’t judge her. That was probably her “least bad” choice. She didn’t want to do it, but the other options were even less appealing.
- The days you expect to be really bad usually are only about 25%-50% as bad as you expect. There’s no data behind that percentage, but it’s what my friend Drew says and she’s pretty smart. It’s the days you don’t see coming that will really get you.
So that’s it. Or actually it’s not. I’m sure I could come up with a lot more, but I won’t. Instead, I’ll leave it up to you.
If you can think of any dementia lessons that have impacted you significantly, tell me about it in the comments below.