Sitting in the Gray in Dementialand

For the sake of full disclosure, I will tell you that I am a person who lives with depression. This is not a shocker to most who know me…I’ve made a point of dropping this info matter-of-factly into casual conversation.

I have three dogs. I hate ironing but love cleaning with bleach. My favorite place to buy clothes is SuperTarget. And, oh yeah, I have clinical depression.

When I was first diagnosed with depression, I was 21. It was hard for me to tell people about it. But I’m over that. I know when I talk about having depression it makes some people uncomfortable. I will happily accept their awkwardness if it means that they will be a little less uncomfortable when the next person (who might be a bit more fragile than I am) tells them that they have clinical depression.

Also, I have a friend who talks without fear of stigma about her irritable bowel syndrome. So why would I be ashamed to talk about depression?

I have never had suicidal thoughts. I’ve never wanted to harm myself. Yet, my hope is that my candidness about depression might somehow make someone who is suicidal or self-harming more open to sharing that information in order to get help. In other words, I am hoping to help set a precedence for more openness about mental health. Also, I want people to know that you can have clinical depression and live a pretty dang happy and successful life. Sometimes it’s easy, and sometime it’s a struggle, but I’m doing alright.

As a person with depression, I’ve had many people in my life who have been well-intentioned in their plans to “cheer me up.” Some have even literally said, “Cheer up.”

They wanted to help. They really did. But let me be clear…

No one in the history of the world has cheered up because someone told them to cheer up.

Think about it…maybe you have depression or maybe you don’t…but when you are down and someone tells you to “cheer up,” is your first instinct to experience sudden extreme happiness? Or is it to punch them in the face?

Yeah, that’s what I thought.

When someone with dementia is sad and we don’t understand why, our first thought is to tell them to be happier. And—as much as it makes me irate when people do it to me—I still occasionally find myself doing it to my friends with dementia.

Don’t get me wrong…

Sometimes distraction works when someone with dementia is upset:

Oh, Myrtle, it’s a beautiful day outside. Let’s walk outside and enjoy the sun.

Did you see that a man is playing the piano down the hall? Let’s go take a listen.

It’s time for lunch, Jim. Let’s go see what’s in the fridge.

Distraction isn’t necessarily a bad strategy. Sometimes it’s quite effective. But think about a time when you were really down and tried to share your feelings with a friend, and your friend—rather than listening—led you in a different direction. They tried to pull you away from those feelings or even implied that your feelings weren’t valid.

Here’s my message for you today:

Maybe your friend has depression. Maybe they have dementia. Perhaps they are a dementia care partner who is struggling. Maybe they are just your average person who has had a really shitty day at work.

Consider that perhaps cheering them up isn’t your job. You can’t cure depression or dementia. You can’t take away the demands of caregiving. And you can’t change what happened to them at work today.

Sometimes you can’t bring someone into the light. It’s not because you’re a bad friend or you aren’t supportive enough.

I’ve learned that the best friends are the friends that sit in the gray with you. They accept that you are down. They accept that you are not at your best, and they don’t care.

When I am with someone living with dementia and that person becomes upset or sad, I try to think about what a friend would do. Sometimes that person is able to tell me why they are upset, and sometimes they are not. It doesn’t really matter. I sit in the gray with them…because at this particular moment dragging them into the light would be insulting. And sitting in the gray is what friends do.

Sometimes I still try to pull people into the light when I should sit when them in the gray.

I was recently at an assisted living where a woman with dementia was crying. I sat down beside her. I asked what was wrong and if I could help. She told me that she had just moved in and hated that they wouldn’t let her go home.

This was a pretty nice assisting living, and I expect her family was paying a pretty penny for her to be there. If I had to live at an assisted living facility, this was the one I would choose.

I said, “But this place is beautiful. And I had lunch here, and the food is great. And look at this amazing atrium.”

She looked like she was going to slap me (which was a valid reaction), and she said, “Do you want to live here, honey?”

I had made a mistake. I had tried to pull her out of the darkness when I should have sat there with her. Did I want to live at this assisted living? I did not. It could appreciate it as a great place because I had my keys in hand and was about to leave.  Did I want to live at a place where I could only eat at certain times? Did I want to live at a place that implied a lose of independence? Did I want to live at a place my family insisted I move into although I felt I was absolutely fine in my own familiar home? Nope. I am ashamed to say I questioned the validity of her feelings by trying to pull her into the light.

I have a friend who cares for his wife who has dementia. She lives at home, and she functions with little assistance. However, a few weeks ago she realized she could no longer make coffee. For decades, she had gotten up early to make coffee, but it was now just too confusing. After several incidents that ended with a pot of hot water only and too many clean-ups of coffee as a result of forgetting to put the pot under the machine, she tearfully told her husband she was done making coffee.

He told her that was fine. He said it wasn’t a big deal. He could make the coffee.

But it wasn’t fine to her. It was a big deal. She didn’t want to give up making coffee. She was upset.

She cried. He didn’t understand why she was crying. Because it’s just coffee. He could make the coffee.

But it was a big deal. It was a loss. Not being able to do something you’ve done for decades is most certainly a loss. He tried to talk her into the light. He told her that he didn’t mind making coffee. He said that he could get up a few minutes earlier each morning to make sure there was hot coffee. He didn’t understand it wasn’t about him.

He should have sat with her with her in the gray.

Sometimes we feel the urge to tell people things aren’t so bad. And, yeah, our heart is in the right place. We want people to be happy.

But we might be better off listening and accepting the other person’s feelings.

Lots of well-intentioned people try to pull their friends out of a funk and into rainbows and sunshine. Maybe it’s the best of friends that are able to sit with us when none of that is within view.

 

 

11 thoughts on “Sitting in the Gray in Dementialand

  1. Oh, Elaine, this hit me where I live! I’ve been going through the “if you think it’s a nice place, then you live here,” from my husband recently. At least I think I’ve been doing the right thing ‘in the gray’ with him. All along I’ve said, ‘I know you don’t want to be here, and I don’t want you to be here either…” then I make him a cup of tea. You’re the expert, and I learn something every week from you. Thanks.

    Liked by 2 people

  2. Everybody with dementia is different, and I’m not sure if there’s any shoulds. Hopefully your friend will try something else to comfort his wife…did he try making it with her?

    Liked by 1 person

  3. This post has made me re-think my closing words to my own blog posts. I usually write, “Be safe, be well, and please be happy.” As though just saying it could make others be happy in their lives. I think I’ll leave that off from now on–happiness comes from within each of us and isn’t something that can be bestowed upon others. Thanks for this. I can also appreciate the wife’s sadness at the realization that she’s lost the ability to prepare the morning coffee. It makes me remember the times when I came face to face with my physical and mental limitations and could have sat down and cried at the realization I couldn’t do what I used to do. I have had chronic depression and pain since 1989. As you say, some days are a real struggle. Thanks for sharing that. I know I’m not alone, but I admire your being open about it. Warm regards… Carol (aka Tehachap)

    Liked by 1 person

  4. My husband has depression. He bought a sun lamp, and it really works for the type of depression he has. I only suggest using it one time. More isn’t good when you suggest things.

    Liked by 1 person

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