Pushy Awesome Friends in Dementialand

A few weeks ago, someone made a not-very-nice comment about my blog. It’s okay. I’m over it (sort of), but I can’t say it didn’t sting. It wasn’t constructive criticism. It was mean-spirited rather than useful. I even lost some sleep, and sleeping is my favorite thing in the world. (If you know me, you know that I don’t exactly excel on little sleep.)

I had been on a roll writing my blog, but this took the wind out of my sails. I didn’t want to write anymore. I told a few of my best friends this, and they all had the same response. They didn’t tell me I should keep writing the blog. They told me I would keep writing the blog.

They didn’t entertain my reasons for wanting to stop or take a break. They didn’t want to have a long discussion about it. They just told me that I would keep writing the blog. I would keep writing because there was no other option. And so I did keep writing.

Sometimes that’s what the best of friends do. They don’t talk to you about your options. They don’t tell you what choice you should make. They just tell you what you will do and then they make sure that happens. I’m generally not a fan of pushy people, but there are times when your best friends step in and make a decision for you. It may not be what you want at the time, but it’s what you need.

I spoke at an Alzheimer’s workshop last week. I noticed two older women in my audience. They were well-dressed, attentive, and poised with pen and paper to take notes. They sat in the second row, and I liked them immediately because they laughed at my jokes. After the presentation, we struck up a conversation at the refreshment table. (As an aside, if you want to talk to me after I do a presentation, don’t go to the stage, head to the food table, especially if they have cinnamon rolls.)

One of the women, Ann, was caring for her husband with Alzheimer’s in her home. Her best friend, Carol, had insisted they come to the workshop.

“I didn’t want to come listen to you at all, honey. But this one here made me,” Ann told me as she motioned toward Carol.

I learned that Carol had read about the workshop in the paper and told Ann about it. Ann was somewhat interested, but finding someone to care for her husband would be difficult, so she told Carol it just wouldn’t work.

That’s when Carol said that they would be attending the workshop. She called her own daughter to come stay with Ann’s husband, and she called to reserve their spots at the workshop. She told Ann what time she would be picking her up. She also mentioned that she would be buying lunch after the workshop. To make a long story short, Carol is awesome. And I told her so.

“I still didn’t want to come,” Ann confided. “But I really didn’t get a say in it.”

Ann had a couple of questions as a follow-up to my presentation. We chatted for 15 to 20 minutes about her husband’s challenges with impulse control and anxiety. Carol pulled a small spiral-bound notebook out of her purse and started taking notes on our conversation. At one point, she asked for my business card in case they “needed me” in the future. I happily handed it over. I really hope they do reach out to me in the future.

I can’t stop thinking about how I wish that every caregiver had a friend like Ann had in Carol. If Ann had asked Carol if she should find someone to stay with Ann’s husband so they could go to the workshop, Ann probably would’ve said no. That’s why Carol didn’t ask. She just did it. She didn’t ask if she should call and reserve seats at the workshop. She just did it. And sometimes that’s what the best friends do. They don’t ask. They just do. Maybe it’s pushy, but maybe pushy isn’t always a bad thing.

As one of my best friends was battling cancer about a year ago, she said something that has stuck with me. She was speaking about her neighbors when she said, “They’re the type of friends who don’t ask if they can bring dinner over. They say they will be bringing dinner.” When she said that, I vowed to try to be that type of person (although I can’t cook…so maybe bringing dinner over isn’t really the absolute best way for me to help people).

Unfortunately, I find that many caregivers don’t have supportive friends like Ann does. Dementia can be isolating and take a toll on friendships. Even close friends may not know what to say or do, so they keep their distance. They think it’s better to say or do nothing than to say or do the wrong thing.

This goes for those who are diagnosed with Alzheimer’s and related dementias as well as caregivers. I once asked a woman in her early 40’s who had been diagnosed with Alzheimer’s what the biggest surprise had been. She said that it was that the friends she thought would never leave her side had left her side. She defended them, saying that she knew they were confused and scared. Even though she tried to not take it personally, it hurt.

My point here is ridiculously simple. We all need friends. Having dementia or being a caregiver for someone with dementia doesn’t change that.

And maybe friends need to stop saying, “Let me know if you need anything,” and instead say, “I thought you needed this, so I already did it.”

Finally…to my friends who told me I would keep writing my blog…thanks. I owe you guys.

16 thoughts on “Pushy Awesome Friends in Dementialand

  1. Omg thank you to your friends! I’ve just found this blog and it’s going to become one of my best friends! I’m caregiving an early ftd.

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  2. I would have lost some sleep over it, too. I can’t speak to why someone would bring you down, but I can say I’m relieved that you aren’t going anywhere! You have given inspired many ah-ha moments that have opened my eyes to a newer, more educated and positive way of viewing dementia.

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  3. It sounds like I am not the only blogger who has lately received some not-so-nice comments in the last week or so. This makes about the fourth amongst my acquaintances. Wonder if this recent rash is just around the subject of dementia, or in the world at large. Hard to get past … (( hugs ))

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  4. I love your blog!! My family members and I reference your posts a lot. You are making a bigger difference in our lives than you realize, otherwise you wouldn’t dare think about stopping! People can be real jerks. I’m so glad you didn’t let one naysayer bring you down.

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  5. I’m glad you did not stop writing your blog. Even though I’ve only subscribed for 2 weeks, what I have read has helped me care for mom and dad. It gives me some things to ponder as I drive to and from work that gives me perspective. Thanks

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  6. Wow, I could really relate to this entry.. When my mom went into an assisted living facility I though her lady friends would continue to see her.. Wrong, they all disappeared. I realized later that they were scared to see what could be their own future if they got diemntia.. But it was sad. She would have enjoyed their visits even if they just sat and talked to her even if she did not reply to much.. I felt deserted by them although I never said anything to them.. What I questioned whether they were really her friends at all.

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    1. I’m sorry to hear that. I feel like sometimes people let their own fears impact how they interact (or don’t interact) with people who have dementia. And I think sometimes friends stop showing up because they don’t know how to act—so it’s easier to just stay away. It’s completely understandable that you felt let down by her friends.

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  7. Never stop writing your blog. Ever.

    Please and thank you. 🙂

    Honestly, it’s the highlight of my day when I receive notification of a new post.

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