In my opinion, the most exciting development in the field of dementia over the last several years is not a promising drug trial. It’s not a research study identifying–once and for all–the cause(s) of dementia. It’s not a vaccine or a professionally-led intervention. It’s nothing that tenured professors like myself are doing. And it doesn’t take place within the walls of a university or medical center.
I believe that the greatest movement has been the involvement of people living with dementia in advocacy and education. They’ve connected by means of social media and videoconferencing. They’ve started writing. They’ve started doing public speaking.
I know what some of my readers are thinking. They are thinking….people with dementia can’t write. They can’t get up and speak in front of groups. And how would they even set these things up? They can’t use computers, talk on the phone, or keep an up-to-date calendar.
Sure, dementia progresses to a point where writing and speaking become more challenging and–at the end of the disease process–may be impossible. (Kudos to people with dementia who continue to do these things as they become more difficult. And, to be fair, I know lots of people without dementia who struggle with computers and can’t keep an up-to-date calendar.)
There are many individuals living with dementia who are not only capable of this type of public advocacy but capable of doing it quite effectively.
One person living with dementia told me, “I know lots of people with dementia can’t speak out like I can, and maybe someday I won’t be able to do it. That’s why it’s important that I’m doing it now.”
I hear so much about how challenging it is to be a dementia care partner, and it is challenging without a doubt. However, I hear less about how challenging it is to live with dementia. I give much credit to those living with dementia who are willing to educate others about their challenges….and their triumphs.
In some circles, we are replacing the term “caregiver” with “care partner” to identify the partnership that develops between the person living with dementia and those who care for them.
Yes, it is a partnership. It is certainly a shared experience.
But being a person with dementia and a care partner are different roles.
Both roles can be roller coaster rides—but maybe they are different roller coasters in the same amusement park. They are close together but move in distinct patterns and have unique features.
I frequently hear people say, “Dementia is harder on the family than it is on the person.”
I have a few thoughts when people throw this statement at me looking for agreement. Often, it is a family member who makes the statement. They understand their own challenges, but they are less likely to understand the challenges of their loved one with dementia.
To be fair, this is a very human way of looking at things. We get what we do. We get why it’s hard. We get why it’s tiring and frustrating and we know how often we lose patience.
We often don’t understand the challenges of the people right in front of us because we are too busy focusing on negotiating our own.
I see this frequently at the university. Professors think their job is challenging because they are familiar with the daily challenges. Secretaries will tell you their job is more challenging because they see their own daily challenges but not the challenges of professors. Same with administrators. Janitors. Coaches. Public safety officers.
We don’t understand other people’s roles so we don’t know what they heck they are doing all day. We just know that we are busy doing things they don’t have to do. So their job must not be that hard.
Also, why is it a contest? Why are we comparing the struggles of the care partner and the individual living with dementia? Does the person who has it hardest get a medal?
Again, this is a human thing. I frequently hear college students trying to top each other in conversations about how little sleep they got in the last week. If one of my academic colleagues talks about how busy they are, another will chime in to make a case that they are busier.
Why do we make this a contest?
Living with dementia is hard. Being a care partner is hard.
They are both challenging in unique ways–and that’s why I believe it’s important for both groups to have private forums to discuss what they are going through.
(I rewrote the last sentence several times….the first attempt was: That’s why I believe it’s important for both groups to have private forums to complain about each other.)
One of my friends with dementia is in a Facebook group started by someone diagnosed with a type of early onset dementia. The group is designed for individuals diagnosed with early onset dementia. She enjoys the opportunity to get feedback from others with similar challenges.
One day she was frustrated that her husband was dismissing her opinions about which new car they should purchase because he no longer believed she was capable of processing such information. She logged on and wrote a long post where she “bitched up and down” (her words) about her husband. Many people who were also living with dementia chimed in to offer her support and advice. It didn’t change anything about the situation. Yet she felt validated.
About a week later she logged on to read posts in the same Facebook group and saw the administrators had welcomed a new member to the group….her husband. She quickly deleted the previous post. She has no idea if her husband read it or not.
She went to her husband and was honest in explaining that she would prefer he leave the Facebook group so she’d have a private outlet to express herself. He told her that he joined the group to get a better sense of how she was feeling about having dementia.
Her response was, “Then why don’t you ask me?”
He left the group.
The same woman told me that she had been meeting with a few women who also had dementia that she had met through connections at her church. When they learned that the mother of a member of their church had been diagnosed with Alzheimer’s, they invited her as well.
She came to their next coffee date…and sat down at the table beside her husband who apparently thought he would be welcome as well.
He was not welcome, and he was told to come back to pick her up in an hour. Fortunately, he seemed to understand.
I am supportive of communities (online and face-to-face) that allow individuals living with dementia to interact without the “expertise” of their care partners and professionals. No matter who you are and what you’re going through, you want to be around people who get it.
I understand that if I am sitting around with several people who have dementia….I don’t get it. I am the outsider. To think I’m the expert on a condition that they all have but I don’t is pretty arrogant.
This reminds me of a conversation I had with a guy with Alzheimer’s a while back.
“I love my wife, but she doesn’t understand me,” he said.
I took a deep breath and tried to come up with a response.
“A lot of spouses struggle to understand what their partner with dementia is going through,” I said.
He gave me a funny look.
“Oh, it’s not about the dementia. She’s never understood me. It’s mostly because she doesn’t get my need to drink a six pack of beer every night,” he said with a laugh.
That’s another thing about this care partner relationship…it exists in the context of life. The relationship pre-dated the dementia, and the complicating factors of a relationship that have existed for years don’t disappear so people can focus solely on dementia.
If you hadn’t noticed, life doesn’t just give you one problem at a time.
The care partner relationship (whether it be spousal, parent-child, sibling, or even a friendship) can be amazingly beautiful.
But it is like any relationship….
You can love someone but sometimes they just don’t get it.