I am working on a presentation for an upcoming dementia conference. The goal of my presentation is to educate family care partners and give them some coping strategies.
I’m either efficient or just lazy because I decided there was no reason to build this presentation from scratch. I have a file on my laptop titled “Dementia Presentation Materials and Stuff.” I opened that file to find about 15 Powerpoint presentations I’ve done for family care partners in the past five or so years.
I decided to take a look at those presentations. On some of them, I used unfortunate fonts, weird color schemes, and lame graphics. (I’m sorry graphic design friends….I used a lot of Comic Sans.)
But I found some common themes from presentation to presentation. In fact, I’m kind of a broken record.
I challenged myself to come up with the ten themes I hit on most frequently when I talk to care partners. I figured this would be a good representation of what I think is important for care partners to know…because it’s stuff I repeatedly talk about. Now I’m thinking about making this into some sort of handout or poster.
And here are those themes:
1–You can’t fix dementia.
I don’t care how much you love someone or how many books you read. It doesn’t matter if you feed them the perfect diet and travel to specialists across the country. At this point in time, we cannot repair the brain after dementia takes hold. So don’t beat yourself up when dementia progresses. You’re not doing anything wrong.
2–Connect; don’t correct.
When we correct someone, we decrease our chances of connecting with them. I know this is tough with family members. In many families (including mine), being right is important. Remind yourself that it’s better to make a connection than to be right.
3–Having dementia is tiring.
We don’t talk enough about the mental fatigue that people with dementia experience. The dementia brain has to work really hard to process information (and information includes…everything…sights, sound, tastes), so it frequently gets exhausted and needs a break.
4–Their reality is just as real to them as your reality is to you.
That guy your mom thinks is standing in the corner? He’s just as real to your mom as your mom is to you. And she might think you’re crazy if you don’t see him.
5–Sometimes a nursing home is the best option out of a bunch of not-great options.
Let go of the guilt. Placing someone in a nursing home isn’t a punishment. I’ve never heard anyone say, “I hate Dad and am looking forward to dropping him off at a nursing home.” If we all had unlimited funds to hire staff and redesign our houses, we could keep people with dementia at home—-but we live in the real word. Sometimes we have to choose a nursing home not because we love the idea but because it’s the best option we’ve got.
6–Dementia isn’t just about memory loss.
The change in personality? The moodiness? The paranoia? That’s not just Grandma being difficult. That’s dementia. Dementia is a constellation of symptoms–one of which is memory loss.
7–Dementia will change your relationships.
Accept that your relationship with the person living with dementia will change. Be flexible. Understand that what worked in your relationship before might not work now. And know that sometimes, in some relationships, some of these changes might be positive.
8–Dementia changes how someone experiences the world.
All the information we have about this world comes from our five senses. Dementia changes how we take in information through sight, touch, smell, taste, and hearing.
9–If you’ve met one person with dementia, you’ve met one person with dementia.
Dementia impacts everyone differently. Some people sleep more. Some people sleep less. Some people can’t stop eating. Some people refuse to eat. You can’t make a prediction about one person with dementia based on the experiences of others with dementia. Your loved one was unique before, and they are still unique.
10–This is a marathon, not a sprint.
If you see sudden changes, they are likely not due to dementia. For better or for worse, dementia tends to be a slow moving beast. That makes is especially important for care partners to take care of themselves.
Stay tuned next week when I talk about the meaning of life. Okay, maybe I don’t really know what the meaning of life is. But I am working on a blog post on dementia and meaningful life.
Oh, and have an awesome Monday!