BOISE, Idaho — When you hear the term dementia, you probably picture a grandparent in their golden years, but approximately 200,000 people in the U.S. are living with early-onset dementia in the 40s and 50s.
"Technically, my diagnosis is undiagnosed dementia!" 48-year-old Boise resident Claire laughed.
Despite dealing with memory loss for several years already, her optimism is contagious.
"TV is so much fun these days, because I don't remember anything that I've watched for like the last five years!" Claire said. "So I can watch anything again and be like, 'Oh, how does this end? I have no idea!'"
Claire's currently on medication that's drastically improving her symptoms, but doctors only expect relief to last about six months. That's why she's made the major decision to move into an assisted-living facility while she can still think clearly for herself.
"It's important to be someplace where [I] can be safe," Claire said. "I will be going there at my age and going, 'I've got stuff to look forward to this week!' and that is something that goes away in the situation that I'm in, you know, there's just a lot less to be looking forward to."
Claire, 48, has a great sense of humor despite dealing with memory loss for the past several years. Here she explains one of the first times she noticed something wasn't right. (FULL STORY: https://t.co/Cv9lEZ1f9M) @IdahoOnYourSide pic.twitter.com/RCs2pX56ux— Karen Lehr (@KarenLehr) September 23, 2019
On the outside, you'd never know parts of her brain aren't functioning correctly, but Claire says that's one of the most frustrating parts.
"I'll even have people look at me and say, 'Oh there's nothing wrong with you! You're perfectly normal!' and I just want to scream because you don't lose your job and your car and your home when you're perfectly fine," Claire said.
After dealing with severe exhaustion for years, Claire started looking for answers in 2017. She saw specialist after specialist, eventually meeting with a neurologist who challenged her with an assortment of brain exercises.
"They switch you from one style of thought, or use of brain, to another side and see how fast it takes you to respond," Claire said. "So it might be word problems or something, then you move blocks into place; or look at an image and then from memory draw it; they'd tell me 10 words, and then I'm supposed to repeat them back; or see how many words I can say that start with the letter B in 30 seconds."
The results were revealing.
"It was quite an ordeal!" Claire laughed. "But in the course of that, we started to really understand there are literally parts of my brain that aren't working normally."
#FindingHope: A unique perspective of what it's like living with memory loss: "We get impatient. It's hard to focus, and I think people with dementia are doing the very best they can, just with really limited resources." (FULL STORY @ 10: https://t.co/Cv9lEZ1f9M) @IdahoOnYourSide pic.twitter.com/g96H5FpQgN— Karen Lehr (@KarenLehr) September 23, 2019
In the last nine months, she's had to give up her license, sell her house and car and even stop cooking at home.
She used to travel the country for a living as a senior editor for a travel magazine but had to quit her job once she realized her brain couldn't keep up.
"It was like my speech was leaving me, like my organization of my speech was leaving me," Claire said. "And I was so stressed out because this was the thing that, as a writer, it was the easiest thing in my life. I don't even remember learning how to read; I always knew how to read!"
In the last nine months, Claire's had to quit her job, give up her license and sell her house... but at 48-years-old, she can't contain her excitement about moving into an assisted-living facility in east Boise that specializes in memory care. https://t.co/Cv9lEZ1f9M pic.twitter.com/0go82T3tep— Karen Lehr (@KarenLehr) September 24, 2019
Claire says the most significant change in her life has been her change in independence. After spending a career on the road for months at a time, she moved into an assisted-living facility in east Boise this month, knowing she should make the decision to move herself now, rather than wait until she's no longer able to think for herself.
"If you don't make those choices to put yourself in the best situation possible while you can think it through, you end up staying too long where you are," Claire said. "And then when you get jerked from where you want to be because you have to be someplace else, it's much harder."
Although she often loses her train of thought, Claire says she feels empowered when loved ones chime in to help, and encourages caregivers to have as much patience as possible.
"If people are impatient with us, then we get more stressed and we get less and less able to handle our own stuff," Claire explained. "[Caregivers are] in this unique position to really empower the person you're caring for. And as person who's struggling, it makes all the difference to know somebody who cares about you is going to help you stay on track with your thoughts, and is going to help you make good decisions at the grocery store, and can help you navigate if you need something."
Without the medication, Claire says she wouldn't even be able to hold our conversation. "You'd be asking repeatedly, and I'd be doing my best to answer, and I wouldn't be making sense; I mean I might make sense for a sentence or two and then who knows what the next thing would be," Claire explained. "So it's so important that we do this now because it's night and day; it's just night and day, and I don't have to stress having conversations and trying to make sense."