September is Alzheimer’s Awareness Month and while many think this disease affects only old people, the numbers tell another story. Worldwide, 35 million people are affected by dementia, and it can strike as young as age 40. Even more troubling are projections, including one published last spring in The New England Journal of Medicine, that due to the aging population, dementia cases will more than double in the next 30 years.
So even if you’re not personally affected by the disease, at some point you’ll likely know someone who has it. But rather than panic, let’s make it a call to action to learn more about dementia so we can both help prevent it as well as best assist those affected.
It’s a topic my family is intimately acquainted with, as my mom has struggled with dementia for several years. (In her case, rather than Alzheimer’s, mini strokes have given her something called vascular dementia.) In that time, she’s slowly lost elements of her personality and the ability to care for herself. But while it’s been painful to watch my mother decline; I’m still thankful for every day she’s still here with us. Below are some ways I’ve found to help make this difficult journey a little easier:
1. Accept you’re not in control.
There are many ways to help your loved one, including finding her the best care and interacting with her as much as possible, but ultimately the disease calls the shots. When I finally accepted that the mom I grew up with wasn’t here anymore and there was nothing I could do to bring her back, life got easier.
2. Do your research.
While every person with dementia is different, the disease follows certain patterns. For instance, people with Alzheimer’s and dementia can get angry without provocation. So it’s likely your loved one will lash out at you occasionally. And a symptom called “sundowning” can increase confusion at night. Knowing these trademarks of the disease allows you to not take them personally.
3. Ask for help.
My sisters and I are fortunate that our mom lives in a seniors’ residence with excellent nursing care. On top of that, we’ve hired outside caregivers who visit her a few times a week, and secured two additional hours of weekly subsidized care from a government agency.
But caring for my mom still requires much effort: visiting regularly, following up with nurses, taking her to doctors’ appointments, etc. So I can’t imagine the toll on caregivers who don’t have help. If that’s your scenario, contact your local Alzheimer’s association and find out what community supports are available as well as try to enlist people you trust to help with your loved one.
4. Try to interact only when your energy is high.
I used to have a rule that I had to phone my mom at least once a day. But since I worked for several years in a very demanding job, I would often call her at the end of an exhausting day. Needless to say, by then my patience for my mom’s repetitive questions had evaporated. I now know it’s better to skip a day than to have a conversation neither of us enjoy.
Obviously, if you’re a live-in caregiver, you probably don’t have this option. In that case, I highly suggest you get someone to cover for you regularly, so you can recharge.
5. Take care of yourself.
I don’t know what I’d do if I didn’t have yoga and meditation to decompress. When I used to get swamped at work, I’d let both slide, and then it would take all the energy I could summon to deal with my mom. I’ve since realized caring for my body and spirit helps me be more open-hearted with my mother and better able to respond to her needs.
6. Laugh when you can.
Caring for someone with dementia has its comic moments. My mom has always been outspoken and funny, and now that she has dementia, you never know what she’s going to do. That includes the time my mom asked a stranger if she was wearing a wig. She’s also decorated her walker with Christmas ornaments in August and been known to wear three watches at once. Life is also an endless scavenger hunt with the number of rings, wallets and eyeglasses she’s “organized” (a.k.a. put somewhere she can no longer remember, for my family or her caregivers to find at some later date). Being able to laugh at some of these situations helps lighten the load.
7. Protect your own brain health.
Being around someone with dementia, especially if it’s a relative, can make you wonder what lays ahead for your own mind. While there’s a genetic component to Alzheimer’s and other dementias, there’s also evidence that lifestyle plays a role. Some of the factors that are thought to help prevent brain deterioration include regular exercise, eating healthfully, maintaining good cardiovascular health and exercising the brain.
Finally, if you’re a caregiver, cut yourself some slack. There will be days when you lose patience. Rather than beat yourself up, remember that caring for someone with dementia is noble work, and among the most meaningful things you’ll ever do.