DISCLAIMER: The following is my personal commentary and opinion only. I am not a trained or certified medical professional. If you need help, are concerned about your memory, or want to learn more, please consult with your personal physician, local aging support network, or the Alzheimer’s Association (http://www.alz.org)
It’s pretty hard to ignore all the times the word “dementia” swirls by you, especially as you get older. The media is inundated with it, thanks in large part to aging Baby Boomer projections. And, the truth of the matter is, for the most part, dementia’s primary risk factor is aging. By all reports, it’s estimated as many as 15million Americans will have some form of dementia by 2050 simply based on the statistical likelihood against the projected number of people over 65.
Having worked with people with dementia, and had family members with the disease, life with dementia is something that I pay close attention to; it plays high in my mind. I hate the stigma that’s attached to it, the fear some have for how to “deal with it.” Too many times, I’ve seen people dismissed, talked over, treated with a lack of dignity and respect because they have dementia. I’m sure it’s not intentional…at least I hope it’s not. But….if I get dementia, what will happen to me?
I am Still ME
I want people around me to know that if I get dementia…
- Treat me like an adult. Don’t call me sweetie, honey or dear. My name is Barb, or Barbara if you’d like. And if you know me really well, I might let you call me Babsy or “B”.
- Help me do as much as I can myself for as long as possible. It might take me a little longer, or you might need to coach me, but the more I do myself, the more I’ll feel like, and feel better about, myself. Enable; don’t disable.
- If I can no longer read, please make sure I still have books around me and when you can, read to me. You know I love reading, and I can’t imagine life without it. Even if I can only page through a book, not understanding what’s on a page, I will still feel the joy that a book can bring me.
- Be sure my eyebrows are on every day….I mean every day. You know I don’t feel whole without my eyebrows. And you better find someone who knows what they’re doing. None of this crazy shit I see on young kids today!
- Make sure someone knows how to put a fashionable outfit together, even if you don’t. I’ve always tried to dress nice, and that won’t go away. Be sure my clothes are bright and cheery. And, don’t forget the jewelry!
- I don’t like bingo. Don’t make me play bingo or I’ll be sure to give you hell…fair warning…
- Help me to plant flowers, even if only in a little pot. Take me to a garden. Help me remember my beautiful roses and flower gardens. Remind me how much I love dirt on my hands.
- Remember that I love junk food…I’m willing to eat healthy, but don’t forget the junk food!
- Be sure I have music…my music…which I supposed will be considered “old fogey” stuff by the young folks at some point (maybe that’s now!?). Remember that I’ve never gone a day without music of some sort…ever.
- Include me in as much as possible. Some things might be hard, like busy or loud places, or places with a lot of people. I’ll always love a good party…I just might need it in smaller doses.
- Don’t talk about me in front of me. I’ll know. Just because I have dementia doesn’t mean I won’t know. I will still have feelings….and you know how that ticked me off before dementia!
- Be patient with me; don’t be bossy. You know I’ve never liked bossy people, and in fact will do the opposite! I may not remember. I may ask the same question a lot of times. I may make up stories that aren’t true. Just roll with me, and we’ll be just fine.
- Tell people that I have dementia. TELL THEM. Don’t hide it…and don’t hide me. It’s important. People need to understand the disease in order to not fear it. It’s not catchy, for Pete’s sake!
- Ask me to tell stories. I’ve always been known as the “long story kid,” and I imagine with dementia I might be able to tell some really good ones. Ask me to tell stories…it’ll help me keep my language and remember.
- And while I’m telling those stories, don’t be surprised if a swear a bit. You know I’ve always had a “colorful” vocabulary. Don’t expect that to change. In fact, it might even get better with dementia!
- If you can’t care for me, don’t feel bad if I need to move to where others can care for me. I understand. It’s o.k. Just make sure the people are nice, it’s clean, and I have a nice view to the outside. This dementia thing isn’t easy, especially on caregivers. I’ll need you to the end, so don’t burn out in the beginning.
- Remember…I’m still me. Somewhere in there is the person you’ve come to know and love. I might not know you anymore, but I’m still me. I’ll be different…but I’m still me.
If you or a loved one has been diagnosed with a form of dementia, resources and help are available. Contact your local Alzheimer’s Association (www.ALZ.org), aging resource or senior center, and work closely with your doctor. Help is there. You’re not alone.