Reprinted with Permission from “A Bit of Brian’s Brilliance: Stories and Experiences as I Journey on with Alzheimer’s!”
Shortly after I was diagnosed with Alzheimer’s Disease in 2014, I came up with my tag line, “I Have Alzheimer’s BUT . . . It DOESN’T Have ME!!!”
What that meant to me was I didn’t want to be identified by my Alzheimer’s, rather, I still wanted to be identified as Brian. Well, things didn’t quite work out that way. Instead of continuing to identify me as Brian, it felt like more and more people started saying their good-bye’s. Phone calls, text messages, e-mails just went unanswered. It was a very lonely time and some days, it still is.
I use Social Media as a way to keep up with the latest trends, news, discoveries and anything positive I can find regarding Dementia-Related Illnesses. I also use Social Media to remain . . . SOCIAL. Most days I receive the “Memories” post that reminds me of past postings, photos and, of course, memories. While I enjoy looking at some of the photos, there are other photos that make me sad. These are usually photos of people I thought would be my friends forever but have now disappeared.
Don’t get me wrong, I am not complaining, whining, or looking for sympathy. I am simply trying to figure out why some of these folks just don’t engage with me anymore. These aren’t people who were just acquaintances, these were people I thought were my true friends and still would be throughout the rest of my life. This has proved not to be.
I am very thankful for those folks who still stay in touch with me. It brings me joy, smiles, warmth and all sorts of “feel good” feelings. I am so very thankful these folks have kept me as their friend and not toss me away like an old, used up newspaper.
This brings me to the title of this Blog Post, “Are There Do’s and Don’ts When it Comes to Dementia?” I know there aren’t really any rules but when I did some research, I came across the information below which is the closest thing I have found regarding the Do’s and Don’ts of Dementia
16 THINGS I WOULD WANT, IF I GOT DEMENTIA
by Rachel Wonderlin
- If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
- If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
- If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
- If I get dementia, ask me to tell you a story from my past.
- If I get dementia, and I become agitated, take the time to figure out what is bothering me.
- If I get dementia, treat me the way that you would want to be treated.
- If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
- If I get dementia, don’t talk about me as if I’m not in the room.
- If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
- If I get dementia, and I live in a dementia care community, please visit me often.
- If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
- If I get dementia, make sure I always have my favorite music playing within earshot.
- If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
- If I get dementia, don’t exclude me from parties and family gatherings.
- If I get dementia, know that I still like receiving hugs or handshakes.
- If I get dementia, remember that I am still the person you know and love.
These 16 things make so much sense to me. It’s basically saying, “treat me as Brian.” I know there are some things listed above that “may seem” wrong, however, don’t look at it as wrong. People who are Living with a Dementia-Related Illness may sometimes have their own reality. I go through periods of time when my own reality may be skewed. If someone tries to correct me and guide me towards the reality they have, especially when I’m in my brain fog, let’s just say it usually does not end up pretty for I become argumentative, unreasonable, foul-mouthed and even more confused as I was to begin with. I know this because I ask Maureen to tell me, when I come out of my fog, if I did anything mean or say anything foul. I try to learn from it, but sometimes it just doesn’t stick.
I know I rambled and may have gotten off topic but, this is what happens sometimes with those of us living with Dementia.
Some of my friends may have seen me acting in a peculiar way when I was in my fog. That could be a reason they stopped keeping in contact with me.
Some other friends may have had a family member who recently passed away with a Dementia-Related Illness. It may be too hard for them to see me going down that path.
Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.
Whatever your reason is for not staying in contact with me or someone else who is Living with a Dementia-Related Illness, those reasons are yours and yours alone. Just know, it’s OK. We may wonder why but the thing about Alzheimer’s and Other Dementia-Related Illnesses, we may just forget . . . until we see those Memories pop up on our Social Media feed.
Until Next Time . . .
I found the Pioneer Network today and wanted to let you know that I enjoyed your article so very much and am going to ask to join your facebook page – We Are DementiaStrong. I loved all the tips you shared. My beautiful mother-in-law was diagnosed with dementia about 2 years ago. I spend as much time with her as I can as we have always had a very special bond. I try to gently help her when I can tell she is having difficulty remembering things or in what I call “getting stuck in a loop.” I am so encouraged by your article and look forward to seeing more! God bless you in your journey and thank you for sharing with us.
We have met at several conferences through the Alzheimer’s Association. I have always enjoyed hear you talk about your experiences — to good, the bad, the ugly . . . and your creative responses to your daily challenges, such as talking about your two girlfriends Alexa and Siri. Although we are not long-term friends, I would be happy to be with you on your journey- to share funny stories of present and past, to listen when you are frustrated, laugh as often as we can. Just let me know the best platform to use – facebook, email, zoom, phone call.
Maggie, what a beautiful message. I would say that one of the things that is sort of a positive thing about having Alzheimer’s is I have met some of the kindest, funny, sincere people. I may not remember names or faces but I do remember how it made me feel.
You are now one of those individuals. I’m putting my email below and you can also follow me on my personal Facebook and also on our Facebook Page, We Are DementiaStrong!
Again Thank You!
Your insights are so valuable! My father was diagnosed with dementia and has since passed, but I wish I’d had your insights then when caring for him. This morning I listened to a zoom webinar you and Maureen presented on ‘Care Partnering VS Caregiving”. Very eye opening! Thank you for continuing to educate us as you go through your journey. God bless you both!