Dementia Diaries: Dementia is uncomfortable. There is a stigma.
Updated: Aug 26, 2019
08/24/17 -- I deleted my 3 most recent Facebook live videos with my mother and have re-written this post Lord knows how many times trying not to "upset" anyone.
But I'm upset.
I had a GREAT 1st day at my new job and was thrilled to share it with my mom. I woke up early, worked all day, and passed up opportunities to spend time with new coworkers--I wanted to. I was looking forward to seeing my mom. But when I walked in I saw her arguing and being rude to one of the most selfless caretakers in her memory care. It broke my heart.
She was grumpy and mad I didn't come visit sooner or more often. I wanted to cry.
In the past I've shown mostly positive videos of her and I enjoying the sunset. Which is fun. But that wasn't today and if that makes you uncomfortable--I'm really sorry. Dementia is not a "comfortable" topic.
Please know before we ever started recording video (let alone going live) my mom and I talked almost immediately after her first diagnosis about documenting the real life struggles.
But I'm torn. My mother and I have talked numerous times about sharing what dementia "looks like" -- the good and he bad; and my mother has repeatedly shared with me that if she can make a difference she would like to do that.
But if we're really being REAL. That's not just sharing the good times. It means sharing the tears, the struggles, the agonizing reality of the confusion, distraction and overwhelming anxiety she's experiencing every day. Earlier today my mom sat next to me in tears and tried to explain to me (fairly coherently I might add) that she thought her dementia was getting worse.
People see my videos and say "Wow! She's doing so well!" But they don't see the days when she can't stand up straight, when she can't speak normally or when she falls and micro fractures bones in her back from falling out of chairs that she fell asleep in because her hallucinations made her too scared to sleep in her own bed.
That said... maybe moving forward I'll end these videos "earlier" or summarize them in my own words later. I'm considering that even though my mother has often asked to do these videos together.
Point is... dementia IS an awkward thing to talk about--there's a STIGMA attached to dementia. No one wants dementia. Frankly it's my worst nightmare. And here's what happens--people become EMBARRASSED. Some refuse to talk about it or admit it's there--even though talking about it and seeking help may actually keep them independent longer.
Yes. I wasn't patient today. I was frustrated...or more so scared. I worry that if my mom is rude to the caretakers...they'll be rude back to her. If I'm being honest--that's terrifying. Pray for patience for me and there going through this.
TO CARE GIVERS everywhere (paid or not): God bless you. Thank you for your patience taking care of our loved ones. Thank you for the times our family members loose their filter and their social graces. Thank you for the constant thankless work you provide giving them dignity during such a difficult time.
Vegas friends: If you want to find ways to get involved please Lou Ruvo Center For Brain Health. They have incredible resources along with neurologists leading the charge trying to find ways to SLOW the process of memory loss. But to do this they need more awareness! More education. More people willing to be in control groups for clinical trials.
Finally....She wanted to take this pic together after our live video ended when I dropped her back off. Some days she has a hard time lifting her head up--but even then--I love that she'll still lean her head against mine. #LifeWithDementia #CaringForCarol