Earlier in the year, I was interviewed on Huffington Post for a story on “Parents Caring for Parents with Dementia.” One of the other guests, Kathy Ritchie @MyDementedMom shared some very explicit stories of her caregiving journey. Her Mom has Frontotemporal degeneration (FTD) which has its own unique characteristics and challenges. I realized as she spoke that my care giving story was mild compared to some of her experiences. However, I’m starting to dance around the circle of the fire.
I’ve been visiting my Mom and working to use all the resources available to keep Mom “kempt.” I had been doing Mom’s laundry — she would not allow anyone else to take it. She could do the laundry if reminded and done in parallel, but we rarely found the machine free so I would bring home the clothes and sheets and wash them. When my brother was here he added in laundry service hoping that will help keep clean sheets on my Mom’s bed and clean clothes on her back. These are things that Assisted Living communities offer as services, but the resident has to be willing to allow help. Even though we have asked for the assistance, at some point the staff just gives up. As my Mom’s disease progresses along with the mood medication — she’s been allowing others to help in small ways. I was thinking it was working, but realized the personal aide we hired in the evenings has been doing most of the laundry loads.
I will try to guide my Mom’s through showers and I schedule Mom’s hair appointments. The hair dresser my Mom has seen for years will go get my Mom and bring her to the beauty shop. Some days however, my Mom just refuses to go and I only know this because I show up and her hair has not been done. Most of the things in place are beyond the support for “activities of daily living” the Assisted Living community supports. It’s reminding me that our decision to move Mom to a community dedicated to memory care is the right choice.
When I arrive today, my Mom doesn’t have on any socks. When we go to her apartment, I find clothes and sheets in little piles on the bedroom floor. The sheets have been there for over a week. I made the choice to leave the sheets in a pile to see what would happen if I didn’t collect and wash them. I found out nothing would happen. Congrats, right?
My Mom and I collect all her clothes and go to the laundry room in hopes that the washer is working today and not in use. Luckily, it’s free. I start to pull out the items I found and realize that a few of her pants are soiled to the level of being disposed of … but she insists I wash them.
My heart breaks. My Mom has been hiding these dirty clothes. She knows something is wrong and was very anxious when I started to look at the clothes. She asks me to just wash them. I ask her to check the apartment one last time so I could clean out the clothes before putting them in the wash on the sanitize setting.
My guilt on the decision to move Mom is diminishing day by day. On the surface, it seems she is being cared for, but the dirty, difficult work comes down to me to manage. I’m thankful my Mom has the means to afford the community. However, there are still large gaps in the care we all expect. I move through waves of resentment and relief that my Mom is in this community. I want to be a loving daughter, but when faced with the dirty work of the caregiving job, I grow angry. Not with my Mom, but the reality that most of the communities are not fulfilling the pledge they made to their residents. I wonder what happens to all those individuals without a trusted and caring loved one to continue to advocate and support them. Saddened.
Amen to all you said, Kay. What is really sad and, IMO, an absolute outrage, is the enormous cost of memory care assisted living – and each extra thing adds an additional charge – compared to the return our loved ones are getting. It reminds me that for-profit companies create these living spaces with the bottom line for their executives and their shareholders as the priority.
That’s the sad reality and anyone considering assisted living or nursing facilities needs to be aware that the health and well-being of our loved ones – despite what the mission statement of the company may say – is secondary to making and maintaining a very hefty bottom line.
And, to ensure the best care, we must take on the responsibility of filling in a very huge gap in care. Like you, I am sad for those residents who don’t have anyone who can or will do that for them. I can’t fix it and neither can you, but I hate it.
Hi Kay, I just read your post and find your words so true. For all of us with a loved one with dementia, it is so hard to know the right things to do and deal with the anger of the ones being paid who don’t caretake like a family member would. I am thankful I have your blog to read as my husband and I are in the planning stages to move in with his 91 year old mother and be the caretakers. She is further along in her Alzheimer’s than your mother – we’ve been trying to keep her in her home. We can no longer afford the live-in caretaker and we have to make this change by end of the year. As I wind down with my blog on My Neighbor, Miss D, I hope to start a new blog with this venture and join the ranks of all of you caring for a family member with dementia.
I can’t unsee my mother-in-law naked, when I had to help her dress and undress after her abdominal surgery. *Shudder*.
I try to find the funny and wonder how a comedy troop could really do a great job of helping us manage through these interactions. Saturday Night Live has a “short term memory loss” skit (Tom Hanks) who would ask “Hey, how’d this food get in my mouth?”
I giggled at your “Shudder” – thank you for sharing. ; >
My husband suffers from dementia secondary to multiple sclerosis. The things you can’t unseen are hardest of all. You have to find the humor or go stark raving mad.