This is a different kind of blog, so I ask your indulgence. As you may know, writing is an outlet for me.

Often, it is my creative side but sometimes it’s cathartic. On March 22, my step-mom (whom I have called Mom since I was 8) died after a long battle with Alzheimer’s disease. Many of my colleagues have met her, as she was also a nurse and often accompanied me to conferences.

When I did a presentation, as others politely clapped when I was done, she was the one in the back who would stand up, loudly applauding and yelling “Yea! That’s my daughter!” Embarrassing and joyful at the same time.

To say we were close is an understatement. She was the maid-of-honor at my wedding. We talked daily. When she had her bilateral mastectomy, I was there for her, and when I had mine, she was there for me. We were always there for each other. Mom was a giving, caring, funny, vivacious woman. She was loving up to almost the end. She was amazing. 

All of you know how Alzheimer’s ravages a person. It changes their personality, robs them of memories, and eventually robs them of knowing their loved ones. It’s a horrible, hellish disease that I pray we will eventually come up with a cure for.

But until we do, we have to do a better job of caring for those who have it. Mom selected the assisted living place she wanted to go to before her dementia got to a point where she would not be able to make a decision. I will say that, unfortunately, Mom equated luxury with care.  

So, she selected a very expensive ALF in southwest Florida. I did ask the director of marketing during the tour about dementia training in the memory care unit in case mom wound up in there. (Funny, he didn’t show us the unit during the tour. I cannot remember the “why.” Maybe Mom didn’t want to see it).  He assured me they all had Alzheimer’s and dementia care training (this is pre-COVID by the way).

Things went well for a while as Mom moved in with a friend who had Parkinson’s disease. She cared for him physically (a nurse never forgets!) and he helped her mentally. Sadly, in the summer of 2021, the friend died of COVID-19 complications and Mom was moved into her high-expense, fancy memory care AL. 

I noticed pretty much right away that the staff didn’t seem to comprehend caring for those with dementia. (I could only see mom on weekends because of working fulltime and the facility being over an hour away from me.) However, I am just her healthcare POA. Her lawyer was her financial POA and said we could not move her as Mom selected this place while she still had decision-making capacity. So, we hired a care manager for her and a private duty companion who IS dementia care certified for 30 hours a week. (God bless them, by the way).

Here’s the thing that has me boiling, if Mom did not have the finances she had to support that private care on top of this AL, I cannot imagine how bad things would have gotten sooner. See, as it turns out, yes, the staff had dementia training, but the Florida state minimum requirement is 2 hours. I am a certified dementia care practitioner. I can spend those 2 hours just teaching how to not trigger behaviors. 

How in the world can you call yourself a memory care AL taking care of individuals with Alzheimer’s disease with just 2 hours of training? Oh, and guess what? Agency staff don’t have to have any. 

So, when the behaviors started, workers just made them worse. They threatened to kick her out unless she had round-the-clock private duty care because Mom’s behaviors were scaring the staff — the same staff who were triggering them to start with. I mean, what the heck?!

In long-term care we have standards of Alzheimer’s and dementia training. Why does that get to be different in AL? Now, don’t get me wrong. I know there are some great memory care ALs out there, like the one we finally got Mom switched to near the end of her life where every staff member was Teepa Snow-trained and certified. It definitely wasn’t fancy, but the staff were amazing. 

It is dangerous and downright misleading to say you are a memory care unit with only minimal training. We need to change this.

This has to change. Who is with me?

Just keeping it real,

Nurse Jackie

The Real Nurse Jackie is written by Jacqueline Vance, RNC, CDONA/LTC, Senior Director of Clinical Innovation and Education for Mission Health Communities, LLC and an APEX Award of Excellence winner for Blog Writing. Vance is a real-life long-term care nurse. A nationally respected nurse educator and past national LTC Nurse Administrator of the Year, she also is an accomplished stand-up comedienne. The opinions supplied here are her own and do not necessarily reflect those of her employer or her professional affiliates.

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