My head has been spinning this last week.
I've been waiting to move my mom out of the facility where she currently lives to one that I had thoroughly checked out.
I did my homework where nursing homes are concerned. My husband and I have check lists, lists that we used to prioritized our choices for Mom's final living quarters. It was a grueling process while caring for my mom at home.
Who knows if I am the reason that mom isn't getting into facilities that we've been waiting for over a year and a half. Every time I call, I'm told the same thing, "no beds." Even when I've walked through facilities and saw empty beds, I was still told, "Sorry, no beds."
Last week, one of the facilities that we had been waiting on, set up a site visit to see my mom. Mom was out with me when the nursing home arrived to "see" her. Mom's day nurse told me that she gave my mom a good report. She also told the nurse who arrived that I am very involved with mom's care, that I come and help out every day. Mom's regular nurses like when I come because they have more time to help other residents. One would think this was a good thing, family that pitched in, right?
I called the facility after they had "seen" my mom. The admin person was nasty, her tone changed when she heard it was me and then said, "We don't have an appropriate bed."
When I had called, I didn't know they had not seen my mother; I would have asked how they had made their decision. Mom's nurse told me that my mom was out with me when the nurse arrived.
Not sure if I'm being paranoid or if my suspicions are true; nursing homes don't want family snooping around and causing their ratings to go down because of reported violations.
Makes me start to wonder about the damn rating system. Have nursing facilities figured out how to circumvent the rating system by refusing potential residents who have involved families? Involved families are encouraged to report neglect and abuse as indicated by signs posted around the home. How else can it stop if we don't tell someone what we see?
I did think that it's because my mom has LBD and it's a difficult illness to manage. Even the nursing facility that is supposedly very good with Lewy Bodies Dementia, keeps telling me that mom needs to wait 6 more months. I've been waiting 6 more months for a year and a half.
Personally, I've come to the conclusion, nursing facilities with higher ratings on paper, may not be the best choice after all. I can see the loop hole that the "so called good homes" use, discrimination that can not be proven.
I don't want my mom in a home where families are not welcomed.
Today, I look at my mom's facility with new eyes. Although the place where my mom lives has it's downfalls, they didn't discriminate against my mom and me. The facility is willing to work with me to make life better for all the residents. Albeit slow progress, I do see a light at the end of this long dark Care Giver road that I've been traveling for so many years.
If I had to do the exercise over again, to find a home for mom, I would not have waited as long as I did. I would have talked to my mom years ago when she was more mentally with it and explain to her that she needed to move in to an assisted living facility.
I have discovered that it's easier to get someone placed in a facility if they are not crazy with Lewy. Lewy seems to be a big skull and cross bones, a label that scares the be-jesus out of facilities that know the face of this illness.
Something has to be done to help Lewy Bodies sufferers and their primary Care Givers. The system isn't working. Could I be right? Are nursing homes secretly discriminating against potential residents because of their illness and or their Care Givers?