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Younger-Onset AD or Other Dementia
Should I move my Sister
Welcome to out world Catladyrose. I'm so glad you found our site.
Who has the DPOA? Is the SO the Steve you mention?
What has her current residence done to get her involved in activities? How will that differ from in the new place?
It is my sister Carol that has the EOAD and Steve is her SO. The facility does have daily activities.
I am planning another trip to see her the end of January and plan to observe her from a distance since she seems to react to my presence. The facility is telling me one thing and she is telling me another. I agree, I am not at all sure that moving her to another facility will make her happier but I do know that she will have more family visiting with her here in PA. Perhaps there is no place on earth that will give her any peace at this juncture.
Going back and observing is brilliant.
Please do not count family visits as a big reason. The reality is that they may not visit much at all. How much attention have they shown her in the past couple of years? Calls? Cards? Visits?
That could be an indicator.
Something more important to consider is how much time you are going to be with her. While you are considering take a hard look for a facility that you feel is a good match. That in itself is not easy. Keep in mind you are looking for training not food or activities.
What do you mean by "training" versus food or activities? Some level of competence by the staff? How does a person assess that?
I will wager that most people who work in facilities for PWD have no training that is PWD specific. If you ask a facility about staff training they will usually answer all are CNA certified. They may say that they have only experienced staff or they may tell you they have their own training. If you ask them is they follow Teepa Snow or Naomi Feil or Allen Power and you get a blank look as a response leave immediately. Ask to see their program material as well as their contract.
A trained staff is more expensive and a lovely facility with an activity schedule, no bad smell and the meal they invite you to is sufficient to win us over.
The Hearth and Abes Garden are two of the leaders in the field of dementia care. Here is a bit to read;
Two year ago I spent hours calling facilities and asking them what the initial and ongoing training was. It was frightening. Give it a try.
I personally think it is up to us consumers to demand training.
Hope this helped explain what I meant.
The sister is communicating and you are understanding - that is my guess. Her words will not be accurate to specific happenings but the emotion is authentic and accurate.
Maybe something like, turning off the volume on a movie, you can tell by body language and expression what is meant.
Trying to get someone with ALZ to speak like someone without it - what most people do instead of what they are expressing.
My Dad for instance saw me crying and said to my mother, "Someone was mean to her on the playground." It was so accurate it melted my heart but my mother thought it was gibberish.
My guess is she is conveying not trusting the changing shifts of people she does not know and that her room lacks a sense of belonging to her, familiar comforts she misses.
Your gut is telling you and I admire you for showing so much concern and reaching out here for ideas. Her man might be able to give you some insights, intentionally or not. Lots of people lose interest in visiting, she is dependent on him showing up for how long?
You are a hero. Convey to her your love for her with your eyes and voice.
Plenty of people have done better in different environment. You are seeing things clearly in my opinion.
love and courage
Perhaps have a family meeting and get everyone in one place to share and discuss what would be best for your sis. Allowing everyone to share what type and time they would be willing to help with. Is her hubby even considering such a move?
Your on the right path and all of us with this horrible disease need advocates like you to assist and help us. Contact your local ALZ chapter for information and expertice. There is also a 24/7 toll free call number (1-800-272-3900) that is staffed with trained psychologists, etc.
Please keep us posted. How did your second visit go?