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Should I move my Sister
Posted: Tuesday, January 8, 2019 7:29 PM
Joined: 1/8/2019
Posts: 2

My younger sister was diagnosed with EOAD when she was 64 although I think it had been going on for a few years prior to that (she is 69 now).  She actually stopped driving since the doctor suggested it to her.  My problem is that she has been living in Florida with her significant other for 15 years.  She is now in a memory care facility there.  I would say she is at stage 5/6.  My communications with her over the phone are always sad and her wanting to get out of there.  I live in Pennsylvania. I decided to go visit her a few weeks ago and spent several days immersed in her life, eating every meal together and even sleeping in her room.  Much of the time she spent crying and wanting to die.  It broke my heart.  On top of that, she is also having delusions that the staff is hitting her and does not like her....I don't think that is the case from what I could see.  The staff tells me that generally she is in good spirits and that they do not see her crying or carrying on.  I am totally frustrated trying to figure out whether to move her to another facility here in PA or whether she will do the same when she gets here.  I might add that she has no other family in Florida so it is only Steve visiting her perhaps twice per week.  If I move her here she will have more family visiting with her.  I really think she feels lonely and abandoned.  I know moving her would be disruptive for a while however I believe in the long run she would be happier with family making short visits on a daily basis.  Anyone experiencing this situation? Is it just one of the phases and it will eventually stop and she will settle in.  She has been there almost 4 months already.  She was seen recently by the nurse practioner/psycologist who is adjusting her thyroid medication. She said that could be a factor in her mood.   She does not want to change her anti-depression meds at this time.  I keep hearing it is "the disease" speaking.  I just don't know what to do.
Mimi S.
Posted: Tuesday, January 8, 2019 8:10 PM
Joined: 11/29/2011
Posts: 7035

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? 

Posted: Wednesday, January 9, 2019 7:47 AM
Joined: 1/8/2019
Posts: 2

Hi Mimi,

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.  

Posted: Tuesday, February 5, 2019 7:25 PM
Joined: 12/4/2011
Posts: 18475

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.

Posted: Tuesday, February 5, 2019 10:58 PM
Joined: 8/22/2017
Posts: 423

To jkoc

What do you mean by "training" versus food or activities?  Some level of competence by the staff?  How does a person assess that?

Posted: Wednesday, February 6, 2019 9:33 PM
Joined: 12/4/2011
Posts: 18475

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.

Posted: Friday, February 8, 2019 6:13 AM
Joined: 9/12/2013
Posts: 3556

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

Posted: Tuesday, February 12, 2019 11:21 PM
Joined: 1/11/2019
Posts: 70

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? 


Posted: Tuesday, February 26, 2019 11:59 AM
Joined: 2/22/2019
Posts: 1

I have my sister in a great nursing facility close by. She sounds similar to your sister. At least close by, I can keep tabs on the facility and her. They were going to send her 5 hrs away in Los Angeles and I said no. I looked up that facility and found complaints against it. I’m glad she’s close by. In our case, it makes a difference.
Posted: Tuesday, February 26, 2019 2:23 PM
Joined: 12/4/2011
Posts: 18475

wonder what she decided