I moved my mom, who has PPA, into a memory care facility near me. This meant moving her across the country, with a whole lotta change. She had lived on her own for the last decade with in-home care for the last 1.5 years. She has regressed to speaking in Russian (our primary language) exclusively, not understanding that most of the people she is speaking to do not understand her. Due to the communication issues, she gets easily agitated and has now become aggressive with staff and residents, per the facility. They call me almost daily to try to help intervene and calm her down (since I can't physically go inside during COVID).

They have a 0 tolerance policy for aggression towards other residents so they have now sent her to the ER twice in the last 2 months to check for infections and do a psych eval. Each time I've taken her and each time the doctors apologized to me and acted confused about why we were there. There were no infections, no suggestions and no solutions. They cannot discharge her into a psych ward without medical professionals declaring that she is a harm to herself or others, but once she is out of the facility, she's as calm as a cucumber and has no recollection of raising her hands at anyone.

I'm worried that they will discharge her, and if they do, I don't know where she would go. I am single, live alone in a 1BR apt that would not be conducive for her to move in safely, work full time (remotely now), and am now really struggling with my own mental health/depression/stress/anxiety caused by this entire situation. I feel so selfish but I would have to find a new home, quit my job, and likely cut off my entire social life if I move her in with me. She is young - physically active - but her PPA has really progressed and she requires nearly 24 hour supervision now. Not to mention that the staff at the facility tell me that she talks sh** about me to them now.

We are both new to Illinois - I have lived here just under a year & just moved her at the end of July. Any help or advice, local or national, would be much appreciated.

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I had to look up PPA and according to what I read, it's a specific type of a more general disease called frontotemporal dementia. FTD dementia is NOT something YOU can deal with at home, so you're not 'selfish' for not wanting to move her in with are wise. Your mom needs the right medication(s), obviously, as well as a Memory Care or Skilled Nursing Facility that is experienced with FTD dementia b/c it presents quite differently than traditional dementia and/or Alzheimer's. The behaviors that may accompany FTD dementia are off the charts........and need to be handled by care givers experienced with the disorder! We have a man who posts here sometimes who cared for his wife with this type of dementia for years, and his stories would turn your hair white.

Here is a link to more info on the subject of FTD dementia & aphasia:

Wishing you all the best of luck finding the right meds and/or facility that is best for your mom. Sending you a hug and a prayer as well.
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alinachka123 Oct 2020
Thank you for sharing, lealonnie1! PPA stands for Primary Progressive Apashia - it is so normal for me but I forget that it's a rare form of dementia and not as commonly known. With PPA, language/communication is the first to go, followed by memory, but many of her symptoms/behaviors could be lumped under general FTD dementia or even Alzheimer's in some cases. The brain is a mysterious thing...

I appreciate the link you shared - will read through that tonight.

There are no beds open at a geri-psych facility as of tonight, so after a lot of back and forth and ANOTHER short stint at the local ER for blood work, she's back at MC until a room opens up elsewhere. I am only 31 but feel like I've aged more than Obama did in his 8 years in office just in the last year.
AlvaDeer & NeedHelpWithMom, I appreciate your positivity. This is all really new to me -- seems like my mom has regressed years since March (haven't we all?).

AlvaDeer - are you saying that the psych facility will try to place my mom even though she is in MC currently? She is only 2 months in there and the first time she's living among other people in decades.

I am hopeful that they will find the right dosage/combo of meds for her but also cognizant that it will take time and be expensive. Current update: they have not been able to find any available beds yet so are sending her to the local ER (again) to hold her until they find an empty room :( The last 2 times I dropped everything and took her to the ER myself but I just... can't. I can't right now.
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NeedHelpWithMom Sep 2020
I’m so sorry that you are struggling with this. I wish I had an answer for you. It’s a waiting game for now. Yes, these are tough times. Caregiving is a challenge and now there are more complications. It’s heartbreaking.

I know that you want to help as much as you can but there is only so much that you can do. They will notify you as to the next step. I certainly hope she receives the care she needs soon.

Don’t push yourself any harder than you can. You are equally important to your mom. You need to look after yourself too.

Alva is extremely knowledgeable and she can fill you in on many things.

Take care. Keep us posted on her progress.
Whatever you do--DON'T TAKE HER HOME WITH YOU!

Sounds like moving her to the psych facility is best. She probably needs some calming meds that will decrease the anxiety.

2020 has been THE WORST year in history for moving people into NH's, as they are so isolated and so many are so confused and depressed.

My only experience with a psych ward placement was with a 'terrible teen' and it was, quite literally a life saver.
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Alina, see my answer under your latest update on this post.
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Thank you for your response NeedHelpWithMom! This morning the facility called me to tell me that she shoved another resident this morning and given her recent outbursts and multiple hospital sends now, they are discharging her to a psych ward. I am currently waiting to hear which location has an open bed. I am trying to be hopeful that this will be good for her to hopefully get her meds in control and monitor 24/7. Do you have any experience with inpatient psychiatric hospitalization? We had an appointment with a PPA specialist on Monday but now will not be able to attend and it is unlikely that I will even be able to visit her during this time.
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AlvaDeer Sep 2020
I am relieved to hear you have her going now to a psych ward. Be certain that they know they have to do the discharge planning to a place that will accept your Mom. The truth is that she is going likely to require medication cocktails until one is found that works so as not to drug her into oblivion but to make her manageable. DO NOT under any circumstances accept your Mom into your care. If they understand that is NOT an option they will continue, difficult as it is, to find placement. In your Mom's case this won't be easy. The hospitalization will likely focus on finding the drugs that work. It is always unique to case and it is anything but an exact science and there will be no good or perfect answers often enough. She is in the RIGHT PLACE now because they will observe her behavior.
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You are doing all that should be expected of you. You saw where your mom could no longer live safely alone and placed her in capable hands.

I hope that she will come to terms with her living arrangements and things settle down soon.

Has she had aggressive outbursts in the past or is this a relatively recent occurrence?

Has she taken any medication for her aggressive behavior? Have you asked if there any medication that could help control the aggression and calm her anxiety?

Don’t overlook speaking to someone about your feelings. You are equally as important.

I’m sorry that you are struggling with this situation. I am glad that you realize she would not be better off with you.

You don’t have the room in your apartment. You realize that you cannot stop working to care for her.

So you are ahead of the game by knowing that if you tried to care for her and stopped working that you would live to regret it.

Is there a social worker that you can speak to? What is their policy on working with the family in order to keep her as a resident?
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