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I am worried that my DH will not settle down in permanent care. He has his phone and calls every half hour. It was the same with his two previous respite stays


This is because with FTD they don’t forget and DH is also obsessive. Staff have advised me not to answer phone or visit for at least a week but I know this will not stop.


Has anybody experienced the person in care never settling in? I would appreciate advice

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My gosh, Panda

He is having a tough time which means that you’re having it rough too. I’m so sorry. Hope it gets better soon for both of you.
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DH has been transferred to the Mental Heath Unit. They are changing meds, redoing the memory and cognitive testing and so on just to triple check all his previous findings
He will not be coming home. He has settled down a lot His brother drove down from Canberra to see him. Seems to understand. Basically a fact finding mission. DH Now hates me. Says I put him there to get rid of him. Blah. Blah. Wants me out of his house. Wants his money. Wants a divorce. Brother has gone home ( didn’t bother to see me). I guess we will see. I am sure his family will have more to say
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Just a thought--make sure that the phone he has, has a number that will answer with an answering machine style recording that is your half of a typical conversation, so that every time it calls he thinks you have answered and are conversing (very generically). If it works so that he thinks you are answering, it could take some of the load. You can also occasionally pick it up yourself and have a short real conversion.
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PandabearAUS Aug 2019
The battery has run down on his phone but he was stealing phones from the staff who had to keep them hidden but somehow he would get them. It doesn’t matter now as he has been transferred to Adult Mental health ward where he can’t get access to the nurse station
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For the new posters, there is an article (AC - Aging Care posted a reply earlier) that lists acronyms. It would be helpful if AC had that article link at the top of every page as this comes up frequently. The link is:

https://www.agingcare.com/articles/common-caregiving-abbreviations-and-acronyms-435589.htm

Or when someone sets up a new profile, send a welcome email containing the link to the acronym article.

I find the reply function very irritating. Unless one checks replies it is often difficult to follow a conversation. It also opens up an opportunity for undesirable arguing, correcting and rudeness.
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Don't be afraid of the psych evaluations, Panda, my mom was sent for psych evaluations a few times. There they would find a med combo that would help her feel more comfortable. The meds were quite strong and each time my mom would become more comfortable. I now, often think that mom also had undiagnosed FTD in addition to Alzheimer's. She was completely unmanageable.

I know how hard this must be on you and your husband. Remember, most importantly, they will find a way to help him better cope, which is scary because of the strength of the meds and how much more he will sleep and relax. Also important to remember is that he would not want to be feeling this way either. Taking someone home is not a viable option.

My mom was eventually kicked out of memory care. She was on hospice at the time and they recommended a much smaller care home where the caregiver/resident ratio was much lower. And it was cheaper and would have been a better fit for her from the beginning.

Mom also had to have 24/7 caregivers, an additional cost, to keep her engaged and hopefully out of trouble.

Best wishes to you and hubby. Stay strong, kind of a emotional detachment, and have faith that the pros will be able to find a solution. Trust them.

If the facility will not let him return, do not take him home! Use the social workers to find another facility, maybe a care home?
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PandabearAUS Aug 2019
Husband is in Acute Observation ward The general opinion is he will be transferred to a specialised care home for high care patients for clinical residential rehabilitation services (community care units) provide medium- to long-term accommodation, clinical care for people with a serious mental illness and psychosocial disability.
35 residents only each with their own room and bathroom
It is a small government subsidised residential care unit Not sure at this stage if this will be a permanent placement or just rehab until a permanent placement can be made outside of the hospital system
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All I can say is it sounds like my Mom, except at the time she was in her 50s. Drugs or medical issues would effect her memory and she would be anxious and lonely. She called her best friend many times a day. At least that friend had no power to discharge her. The friend worked but had a great boss, so she would take off work, unpaid, and sit with my Mom.

Two things that did help. One was a guest book. Staff asked all visitors to sign it. & maybe leave a note, both when Mom was awake and if they found her sleeping...including date and time. This way family and friends could show that she had been visited, even though she thought she had been alone.

Have doctor order sedative as a Regular med, not a PRN. That way she won't be asked of she wants it now, but just told it's RX doc ordered. She can still refuse, but will probably get some doses.

Get her address book..hopefuly some friends are online. Ask them to send funny stories, pictures and jokes to read to your Mom. This way you can change the subject. She won't protest hearing from dear friends for very long..ignore her when she does. Remind her she is being impolite not listening when they took the time to write or send pictures. This worked well with my dad.

And yes, use silence setting. You might need to get a cheap 2 nd line for doctors or staff use to reach you...sleep and time to take care of life's chores is important.
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Please tell the staff at the Psych Hospital that he is not to have a phone. If you have a POA or Guardianship over him, you should be able to request that. They are enabling his torture of you. Unbelievable!

If they won’t comply, go over their heads!
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PandabearAUS Aug 2019
If they took his phone off him he would completely go bananas. Besides they are not allowed to. Infringement on his rights?
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My 102 year old mother broke her hip a month ago and had surgery. She is in rehab now,but not making great progress. She was living semi independently because she wouldn’t allow me to bring in more help. Now in rehab when I visit each day all I hear is that she is lonely and wants to go home. At the moment she is a two person assist, but that means nothing to her. She says that she needs no help. The rehab center social worker says if she chooses she can leave. Each day I have to explain to my mother that this is the best place for her and each day I leave with nerves frazzled. I have explained were she to go home that she would require 24/7 care and that she would be in financial ruin in six months. She doesn’t care. She has anxiety,but when offered meds refuses. She has burned through four roommates because of her constant screaming and crying. My mother has now figured out that she can make the decision to leave the rehab facility. She is hell bent on going home. I get that she wants to go home, but at what cost. She would be calling me night and day. If she had her way I would live with her. I know she would chase all the help away. I am after two years of caring for her 24/7 burnt out. My mother has no interest in meeting people or doing activities. Her days consist of yelling to the heavens for my father, watching tv, and humming. When I am there she says to me if I make her stay her death will be on my hands or your father wouldn’t make me stay here. It’s like this every day. Recently when she would start in I would get up and say I need to leave. Her tone changes and she starts yelling don’t leave me alone. I am her POA . I am considering resigning .
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PandabearAUS Aug 2019
She’s 102 and her death would be on your hands? You should remind her she is 102. Can’t believe she would be allowed to go home to her own For goodness sake don’t let her live with you
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Hang in there, Panda. We are all sending good thoughts your way. This has got to be so unnerving to you. I wish it could be easier for you. None of this is ever easy.
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Hi everyone

my DH is now in the Acute Observation ward of a major hospital. He is there as
an involuntary patient under the mental health act. He has completely snapped. His abuse is constant and security had to be called at one stage. I have been told that if it happens again restraints will be used, but still he has managed to talk staff into using their phone. He has called three times, each time threatening to kill me for putting him in a psych ward

doctors are waiting to transfer him to the adult psychiatric ward.
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Both of my parents never settled in. They hated both IL and AL. Nothing was ever good enough. They never made friends and never participated in any activities. I finally had to put my phone on silent during the evening and morning to deal with the 3am phone calls. Hang in there and continue to set healthy boundaries.
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Gerip1092 Aug 2019
My mom stopped using her cell (forgot numbers, even though they were programmed in), and she started asking the nurses to call me. I have my number & my 2 brothers posted on her wall. She would be all sweet to get them to call me & they she would get on the line with me & ask if I would take her home and when I said NO, she would get mean & cry... I could not deal with this while at work. I asked the nurses to stop calling for her unless it was an emergency. She would only have them call me, never my brothers. Mom would not remember when I brought it up to her. She may never settle it, but I know it way the right thing for her safety, care & for my sanity.... It seems selfish at first, but it is not... You deserve a life too, they have lived theirs, it is unfortunate how it turned out, but none of it is our fault... Getting them the best care possible is something we can control.
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Just a thought. Is it a cell phone? You can probably use parental controls on your account and shut it down at certain times? I have a few friends who have had to do that at times.
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TAKE AWAY THE PHONE .... DAAAA - anyone who has dementia at a certain degree & if he can't remember when he last phoned then that's the time to do it - a phone is not a right but a previledge for those who can deal with it because would you give a cell phone to a 3 year old? - even get a plan that has severely limited usage so that hours are restricted & people are limited

I had to take away my mom's when she called her lawyer 9 times on a weekend BECAUSE HER LAWYER ASKED ME TO DO SO - it also cost  me over $250.00 for the lawyer's time!

Sometimes you have to suck it up & do the hard thing that you feel is not fair but IF LIFE WAS REALLY FAIR THERE WOULD BE NO DEMENTIA ... right? - you may be surprised how soon he forgets about it - I used the pretense that it was malfunctioning & needed to be repair - mom only asked about it once about 10 days after it was taken away
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PandabearAUS Aug 2019
Staff are not allowed to take away the phone. It’s an infringement of his rights. I know. Unbelievable
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My wife is her 88y.o. mother's legal guardian and caregiver. My MIL has lived with us for over a year now, but she still insists that she is going to be "moving out soon" (her doctor says she should not be living alone), and that "God has put it on her heart" that she will soon get her old house back, which was sold over 5 years ago. She has MCI, and scored extremely poorly on the mini mental exam twice (once given by her doctor, and once by a neurologist), and has already fallen prey to a scammer who bilked her out of tens of thousands of dollars (so she also has a conservator), but she insists that she can take care of herself, and she calls her friends and complains regularly (she complains to my wife and to me as well, but we just let the "nonsense" complaints - the ones with no legitimacy - go in one ear and out the other since it's useless to argue with a dementia patient). She was recently diagnosed with a UTI, which seems to have exacerbated her condition, and is possibly due to her refusal to take a shower as often as she should. Waiting to see if the antibiotic treatments to get rid of the UTI help her to be more "with it" than she has been lately...
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Quite a few patients in facility care will ask "when do I go home?" It is sad for them to wonder "what has happened to me?" Or if their brain is NOT functioning properly (yes, his is as he has FTD), they may not ask that last question. Good luck and prayers sent to you.
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Do what they suggest.
It might not stop but he needs to become reliant upon his caregivers.
Close clingy contact is a phase in dementia. Could happen at home too. They are scared, insecure and unadmittedly want guidance. You or hopefully the new caregivers are a security blanket so to speak.

All predicted behaviors in a patient with dementia get thrown out the window. Nobody can "know" what will happen because the dementia changes our loved ones behaviors. Their "Normal" is going.

Give him time. Let the phone ring or shut it down.
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I’m sure it’s frustrating. Something I notice on here is how people second guess the professionals taking care of their loved one lol.
l’d guess you carefully selected the facility. I’d guess you talked to them about the philosophy of the care they give. I’d guess you felt they were competent to care for him? Yet you don’t do what they tell you to do. You kind of are shooting yourself in the foot aren’t you? It’s hard to relinquish care but you need to accept you did your job finding a good place for him, now listen and let them care for him, they know more about how to do it than a lay person. You provide what you do best, your love and affection and let them provide what they do best, the skilled nursing he needs.
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I had the same problem I just screened my mother in laws calls, it was for my sanity.
As long as you answer the calls the person doesn’t have to settle in, just take one call a day. If they get upset tell them you have to run will talk to them tomorrow.
You are part of the problem when you answer all the calls they don’t have to settle in because you “are rescuing them”.
Why did they leave the other facilities, do they think you will take them out if this placement??????
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My mom is in the milder stages of dementia but when she had to move to a new facility she called me every single day asking what would happened to her furniture. (just a desk, loveseat & end table) It was exhausting answering the same questions every day for a month. Then after the move she refused to hang pictures or do anything to her room to personalize it. Its been a year and she still feels out of place and has not settled in. I don't think she ever will. She doesn't call me now, I think the phone numbers confuse her. If she did start to call me repeatedly again I would have a terrible time not answering the phone, so I can totally understand the pain you are going through.
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PandaBear, do you have *anyone* with you to support you while you and DH go through this?

It's horrific, I don't think you can (or anyone could) "manage" this process, and I hate to think of you trying to deal with this alone. It's about one or two in the morning, isn't it? I hope you are getting some rest, if not actual sleep.
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You may have improved luck if you drop the use of caps, e.g. LO, DH and FTD). Not everyone has the familiarity you seem to require. Spell it out. Good luck.
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NYDaughterInLaw Aug 2019
If you don't understand the acronyms (FTD=Frontotemporal Dementia) then you're probably not the right person to comment.

LO=loved one

Learning to read between the lines, and reading the other posts, will help you become familiar with the abbreviations. Also, people on this forum are very kind and all you have to do is ask nicely what does XYZ abbreviation mean.

Good luck, Condor!!!
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As with FTD his behaviour is always going to be repetitive, I suggest you take the advice of the staff at the residence and become unavailable - they are willing to deal with the results of that. As long as you answer the calling will continue the only way to stop it is to remove phone or you stop answering. He will never settle anywhere when he thinks he can get hold of you and change things - which he has managed to do before.
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Dear Panda Bear, my heart goes out to you. our mother has ALZ, coupled with obsessive compulsive personality disorder. After an injury, we finally made what felt like the most impossible decision in the world, to place her in memory care. We had to trick her. I still don't know how we got through it. But to buy time she went to rehab for almost three weeks, and the calls were incessant, at work, at home. And they were filled with bile, anger and hate. Frankly, I didn't think I'd live through it. But I decided, as much as it hurt, to turn my phone off, turn off my answering machine at home (yes I had a land line). I even had to stuff pillows into the cabinet where the phone was, so I wouldn't hear the "beep" of a new message. Once in memory care, the attendants were masterful, and did not allow her access to a phone. They constantly made up excuses which she seemed to buy. But because she was violent and hateful, we stayed away for a full two months. Our first visit after that was terrible. She'd claw and grab at us, begging to go home, and we'd leave there as emotional wrecks. Six months later she has settled in. I never thought she'd settle in. Each person is different, and I'll bet you feel like life is moving in slow motion. But I have a feeling he will settle in. We still get what we call the trinity of questions: Where Am I? When Am I going Home? Why am I here? But now we've developed the art of deflection. That was also a challenge for us. No one could "tell" us how to do that. But you learn by jumping right into the fire. Try to ease his phone away. Or get the attendants to help you with this. That's part of what they are supposed to do. It's not cruel. It's necessity-for your sanity. I've simplified what it's like. It can feel like torture for you, without a doubt. You love your special person, even though he may not know that anymore. Stay the course, and don't vary. He's better off now where he is, and frankly, so are you. Try to venture out a little bit, and get some fresh air and KNOW that you have done the right thing. Peace and hugs to you.
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I would appreciate it if questions and answers do not contain abbreviations. Some of us are new to the forum or do not have the experience of others.

Thank you very much!
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PaulaO Aug 2019
I needed one, too! I searched and searched this forum website and found a list of "Common Abbreviations and Acronyms" by Kim Barnett. I tried unsuccessfully to post it here, but I found it again by "googling" a search engine for the title and author, and I refer to it often. And now I know FTD is frontotemporal dementia.
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Wwith FTD this may continue to be a very difficult journey. The husband of a friend and extended family member also lived with FTD and it was an extremely difficult journey due to similar behavior-- a couple of placements and hospitalization before a suitable facility had an opening. Only in facilities for a couple years, then mercifully died at age 72 after telling wife he "couldn't do this anymore." I tear up thinking of what she went through with him while managing his care. In comparison, my mom's vascular dementia is a walk in the park. Hugs to you. We are here for you.
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He had a complete meltdown this afternoon trying to break the doors down and staff were frightened. He has been taken the nearest public hospital with paramedics and police escort in case he becomes violent in the ambulance for a psych evaluation
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ABoston Aug 2019
Oh no I’m so sorry! This must be so difficult. I’m hoping they may be able to give him some type of medication that will enable him to remain calm. Wishing you good luck!
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I truly believe in time, things will improve! I agree to stop taking all calls. Narrow it down to one each evening, eventually he may participate more in daily going ons and then look forward to speaking with you at night. I'd start now to get a schedule with this. So sorry your going through this! Being a caregiver, is such a constant roller coaster of emotions, especially when parent is very ill. I question myself and best interest decisions, All the time! We just love our family and want the best for them. My mom's mobility worsens each day and I may be faced with same task. The safety always comes first. Yes, he will adjust in time, but the first month, as difficult as it is, I'd limit visits to couple times weekly and on same days, so he will get use to when to expect you. Best of luck🍀🍀🍀 & keep us updated!!😊💝
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After 3 1/2 years in memory care, my near 96 year old mom still says “take me home.”

Some will say they’re longing for their childhood home, but this is not the case with her - she knows her address and used to draw a map to get there - recently she said she just wanted to be in her family room so she could read and watch TV

Yes, it breaks my heart - but she’s immobile and often is a 2 person assist - there’s no way I could do it alone at home which isn’t fit for a wide wheelchair

dementia is a long tiring journey for everyone - I tell myself all the time - buck up, it could be worse
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NeedHelpWithMom Aug 2019
There is no way you could handle that by yourself. You’re right. Whew! Caregivers at the facilities have a tough job.
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Stop answering his calls. He no longer uses the phone properly and the battery will run out sooner than later. In the event of a real emergency, the residence will call you.
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I’m sorry, Panda. I wish it was easier for you and your husband to adjust to this. How are you doing? Are you satisfied with the care? If you know the care is good then try to focus on that. How did it go for you when he first got there? I know that you were concerned about that.

Longest mom was away was three weeks in skilled nursing rehab in a NH.

I have to say, although the rehab part was fine, the other part, living area left much to be desired, crappy actually, where they didn’t even administer mom’s meds correctly, along with other issues. But that’s my story.

Your husband’s facility is most likely a much better place. No place is perfect but as long as it’s safe and comfortable.

Initially mom was fine with being there and was quite agreeable because honestly, who wouldn’t want to get out of that depressing place.

Only a couple of times did she say to me, “I miss home. I wish that I could leave here.” It made me sad and I empathized with her. I told her, “Mom, I know you want to be back home and I understand that but you have to get better first.” She understood what I was saying to her.

That isn’t the case for those in long term care. Then I would have had to have a different strategy. I felt it was important to acknowledge her feelings instead of being patronizing.

I truly did feel badly for her as I knew full well that she was not in any way trying to make me feel guilty about her being in there.

It’s can be tough to adjust to new surroundings. Give him some time to wrap his head around it. It will gradually sink in. This is hard for him and just as hard for you.

Mom has pulled the ‘guilt trip’ thing before, she has, most moms have, but this wasn’t one of them while at the NH. I could hear in the tone of her voice that she truly missed home. I heard from the entire staff how hard she was working in rehab. No easy feat for a 93 year old!

I wish I had the perfect answer for you. I wish you weren’t faced with this situation at all but I do feel he will in time adjust. He won’t have any other choice.
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