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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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As you said, this is obsessive compulsive behavior as much as anything else. As long as the calling gets a response it will likely be done at all hours. I would do as the staff requests. This is the only hope of some settlement into the new situation. DH isn't in control of his behavior and reactions. You will have to be. It will hurt, but I cannot see another way. Wishing you luck and hoping you will update us.
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My mother had anxiety episodes, would call relentlessly or leave upsetting messages. Maybe ask Dr for a medication that wud help the OCD behavior (& assist ur hubby with adapting there). I'm sure the Dr has ideas. Otherwise, gotta send the calls directly to voicemail, as I did. At nite, I turned my phone completely off. Hope things get better
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Yes. He has started calling son. Residence is taking phone away
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Sorry. He would not hand phone over and residential facility is not allowed to just take it. Waiting for the battery to run down
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I'm far from thinking this is going to help, Panda, but you're bringing to my mind Laura Linney's character in 'Love, Actually' taking endless calls from her brother to the serious detriment of her work and social life :(

Do you mind if I think it through in type?

What are you worried about?

The impact on him, what he is experiencing in his head when he makes these calls?

Does answering or not answering make any difference to HIS wellbeing?

What are you hoping will happen - that he will form bonds with the people in his care home and loosen those he has with you and his son? How would you feel about that if it did happen?

I'm sorry, I'm just firing questions at you. But it seems improbable that you can alter *his* behaviour, so that only leaves your own. I'm hoping that thinking through what you can realistically do/hope for and what you can't do however much you'd like to will help you decide how to respond.

What discussions have you had with the people taking charge, and how much confidence do you have in them?
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Lyecats Aug 2019
What an excellent response! I have a similar situation with my mom, in that she doesn't settle in, and I jump through too many hoops trying to be the perfect child (or maybe perfect co-dependent) to make her happy. She doesn't have dementia but her degenerative brain disease makes her unable to walk or even really move. However she manipulates those who seem to like her into chasing her bunny trails of needs. She finds fault with everything and yet excuses herself from being held accountable. I'm tired and not liking how I feel about her these days.
after a stint in the hospital from a fall I was told she could no longer live in an ALF so she was placed in a skilled nursing facility. This one I found through referral is nice, smells very clean with lots of staff and therapies. In any group there are always personalities that aren't going to gel and it takes time to understand a patient. So I think its going well. I'm there every other day it's close to my home and so much easier for me to drop in for a visit. After only 6 weeks of being there she just told me she wants me to find another nursing home for her to go to.
Just yesterday I decided to let go the leash and let her make a mess of things all by herself by engaging others who have no clue what they or she is doing. She will eventually alienate people - but that is her MO. I don't need the constant stress she brings.
Thanks for the writing out loud the steps to think through. Glad I read this thread.
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This isn't something I've dealt with personally, but from observing the people my mother lived with at the nursing home I know that many of them never "settled in". The thing is, I don't think it was possible for those people to be settled anywhere, they were lost and seeking a world that was a creation of their broken minds that didn't exist in the real world. Sometimes you have to be satisfied with fleeting moments of happiness, or at least periods of stability.
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I have to agree, don't answer the phone. If there is an emergency, the home will call you. Being a helicopter caregiver is not the answer. I was going to recommend taking the phone away, see that this is in process. He may never settle in, you just may have to accept this.
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NeedHelpWithMom Aug 2019
Don’t take his phone away. He may freak out.
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While your father is phoning every half hour, all he is thinking about is the next phone call. He won’t settle in until he stops interacting through phone calls. So you have to stop answering for his sake, because he won’t stop. Many places even recommend not visiting for two or three weeks, to help the person settle in. And there are many posts that say they have watched their LO secretly, and the LO is joining in with other people and activities quite happily until they notice who’s there, and then all the complaints and demands to go home start up. That’s probably not the case now with your father, because phoning seems better than even looking at what’s going on around him. Good luck, and know that you are being ‘harsh’ for his sake, not just yours.
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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