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anonymous179890 Asked January 2014

How to handle Mom in a NH who's insistent she's going elsewhere?

My mother has been in a lovely NH near me since November 2012. She frequently obsesses on leaving, going somewhere "nicer", i.e. a newer assisted living facility where she'll have her own apartment (currently has a private room), a dog and a cat, and hot and cold running nurses to wait on her hand and foot, which she has now - whining crying phone call this afternoon ... again.

She and I looked at an AL facility back in 2008 before I came to care for her and that's what she's fixated on today. Two days ago she was bent on opening a small store in the NH - with Parkinsons, dementia, a broken hip and another stroke in the last few months her speech is almost unintelligible and she cannot sit up or stand by herself or get to the bathroom, sometimes in a wheelchair, but mostly bed ridden.

A nurse accidentally knocked her very old touch table lamp off and it doesn't work any more. I will buy her another but she's now fixated on getting the NH to admit fault and buy her another.

An A1 narcissist, her whole life has been all about her and her wants and nothing and nobody was ever good enough, always yearning for and chasing "pie in the sky". I explained to her (as I always do, time and time again) that she's well looked after, wonderful staff and there's no way she can move (up) to AL.

She has no friends and there is no other family so I'm "it". We've never been close - she was a real "Mommie Dearest" - but I have done my duty by her and then some. I know it's just the disease, combined with narcissism, but as her condition worsens I've taken to turning the phone ringer off at supper time to preserve my sanity. For me there will be no escape or freedom until she dies.

Please don't tell me to agree with her. If I did she'd fixate totally on that, get the staff to start packing her stuff, the NH would be calling me constantly to see what's going on, she'd be calling me constantly anxious to go choose "somewhere new and nicer" and I'd likely just abandon her and the whole mess, just making sure her bills are paid and she has all she needs..

Time to rebuild my life ... I've aged terribly and my hair is falling out due too years of stress ... I am so done with this cr*p.

anonymous179890 Jan 2014
Thanks Blannie. I'll talk to the staff next time I'm there. I also have to ask them not to give her mail unless it's a card but hold it for me as she just throws anything else in a drawer and I need paperwork for my files so I can keep everything in order and for tax time.

She's 87, had dementia for many years which is quite bad now, Parkinsons for 15 and a number of strokes over those 15 years. When I visited recently she asked "Is dad here?". I just said, no, not today - he passed away in 1998.

A few months ago she was bound and determined to gift a ring to a friend, had me take it to be cleaned and deliver it. Ever since she frets how she misses it and regrets it so I asked the friend to return it, which she did - now the friend is mad at me!

She keeps trying to give me the big screen tv I bought her - nope, have a tv of my own and I know within a day or two she'd be grizzling and I'd have to hire someone to haul it back there again. She's been obsessing over a pink jacket that was "stolen" and I asked at the lost & found. Staff ran all over looking for it, then I found out it was supposedly stolen when she first went there in November 2012. I don't recall it and it's probably imaginary. She's convinced people are stealing her chocolates as well.

I know it's the dementia and narcissism but she's always got a great kick out of jerking people around, pulling one over on them and watching them run and these days it just gives her something to do ... sadistic really. The one friend who has visited a few times thinks she's ok but, like so many, she puts on a "show time" for outsiders so people think I'm exaggerating.

This weather isn't helping either. The wind's howling across the fields today and it's -28. I'll take my dogs out to the backyard with a warm coat on the little one while I fill the bird feeder. I don't know how the poor wild creatures survive.

blannie Jan 2014
I'd tell the staff they are NOT to allow mom to call you, since you're making regular visits to see her; they can totally control that annoyance. And I'd let the police know where mom is and that a stray call from her may come in about you. Give them a heads up. You sound like a wonderful daughter.

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anonymous179890 Jan 2014
Thanks everyone for your input. With slurred speech and unable to dial the phone she recently said she didn't want it any more so I had it disconnected (changed her mind once it was cut off), so now she goes to a hallway phone and has a nurse dial. I have my phone ringer off all the time, just checking occasionally to see if the voice mail indicator is flashing. Things are only going to get worse and I may eventually have to change my number and make it unlisted.

Any day, whatever time I visit, there are only one or two cars in the visitor parking and there are 60 residents. No-one else seems to have someone who runs their errands and visits. Before her last stroke, on two occasions there was a bus trip to Walmart and a resident could only go if they had someone with them. On each occasion I was the only family member going along, the rest were staff and I followed the bus in my truck in case she got sick on the journey and had to be taken back then pushed her all around the store, being careful to stay in mid aisle as she kept grabbing at things. I've gone above and beyond for her for years and I've totally had enough.

I have no family and friends tend to avoid you if you're on a downer so I've no-one to talk to. Thank you for listening and taking the time to comment.

LadeeC Jan 2014
Before suggesting the lying route (and I will), let me ask you this: how's her memory? If she's already in dementia, but otherwise fairly healthy, I totally advocate for the 'kind lie'. I say "kind" because it IS kind to all involved. I know it sounds heartless, but it just isn't. It's a way to sooth an agitating condition.

You've gotten some sound advice, here. Find your lies, closest to the truth, and don't diverge from them. "We tried at the other facility .. you don't meet the criteria." "Mom .. you told me to take care of things, so I am." (She DID give you POA.) Deprogram her phone with your number in it. Don't write it down. Instruct the facility that calls to you must be supervised .. er .. all calls must be supervised. If, when you visit, she rants on and on .. get up and leave, telling her that you'll come back when she has another topic to discuss. Repetition and consistency will eventually sink in. Maybe .. just maybe, she'll turn her frustrations onto the staff and THEY'LL insist she be seen by the doctor.

If you can't connect directly to the doctor, talk to the hospital administrator and remind them that you always have access to the ombudsman and that you're very concerned for your mother's welfare .. if the doctor can't find time to treat your mother, maybe it IS time to move your mom to somewhere that she's be adequately cared for.

And, don't accept the excuses. There ARE none for not properly advocating for the patient. Most facilities are overrun and understaffed and it isn't until you grease the gears that they move. Been there, done that, wore the dang t-shirt.

Best of luck and let us know how it goes.

Jinx4740 Jan 2014
Poor Ashlynne. She is keeping you hopping.

I hate to think of you in your nice new town worrying about being identified as a drug dealer! Can't you go to the local store or cafe and chat with the people about your mother and her worries? Let them know a few details (carefully chosen by you) about your life. They will love you and be on your side. So many people have elders who drive them nuts. They will identify.

Certainly explain things to the police before she does make a call. That alone will make you feel better.

This is just my philosophy that if you don't hide things, people will think you have nothing to hide. I know it doesn't work for everyone. God bless you.

Chicago1954 Jan 2014
I would do something to disable her phone. Good luck. It sounds like you have a plan.

rovana Jan 2014
Sounds like your mom is more fortunate and well cared for than she deserves. Why shouldn't you leave the phone ringer off? For pete's sake, she is in a nursing home where they can help her in an emergency far better and faster than you could.

anonymous179890 Jan 2014
I live on a dirt road, one house across the road then nothing but fields and forests. I've lived here just over a year and it's a tiny community where I don't know anyone much yet. I want to make a life here and if cop cars are seen on my doorstep (and you never see a cop car out here, ever) I'll be blackened as some sort of looney or drug dealer and I'll never get to rebuild my life.

The doctor does the best she can but, frankly, most of the residents have one foot in the grave and the other on a banana skin so there's little she can do for them. My mother is in no pain whatsoever.

Veronica the NH is ace with the most wonderful staff, some of whom have been there over 30 years. They're hot on cleanliness, laundry and bathing. There are 2 dining rooms and when someone can no longer feed themselves they are moved to the dining room where they get fed by hand one on one. She could have it no better.

Next time I visit I'm going to provide her, in large print, phone numbers of 2 so called friends - she would never move near me because "I have so many friends" ... so I gave up everything to move and care for her to discover she had no friends at all. Let her call those 2 and drive them batty. They never visit and after the first call they will never answer or call her back but it will keep her off my back for a while.

Oh, and while whining at me today she wanted to know why her bank statements and bills came to me instead of her. Well sugarplum when you get mail you just chuck it in a drawer and you can't even write your name. I found a phone bill some time ago that was 3 months overdue! Now everything comes to me so I can keep track. I have POA and complete control, which at this point is totally necessary.

From here on I make sure all money is conserved, pay her bills and ensure she has everything she needs but my phone ringer stays off and I may well have to avoid visiting.

jeannegibbs Jan 2014
Make sure that your local police know that your mother is in a nursing home and that you often have to shut your phone off. But even if they do a welfare check and determine that you are OK, so what? Do not let your mother's behavior control yours. It sounds like you are working hard at not being controlled (good for you!) -- do it more with the phone off.

IF it would save a lot of hassle and stress, consider giving the new lamp to the NH to present to your mother with their apology. You'll have to judge whether that would make things better or worse. Keeping things calm is more important than "the truth."

Anxiety is definitely a health issue. The doctor must be told about this (find out how to get on his/her visit list). Unfortunately there is no pill for selfishness and lack of empathy, but at least treat what can be treated!

When she starts obsession on the ALF (which she is most likely not even qualified for), leave the room. "I'm sorry, Mom. There is nothing I can do about that. Shall we talk about something else? Otherwise I'll have to leave."

My heart goes out to you. You certainly don't deserve this!

anonymous158299 Jan 2014
i like sunflos idea. i never thought id find a justification for lying but thats before i understood elder mental decline and obsessive behavior. if lying calms them down then youve done it for their sake imo.. lie like a rug on valium..

Veronica91 Jan 2014
Ashlynne why are you still allowing your mother to control your life? so what if the police come to your door. are they going to arrest you for failing to answer the phone. She is in a nursing home and the staff know how to get in touch with you.
The other thing for you to realize is that doctors are not God. The NH Dr is paid for his time and that includes taking adequate care of all the patients. just because they are at the end of life is no excuse for neglect. They feel pain and anxiety just as much as anyone else maybe even more because so many of them are abandoned. You may feel like running away and that is perfectly understandable but that is not going to solve anything. You have taken responsibility for your mother's welfare and that includes mental and physical health. If the Dr does not have time to properly care for your mother it is up to you to make sure he or she does or know the reason why. Be there on the day rounds are made and participate in the visit. Do not allow the staff to shoo you out you have a right to be there and if you are denied lay a complaint with your state health board. If Mom is as much of a pain in the butt to the staff as she is to you they will certainly support medication and make sure she takes it. if Mom is on Medicaid/Medicare contact them too is you feel her care is not adequate. for instance do you find her call bell is out of reach when you visit. Does she smell of urine and/or feces. Are her bed linens clean her clothing freshly washed. Is the facility clean or does it smell bad too. this is clearly a facility that looses a lot of patients every month which in itself is not unusual but they have a right to be mentally and physically comfortable at the end of life. This is not meant as criticism of you, you have had a life time of dealing with this woman as your mother and are certainly due for some respite. Blessings

mcs175 Jan 2014
I am sympathetic to your issue with your Mom. I'm Glad you can choose not to take the calls. There is nothing you can do or say to them that will ever get through!!! Save your own sanity and heal yourself!!

anonymous179890 Jan 2014
pestegman, thank you and to all have responded thank you as well. The NH just has a doc that visits once a week and often doesn't get to the end of the "needs" list - 60 residents, most wheelchair bound or bed ridden with very serious health issues. Most are in such bad shape, end of life, that they lose 2 or 3 every month. For the doc there is no time for mental issues, which are not life threatening.

Yesterday she wanted to know my full address. Nope, just gave her the name of the nearest village. If I don't answer the phone she'll call 911 and have the cops on my doorstep - did that 20 years ago when I didn't answer the phone and she was totally sane. Just a control thing but I'm never going there again.

Sunflo, good idea but if I tell her I'll look into it she'll be on the phone constantly wanting to know when she can go there until I'm ready to either commit suicide or run for my life.

My only option to preserve my sanity is to have the phone ringer off a lot. Next visit I'll give her phone numbers of so called long ago friends so she can call then and drive them batty. Of course, after the first call they won't answer or call back but it will give her something to do and keep her off my back for a while.

Veronica91 Jan 2014
I think you are overwhelmed with the whole situation and just need to step back a bit and put some distance between Mom and yourself. Limit the time on the phone or even ignore some calls maybe pick a time each day when you will have a brief conversation. When she starts to whine tell her you are going to hang up and will call her tomorrow. Don't play into anything tell her firmly that she is not moving anywhere end of subject. let the staff at the NH know what is going on and that there is no way she is going anywhere as they know full well. It is a hard cruel world especially when you start to loose your abilities but she is in a good situation and you have been an excellent daughter to her which is probably more than she deserves. She is not capable of being grateful and appreciating the good things she has so you have no choice but to tell it like it is. I think some antianxiety medications would probably calm her down and make sure her pain is adequately controlled. pain in the elderly is often ignored because they can not verbalize adequately what is really going on. Take care and concentrate on yourself now you are doing all the right things for mother. there are just some things that can't be fixed.

sunflo2 Jan 2014
You might not want to listen to this same ol harp, but sounds like she's fixated and you know she's just venting. Nod your head, tell her you'll call the new place and then when she asks again, tell her "well, I called, but there's a 6 mo waiting list". " you'll be here a little longer so make the best of it". Then repeat whenever it comes up.

You can always inform staff or NH director of your little white lie.

When it becomes too much, tell her if she wants to move she has to arrange the new facility herself. She won't because she isn't capable to get the number, make the call, answer their questions, etc....

My mom threatens me with stuff all the time. I reply "good idea, you have the power and control mom, so make things happen". Then if she brings up again, I reply "oh yeah, how'd that go? When are they coming?", etc. She will then ask me to please call or whatever and I say "no" this is your business and you know what you want so best if you make the call".

It's no fun, but quiets her temporarily because she can snap back and realizes her limitations.

blannie Jan 2014
I know this isn't what you want to hear, but it's surprising your mom hasn't had her dreams/obsessions knocked out of her by now with all of her health woes. I kind of admire that she's still dreaming big. But I also understand how frustrating that can be for you, given the reality of her situation.

I guess the only thing you can do is do what you can and protect yourself as much as you need to, whenever you need to. You've done your duty and now you're just running out the clock. That sounds terrible, but you're still taking care of your mom. Nothing says you have to cherish every moment. Well some folks on here will say that, but not me. And like PStegman says, maybe some medications will lessen her OCD/obsessions. At least you can come on here and vent when you need to and not feel alone.

pamstegma Jan 2014
No, don't agree with her, she is not well enough for AL. On the other hand, her MD can prescribe meds for anxiety or OCD. We are having a similar problem, Mom is in her home, needs AL but insists she wants to move into the Carousel Apartments which is Independent Living and strictly low-income housing. We tell her NO. She forgets and brings it up again the next day. I never stay with her more than 2-3 hours because I can't take anymore than that. Know your limits and when you hit the wall, walk away.

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