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My mom has lived alone over 50 years, made all her own decisions without anyone to argue with her, and ate alone. Now 91, she is in IL/AL where all meals are in a dining room where everyone eats at round tables seating 6-8 people. The facility has a varied calendar of activities and entertainment, and a large gathering area to sit and watch people. Living here was her decision/choice and has been fine for just over one year until she fell on her face two months ago due to a UTI. Now she is in AL, has help throughout the day, and doesn't have to do anything herself. She has ALWAYS been obstinate, argumentative, and life-long chronically depressed. She now has early dementia ("people are stealing from me" when she forgets where she put things-usually in her pocket) and uses a walker. The AL just contacted me to say mom is now "refusing" to go to the dining room for any meals and sleeps all day. They independently contacted her Dr. who set up an appointment for her and for a psychiatrist, and called me to take her to this appointment which is scheduled for two days from now. I live over 1,000 miles away. In the last two years I have spent more time with my mom than I have in my own home with my own husband. I have only been home for 2 weeks from the last 3-week stay after her fall, and now I might have to go back. We are retired and are spending from our 401K accounts to travel back and forth. I have no solutions. My questions are, 1) why does a 91-year-old need a psychiatrist - how would that help her?; and 2) if she simply decides to eat in her room is that what they are calling "refusing" as in "she is refusing to do everything"? She is not refusing her meds and she has always lived alone so why would she suddenly want to join an active social schedule? I'm wondering if I should move her to a smaller facility like a Board and Care home, but she likes where she is at and she chose to live there vs other places we looked at. Maybe I don't even know what questions to ask the AL...

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You simply cannot drop everything, leave your family (again) and run out to take your mom to an hour’s psychiatric appointment. If she requires all this input care from you, the IL/AL is not doing it’s job. Simply tell them you don’t feel this psych appointment is necessary and don’t go. I may be misunderstanding what care involves in an IL/AL, but why did you have to spend 3 weeks taking care of her if Mom is paying all this money in a facility for just that? If she needs a higher level of care, the facility should ask for a Care Conference with you (FaceTime or Skype) and discuss it.

It sounds like they’re just doing CYA. My mother was in skilled nursing and she seldom joined in their activities unless she was forced. She had 9 out of 10 meals in her room and no one ever said a word. She just enjoyed her own company more than anyone else’s.

Before you run out there again and spend any more of your retirement fund, call a meeting and firmly but calmly explain to them that you are not “around the corner” and cannot keep dropping everything and putting your life on hold.
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Don't move her that would be very hard on her. Consider hiring a geriatric care manager to help mom instead of you having to travel.

The geriatric psychiatrist will look at her behaviors and meds to see if there is a different medication that may help with what may very well be depression.

She is in assisted living which does not include room service. In AL meals in the room, if permitted at all, would be an additional charge.
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The appointment might be a good thing for her. But call the assisted living place and say point blank say that you are 1,000 miles away and cannot come and take her to the appointment. She is in assisted living and living with dementia. The UTI probably brought about more changes and should be addressed sooner rather than later but you shouldn't be running over there for everything. This time, stay home and say that you can't be there for every crisis but want to be informed. Setting up that appointment and giving you such short notice is pretty crappy. Someone said something about a care manager and it would be helpful.
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Call the doctor and talk to him. Tell him there is no way you can make it back in 2 days. Ask if he has a Nurse Practitioner that can go to the facility and evaluate. Tell him that when u were there, except for a little Dementia ( which still could be caused by the UTI) she is no different than she ever was. If she wants to be alone, why can't she be alone? If she doesn't want to eat in a dining room, why should she. The AL is now her home. She is a resident not a patient. If she doesn't want to join in, thats her prerogative. She is paying big bucks to live there.

I have no idea why a Psychiatrist. Ask the doctor. I took Mom to a neurologist. Talk to the RN at the facility. Ask her why she felt the need to see a doctor. She and staff may have seen something you didn't.
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Thank you everyone for your replies. You have given me valuable insight. Tomorrow is phone day...
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ItHappenedToMe Oct 2018
Praying that things went better than expected....
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Please come back and tell us what u find out.
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Live247 Oct 2018
I will. So far I’ve only gotten voicemail.
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Frankly, at 91, she should be able to live how she wants (within reason.) My dad is 91 and I let him skip meals whenever he wants and let him have crackers and cheese in his room with some dark chocolate. It makes him happy. He earned this right by virtue of being 91! No way does she need a psychiatrist (this is just my opinion, obviously, so take it at that).It will most likely just lead to more medication, and more work for you.
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When my mother first showed signs of dementia, she had a complete evaluation by a geri psych which was helpful as she was found to have vascular dementia and given meds to deal with the paranoia and delusions. I am a distance caregiver too, and support you telling the facility that you cannot come. If your mother has the funds you nay want to hire a care manager or someone who can help her with things like appointments. For a while mother had a "senior helper" she paid for who helped her through her medical appointments and other things when I was unable to be there. Please protect your own retirement funds. You need them.
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😂 lol yeah...needs a psychiatrist....like she’s going to listen to them!!!! So funny
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YsLadyMN Oct 2018
Psychiatrists are used to manage dementia and depression with medications, not talk therapy... often with significant success. smh
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I don’t know about all of your questions, but a psychiatrist’s evaluation really helped everything with my very stubborn, independent 90 year old Dad.
It helped determine he no longer had the capacity to make his own decisions, for one. It helped determine the appropriate medication to treat his over the top anger, his depression, and some of his delusions.
It helped make the correct diagnoses of vascular dementia, delusions.
But he had those assessments in a geriatric psych floor in a hospital that took several days.
I had DPOA, and I live 900 miles away. I did not fly back for this, I waited until the results to determine the appropriate placement.
There are nursing services that transport patients, and I consulted with the nurses and doctors by phone.
I flew back afterwards to get things in order and make sure Dad was settled in his new environment.
I don’t know anything about Assisted Living, except we knew even before the evaluations that AL was voluntary and he was too stubborn and independent to stay if they said or did one thing he did not like. Like take a shower, or throw away old food, etc.
I hope you are able to explore other ways to get this done so you don’t have to spend your time and money until it is absolutely necessary.
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ItHappenedToMe Oct 2018
I know everyone's case is different. I hope you knew your dad well enough to trust the doctor.
In my mother's case, my siblings and I knew Mom better. She didn't have dementia like the nursing staff kept saying. She finally got a therapist that they wanted me to talk to to see what could be done. Turns out that I knew him. He agreed enthusiastically that Mom didn't have dementia - said "She's sharp as a tack". Nonetheless, the NH staff still wanted her on psych drugs because she was quarrelsome. She went downhill fast. In a fog most of the time. I keep thinking "if it were me"...no, no psychiatrist, no drugs. They need to find another way to deal with troubling behaviors. There is a video about how they handle dementia in a nursing home in Britain. They find out what the patients did for a living and try to recreate such things to give the patients a sense of being needed. I think nothing would have made my mother happier than baking or cooking. It might have made all the difference in the world if the patients could have done something like that together. But I digress...this is about AL - and I still would say "whatever makes her happy".
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If the AL will not listen to you, try an Elder Attorney.
Unless the AL has a strict policy about eating in their rooms - your mother should have the right to NOT socialize if she so chooses.

Explain to the AL Staff that if you must, you will seek legal counsel as your mother has her rights too.
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gladimhere is absolutely right -- AL is supposed to be for those who need only some assistance, not room service. I have to pay $10 for every meal that my mom has brought to her room, which is pretty frequent. Your contract with the AL community should have mentioned that. If it didn't, you'll want to address that with the community.
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You have received alot of good answers. I would just add that in general AL facilities are set up so that residents participate to certain degrees to how the place is run. That generally means dining with others. There can be times that is not feasible but if she never wants to eat in the dining room she seems to be possibly more at a stage for a NH or a group home. I am confused as to why she likes the facility if she doesn't participate in anything offered. She certainly doesn't have to go on outings but her desires are not consistent with AL life as I know it from 2 different facilities for my mother. On a final note you should not have to travel for a specific visit. Have you considered moving her to a facility closer to you?
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Your mother did not surrender her rights to AL. If there is a charge and you can afford it, by all means, let her eat in her room. She should not be forced to see a psychiatrist either. People who have lived alone all their lives and who are introverts are not suffering from a mental disorder. If you permit them to take her to a psychiatrist, be aware that they will, in all likelihood, prescribe something. Don't let them get started down that road; psych drugs are killers for the elderly. She sounds a lot like my mother - who also didn't like socializing that much. Pushing someone to socialize when they don't want to just makes matters worse. Most people would object. It's human nature.
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Perhaps a psychiatrist can provide her with an rx that can help her. That's why one would seek out a specialist of that type. If the manager of the AL will not listen to your concerns, retain an attorney.
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Have you heard anything?
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Psychiatrists are good. If you live past 85, odds are you will get dementia. Meds can help with anxiety . People who get dementia start withdrawing because they know they don't know how to act in situations and they get confused. Staying in your room alone is a sign of depression. Most AL's have shuttle vans to take people to doctor app's. so you don't have to. They should arrange something.
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It is very difficult to care for an elderly parent and I can tell you are doing everything that you physically can. Remember you need to first take care of your own needs before you can take care of anyone else.
With regards to your mom, having a psychiatry consult does no harm and may help better understand what is happening. Many AL facilities have their own psychiatrist and psychologist that will visit with a resident. Also many facilities also have regularly schedules trips to take residents for doctor's appointments, shopping, outings etc using their own driver/bus. So a doctor appointment can be scheduled with this in mind.
It may be less expensive to hire a home health aid/companion to help mom a few days a week especially on days when she needs to make appointment than for you to travel so often for non emergent reasons.
I speak from experience not living close to my mom in an AL facility, who is very needy, having severe anxiety and being alone for the first time in 60 years. She has been preferring to have breakfast in her room and does not like the regimented meal times and having difficulty interacting with others.
It is not easy to teach an old dog new tricks and many older folks are set in their ways. This does not mean they have dementia or are depressed.
As your mom gets older and possibly more feeble, some AL have dementia units (for a higher fee) and at some point if she needs more nursing care she may need transfer to a nursing or rehab facility.
My heart goes out. Good luck
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Thank you so much to everyone who posted replies to my question. You encouraged me so much. Finally I did hear from everyone I contacted regarding this situation. The quick summary is this situation was a combination of miscommunication, missed communication, a shift change of personnel, language barrier, and a convergence of coincidences. It was something sorting everything out, but the result is my mom will see her doctor for a regularly scheduled follow-up visit, but since I got to talk to the doctor, I got to mention other concerns that he will address at this visit. She is better, too, for now anyway. But as we all know, that is temporary, but I will take it for however long it lasts until the next bump in this long rocky road. Again, thank you everyone. I am grateful to you.
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You may want to move her to your town  or as close as possible maybe find a memory care cottage type facility with  a 2 to 7 ratio instead of 1 to 25 like most Brookdale facilities are (overworked caregivers).   I don't believe any of these facilities give residents enough to drink especially if the resident can't hold the cup or ask for a drink ,  as a result uti's are common in 2 yrs my mom went to the hospital 4 times not for the  uti but that was always a common problem and resulted in falls broken bones and once a brain bleed. Now mom is in a wheelchair and her dementia is very bed but In the last year  I have gone over to feed her lunch 6 days a week  I get her to drink as much as  I can we made it a year no uti's
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If your mom doesn't want to socialize and likes being and eating by herself she should be left alone. It sounds like she's the same as she's always been so why would she need a psychiatrist who will only drug her. I agree with ItHappenedtoMe.
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Your mom sounds a lot like mine. I think this is my mom's biggest fear when it comes to thinking about some sort of assisted care or living facility, that she will be forced to "join in". Not only has Mom been a loner, did I say loner, some might call her a hermit though she gets along with others just fine, most of her life she has been deaf in one ear so groups have always been hard or her and now that she has lost 50% in her good ear and has aphasia, well she dreads anything social in a group. I would ask for a team meeting (if they do them) that includes the director and or coordinator as well as her main caregiver at least and explain who your mother is, that "not joining in" and wanting to eat alone is perfectly normal for her, in fact if she were doing those things you might wonder what was going on.

I hear you on the psychiatrist but to tell the truth it's encouraging to hear they are that on top of things to be trying to get that going, for many residents these would be signs they might need some interventions and by the sounds of it many facilities don't think of much less arrange for this kind of assistance. That said it doesn't sound like that's necessarily what your mom needs, again she is behaving normally for her. You mention life long depression, is she on any meds for that? The doctor they made the appointment with, is it one she has known for a long time? If so I would hope that doctor knows this is normal for her, if not I guess they need the same conversation, sorry. I'm just curious, if you are her primary family and support what keeps her so far away? I mean if you don't have other family in her home town and you are considering a move anyway maybe moving her to a place closer to you would be helpful so you aren't making these trips because I'm not sure they are going to stop. It may settle down for a while but in my experience so far just when things are going along smoothly something happens needing a support trip. Just fair warning. Now again, if you can meet with the right people and get her care team all on board you are probably better off leaving things status quo if she's happy there, I was just thinking if you decide you want to move her.

Good luck!
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It just sounds like your mother is changing. AL and other facilities do not know your mother like you and you should consider that if your mother is changing then a change of environment maybe the best thing. I took care of my mother at home and her changes begun and all I could do was let them happen and respected her choices. AL and other facilities are always are looking for the medical solutions, but sometimes, especially if your mother is healthy, its just where they are. For my mother who was also healthy, she stopped her regular activities of shopping and engaging with others. I researched some topics like withdrawal or changes of behavior and found out that these changes are normal for people their age. I would not take her to a medical doctor but allow these changes to be her new normal and accept it as who she is at this time. I hope this helps you to make these choices as she changes further and not become stressful or frustrated. You have to make these decisions for her not the AL.
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Saying someone is stealing is very common, in elderly communities we bought mom a safe and she would leave it open and say someone got in it. Mom got obsessed with paperwork. The sad part is there's no perfect answer that works for everyone. I don't agree with drug use makes them more confused. Move her close as possible to at least one family member because the caregivers know who gets visits and who doesn't it really does change how the are treated
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Think about moving her to near you & I mean under 15 minute drive - she has no close friends at AL so that shouldn't be an issue, if she is inside all the time the weather is the same so climate comes out of the equation, she would be getting the same care & you can take her to these appointments without a major trip each time

The days your mom needs your help, you will still be able to have dinner with hubby & sleep in your own bed that night - even things like making an appointment at your dentist will become easier - when away from home there is so much down time with nothing to do but watch TV in a hotel room

For the last 6 months of her life my mom was a 4 minute drive down from 40 minutes - her dementia was such that she didn't know if I was there for 15 minutes or 2 hours - occationally I would run over for an extra visit after I put the dinner in the oven - at the end I would some days go more than once & just rub hand lotion on her hands as that soothed her but my stay would be about 30 minutes

Think about it & discuss with hubby - if you both decide start looking at what is near you for AL etc - by the way another advantage of being closer is that the NH won't know when you'll just drop in so she will have good care as 'eyes are watching' them all the time
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For everyone dealing with a LO with dementia, I suggest reading 'The 36-Hour Day'. It was very, very helpful for me in learning how to better deal with my dad (Alzheimer's), and my mom (vascular dementia). Try to remember they are mostly coming from a place of fear - the fear that they know things aren't quite right, and the fear that others can tell.
Another wonderful source for information is Teepa Snow. Her (free) videos on dementia are brilliant. So helpful. Good luck.
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