Follow
Share

In august 2012, my sister seemed to have more problems with short term memory and agitation. she has been caring for her terminally ill husband for the past 3 years. he has not been the nicest person to be living with, nothing she did seemed right. she started directing her anger towards him and her daughter gained power of attorney and had her admitted into a locked memory care unit. her daughter told her she was going for a ride and instead took her to this unit and didnt even let her pack a bag of her personal items. she has been stripped of all independence, only allowed to have her cell phone. she doesnt seem to fit in this unit because she has so much life compared to others in the unit. she ends up helping the staff most of the time...she went from driving, having access to her finances...being on a bowling league..having dinner with her friends.. to being locked in this unit. does she have any rights? can she revoke the power of attorney? as her sister, what can I do if her daughter is not willing to listen to her... it was very sad tonight she said she spent her whole life putting her kids first and now her kids are treating her like she is crazy

This question has been closed for answers. Ask a New Question.
Find Care & Housing
Frustrated209, who is taking care of your sister's husband now?

Has your sister been diagnosed with dementia? I think that would be a minimum requirement for placement in a memory care unit. If she had short term memory problems, agitation, and was directing anger toward her husband, that may have all been symptoms of dementia.

The only way for the daughter to have gained POA is for her mother to have given it to her. And POA is not sufficient to place someone in a care center against their wishes. So there had to be something else going on.

I suspect there is more to the story than what appears here -- and perhaps more than you are aware of, too.

Who is your sister's doctor? Find out what forms his office requires in order for the doctor to talk to you (some kind of hippa waiver form, usually), get your sister to sign it, make an appointment, and have a discussion with the doctor about your sister. Does she have dementia? How severe? Does she really need to be in a memory care unit, in his/her opinion?

Also have a discussion with your niece -- a calm, non-accusatory discussion for you to hear her side of the story. Why did she place her mother in a care center?

You are very kind and loving to be so concerned about your sister. Please talk to her doctor and her daughter. If you then feel that she should not be in a memory unit of a care center, come back and post again, for advice on how to remedy this problem. I just don't think we can enough details yet to give advice.

And, by the way, nearly all "memory care" units are "locked," because with some types of dementia it is very common for the patient to wander, to get lost, to forget where they live or even what their name is when found by someone. So the locking is for their protection. I don't see any reason why she couldn't still have dinner with her friends or other supervised outings. Have you asked the center staff about taking her out to lunch?
Helpful Answer (3)
Report

Sisters husband is living at home alone, neighbors drive him to his chemo appts. otherwise he is capable of taking care of himself. my sisters daughter did not feel it was a good environment for her dad if my sister was showing anger and aggression against her dad. she first had her placed in a psych center for 8 days and they labeled her as having mild frontal dementia. she knows she has some memory issues but otherwise feels capable of caring for herself. she does not want to be back home with her husband because all they do is fight. I do take her out for lunch or just a car ride and she enjoys it. the unit actually also has outings. she feels that everyone treats her as if she is crazy. she would like some independence even if it was just in the form of having access to some of her finances. they wont even let her have her mail forwarded to her. I see she has short term memory but she is constantly writing notes to compensate and remember things.. sometimes she misplaces things and thinks someone has stolen something from her so she may have mild paranoia..it bothers her that she cannot lock her room door and it is not uncommon for her to have others on her unit walk into her room in the middle of the night and this scares her. she complains to her daughter but her daughter always appears to be on the others side instead of being supportive and making her feel she is on her side.
Helpful Answer (0)
Report

I know this is an old post, but I think it is an important problem - how do outsiders recognize dementia? In the middle stages of dementia, the person is able to cover up their memory loss by making lots of notes to themselves, by accusing other people of doing things to cover for gaps in memory, etc.

It sounds like your sister is doing a good job of covering up her problems to you. With the medical history you have described, it sounds like she is in the appropriate place. The only way to be admitted is to have a doctor sign off for the memory care unit to prevent the kind of abuse that you are imagining.

In Jan, my mthr called her former teaching partner (who knew that mthr had doctor-diagnosed memory issues along with her cancer). Mthr told womans's husband who answered to come get her, that I had left her beside the interstate near the capitol and taken her car keys, etc. and that she had walked up to this building that let her use the phone. She was very convincing to the man, who immediately started packing up the car to drive to the capitol - of the wrong state. The wife got home to go with him, and stopped long enough to call me to give me a piece of her mind.

Once she stopped long enough to take a breath, I told the woman that mthr was in a locked memory care unit HERE two states away, and that mthr was making up a story to cover up why she was here, and why she did not know where she was. The teaching partner did not believe me until she called the home and talked to the director, who told her mthr was there and very agitated, but perfectly fine. She did not apologize to me, but did not hassle me further.

Currently, mthr is calling my house and leaving messages that she came to visit (director's name) and now director won't let her out of the building without me or my husband signing for her! She has no memory of being there for the last year, but she sounds so convincing in her messages that this is an immediate crisis and that she has been kidnapped. I hate to think who else she has called. BTW, she does not have a phone, but uses the office phone which is allowed by the home. If anyone has a strategy, I would love to hear it!
Helpful Answer (1)
Report

It sounds like she shouldn't be using the phone without supervision. Is there a way to ask them to limit her phone usage? Or to have someone with her when she makes phone calls to make sure she's not calling others to report she's been kidnapped?

It has to be unbelievably hard for you to have a mom who is still able to make a coherent case to others that she's being held against her will when the reality is very different. It sounds like you're doing what you can given the circumstances of your mom's condition. The only other thing I'd do would be to let friends and family know what's going on, in case they get a call from mom.
Helpful Answer (2)
Report

I have just written to the two people from her home town to let them know she's delusional, to meet her in her place in time and refocus her energy. I like that idea!

The home prides itself on allowing people freedom to call out... They have a phone in the "library" that residents can use, and the director said that usually people forget about it eventually. I will ask what they can do to help with the calls!

Does anyone think that increasing her Zoloft might help? We have a dr visit coming up this month, and she has only been on it 6 weeks.
Helpful Answer (0)
Report

They would do better to have the phone somewhere near staff members who could intervene if the caller gets out of reality. When you're dealing with residents with dementia and paranoia, they could be calling 911 or anyone to report any kind of delusion. I admire their openness to allowing residents to call, but that has to be balanced with the knowledge of the residents' mental condition. Letting her hometown residents know what's going on is a good one. Hopefully they'll spread the news to her other friends.
Helpful Answer (2)
Report

Frustrated's original post sounds like niece did what was needed to protect the dad from abuse that would only have gotten worse. And it was hard for her to see that's what was really going on with her sister, which is totally understandable...any updates?
Helpful Answer (1)
Report

surprise - your mom sounds like my aunt who had a stable form of alcohol dementia, which is to say, once I removed her from the alcohol, the brain damage she had attained, she kept, but she didn't deteriorate further until 6-1/2 years later when she had three strokes.

She fooled my mother and me for at least 3 years from our long distance phone calls because she spoke coherently. She compensated and covered up well and it wasn't until she fell and landed in the hospital that the paramedics reported and l (her medical and financial POA) was informed of the condition of her home and her pets. The details were grizzly and others have discovered the same type of circumstances, so no need to repeat it here, but suffice it to say she was living in squalor unknown to us until that time.

Fortunately for me, there was a two month in residence neuropsychiatric evaluation program up in the Bay Area where she lived that she was eligible for. Unlike the family members of any other residents there, and due to my acquaintance with things medical, l was there everyday with her and the other folks (who ranged from seizure head trauma to self mutilators to many forms of dementia). Because they saw me there everyday, I eventually formed a relationship with the neuropsychiatric MD, the psychiatric RN and the psychiatric social worker. The other patients there came to think of me as one of the workers and, with permission of the staff, I did get to know many of them and assisted them as well. It was a very interesting time and I can't begin to tell you how much you learn by spending 12 to 14 hours a day in a locked environment such as that, especially when you don't have to, haha.

Anyway, "surprise", what I was going to ask you to ask the Dr about for your mom is medication called buspar. It is an anxiolytic (for anxiety) and I personally think has more bang for your buck in calming the problems that produce the compulsive behavior to want to go home, get out, make phone calls, etc. Back in 1993 when my aunt was taking it, it was proprietary and very costly, over $300 a month. But I asked for it for my mom in 2012 and it's now a tier 1 generic, so very inexpensive. My mom had drug-induced dementia from the long term use of anti-cholinergic effects of the drug combinations she was taking before research has shown that was a problem. The buspar really helped her angst and ruminating and definitely improved the quality of her life. Before I requested the buspar, the doctor was considering an antidepressant or a tranquilizer, but was concerned and said she had to do research when I brought up the anticholinergic effect. The buspar doesn't mess with your brain chemistry the same way SSRIs or MAOIs do, so it's worth the question.
Helpful Answer (2)
Report

Hey vikki - don't you just love when people come back and post updates? And SOOOO wish more folks would??

Just in case "frustrated" is still reading, I would ask her to read my post above to "surprise" about my aunt with alcohol dementia. At the time I brought her to Southern California from northern, I had to locate her in a nursing home because I was already helping my mom take care of my dad who had full blown Alzheimers.

The MD at the neuropsych center had to make her diagnosis so that she was appropriate for a locked memory care facility. Nobody is put in any long term care, especially a locked facility, without cause.

And of course, based on the recommendations of the doctor, he advised not telling her where I was taking her, he even advised getting a bottle of vodka, pouring it out, filling it with water, and having some orange juice, and if she started asking for or demanding a drink (she wasn't fully psycologically detoxed at that point), I should get out the "vodka" and orange juice and pour her a screwdriver in front of her rather than argue with her about NOT drinking. He was RIGHT! Because she had some urinary problems at the time, we stopped two overnights at motels. And evening with her was time for cocktails! Was it EVER!! I was so glad the doctor prepared me. She never realized she wasn't drinking alcohol. When we arrived at the nursing home and went in, she caught on pretty quickly but it was too late. She had a metal adjustable medical cane and was swinging it in the air threatening to hit anyone who came near her. We backed off until she calmed down then we distracted her and took the cane away from her.

Of course it was against her will to be there. It's most likely ALWAYS going to be against their will. After she calmed down and later with the buspar, I was able to take her out for meals and movies which she loved. After my dad died and my mom had some very needed and put off orthopedic surgeries, and after my aunt was 4 years in the nursing home, I was able to bring her home to live with me for the last 2-1/2 years of her life. Totally changed my life but certainly improved the quality of hers.
Helpful Answer (3)
Report

Yeah, sure do.

I gave her a hug and a message - at least if she checks her e-mail she'll notice we still care even if we didn't just totally agree with her the way she probably expected. :-)
Helpful Answer (3)
Report

Vikki - if she checks, I just hope she can absorb the reality. It's doubley difficult when someone doesn't spend 24 /7 with the patient, and doesn't see or hear how the memory is shot and the discussions and questions are repetitious. Or how they often cover of confusion with anger and piss-offed-ness. Even when I see a smattering of it, denial is a peculiar critter and, as they say, I don't mean the river in Egypt ("De Nile" for those who have never heard that joke).
Helpful Answer (2)
Report

AND ... I think frustrated's follow up post on 2.08.12 kind of told the story. In my experience, and my ex brother in law had FTD (I didn't take care of him but I can unicate with his sister), FTD is one of the most insidious forms of dementia. And they can fly off the handle much quicker then other patients who are a little more complacent longer. My ex,BIL's family moved him from California back to his home state and set him up in a condo because he seems like he could handle it. Even let him drive his big GMC SUV. But it was a big whoopsie because in very short order he was getting lost on the roads near his home and he was picking fights for his neighbors. They were forced to institutionalize him in a locked memory care because he was a danger to other people and he couldn't be convinced to stop any of his behaviors. He lasted a couple of years more and that was it. Sometimes they will live longer at home, but not safely and not necessarily healthfully, and at great physical, mental and financial documents to the caregiver. It's a tough one all ways around.
Helpful Answer (1)
Report

corrections ...

but I COMMUNICATED with his sister

set him up in a condo because he SEEMED like he could handle it

and he was picking fights WITH his neighbors

great physical, mental and financial DETRIMENT to the caregiver
Helpful Answer (0)
Report

CarolLynn, I looked into the Buspar - I thought it looked familiar. Mthr is unstable on her feet, and it can cause dizziness, thus we decided against it. Otherwise it sounds great, and we may need to use it in the future.

I just received the bill for last month's drugs from the Long Term Care Pharmacy which packages them for am/pm doses in little cups with the day and time on them. Nice service, unless the correct drugs are not in the cups.

Mthr was only given doses of Zoloft the first week of August, and it was not restarted until this week. No wonder she was out of her mind again. We had great success with it the first month, and she was a totally different person (much nicer!). Without it last month, she was simply delusional and angry.

I don't know if it was the pharmacy's fault or the nurse who called it in. I am leaning towards the nurse, because she seemed like a slob. I'm going to avoid seeing her doc in the future. I also have a letter in to the pharmacy, but I am sure they will deny responsibility. Ugh.
Helpful Answer (0)
Report

Last week, while she was still off Zoloft, she was calling more people than ever. She sounded completely convincing on my machine and to our office assistant that she and a friend had come by to Brenda's place to see what she had done with it, and now Brenda won't let them leave. She can see her car in the parking lot, but Brenda hid her keys. She's going to have to find a way to escape, or we can come by and get her out of there. I completely see how someone could be convinced that the memory care unit person is in their sound mind! It's hard on everyone.
Helpful Answer (0)
Report

Hey, surprise, thanks so much for updating.

Look up confabulation and confabulate. I think that's what your mom is doing. Many dementia patients in the early stages when they still SOUND coherent will fabricate stories. They don't know they're doing it, they believe the stories themselves. If they say it often enough, it becomes ingrained as if it were totally true.

About the buspar - the doctor prescribed 30 milligrams per day, 10 milligrams 3 times per day. My mom was unsteady on her feet after her joints surgeries and she also had an ankle fusion as well, which means her ankle didn't flex. I had a pill splitter so I split one 10 milligram buspar and gave only that to her for about five or six days. When she showed no signs of dizziness, I gave her 5 milligrams twice a day. And etc. until we got to the 30 milligrams and never had any hint of dizziness. Thought you could talk that over with the doctor if your mom might need it in the future.

I'm glad she is better now back on the Zoloft. It's pitiful not to mention negligent and incompetent when a person's medication gets messed up for several days. Never any real excuse but it does happen, sadly, and everyone pays the price.
Helpful Answer (2)
Report

Oh, I am irate with the nurse and pharmacy. Negligent, oh yes. But I have to look forward...

Mthr is still in her delusion that her own mother is alive and that the in-laws are against her (they have all been gone for at least 30 years now). Confabulation fits too, but her immediate problems she has been calling about - even the calls themselves - have stopped now that the Zoloft is in her system.

I can't imagine what it would be like to think that you have been kidnapped. If she still believes it, she is much better able to handle the anxiety and sadness on the Zoloft, and for that relief for her, I am so thankful.
Helpful Answer (0)
Report

It seems awful, but it is probably easier to think you have been kidnapped rather than that you have a terminal disease that is inexorably taking your mind away from you in the process. Confabulation is just an honest brain trying to fill in the gaps to try to make some kind of sense of a confused and confusing situation!
Helpful Answer (2)
Report

I was wrong! Yay, the pharmacist said that they had the date and # wrong on the bill, and she won't even charge me the extra $3 for the pills issued! So mthr has been on the Zoloft. My therapist and I have wanted to see her on Zoloft for YEARS and it did make a difference to start with. She has been severely depressed for decades, and I feel like it can help her.

The manager of the memory care facility confirmed that she had been receiving Zoloft, and the manager has been the one behind her making calls to my house and the office. Apparently mthr has been beside herself thinking her house is across the street, and manager is using the calls as a way to calm her when she is becoming physically violent and trying to escape.

It looks like it's time to revisit buspar. Can one take the SSRI at the same time? I'm going to have to look it up. And what about sleep? Will buspar knock her out, or do I need an additional drug for that? Doc prescribed Lunesta the first time, but that was $2 a pill copay. Is that the only option? Lots of questions to leave on the doctor office machine tomorrow. If you have experience with these, I am all ears. We leave for Parent's Weekend next Tues, so I need to get these straight asap.
Helpful Answer (0)
Report

(I don't know why mthr has not called since last week since the meds were the same, but the written report for me is not very cheerful.)
Helpful Answer (0)
Report

Not necessariy a bad strategy, but manager should have advised you in advance about the calls you were going to get! For most people Buspar would be fine along with Zoloft, and possibly by giving Zoloft in the AM and a higher dose of Buspar in the evening, sleep will be better regulated, but Buspar is not always terribly sedating.

At some point, my mom became unable to place phone calls any more. She just could not remember the sequence of how to push buttons on the phone (a Jitterbug) and complained that the phone was not working right. I left the phone withher for a while after that, maybe because I thought she would notice it was gone and worry, or that having it was a reasusrance...or maybe it was just too sad to accept right away that my mom had lost that ability...
Helpful Answer (0)
Report

Sister is hearing one side of the story. Obviously there is dads, daughters, physician, and current care team's to be considered.

Sounds to me that she is in right setting. If you (sister) want to visit, take her on outings, have dinner together, etc. then you should do so or be able to do so. If you intend to stir up trouble by encouraging her to have other living arrangements, then unless YOU ARE WILLING AND ABLE to care for her full time, then you should respect her immediate family's decision unless there is clear neglect, or exploitation of her condition.
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter