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Going through life with an aged loved one with dementia is not for sissies, is it? Our family has made several attempts to try to make my mother's life easier and more fulfilled over the years, especially since her last divorce. Family outings, get-togethers, barbecues, visits to her home, etc. We have tried to encourage her to get together with friends/activities/church/Senior Center, etc. over the years and she has refused it all. She has only wanted to get together with me (her only daughter/child) and my immediate family, or sit at home and watch tv and care for her plants. She has been very seclusive over the years. Poor thing has a hard time of hearing, arthritis, high bp, a stroke, etc. Two dysfunctional husbands, one abusive Psychiatrist/Marriage counselor (my dad) & two divorces. We tried having her at her home w/caregivers & family providing 24-hour care, but she demanded we all leave and let her care for herself. We took her to an AL; she was miserable during her stay; refusing to get involved there. I took her out 3x's week to beauty shop appts., outings, drives, her home for a few hours so she could go through her things...then she fell 3x's at her AL and broke her back, and is now at a Rehab/Conv. Hosp. I just posted on this site recently that things were starting to look up, but just received a call from the Rehab/Conv. Home that mom that in a lucid moment stated to the nursing staff that she was ready to go home, she didn't care what anyone said, and if needs be she would take me to court and try to get the POA lifted that she set in place 10 years ago. What to do? Give in to her and hope it "all works out" and try the caregivers AGAIN, try to find a locked facility so she doesn't escape? ask the doctor to try a new medication? Safety is our utmost concern. At this time she does not listen to the Skilled Care Nursing staff and tries to get out of her chair (it has an alarm) and/or her bed. If it weren't for her roommate telling on her/the alarms going off, she might be in dire circumstances. Some days I feel like just giving up, but most of the time I feel like I should be the dutiful daughter and always do what is most beneficial for her safety. Are there any doctors/nurses/legal advisors to help me in this situation? I'm trying to balance my life as a Christian/wife/mother/grandmother/caregiver/teacher/ person with frequent neck aches and am having some difficulty with this constant weight known as my demanding cognitively impaired needy mother. As my husband often quotes: "Our hearts are restless until they find their rest in God". This is so true with my mother. If you are a prayer warrior, I would appreciate prayer tonight as I feel at my wit's end and a bit discouraged tonight. I know many of you can relate. If we give in to my mother's demands, I'm concerned that we are going to start this vicious cycle all over again if she finds an emotional and/or liberal social worker who believes only in "patient's rights". The nursing staff suggested having a conference together, and then with my mother and our family to try to come up with some possible options. Will this be a good thing or not so good thing to do in the long run. Any input? Thanks. .

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Hopeful - 10 years ago when your mom signed her POA to you, your mom trusted you to use your judgement during the difficult times, so here they are. If the nursing home is telling you that she wants to change things - I wonder why, it's really unprofessional unless they're doing it in a manner that you don't feel coerced or threatened. If they are suspicious of you for any reason, they should call protective services and let them deal with it. If they are telling you just to report on your mom's general requests tell them to shut up because it's not likely to change. Social workers at my mom's nursing home stopped calling me because I made them tow the line. I gave them hell because they lost her clothes, because they left her alone in a dark room with the call button out of her reach!!! They began to call my brother because my mom said she wanted to see him. He told them to call HIM not ME when something went wrong. Long story short, they called him to repair a wheelchair owned by THEM and he didn't know enough to tell THEM to fix it. She ended up in the hospital with a broken sacrum, excruciating pain and nearly died in agony. I had to threaten to sue them if they called him with issues again. I'm her POA because I take care of things and make them DO THEIR JOB. They don't like it but I don't care, it's my job to help my mom and I tell them all the time: "What would YOU DO if it were YOUR mom?" They can't argue with that...

Your mom is lucky to have you in her corner and as Eddie says, a change in PoA is not likely to happen because a judge would likely have her evaluated - at HER expense - and rule to leave things be. Often this is a phase they go through. My own mom did it for about 6 months - she was with it enough to realize that she wanted to go home and I was using my PoA to make decisions but TOTALLY unrealistic about her ability to take care of herself. They often think that if they could just get home everything would be as it was when they were able and independent.

Another tactic you can use to help convince her to stay in rehab is to put it all on the doctor. I tell my mom over and over - the DOCTOR insists you must be here to get stronger. Remind her that the house is too small, the bathroom or halls too narrow to accommodate a wheel chair. It's all about her safety - she's got to be someplace where she's SAFE. She can't argue with that either.
Best of luck to you. This is a hard job but she would not have asked if you weren't up to the task.
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Holy Cow, Hopeful2011! I never heard of 20:1 staffing, I'd think that might be OK for an independent living center, not for assisted living! You absolutely are supposed to be notified of falls and injuries, without fail. And you can ask to be called for all medication changes and try to get it on her record prominently, up there with the allergy listing, that she had adverse reactions for higher doses of whatever medication it was that may have contributed. You still have to be vigilant. I truly made a pest of myself asking for updated meds lists on my mom, and of course at times things got changed that no one told me about, at other times, I got called at 11 PM to be told they started a topical antibiotic for a sore toe. (For which I always thanked them and NEVER complained.) I'm glad she's in a higher level of care at a better facility!
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Jeanne Gibbs--you are right. A fall CAN happen anywhere. My complaint is that I was not notified about my mother's third fall at her AL until I visited her 3 hours later. She was also given her meds (one of them had a dosage increase without my knowledge). This was unacceptable and I moved her to a place that is safer and better suited to her needs. I think when asked, the AL staff should've admitted that they no longer had the staff/resources to care for my mother's newest needs instead of give me assurances and not follow through with safe care. We need to be diligent to visit at various times of the and night and be sure the right care is provided. Thanks anyway. I do realize that falls happen....but they should be followed through with proper notification.
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Thank you for your answers. We did have the care conference and the staff (the nurse and the social worker) were very supportive and backed me up. Thank you for taking the time to give all of the above suggestions/information.
Though I have not seen the documentation from the physician, they did tell me that he wrote that my mother was not competent to make her own decisions. I asked for a copy, so will put it in the files.--Thanks again!Hats off to the staff at the Rehab/Conv. They are much more involved than the staff at my mother's AL. A caution: We really need to be careful to assess our parents and get other's input as well. Sometimes we only want to see them as we WANT to see them. There is a great article in the Reader's Digest this month about assessing our parents. Looking back, I wish I had gone with my gut-feelings about moving my mother to a Conv/Rehab BEFORE she broke her back. The ratio was 20:1--just not enough hands on care at the AL. Also--we should be checking the medications every so often. My mother was given 150 mg more of one of the meds without my knowledge. Just a heads up. God bless you all for making this site happen!
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1. You have MY prayers.
2. That wasn't a "lucid" moment.
3. You probably should get guardianship if your goal is to keep her safe and to prevent all her funds being misused and not available for care. I've read stories of people with dementia who before being firmly diagnosed, gave POA to the wrong person, and consequences were not pretty. If the advantages of having that burden relieved from you as suggested above sound good, making sure there is a court appointed and supervised guardian might be reasonable, but realize that removes your say so and you might find yourself in disagreement about her best interests. Guardianship is a serious repsonsibility, make sure you can do all that is required.
4. A team conference with staff to figure out how to protect her and at the same time give her some choices and some degree of enjoyment of life would be a great idea. The staff SHOULD be "helping" with this - Helping in quotes because actually that their job to work for her best interest. And if she is needing bed and chair alarms, unable to remember to press a call button to get help, they will probably also reassure you that going home is not an appropriate option. The doctor will probably give you documentation for incompetency to make decisions and manage her own affairs at the drop of a hat. Unless you think they are making her wait unconscionably long for help if she does call, or that her unhappiness with every place is because every place has treated her badly, she is not reasoning well enough to control her own behavior or make decisions that make any kind of sense. It is hard to see this and admit it for a loved one, but we owe it to people who have lost competency to step in and protect them when they cannot protect themselves. People do not repeatedly subject themselves to the risk of falls, particularly those with broken backs to start with, unless they have lost reason and judgement in a major way. Think about what YOU would do, or most little old ladies do, if they do not want to be injured or reinjured - they walk carefully, they use walkers, they comply with reaosnable requirements if recovering from a spine fracture. I'd be pretty suprised if mom's behavior could really be framed as that of a competent adult who is decidng to take risks because the benefits outweigh them.
5. As the dementia progresses, she may mellow out...or not...and always, it is good to make sure there is not a UTI or other infection, illness, or medication reaction that is making her worse.
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Thank you all for your wise answers. My husband and I plan to go out to dinner tonight and pray & discuss our options. Hmmmm..that Long Island Tea sounds wonderful! I'll have to ask one of our daughters about that. She just got back from Long Island where she was a nanny for triplets! :) She never mentioned a special tea there. Many of us are thankful for this wonderful site--thanks again to the person (s?) who made this site happen.
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If your mother wants to take you to court, let her know that it is her decision to do so and refer her to the director of the rehab facility. Also ask to speak with her doctor to discuss what she is wanting to do and to ask whether the doctor deems that she is mentally competent or needs further medical evaluation. Then, let the chips fall where they may. It's all you can do to try to protect your Mom's best interests.
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A person prone to falling can fall anywhere, even with an attentive caregiver just feet away. Places with 24 hour staff don't have a staff member watching each resident 24 hours.
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Sher sounds EXACTLY like my mom...in every single thing you wrote. If she is incompetent then you will not be removed especially if she had you down to be her POA in her WILL, which my mother did.
However, I am now the conservator of person and estate, she has been deemed incompetent by a licensed geriatric psychiatrist, but the PROBATE judge is ignoring all the documentation, and told my mom, that: "if you ever want to remove your daughter, just send a little note to the court and we will appoint a third party." I am even in her WILL to be the conservator.
The system is terribly flawed and obviously imperfect. If she removes you then just image how stress free your world will become.
You did your best just as I did. If that is what she so desires, then let her go home and she will fall flat on her face all over again. Then, you can go back to Probate and tell the Judge that his/her decision has now made her life worse and shortened her lifespan.
I am surprised she fell in AL. The place my mom was in was amazing. She can not get up without help, so she never fell there. She did fall at home 3 x's which is why I put her in AL. The care givers were too busy watching "The Price is Right".
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Hope, I think Ed has given you some very realistic options. One of the most difficult steps for caregivers to take is to release control to those who can find answers for us. Your mother truly needs a competency evaluation. Ask for one if you can, and then try to back off some. It is easier said than done, but your mother may need to miss you and the things you are doing for her. Take care and you are in my prayers. Rebecca
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HOPE:

Out of fear, it seems you're driving yourself crazy trying to anticipate her every move/thought so you can be prepared for it. If she wants to be in control of her life despite her mental state, let her. If she wants to take you to court and remove the POA, let her too. Chances are the court will order an evaluation to determine how competent she is and let the POA stand. In the meantime, make a pitcher of Long Island Iced Tea and relax. It's hot out there!

-- Ed
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I guess the first question is the one cmagnum asks. Is she competent?

Competent adults are allowed to make their own health care decisions, even if the decisions are unwise. We can decide to smoke or to live on junk food or to refuse to take the medications prescribed for us, to sit on our butts all day, to take up sky diving or have unprotected promiscuous sex with strangers. Our children may be horrified, but as competent adults we are allowed to make our own mistakes.

Adults who are incompetent to make their own decisions must rely on someone else to decide on their behalf. But deciding doesn't always make enforcing the decision easy or even feasible.

I think that having a care conference with the staff and the family (would that be you and your husband?) could be useful. It can be helpful to have objective, non-emotional professionals involved in the discussion. But I'd also consider how objective these particular professionals are. Do they have anything to gain or lose depending on decisions made?

My mother was in a rehab facility with an injured arm a couple of years ago. At a care conference the professional advice was that Ma should be discharged to a nursing home. They listed their reasons. And then they mentioned that it just so happened that their nursing home unit had an opening. They took us on a tour. Hmmm ... I'm not saying that they'd base their recommendation on what was best for their income flow, but that did change their status as "objective outsiders" in my mind.

Best wishes to you as you struggle with this difficult situation.
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Has her doctor ever evaluated her competency to either be or not be able to conduct her business in a business like manner? If not, the doctor where she is could do such an evaluation. It would be helpful if the doctor would write a letter to that effect and the reasons for such an evaluation and have it notarized. If she is not competent, then she is not competent to take your name off of the POA nor take you to court. I gather the above is the case since toward the end, you mention that your mother is cognitively impaired. While I can see having a family conference with the nursing staff, I'm not sure it would work with your mother. I think at this point, you must take charge because it sounds to me like she is playing an emotional blackmail game which uses fear, obligation and guilt to get her way. BTW, what does your husband think the best course of action is in this boundary breaking drama?
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