demands to leave facility

DHVT

Last time I posted here, my wife (moderate-to-severe Alz) was living at home and I was the 24/7 caregiver. Doctors, friends, and relatives all urged me to find a good residential facility that could take care of her properly and let me recover.

Until recently she's been doing well there, but lately she insists that she doesn't need any care and expects to return home in the next month. No rational person would agree with that or support it, and I doubt either of us would survive it.

I have her signed POA. Her internist and the head of the university's memory program are all well aware of her condition.

My question is this: what is it that actually prevents her legally from carrying out her demands? She hasn't been formally declared incompetent, so I don't know if the POA would be my ultimate defense. Or does the facility have the right to keep her and treat her? 

It seems like a simple question, but it's been surprisingly hard to find a simple answer. Even my lawyer waffled a bit when I asked him.

Thanks!

terei

I think the question is whether she has the capability of organizing a move.  Can she locate + hire an attorney to help her? Can she use a phone to the extent of calling a cab or uber + then where is she going to go? She can demand all she likes.  Is she even aware of ‘months’ or seasons at this point? Are her demands only of you or is she trying to enlist others to help her? You may be the trigger for her demands + she doesn’t bring it up to any one else.

When my mom wanted to leave her MC, I would tell her that the situation was the best I could come up with + if she came up with a better plan to let me know. Not just ‘I am leaving’.  

As it is, all you have to tell her is that her DOCTOR says she is to remain there until her condition improves + that’s the end of the discussion.  

If her phone is a problem, they are easy enough to disable.  The staff will call you with a true emergency.

M1

DHVT if it helps you at all, my partner insists she's leaving for Texas if not every day then every other day and certainly every day when I am there (this after ten months in MC).  So I just would not take it too seriously.  If you have the POA, you should be fine.  My partner told me yesterday that she expected me to be there today to pick her up.  but of course by today she's forgotten all about it.  As terei said, no matter what the verbal threats, the ability to actualize a change is probably long gone.

DHVT

These comments are extrememly helpful! A totally different perspective from the one I'd had, which was based on things like legal paperwork, court orders, testimony from doctors, etc. 

The simple fact is that she couldn't do the first thing to move herself. And she won't find anyone who agrees to her plan. In fact, I think the liability would be huge for anyone who did try to sneak her out.

eaglemom

I'm going to try and put a slightly different spin on this topic. When I had to place my mom because of her Parkinson's to say she was not happy with me would be an understatement. She was in an Assisted Living facility in a small town. She knew every person there - the other 13 people. 

I had her room as nice as possible, everything to make it as "homey" as I could. But she wasn't having it. My calm cute mild mannered mom threatened me with "if you leave me in here I'll never leave my room, every." I believed here, but I also knew her - she's a social person. So I simply said something to the effect: do you think anyone of the residents wants to be here? No they don't either, but they are making the best of it because its what's best for them. I'm very sorry you can't walk & be home. Now, I smell dinner & it smell delicious so I'm going to the dinning room, I'll be back later. And I hadn't made it to the hall until she called out she was hungry. I stopped & said so you are going to leave your room? She said of course and we never discussed it again.

I realize this situation is totally different than a memory unit. But what I found was, when you sit at the tables each one of the residence would mention home in some form or fashion. They did all want to be home. Yes I've been in several memory units and heard talk of going home. I think home is something of a safe spot. A security, and something they all can talk about. Its a memory that they have held onto and keep. 

I hope that makes some sense. How our LO looks at home and how a caregiver looks at home might just be two totally different views.

eagle

mommyandme (m&m)

I’m not sure if the residential facility she’s in is locked like a MC would be.  I suppose if it’s not then she could essentially leave. If there’s a worry about her leaving and getting lost and all the scary things that might happen if she does leave then MC may be what she needs.

DHVT

I suppose it's very common for Alzheimer's patients to swear there's nothing wrong with them, and that they have no need for care. I hear this a lot from my wife, and it shows how lacking in insight (and empathy) she really is. 

I read the POA again, and it probably wouldn't make a difference because it's only for financial decisions. Anyway, a lawyer wouldn't let her sign additional documents at this stage. 

So it's all quite painful. I did a huge amount of research on the best place for her, and it is one with a very good reputation. The staff, overworked as they are, do their best to make her happy and keep her calm. 

Right now, part of the problem is that's it's winter and there's lots of snow and ice on the ground. She wants more walking than she's able to get because of the weather and the tight staffing. So she probably has what we call "cabin fever."

BTW, the front door is locked and, since she was able to slip out in spite of that, she wears an ankle bracelet that would sound an alarm if she left.

Well, the director of our university's memory program, where she's been evaluated every six months, has just started her on a low dose of risperdone, hoping to calm her a bit.

Jo C.

Seems there is always a new challenge no matter how nicely we try to set things into place.  Would it be more comfortable for you if the two MDs who know her condition, the clinic MD and the Internist, would write letters stating she is no longer competent to format her own plan of care and no longer competent to conduct her own business?   My mother's doctors did this and it gave a good grounding for a "just in case" sort of issue. 

I am sorry you do not have a DPOA for Healthcare; but did you have a Trust done?  If so, you may want to give it a read as many Trusts will have a section setting forth as to what would happen if one of the individuals in the Trust was unable to manage or conduct their affairs.  Ours has that section. 

Also; if your wife seems to have "cabin fever" and is unsettled because of that, perhaps you can meet with the Activity Director and other individuals who conduct oversight of their residents and ask them to ramp up her activity and engage her or perhaps even have a staff member walk with her inside the halls or see to it she gets to exercise programs or even the simple game and activity gatherings.

Also, if her behavior has suddenly and persistently changed from the usual and it has become a new issue, it would probably be a good idea to have her checked for a "silent" urinary tract infection. Those UTIs are called silent because there will be no complaint of pain or burning or even frequency, but there can often be a significant change in behavior to the negative side of the ledger until the UTI is treated.

Sending best wishes for things to settle soon, let us know how it is going, we will be thinking of you.

J.

DHVT

Thank you for the suggestions, Jo. There is a trust document and I’ll check it. I’ve also emailed.the head nurse about a UTI test.

What did you do with the doctors’ letters - file them away for possible future use, or give them to someone?

Jo C.

My mother had a behavioral variant of FTD at the same time her husband, my step-dad, had Alzheimer's Disease. They also had other health conditions and at various points became frequent flyers to the ER.

I kept the original letters as well as  the DPOAs in a very safe place but made multiple copies of the DPOAs.  I rarely had to present the DPOAs, even when admitting to a care facility, and even the bank did not ask for the letters, but I had been conducting their business for some time.

What I did do, was to keep copies of the DPOAs and letters of lacke of competence in a manila envelope in the car.  This way, if in the ER or admission to the hospital, or if anything else arose, I had them with me. HOWEVER; I permtted the ER, etc. to make copies of the document, but retained the copy I gave to them to copy.

NOTE:  I gave copies of the DPOAs, etc. to the doctor's offices and to the ER at each ER visit, and also when admitted to the hospital.  One would think these items would be retained in  the medical record or somewhere, however, it was astonishing that never did these entities have a copy of the DPOAs I had givent them them multiple times, so having copies of documents with me in my car really came in handy for prevention of problems.

J.

DHVT

A few hours ago, my wife called me to say that residents were being “taken away in trucks” under the supervision of a marshal. Also, that the staff are trying to poison her with her pills and something green in her food…so she’s refusing to have either.

So the delusions and paranoia are extreme now. After talking with a nurse who knows her well, our suspicions were raised about her paid, freelance companion, Wendy. Based on things Wendy has said to me, I think she’s very anti-drug, and it may be that she’s raising doubts in my wife's mind that are ballooning into full-fledged Auschwitz scenarios.

The facility also worries that my wife is edging toward violence. She shoved the nurse I spoke to, and has done a lot of yelling and pounding of feet.

Well, the facility is going to contact the head of the memory program for additional guidance. Meanwhile, I’m going to tell Wendy to hold off on future visits until I feel it’s OK (maybe never, I’m thinking.)

I have a few things to bring tomorrow, and she’ll want to see our dog. But I’ve told the nurse that I’d like someone on the staff to be with us while I’m visiting. 

Mckangel

DHVT, I'm so sorry you are going through this.  My mother has been in AL since early November.  Just recently, she has begun calling me and saying she will leave if she has to walk out.  She has no ID, money, and no sense of direction to find her way to her house.  I have had a little bit of success with re-directing the conversation.  Yesterday, she called and I chose not to answer the phone.  She claimed she was sick (does sound like she is getting a cold) and hadn't had her meds, and hadn't eaten.  I called the facility, and she had not gone to the dining room for breakfast or lunch.  She has a mini fridge with Boost and snacks, so I know she has food there, and I asked the staff  to take a plate to her room last night. It is not the first time she has accused them of not giving her meds;  I have been told there have been several occasions she has asked for them a couple of hours after they were administered.  She is very angry with me for "putting her there" but tends to bad mouth me to her friend/sitter and vice versa instead of to my face.  It's disheartening and exhausting, and emotionally draining.  Just wanted you to know your not alone.

DHVT

Mckangel, I could almost copy and paste your paragraph to describe my situation!

One bit of good news I just learned: I do have a medical POA for her, but in Vermont it’s called an Advance Healthcare Directive and I’m her healthcare agent. I knew I had that. 

So I guess the legal/medical systems are on my side, if a bit confusing.