Aging Parents and Elder Care logo

Support Group

I admitted my mother to a home about 2 months ago after a series of bizarre events.  She has been diagnosed with early to mid dementia, but has a history of being "off" (slightly crazy) anyway.  I knew the day would come where I had to take care of her to some degree it just went downhill really fast.  She is only 71 by the way.  She has no money except social security and my husband and I have shelled out a lot of money helping (bailing her out) her over the last 2-3 years.  I am her only surviving child and all of her family is out of state, so the decisions fall on me.  I do have power of attorney which I got a couple of years ago.  Here is the big issue:  My mother does not think anything is wrong with her, now or ever.  She is insisting on leaving the nursing home and I keep telling her she has no money and that she needs to be there.  She has now refused to take her medication and is panicking and desperate to leave.  She says she will just leave and be homeless since I "won't help her".  I'm at my wits end.  She calls me constantly with her "plans" to leave and I feel guilty and second guess myself all of the time.  The bottom line is, she cannot live alone and I cannot have her in my house.  We have never gotten along, I have an 8 month old baby, and frankly, I would lose my mind.  She has no money for a retirement style community and cannot be trusted living alone anyway.  How do I deal with her?  Bottom line, I just wish she would accept where she is and let me have my life.  She has manipulated and held us hostage for too long and I have my own family to think of.  I love my mother, but I really don't like her.  I want to help her, but she makes it almost impossible.
Quote 0 0

Yes, she needs to stay there.  That said, are there any group homes she could go to/ afford?  (If she is able to be in an AL type of environment).

Quote 0 0

I haven't looked into group homes, actually.  With her financial situation, I thought the nursing home was my only option as it was covered by Medicare (she is Medicaid pending) and social security.  I will look into something like that, thank you.
Quote 0 0
The NH should have a social worker (case worker) that might be able to help you come up with a plan based on your legal clout.  POA really is only helpful until disability.  Then durable POA comes into play.  Here there is a general POA with a last paragraph stating that it will endure after disability so it fits the whole shabang. 

Your mother should be officially diagnosed with a disease that causes dementia, or have a medical condition that interferes with her ability to communicate (coma is one).  I hope that ESQ stops by to clarify some terms.  It all can vary from state to state. 

Here, if a person knows who they are, where they are, and can say NO,  laws involving abduction (if she is transported against her will), or unlawful detention(if she is not allowed to leave when she says so  may come into play.  That has created more than one nightmare.  You probably should speak to a lawyer in your area that specializes in elder matters, so you can find out exactly where you stand .
Quote 0 0
Wendy -- is there any chance that she would be pacified with "therapeutic fibs"?  Maybe if, instead of telling her that she has to stay where she is, play along with her desire to leave.  Make a list of what needs to be done, talk about other places, and tell her that next month when you have more time you'll get started on X Y or Z phase of it.
Early to mid stage is hard because you can't count on them forgetting what you tell them!  So if she's likely to remember and start acting or haranguing you about it, then it might not work.  But if she just needs to be calmed down in the moment, maybe it would help.
Also, have you talked with the NH staff?  They might have some ideas, as well.
Quote 0 0
There are roughly a zillion configurations of care that can be put together to make it possible for her to leave the nursing home, if she insists.  I really think that you (and possibly she, depending on her condition) need to discuss what's possible with a social worker at the nursing home.  Or call the local Council on Aging or whatever its called where you are.  If she's medicaid eligible, then lots of doors open for home care.  Of course, she has to accept the care.

Above all, do not accept any sort of guilt or other burden about not wanting her in your home.  Rather, be grateful that you are able to assess the situation honestly and avoid much greater problems down the line.  And keep posting!  There's nothing like a good rant, and we care what happens.
Quote 0 0
Jane in MA
Does your mother still have a home to go back to? Has she given you any indication as where she expects to go?

I think you can agree with her that if she really feels she has to leave the nursing home care, she can , but she must do it all by herself without your assistance because you disagree with her choice.

Tell her why she needs to stay at the home (meals, housekeeping, laundry, doctor and nurse availability, etc), and then ask her where she expects to get the care and overseeing that the NH provides. And tell her she CANNOT come to live with you because you have your hands full with the baby and your husband would never agree to it.

Make sure she knows you love her but cannot be responsible for her decisions.

71 is so young for her to be going through this. I do feel sorry for her and understand her frustration. My mother was like this when she was slipping down the slope into dementia. She too wanted to leave the AL and then the NH. I just kept telling her I could not take care of her myself anymore and then changing the subject. It's not easy, I know!

Quote 0 0
Hi Wendy,
I'm in sympathy with you! It is very hard to deal with pleasing them and having your own life. It sounds like you have already set some firm boundaries like her not living your home. I can't imagine elder care with an infant and the diverse needs between the two. ... that could be disaster for everyone --and affect the baby.

Looking into other options sounds like a good direction to take. And, once you have the answers to all that, then you can decide how you'd want to best advise your mother. Right now, getting the information makes sense to me, and letting your mother know you are researching is might help her to relax a bit and give you a chance to see what could be done.

Let us know what you learn?
Hugs to you Wendy!
Quote 0 0

Wow, it is so nice to have some feedback on this!  I have a wonderful and supportive husband, but I feel so alone in all of this and it has been overwhelming to put it mildly.  I do have durable POA and medical POA, BC.  My mother has no assets, at all.  We had to pay to get her out of her lease on her apt. because she could not afford it and we took over her car payments and eventually sold it when she became a menace to the road (she liked curbs, a lot).  This was all right before she went to the NH.  So she really would be homeless if she left there.  I truly don't want her to be miserable, but again, I don't know of another option right now.  Anything other than a full care facility, will require my help and a lot of it.  She is very demanding and since she doesn't have transportation, I would have to do all of her errands for her.  I have tried different approaches with her, but none seem to work.  Like you said, Avalon, she is still able to remember all the things she shouldn't...ha.  Lil, I have told her if she leaves it is her choice and she won't get any help from me.  She is just wearing me out.   I feel like she had her chance (and didn't take it) to be happy in life and now it's my turn.  I will reserve my mom issues for my future thereapist, but again, I'm just happy not to feel so alone. 

Quote 1 0
Hi Wendy, i am so sorry you are having such a tough time.  Here are a few definitions that might help.  a DPOA survives your mother becoming incompetent and remains in force.  How and if it may revoked by your mother remains up to the state you live in to define.  The same with the medical POA.

A guardianship would place you in control of your mother's person and allow you to make the decisions as to her placement and care.  Speak to the doctor who diagnosed the dementia and see what his or her input is concerning your mother's trying to leave the nh.  This could be a symptom of the advancing of the dementia since is is not realistic given her finances and condition.  You will need one or more physicians depending on the state to get a guardianship, if you so choose.  Contact an attorney, your attorney not your mother's who will try to oppose the guardianship.  Guardianship is the only way to have any control over her placement if she attemps to leave.

Speak to the social worker and nurse and let them both know about your mother's demands as she may try to wander which is common with dementia and AD.  That is why such units are alarmed so that the elders can not wander, get lost and get in trouble.  Also, getting another medicaid nh bed can be very difficult.
Quote 0 0
Hi Wendy, welcome.

I agree: SOCIAL WORKER. And then, walk away. You cannot become embroiled in this! Your mother is not going to be happy anywhere -- not even back at her "house" (which does not exist).

A social worker can help prevent her from becoming homeless - provided the social worker/case worker actually does his or her job that is (big if).

I would not recommend guardianship, in fact, I would resign as POA. She is uncontrollable. Yes guardianship would give you full control BUT -- now you are stuck with her forever. AND - you are legally bound to look after her care. If you had a different relationship with your mother and if she was a different type of person, and if she did not have dementia (lots of if's!) then I would say differently. But, you will be forever solving issues with her as she tries to escape from each and every scenario.

Get her with a social worker. Then resign as POA. That is my advice. It may sound bad, but I see a lot of red flags.

Quote 0 0

Hi Wendy, wow. I was a very similar situation with dad. No money, no house, no one to help. Sprinkled in with all the other practical day to day living issues with him were varying stages/shades of suicidal depression, weird behavior and creeping dementia. He too, had this delusion of living in my house. For many reasons but primarily to preserve what little remaining sanity I still had, that was not an option. DON'T MOVE HER IN & listen to Beth about the guardianship issue. If she already qualifies for NH care, then that's where she needs to stay, unless you find a lockdown ALF that will take her with the same care she now receives. Many of them do take Medicaid. However, it's true that she won't be happy anywhere and since she's already got dementia....obviously she has to stay in a supervised 24/7 place now. I know how awful it feels and the guilt, helplessness, and sadness can really ruin your life. Try to let it go after you get it settled knowing you have done the very best you could do under these difficult circumstances. I'm thinking of you with hugs!

Quote 1 0
Will I Survive
Wendy, I'm echoing the others to say I'm really sorry you're going through this.  I'm not sure exactly how verbal she is (I gather QUITE verbal, LOL) - does the NH see that she is incapable of caring for herself also? 

It can take 6 months (or more) for someone to settle into a NH.  My mother (she is only 68) has been at the NH for 3 months and every time I go I have the conversation that her house is unsafe (then I mention the burned carpet, the need for someone to be awake when she gets up at night, etc.).  Fortunately for us, it is quite evident that she is incapable of making any sort of decision for herself and the staff at the NH has really developed some great ways to change her focus when she starts on her "home" thoughts.

Quote 0 0
Wendy, stand firm on NOT having her live with you - or even stay with you "temporarily".

It's not safe for her, and it's not safe for your little one. And your baby will be affected by you being under stress.

Some really good and experienced advice here, for the legal aspects and financial issues. Welcome to our little enclave of near-insanity. I always have mixed feelings about someone new showing up - it's good to have a new friend join the group, but on the other hand, I hate to see another person going through the hassles. So, welcome - so sorry to meet you!
Quote 0 0
I am going through this now with my mom. She BEGS me every day to get her out of NH. Compares it to a concentration camp. I know its a good place and havent seen anything to cause me concern regarding her care. I swear im going to lose MY mind over this ordeal! I knew it was going to be hard but this is ridiculous. She needs total care except for feeding herself. I feel like im living in the twilight zone because she cant seem to see what is obvious to everyone else.
Quote 0 0