What do you do about a husband who's family refuses to believe the doctor's diagnosis of dementia?

He is where he needs to be.

You are acting in his best interests. You are upholding the "or for worse" and "in sickness" parts of the marriage vows. You deserve praise and support, not the undermining you are getting from his relatives.

All of this is Not Your Fault. I know that you know that. You certainly did not cause him to develop dementia. But guilt is such a constant companion for caregivers that I suggest you adopt this mantra for a while: "It is not my fault!"

From other posts I know you are strong and resourceful and can overcome each of these hideous hurdles as they come up. You will figure out the cell phone thing. (I think taking it away entirely is a good idea, but you are in the trenches and know which battles to fight.) You have control of his money so he is not moving out. For him to sue you, even if his crazy sister assists him, is so ludicrous as to be laughable. It is not happening. So ... you will continue to fight this one little battle at a time.

I am sooooo sorry for you! Yes, he is your responsibility, but I wonder if you can lighten your load somewhat. Discuss with your lawyer what options might be available. Would hiring a care manager be appropriate and help? Do you need to have the courts appoint someone else as his guardian? Could the lawyer write a stern letter to the interfering sister? Would the doctor put his conclusions in writing?

I have every confidence you will get through this, but I am very, very sorry that you must deal with all of these awful stresses.

Hugs to you!

Thank you so much for your kind words! I have a "To whom it concerns" letter from his doc stating that he has dementia and cannot handle financial or legal matters. I have thought of sending a copy of the letter to his sister, but she would simply ignore it just as he has. So many times he has such a mean look in his eyes when he tells me of whatever "plans" he has. A.L. is charging an extra $100 per month for all of the upheaval he causes. Even though I hate paying an extra $100, I totally understand it and have certainly not complained to them. They have been so helpful and kind, but how do you control the mind of a dementia pt? You don't!! His "lawsuit" as he puts it is pending my completing a form for the atty, explaining what happened and when. I am in the process of completing this form, now. This is the second form they sent; the first was to me, I called and explained the situation to them, they said throw it out don't worry about it. He constantly called them, so they sent the same form to him at AL. When he received it he said: "I don't know how I can fill it out, since I was 'under anesthesia' at the time it happened, I don't know what to tell them." Obviously, he was not under anesthesia; but I then offered to complete it for him which was two days ago. He's now calling them to see if they have received it. I talked with them, they said legally they have to give him the right to fill it out. I told them as POA I will complete and return to them. I informed them he has dementia; she said there may be a 5% chance they will take his case; she doubts it. They work on contingency fees, so it costs them a great deal of money to take a case and they won't do it unless they are very sure that they will win the case. I see on his call log that he has contacted another atty. (he did this immediately after a call from his sister). I'm sure he wants this atty. to sue me for money!!
So many people (my family and friends) want me to divorce. I just don't want to do this, although there are many times when I think that may be the only way to end of this uproar from him. He would then need to find someone else to be his advocate.
I can't even imagine in my wildest dreams what would happen to him if he did move into an apt.
Sorry for bending your ear, but it's comforting to know that someone who understands is willing to listen.

HI Star, such challenges. Family can be such a blessing and such a nuisance! The inability of some people to do what is best for the person always boggles my mind! I agree, take the phone away. If that isn't possible, would it help to remove the contact list? It's unlikely he would recall the phone numbers. My Mom's AL urged us not to get phone service as residents would then call at all hours of the night! The aides will place calls for the residents if the resident knows the phone number. (At reasonable times of course!)

Is it possible to have a sit down with the interfering sister? I am sure you want to rip her to pieces, but perhaps a (relatively) calm discussion of where she sees her brother and how she views his current situation may bring out more info for you.

Those who have never experienced care giving for a dementia person, have NO IDEA that the responsible person must take on the parent role. As you have already demonstrated in your thoughts, you have to do what is best for him.

You don't mention his age. If he is older and his family is older, they too may not be able to properly assess the situation. It doesn't sound like the lawyers should be your biggest worry. By the way, forms can be half completed so you can honestly say you mailed them back.

As you know, arguing with a dementia patient is fruitless and just aggravates both of you. Good luck, we are all here for you.

I agree 100% with taking the phone AWAY. The phone calls he makes and receives are causing SO much of this turmoil. You have to set boundaries with dementia victims. You just HAVE to. You are the "parent" now. Remember, he is not capable of making the right decisions..not only with phone calls but anything that pops into his mind ..like sis encouraging him to get attnys.
Divorce does not sound bad at this point either UNLESS..you have been married a long time and have accumulated wealth together. If that is the case, I'm make sure your attny divides everything equally. Then..let the sister take care of him...give POA to her. She'll learn REALLY fast what a nightmare it is.

My heart goes out to you. It is devastating when your husband, your life partner, no longer cares for your your well-being, in fact tears down your chance for a secure, reasonable quality of life. (good that you have POA). I now have everything in a trust in my name only. The fact that he turns to other people, people who have no responsibility for his actions, to arrange costly and inappropriate living situations for which you will be responsible, is unbearable. I'm have a somewhat similar situation with my husband, however your problem is much more complicated than mine. My husband is now in a nursing home on Medicare and Medical and is willing to stay there - however he ran up a large sum of debt for which I am responsible prior to ending up in the nursing home. I could divorce him, but it seems to me a wrong thing to do. I had one idea for you - why doesn't his sister' put him on her phone plan. That way their lengthy calls would be free.and she could share a bit of the responsibility. Bless you

I understand what you are going though,I am in the same boat. My husband has dementia and says the same things your spouse says, about money,he's fine and it's me that says he is sick and the family thing. I had to quit my job to stay home and become his caregiver.I know when His condition advices he will need to be in a nursing home. Just remember it's not your fault, you are the responsible spouse be strong and do not listen to any one that has nothing good to say!!!

I would get rid of phone. Or at least delete contact list. If he still remembers numbers (does he have them written down -throw list away). most phone companies will block calls to specific area codes or exchanges. The phone calls are causing him undue stress. That's the last thing he or you need. Since you are the one taking care of his needs, it will have to be you to do whatever it takes to keep him as peaceful as possible (and for you own peace as well). Don't know why it seems family members that refuse to do caregiving themselves always seem to cause the biggest problems.

star42,

IS his sister also demented?
[[I don't think you mentioned if she is younger or older, nor what her profession has been, nor what her own health issues are??]]
Seriously!

You are doing a wonderful job, as others have said
--very good!
Do not fear a lawyer--the minute they see his data, they'll leave.
Even a shifty ambulance chaser should take a hike seeing his records.

BTW--if a lawyer sends your Husband papers to fill out,
do NOT do it for him
--this is a small test of his ability to order his mind.
If he wants them filled out, he has to do it himself.
You can offer to mail it for him, and, at that time, insert copy of Doc's evaluation of his mental state.
That helps show the lawyer what's what.

Getting rid of his phone is a great idea
--deleting all numbers except yours, is almost a good idea, alternately.
--letting him have to remember a phone number,
or have an Aide fetch it for him with a phone,
in the hallway,
means Staff keep track of calls,
AND, if he cannot remember the numbers, no calls go out-
-which reinforces that his mind is gone.
Sis then has to call in to the nurses station, and they would get her calls to him.
That is a call-tracking measure, as well as staff can overhear content--in some cases, if the patient gets too riled up on the phone, the nurse must step in, interrupt the call, apologize to the caller, hang it up, and calm and/or medicate the patient.

But a call plan with the sister??
NO.
IF he had that, SHE has control of records, not you.
At least while you have control of the phone records, you can see his call records.
THAT is a damage-control measure--as in, when you look who has been called, and can contact whatever lawyers he has called, and cut them off at the pass!

Sister needs a conference with Doc OR
nursing home facilitator,
and copies of his records showing his conditions.
Sis needs to understand clearly, how things are,
AND:
IF she moves him elsewhere, "Against Medical Advice",
SHE is now responsible for his 24/7 care,
AND
LIABLE if he comes to harm from that change in venue.
FURTHER, sis needs to clearly understand, that IF she helps him leave the current facility, which already has documented troubles caring for him,
another facility may likely refuse him entrance,
AND the present one may refuse to allow him back!
...Which leaves her doing 24/7 home care in her own home.
Is sis ready for that?

IF sis comes to such a meeting, and still insists on helping him move out on his own, and she understands she might be held liable for elder abuse or neglect for doing that....

IF she still wants to do that, you might not be able to stop her,
UNLESS you file a
Restraining Order against her and her family.
That could allow supervised visits, limited days or hours, etc.
It can be designed to fit needs, to protect your husband from them and himself.

Talk with an Elder Care Attorney about this.
You might be able to find one for free through your local office for
Area Agency on Aging--they usually have lawyers volunteer time to counsel elders needing legal help.

Hope you get them put in check fast!
This kind of mess can be wearing, scary, and feel threatening to the caregiver. But I think you have been doing a real good job--keep up hte good work!
{{[hugs!}}}

Thank you all for your support and suggestions!!! His sister is 79, he is 81. The AL he's in is nothing like an institutional setting. It's very homey and casual. An LPN (manager) is in charge, they control and dispense all medications. They do not have case mgrs. or social workers as they do in skilled nursing facilities. I have talked with her re: phone calls; however, I have tried the "no phone" and then he continues to use the office phone or borrows cell phone of a resident. When he does that, I then have no idea who it is he is calling. I gave him his phone when he was borrowing everyone else's. I am so scared of his anger if I remove the phone (guess I'm a wimp). I have put usage controls on his phone, I told him that the usage controls are in place. We have a shared plan; he is close to running out of minutes, whenever I mention it to him, I'm accused of cutting him off from the world. He told me to change to a plan with more minutes, which I could do, but do not plan on it. I check his call log daily; by checking that, I have contacted a couple of attorneys and did damage control, informed them of the situtation, etc. However, I don't want him to know that I have access to the calls, that would produce more anger!!! Until he receives a letter from an attorney and he knows I'm aware of it, I don't feel I can say or do anything. I received a ltr. from the atty. he contacted re: potential lawsuit who declined to represent him and I shared that with him. He now wants a copy of the form I completed, in which I was very brief, did not answer all of the questions and he also wants a copy of the attys. letter. I asked him if he has called any other attys., he lied and said not yet. I know that he has contacted at least 4 other attys. One of them is a friend, I have contacted him.

What bothers me and makes me feel so guilty is that he seems so normal most of the time, except for the fact that he's calling car lots, trying to buy a car, even though he knows he cannot drive and that I have sold his car. Any of the calls he is making that are causing me so much anxiety are all related to: suing the nsg. home/hosp., buying a car, renting an apartment. The manager of A.L. said she really has no legitimate reason for talking with the sister, since she has not done anything wrong that she can prove, with the exception of the trip to the bank when he withdrew money. Now I have protected all the $$ so that's not an issue. She has no prove of anything now, so has no issue with her at this time.
What baffles me is that his memory is fairly good at this point. It's just that his reasoning and judgement are so off. He writes down phone #s and keeps them is his shirt pocket. Any letters he gets are in his jacket pocket and with him at all times. He is very clever and very sneaky and such a liar. I found out after he was hospitalized in April just what a liar he is, and how he was hiding so many things in his car, and had been lying to me for several years. I was told at the bank that he would go to them frequently and have them balance his checkbook because he was no longer able to.
When I hear of people who have spouses with dementia at home, I really admire them and feel guilty that my husband is in A.L. and I'm here at home. Although whenever I go to see him, 4 times weekly, I can hardly wait to leave. Today I suggested he not lay in bed all day and watch tv which is giving him a neck ache (he's complaining about it) and try a chair. He then said "Well, good, I'm glad we've got something to argue about, you always like to argue". Actually, I was only trying to help and do anything I can to avoid an agrument!!! I did what I always try not to do and blew up and told him off and felt guilty the minute I did it.
All the things he does are related to: getting out of there, getting money to get out of there, getting money to buy a car (which he cannot drive). I'm wondering if he were at home, the need to "get out of there" would be gone, but then I'd be scared to death re: money, car, etc. Since he has seemed fairly normal lately, I'm wondering if the dementia is not as bad as it was, but everyone has assured me dementia gets worse, always and never better.
Again, thank you everyone with your kind thoughts and suggestions. Wish I could find some peace of mind.

Not all kinds of dementia are characterized primarily by memory loss. Loss of judgment and reasoning ability is a key feature of some. Do you have a more specific diagnosis than "dementia"? (I can't remember if you've posted that.) And dementia definitely progresses to get worse. But in some kinds of dementia there can be great fluctuations in cognition. Very bad one day, and then seemingly improved the next. Overall the pattern is going downhill, but there may be bumps up along the way.

If he were at home, there is no guarentee that he wouldn't want to get out of there. My husband kept trying to call the sherrif to report that he was being held captive against his will. I constantly wanted to "go home." (He was at home.)

I've kept my husband at home for 9+ years. We had a brief period of belligerence and paranoia. If that had continued I know I couldn't have kept him home. Each case is unique. Each of us has to make that hard decision about what is best for our loved one and for us. You are doing the right thing! You have enough to occupy your worry cells without second-guessing your decision.

Hmmm ... maybe this typo was Freudian ... but it was my husband who constantly wanted to go home, not me. He'd pack a bag and wait at the door for the train to depart. Sigh.

Good you have been able to do damage control by tracking his calls to lawyers.
Keeping your ability to track his calls secret, is the best plan. Unless you tell him, or say something that would give it away, he will never know.
As for papers from lawyers?
You do NOT need to tell him about what you fill out--it only upsets him more, and adds to his anger and determination.
Keep your tracking and paper signing/filling out, quiet!!!
Keep your calls to lawyers, car dealers, licensing agents, quiet!!!

Adding more phone minutes? NO!
"Not in budget"
Phone numbers disappeared from phone list in phone?
Can he remember the numbers, or does he need to ask for numbers?
Can he still look up numbers?
Can he have a very OLD phone book?
Or only enter limited numbers into his phone list?

Can phone be programmed to shut down during certain hours per day?
[[explained by saying "phone company troubles, cell phones not working except during certain hours, like in some other countries--solar flairs, etc. interrupting service???]]

Is he worse after sundown?
If so, can the phone disappear after about 4 p.m.?
["lost", then suddenly appear in morning?--if staff at AL will help out with that]

IF he believes he can drive a car, I wonder if you might be able to do
[maybe with help]
a trip to the DMV/DOL for him to try taking a drivers license test?
My Uncle did that for one Gma,
--Uncle had previously got in contact with the Licensing office, a person there, and told them he was bringing her there
---and to make sure she failed that test.
She was at a "between point" in her Alzheimer's, starting to get belligerent.
So they got there, and she of course, failed the test.
She was able to accept someone else telling her "No license" better than a relative--better for stranger to be "bad guy".

If your husband is trying to BUY a car--he CAN
...as long as he has money to do it.
ANYone can own a car--even without a license...it won't prevent him trying to drive it.

Sellers do not always demand to see a license all the time, either, before someone drives off with one.--unfortunately...
They DO demand to see proof of insurance though.
That might be sticking point for him getting into a car and driving away--you can contact insurers he has used in past, and give them a heads-up to prevent his signing up with them...otherwise, insurers can be greedy, and sign people up without question.

Mom insisted she could drive, but when I offered to let her drive my car up a rural road, she declined.
Then, she talked my brother into helping her buy a 4-wheel off-road thing
--it got delivered, she drove it--up and down that gravel road, all the bumps, potholes made it wobbly
--she made it crawl back to his house, got out, and said "can't do that".
It got returned, minus the unrefundable fees.
Later, she demanded to stop the car so she could see an RV camper
--before I could stop her, she had plunked $700 in the guys hand
--before looking inside to see what a wreck it really was.
...it needed BIG repairs before it could even roll down the road.
It nearly blew up on my DH as he drove it to a shop for repairs.
THAT was our "out" ---The guy played along with us, about how it was not salvageable, and got rid of it for us
--Mom was out that money, but she didn't seem to care.

If your DH has not been thinking about getting insurance and license to drive, he has not been thinking rationally again. He's just thinking to drive...that can be reported to 911, if he tries it.

You really need to be careful about his temper. Some with Dementia's can become suddenly violent.
Mom did.
And a friend's spouse did--they had to put him in an Alzheimer's facility to protect the wife from him. ...and he desperately wanted to come home, too
--anywhere but there.
He could get really angry and combative.
They simply all kept a united front, kept telling him he was where he needed to be, that they could bring holiday dinner to him, instead of his coming home, etc.

PLEASE do NOT feel guilty for his being in AL!!!
You did your best, and the safest place for him is in that AL.
His being there helps both of you.
He is not in his right mind--therefore, he will try to say anything he can to push your buttons and get you angry--best thing to do, is not respond to those!--silence means he has not pushed you, and he will try other things, but you win that round.

If he were at home, he would do same. Really.
Because he is, somewhere inside, trying to find something that feels familiar, something he can find to prove he is OK, and that life is as it was....ANYthing.
That he would be endangering himself or others in the process, means nothing to him at this point.
He is best staying where he is.

You are doing a good job, making sure funds are blocked from his access, keeping him safe where he is.
It can be a lot of work, doing "damage control" as he transitions from how he is,
to when he no longer cares about that stuff,
and maybe just complains of it anymore.
Sometimes it takes months, sometimes over a year, but he will deteriorate further and get past this stage.

And PLEASE do not worry about his threats to sue you and the AL...the staff there is not worried, neither should you be--just keep informing the lawyers of his status, and ---letting them know he is an "in-patient in an Alzheimer's Home".

Keep up the good work!

jeannegibbs--wish I had had your description of other manifestations of dementias, a few years back--might have been able to save some trouble here...didn't know that it could sound lucid....might have been able to facilitate getting Mom into a place before she messed us up.
But I didn't even know of this site then!
Sometimes, one has to lead practitioners to the problem really clearly, or they "miss it"--especially if the patient is poor, and they need to avoid taking on the cost of their care if they can get away with it.

If you have a plan and start acting on it you will feel better I was able to call the cell phone company and cut off his phone or give him one with limits but then you would not be able to access it.Cat you cut down your visits to maybe once a week then you would not have to deal with all that as often. I would see an elder lawyer and explain everything-he or she should be able to help you if you pay a retainer he oe she could write a letter to his sister telling her the facts-that may shut down her willingness to help him-you said the money is protected so let her take him to the bank he can not get any money and after a few visits it will get old real fast for her-continue to limit his minutes . Maybe get yourself a prepaid phone. If you can hold on he may go into the next stage of Demtia and not continue to be such a problem right now he is in the stage where he has lucid days so from what other have said this is the hardent to deal with and his sister may not realize how bad his dementia is at this point because she may only see what she wants to be true-if the lawyer will write her a letter explaining things it may make her understand his actions better and realize how ill he really is and she may back off.

Hi, I agree with everyone, you're doing a great job! You are doing the best u can under the circumstances. I had the same situation with my mom and her brothers, who did not live in the same state. They see her every couple of years and think shes normal and I diagnosed her. I was threatened a law suit too, so I backed off and let them take over. They changed locks, POA, everything! Not sure how long this will last, but, for now it's what I had to do to keep my sanity! Hang in there you have POA, just make sure your husbands family doesn't change that behind your back, like mine did! The only other way to go is to file for conservator or guardian which trumps a POA!

Dear Star 42, I agree with just about everything that has been suggested so far - excellent advice. If I were in your shoes, as POA (medical and financial POA?) you are in charge, and it's a big responsibility, so try not to be wimpy, because it is creating more problems than solutions for you.
I would consult with an Elder Law attorney, show him the statement from the doctor and ask if there is something that can be done short of putting a restraining order on your husband's family. I would flatly refuse to assist with any kind of legal paperwork that your husband initiates - just let him holler and walk away. I would prepare a stock letter for every person/lawyer/company he contacts, explaining his condition (short & sweet) and that you hold the POA, to please disregard your husband's communications, and if any questions, to contact you directly (they will go away) and sign it as POA, and put a "cc" at the bottom with the name of your your lawyer (just for his file copy).
As POA, you can also file a change of address for him at the post office where the AL facility is, and have ALL mail that is addressed to your husband's name, forwarded to your home address. You see, you will now be "cutting him off at the pass" and can now manage the correspondence without interference. Then don't bring any mail to him - you manage the mail, period.
As for your sister-in-law and other troublesome family members, I would remind them that legally they have no say in how you manage your husband's care, and if they don't stop interfering and causing you trouble, you will ask the AL facility to bar them from visits or get a restraining order. I think you really need to get tough at this point - everyone has you running in circles and jumping through hoops - it's madness, and you are the only one who can put a stop to it.
As for the phone, I would get rid of it - you don't need the headaches. You could ask the AL facility to limit use of their phone to one call per day for 5 minutes. If he pesters other residents to use their phones, they will soon start to refuse him. He will have to get used to it.
If any of these ideas seem useful to you, you may want to also confer with your elder care lawyer if you have any doubts about putting them into practice.
Regarding the anxiety and anger issues, I would get in touch with his doctor and he may be able to prescribe something to calm him down and make him more reasonable to deal with.
Good luck, you have my best wishes, and thank you for any updates you care to share with us - even just venting!

Could talking to a therapist help you with your stress? I find the support and advice invaluable.

I just realized I answered this post that was originally dated September 2012. Star42, if you are still on this site, we would love to have an update from you. Hope all is well.

No kidding, so did I, didn't notice the date!