I'm caring for my husband with dementia, and HIS children are bossing me around in our home. What are my rights?

And as soon as you can get him to an assisted living home with a memory care unit. It sounds like he is not being taken care of properly by the sitters. We are now talking about bowel movement in the bed, this type of care is a huge issue now, It has become hard work for you, physical, and unhealthy for all. It is too much for one person like yourself to do, especially with the misstreatment from the "children". It would cost less to get professional help at an assisted living facility that has specific care for him. Then you can peacefully visit and leave when you are ready. This does not mean you do not care. It would be because you do care. What would he of wanted, before he got sick? What do you need for yourself? Please don't destroy yourself also, by trying to be super human.
Check around. I now have my mother at a Brookdale facility and I cannot even tell you how much they have done for her. It has been wonderful. And my mom was at 3 other places before this.

I thought I was until I read your account. You MUST see an attonery and very soon. I'm sure you do have rights and if you/he have a will or prenup take them along for the lawyer to look at. You have care for your husband so go get some help for yourself. Become educated on your rights...if all fails, get out and save yourself.

I know that you once loved this man. And in part you have been grieving all of the losses as well as being bullied. But this is an abusive (mentally/verbally) relationship and situation now, whether he intends it to be or not. I believe, depending on the state you live in that you can still divorce if that is your best option. I only meant it was a threat to use when I posted it. But sadly, I do know a couple who used that option in order to preserve the estate for the surviving spouse. Afterwards, she was able to go onto Medicaid in a nursing home and he was able to go on. Only an attorney can let you know your options. But I think getting him into a place where he can be better cared for - and changing the locks on YOUR home would be my priorities. I think as care takers we try to give what is needed (demanded) and get by on what is left but that just uses us up and we just can't do it for long. My personal epiphany came when I saw my husband making totally illogical decisions that actually harmed his own health in order to not feel guilty about the situation with his father, his father's wife and her children. I'd been going along, going along and might have kept doing it because I think I am so strong and I care about him and they need help - even tho the step siblings were making everything harder and squandering time money and resources (kindest way to put it). But when I looked at my husband and saw how defeated and depressed he was - then a light went on. What we were doing was CRAZY. And when I started thinking about all the things we COULD do if we weren't tip-toeing around the step-bullies then I started putting my foot down about what we would be doing and not doing. Half the issues were resolved after a single 30 minute visit with an elder care attorney. They know how Medicaid, Medicare etc merges with (over rides) wills and estates and how the POA/Guardianship processes work. We were told POA meant that we could act on my FIL's behalf in accordance with his wishes but not make decisions for him. POA means he is still able to have a say about decisions made on his behalf. Guardianship means he is no longer able to make these decisions on his own behalf. Sometimes that is a sliding slope that is hard to define. Guardianship removed all doubt that no matter what the step-bullies talked the FIL/wife into - it was not going to happen unless my husband agreed. There is also a range of POA assignments - from full POA, limited POA, financial POA and a medical POA so knowing what exactly is in place also helps sort things out. You may have more power now than you know if the cousin only has medical POA. I've just seen so many people beaten down by trying to be a care giver that I now strongly advocate that you take care of yourself first - and help where you can. But recognise your limits and what is and is not healthy for you. And I really recommend standing up to bullies early and often. :o) You can do this. Take care.

RSL....wow, you have really written lots of things I have been thinking....I love this man so much, I feel so sad for his condition...but, I am going to have to do something or I will go nuts! I will look into guardianship...I have been his soul caregiver for years! I don't think it's a problem, as long as in our state guardianship trumps POA....The cousin means well, he is shocked that the girls have not been participating because they said they would...that was a condition of husband coming home! He sees they are not, and has told them they should, but...I can not threaten divorce because husband is not of sound mind, but...I can separate, not a legal one, but separation....It may be what I have to do....I could still control the joint account I think in that case....Just lots of thinking and planning to do....I have a good attorney, but I don't know if she is considered eldercare....She has wanted me to take more action, I just was unsure of what to do.....If I get guardianship, well....I will think hard today although he is having a bad day and yelling and wanting to get out of bed, which he can not physically do...he is having delussions big time today....This is just a sad situation....I know so many of you have been through the dementia thing...

Gitanolady, thanks for your comments also....I am the WIFE and have been a faithful good one! It's all about the money now, that's the sad thing! I am going to re-read both your comments and some of the others made before yours....It helps to have others input! THANKS

I dealt with step-brats just prior to my husband passing. They trully gave me the dickens. I finally told them off in no uncertain terms. They kept tring to under mind every thing I was doing to help him . We were married for twenty years so I feel my rights out trumped theirs. He was married to me not them. I would have appreciated their help, but it was not forthcoming. They were to worried about what they were going to get. I did what was needed for my peace of mind and the well being of my husband. Otherwords take charge and kick you know what. Its your home and husband they are only kids. Their rights are secondary to you. GOOD LUCK

Call an ambulance send him to the hospital. Sorry - he can't come home. He is too large to care for at hime with his medical conditions. His dementia is worsening. Keep (or make) a list of other's involvement in his care or visits to the home. Talk with a good eldercare attorney. Seek guardianship - it trumps POA - and if you are the wife, had prior access and current care you should be granted it. Tell the cousin flat out if he fights you - then your husband will be moving into HIS home for the care. Ultimately you can threaten divorce and get your 'half' before it is spent on his care or by the rest of the family. That would force the sale of the home and gain your half of the asset and your freedom. (1) I gain a lot of comfort and control by brainstorming about what I MIGHT do - what I COULD do (2) I rebalance the scales of power when I exercise my right to DISCUSS these options with family who are trying to make my decisions for me. You are only as helpless as you allow yourself to be. It is hard. I used to have to fight the family of my father inlaw's 3rd wife's children for basic common sense things. Once I actually laid out my options as I saw them - including what I knew about some of the financial transactions they were involved in we all get along just fine...

Get an elder care attorney immediately find out what your rights are for your state and your situation, or the stress will never end. Take action now and stop the harassment.

Get an elder law attorney quick, find out what your rights are for your state and your situation, or the stress will never end.

I'm glad you're feeling stronger.....this is a tough job we are doing. We have several hospice groups in our area....had to have one for my mom who passed away the end of December and I plan on using them with mil when that time comes. We have a little bit of an advantage in that hubby is a physician and I am a retired paramedic; hubby is technically retired also, so we are home pretty much all the time, except for our Vegas trips 2 or 3 times a year. Right now we are using a woman I used to work with to come in and care for mil when we go away....she loves the elderly and will do a good job. She took care of her own father for 10 yrs after he had a stroke and having worked with her, she is an emt, I feel real comfortable with her.
Have you talked with the equipment people that originally set up the bed? Maybe they would come and move it for you. You sound like you are at the end of your rope and it's starting to pull at you. Perhaps you might think about taking a little time away for yourself, but only after you have made it clear to the daughters what you expect and have laid some ground rules. Would love to be a little mouse in your pocket when you let them know they are not going to push you around anymore!
Going to call it a night and head for bed......sleep well and have a peaceful night....Hugz!

Thank you Jam....I am glad you have your MIL on the cymbalta and aricept, those are great drugs....Daughters and doc put him on seroquel last week because he would NOT sleep, just manic! I have read some horrible things about seroquel and dementia, you would think the doc and the daughters (they are nurses) would have researched it better, but hey....I kept him from harm for 12 years and sane or not when he signed the POA, he has put his life in their hands now...'and actually he is sleeping, which he needs without all the mania

Your care of your MIL, could you get hospice in to help...We are going to have hospice in here for bathing, routine blood work...they provide pads, all meds for FREE....and they have social worker, and a minister...Ours even has babysitters that will come 2 days a week and sit for 4 hours at a time! Your MIL may qualify! Our hospice even has a respite service for 5 days a month each month...they pick the patient up and take them to their facility, now with dementia and my husbands weight, we won't use that, but it may work for your MIL? You need to take care of yourself also....I know it's hard for your husband to see his mother like this, but if you get down, he will have 2 of you...! You are the soul caregiver? It really is noble of you, but I do think hubby needs to take part...it is not easy for you to see her like she is now either!

I can not move my husband to the room I wanted...His bed they bought is 4 ft wide and weighs 1000 lbs! It would have worked moving him into that room, but now it would be a horribly hard thing to do...I was not home when the equipment people came, but 2 of the daughters were here...the movers left huge grooves in my wood floor moving the stuff in! Do ya think the girls would worry and watch if anything was being destroyed? nope..and, they somehow managed to get some stain on our new carpeting in the "nursery" that is 2 ft around(the same day!)....it isn't comng out....They bought a hoist, bed wheelchair...the bed does all sorts of things but they have never come to show us what to do...the hoist...what a joke! it takes 2 people to use it and really 3....they try to insisit the help uses it, but I tell the help forget about it....If they want him anxed by moving his big body around then let them do it...! It hurts him...and when they tried putting him into the wheelchair he began slipping out! So, they think all the good stuff and never carry through..I know the right thing to do is to get guardianship..and keep him safe for awhile longer....but, it's a double edged sword...If I do that and don't feel he is ready for a home, and then I find I can not take one more minute of the yelling and bad times, well...you see the problem....At any rate, I am going to tell them that I want a call before visitation...you are right, that's my right! Not that they come, but at least they will see me being proactive and not squatting like a pup....

Let me know if you find a hospice near you.....that will help! They give wonderful baths as many times a week as you wish...they are so gentle and kind...our experience with them has been marvelous..can't wait til they begin again!

AND, take care of yourself! I am nearly 60 and am feeling it now....My mind is weary, but tonight I do feel better with your help! I had to get onto my hubby tonight because he was being disrespectful to our help...yelling at them and calling US all dumb, hmpf...I just told him that is not acceptable and not the man I know! He settled right down! He still wanted me to call the help he is in "love" with...I told him you are my husband, she is your nurse...nothing more...but his responses are so sweet....and then he gets misty....jeez this stuff is tough....You rest well too dear.....thanks! I will keep you updated, and you keep me informed as well ....

right on jam ! i agree , kick them bratty in the hindend . let em know whos the boss !
yes move hur hubby s room away from the kitchen lol .
my dad has dementia too , i got so used him hollarin all times , sometimes i dont even hear it , when i do hear it he s asleep , so whatever . dementia theyre mind goes back to a kiddy mind . gotta point ur fingers at him sometimes and a big hug afterwards , sometimes its best just to go outside and smell the fresh air while pa s in the house all waaa waaaa waaaaaaa . he does that for no reason . i made sure he s dry and fed and comfertable then i have to go outside .
one time pa hollar hellppp i need helpppp i hollar back what dad ? i caught him in the corner of my eyes he was shakin his head yes and grinnin so big , he wanted to see how long it took for me to jump up on my feet . ah after i saw that i thought oh my gosh , so he can hollar all he wants cuz im not zoomin fo rhim anymore . im zoomin for me .
u own ur house , u wear the pants from now on , get that poa back into ur hands and u do what u see fits , xxoo

Sloe, I can already see you standing taller. Act like it is your house? IT IS YOUR HOUSE!!!!!!! Keep track of everything..all visits from daughters and POA, an attorney should be able to get medical records to prove what the doctor ordered for your husband's care and what is now being done are not in his best interest. One thing to keep in mind is that you may be looking at your husband every day, but it is no longer the man you married. Dementia is an ugly disease and causes our loved ones to lash out at us at times or to become forgetful.....the symptoms we see are endless. I care for my mother-in-law in her home, which is attached to our home. She has dementia which I would classify as moderate at this time.....she has a retention span of about 5 min, is in diapers and unable to realize when she needs changing, I have to bathe her twice a week, most times she is very sweet but if you tell her to do something she doesn't like she will argue and sometimes scream that she wants to die. It is hard for my husband to see his momma this way so I do 99% of her daily care. We just recently changed her medication and put her on Aricept and Cymbalta daily. She seems to have calmed down a lot and not as argumentative. Is your husband on medication for the dementia? That is something you might want to be aware of which may be causing him to lash out at you at times.
Do you care what his daughters say? Nope, you're too strong to let them beat you down. You're keeping a journal on the times they call, stop by, help, etc. They need to call and request a time to visit....nothing says you have to allow them in to disrupt his routine and yours for that matter. You are doing what is best for your husband. Routine is a requirement of dementia! If they stop by and are disruptive.....document!
And how about a different room for hubby that is more convenient for his care? MOVE HIM....remember it is your home too and no one can tell you what to do in your own home....that includes POA, bratty children, care givers.
Please come back and let me know how things are going....Hugz to you and I hope you have a peaceful night.

I love my husband...it's just not my husband any longer...he has dementia and says I have been going out on him, which is NOT in any way true! He asks me if he can date people since I do...which we know isn't going to happen... I tell him no, he is my husband and he can not date any one and that neither do I....I have taken care of him for years without regret...the dementia is just tough..! As ALL of you on here know...He isn't just mean to me, he does it to one of his daughters when she does visit and I have stated how seldomly that is...and he will go off on the help as well...and hallucinates frequently and guess what he is NEVER wrong!!!!! jeez
The cousin and I get along, but he will and has sided with the daughters in nearly every circumstance......e.g. bringing my husband home when the doctor wanted him to go to "swing bed", letting the girls pick sitters....because, POA said he wasn't sure I would hang in here or not...well, guess what I have and am and it doesn't change a darn thing! POA comes about 9 days ( he LIVES NEXT DOOR!) 2 daughters live 7 miles away and 1 of them passes here each day and as I stated, there has been no more than 4 hours of in home visiting with him since Christmas and they NEVER call him...nor does he ask to call them...I guess that tells ya something too...
Sooooo...I think you see the light! The POA is a joke, I should just have it over turned...or get guardianship....you have very good ideas....and, you are right, I can tell them to bug off, but I feel then they would not see my husband at ALL...and would it hurt him? heck I dunno....they would just say SHE won't let us see our Daddy....lol....oh well...I will talk to an attorney about having everything null and voided...I haven't done it before now because I didn't actually know if I could exsist here with the constant care he requires...If I don't do it, and he worsens, I will have no say in where he goes next....ya know, you seem so smart and I have appreciated your reply...and I will read it over and over....you have made me feel so much better! If you think of anything else, please write me....I will journal, have sorta been..but I will more thoroughly now..and I will stand up tall and act like it is MY house instead of being the doormat slave...which is how they have always treated me! Thank you thank you (when I say they, I do not mean my husband...he has taken care of me very well and was a darling darling man....and husband!)

Sloegin, there are couple of things here you don't mention....what are your feelings toward your husband and how do you and the cousin (POA) get along? The answer to the first question can mean a lot in helping you decide what to do. It is your home and didn't you say your name is on the deed? Do any of these children still live in the home? If not, then tell them they are no longer welcome and when they want to visit with their father, then you will arrange that, but on your terms! How often does the cousin see your husband? Would he be willing to turn POA over to you? Start keeping a journal of events, interactions with his children, other caregivers etc, include dates if possible. Hire an attorney and it probably would not be difficult to have everything prior declared null and void and you then would be made his guardian.
Try this......stand in front of a mirror and see yourself staring back, stand tall and straight and look at yourself and say "NO, I will not allow myself to be treated like a doormat anymore. I am strong and I have a job to do and NO ONE will keep me from doing it. This is MY home and I will live the way I want to". Tell the brats to take a hike, you don't owe them anything. My heart goes out to you and this awful situation you are in.......please keep us posted on how you are doing.

thank you for your answer.....OH yeah, they wanted him in our home because they figured I would not be able to take it and run out....which,I didn't know if I could, nor I know if I can! He was the most caring man and loving, I have lost him.....that man is gone.....he yells out for me, sometimes 40 times a day, just to cover him or whatever.....just to run me I think some times.... (I have 24/7 care which we had been paying from household funds until I told them I can't pay 7400 a month any LONGER....jeez....just paying for his necessities, food, wipes, diapers, pads, meds, etc....is running us down! They spend my husband's trust money on his equipment and now are paying sitters from the trust....but wanting to know what I can contribute from household....it's a MESS......I have no home...I live here in a room with all my important papers, laptop, bed and TV....I can't have guests for long because he begins yelling hush up out there.....and since he poops the bed and the bedroom is right off the kitchen, well, it STINKS quite frankly...even as clean as I am...!!! Well, his daughters, before this past illness, stroke etc....would come to me crying about how horrible their father had been when they were growing up....wanting my sympathy...and I felt sorry for them.....They ALL have baggage including my husband from their relationships! But now, at the "end" (this could be a very LONG end) they want to be the bosses of him, which is perfect for them, revenge? He can't do a damned thing about it now....!

Yes, I have thought about taking off for an extended time..and probably will....They told me upon moving him in to our home that the sitters would cook, and clean....um, the sitters told me that they were told they would NOT have to do either....These are mean, vicious daughters...they did whatever it took to get him in home....LIED to doctors....and now, I am stuck with a poor darling man that can't help his position, but I am not living, only running a nursing home...My husband told me long ago (and MANY other people) his kids are not to be trusted....what are his wishes? Well, he is currently in love with one of the staff here....his wishes are to run off with her....lol....His wishes are to have me ever present....he could care less about his kids being around..he dummies up when they ARE...except for the one that he fights with! I dunno....it's nuttin but a thing....so many are facing so much worse...And yes, I am planning on taking some time off, but when I am out of the house for a day or so, I call my husband often, and he has the sitters call me...so, I never escape, just replace my self for a short time! I think I need a really good attorney that can help end this madness! I just hate confrontation and am stressed because of the way they have already treated me...and, I doubt they would come take care of their father...they would just make SURE THE HELP did cooking, etc.....well, thanks for your listening!

Boy if this isn't a case of finding out what people really thought about their dad getting married again, I don't know what is. What a bunch of brats to begin with, but now you know what they really thought about the whole remarried thing don't you? Does your husband have moments of clarity that you can ask him what HE wants? If he does, then I'd make that my priority to fulfill his wishes. They need to be putting their money where their mouth is so to speak. Those girls didn't want their dad to live with you right? Then why are they not helping you? What would they do if you told them that they are going to get their wish, and you're taking a break from everything. That they are now in charge of his health and welfare while you visit your family somewhere else. I have no idea if you're willing to do that, but I just wonder what they would say. Would they step up to the plate or just complain?
Sorry about your husband. Second marriages are hard enough, but adding what you're going through stinks big time.