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

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I just wonder if any of you are taking care of a husband with dementia and do not have children together, but HIS children are bossing me around in OUR home....We have sitters, 24/7, I have been told I have no right to decide on who sits, I was told to move out of our master suite so my husband (bed ridden, no bowel, bladder control, delussional, vas dementia) could occupy it when there was a perfectly good room for him that would have been safter, less obtrusive...My husband had a psychotic episode one against our help, one against me before he was diagnosed.....after a stroke he asked to have an attorney (*I think he was cooerced) bring him POA papers having his cousin POA medical and financial...I could probably have them over turned....with proper attorney, I just don't know if I can handle any more stress...At any rate, the daughters, nurses, told the doctor when he was to be released, that they did not want him going to a "swing bed" and wanted him in OUR home..they persuaded the doctor by saying they would participate in his care at home.....As of Christmas 2 of the 3 daughters have spent no MORE than 4 hours in the home..they never ask to help get groceries, cook, nothing except tell me and the help what to do ...and what NOT to do....I have taken care of my husband for nearly 12 years...without help from them, but now, they want him in home, but no participation...I know this sounds sketchy and bizarre...I just wonder if any of you are fighting an uphill battle with step children! My name is on the deed btw....where are MY rights??? BTW, my husband weighs 380..I have also been helping the hired sitters with cleaning him after bowel movements until I hurt myself last week.....It takes 2 people to clean him properly....Ok...HELP

Answers 1 to 10 of 16
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.
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!
Top Answer
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.
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!)
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.
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
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 ....
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!
Get an elder law attorney quick, find out what your rights are for your state and your situation, or the stress will never end.
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.

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