MaryMary2, I wanted to cry when I saw your message as I am dealing with the same thing. I’m not her daughter but her granddaughter. I constantly am fighting everyone in the family but my parents on where she really is mentally. Nobody wants to accept it. On top of that, she is constantly giving love and gifts to the other grandchildren (who provide absolutely 0% assistance) and she sees me as the controlling warden. I feel like a monster most days. If I didn’t have my parents to vent to and to keep me sane, I don’t think I would be. I’m so sorry to hear you’re dealing with something similar.

I totally agree with lcl54! It really is good advice but an issue that I’m experiencing while taking care of my grandmother is her level of rebellion and stubbornness. She also has refused to be realistic about her age (92) and won’t wear hearing aids, etc. That combined with all of the weird dementia habits makes to be a very frustrating day most of the time. I would love to read an article that had very specific advice for very specific things. Examples: we’ve asked her not to use machines around the house —- she still does it. Or she refuses to wash her dishes so we have to wash everything before we use it in case it’s dirty. Or we bought a new mailbox that requires a key to open it (bc she’ll lose the mail) so now she sits outside and waits for the mailman to hand it to her directly. So I’m at the early stages where she can still think clearly enough to sabotage certain things but refuses to conform to rules or reasonable expectations and it’s gotten to the point where I am shocked at her behavior and don’t know how to handle it much less practical ideas for how to implement necessary changes in the house so she doesn’t just rule the house in whatever way she pleases.

What do you do when out-of-state siblings deny there's a problem (when the parent is living with you so you see firsthand) and moreover take advantage of the parent's decline by manipulating them - especially easy as they are her darlings (who do nothing) while I the "evil" one do all the work for her. So how do we deal with that? Thanks.

any advice for a mom who continues to question and demand, boldly, imperiously [for 3 years now] why she doesn't get bank statements in mail or have a bank card...

On the other hand, if a parent is perfectly sound of mind, but you don't like her life choices, you may need to butt the h3ll out of her business. Just because you want her money or property, it doesn't give you, the child, the right to start "gas-lighting" her; harassing and slandering her into acquiescing to your demands.

Very informative and assuring about how to handle this difficult setting. I needed this as a means of support.

Wish I could give each and everyone of you a hug...parenting my mom..taking care of her finance..drs apts..groceries...putting up with her demands..manipulations...cleaning ..etc...I ready for the looney bin..lol..seriously this stinks!

I forgot to mention that my mother always had streaks when she was extremely difficult to get along with and downright hateful; she would drive us away, and at those times the only thing we could do was stay away. Of course going into the nursing home exacerbated the problem. She was nasty with staff, throwing things, defacing nursing home property, etc. Sad to say that she knew full well what she was doing and there was no dealing with her.

"If your parent....forgets that you visited yesterday, it's a huge red flag for you."
Unfortunately, my mother would "selectively forget" so she could manipulate her children; she'd done that for decades, if not most of her life....I believe that the only thing she truly forgot was when Dad died, and that was after she entered the nursing home and they had started giving her the heavy duty psychiatric drugs. She didn't seem to have forgotten anything else. She was still paying her bills before she entered the nursing home, although her writing showed signs of deterioration, (they had her on some psychotropic drugs before she went in) there was really no sign of dementia prior to the psych drugs.

As far as the driving...we disconnected the battery on the van so that it wouldn't start. The last time my mom drove...she drove into the neighbors garage claiming it was the jack in The Box drive through. I also watched her veer across 3 lanes of traffic...oblivious to others on the road and then run a red light. When she raised cane about the van not starting...we just kept saying someone was coming out to fix it...and then it disappeared...my brother sold it to cover the cost of their bills.
We are flexible...my brother sums it up best. It's a chess game...mom makes a move...we make a move. Sometimes we get lucky and take preemptive moves. The key is to remain calm and just 'play pretend games'. This is their reality no matter how skewed it gets. I don't mention that my mom wet the bed when I change the sheets...I just change them and put a clean protective mattress pad on. That's just one example. We've gone through almost everything that others on here experience...including the lost keys...the 'poop packages' left around the house. And i could go on. You name it...she's done it...all the stages. The key is to just clean things up and don't mention it...if my mom asks...I tell her i didn't throw something away and blame myself for any messes...not her. I owe her for my life ..I owe her the respect she deserves...and I owe her...her dignity.

We have experienced everything mentioned above. Unfortunately...we didn't recognize the subtle signs and didn't see that my mother was buying 3 or 4 of the same things and hiding them in closets and cabinets until my dad started mentioning over the course of 2 months...that there was no money in their account...my mother would say nothing and so we were baffled at what might be happening. It wasn't until my dad was hospitalized that I noticed significant changes with my mother since I was now seeing her on a daily basis...away from the house...and saw how she drove...that was when i had my brother (POA) step in and take a look at what was going on. Thank goodness my brother and I were raised by sensible parents and therefore we are both sensible ourselves. The money was gone...our mom had bought everything that was offered by the Bradford Exchange...the Franklin Mint and any other catalog that offered just sending in the coupon and they'd bill you later. Never mind the phone solicitors...they were just as bad. But...my brother took a "Bar Rescue" approach and broke open the books. We canceled all magazine subscriptions...and wrote to these other companies claiming they were both dead...because explaining that someone has dementia and ordered these products by mistake wasn't working...even though we offered to send the items back. We ended up forwarding mail to my brother and I began going to my mom's every day. When my mom would get upset about no mail delivery...we just played along and told her that mail service is just getting bad these days...when she couldn't find the checkbook...we told her that we were out and that we would order more. Did she get upset? Oh yes...but the key is to remain calm and just make up stories...it doesn't help to engage in arguments or tell that person what is really going on. They will respond with denial and anger. It has been 2 years now and things are calm. Occasionally my mom will mention something about no mail...and I respond with "companies are saving paper". Peace is important as well as keeping their dignity intact. Their world is their world...it is their reality...not ours...and we need to adapt for them.

I moved in with my father in 2007 when his best friend and love of his life past away. I gave him six months to handle life without her on his own, it didn't work. I moved in in june and have been here ever since. His AlZ and dementia has become worse and I know becuz I am the care giver I get the brunt of it. But it is so hard for me to raise my voice at him. I do and then go somewhere private and just cry. I was taught never to raise your voice to any elder. I have a brother who does absolutely nothing. In the seven years I have lived here my brother has been here 3 times and each one of those times it was to borrow something. The items he borrowed he never returned. The one time he came by he started picking items that would be his when his father passes. When he finished in the barn he did the same in the house. Now he is telling everyone the day after Dad is in the ground I have 24 hours to move out. Becuz I moved in with my father my marriage of 20 years came to a divorce. What do I do? The lawyers I have spoke to state to me they can't change my fathers will becuz of the state of his mind. I try to tell them he has good days where he knows everything that is going on. The attorneys still refuse. The deed to the house is in my name and several other properties mom and dad owned. The second mortgage is in both my dads and my name. I need help can someone give it to me. My father wants me to have the house and everything in it.

I can't keep my parents off the road!!! My Dad is 87 and my Mom is 85. He is okay driving around the community in which they live, (driving to grocery store, church etc), but my Mom will not stay at home. They are going somewhere constantly and I am afraid my Dad is going to drift off to sleep while driving these 30 minute to an hour trips. When he gets still he falls asleep. They are able to still live by themselves and take care of their personal needs but they are both miserable, not happy, not thankful that they still have each other. He would be content if she would let him be. I am now at a point in my life I have grandchildren that I want to spend time with and I know there will come a day that I have to spend more time with my parents than with my children and grandchildren. My parents had those years with their grands now I feel like its my time. My mother has always been very aggressive and its always been her having her way. My Dad has give in to her all of their married life. She talks about me and my brother behind our backs and will never get over that my husband and I took a trip to Hawaii last year without her. It was our 35 year anniversary and my 5 year cancer free mark and we wanted to celebrate. She hasn't said anything to me directly but the whole family said she threw one more fit!!! My parents have traveled to every state in the US except for two, went to Mexico, Canada, and Australia, and as late as last year took two vacations so it isn't like they have never got to go anywhere. She goes to the Dr constantly for no reason, just a trip. She has had her share of health problems and my Dad has always been healthy until the past few years and he is going down day by day because she is constantly making him do things when he had rather just rest. Everything for her must be done NOW! We used to think he would out live her but I think at this point she will out live him and then will we have a problem. They have always enabled my niece to not work and provided housing for them for over ten years. They finally have a house of their own but I suspect my mom is still giving them money. They do not make enough to live like they are living. And most recently they have bought their great granddaughter a new car. They are supposed to pay it back but I know how that will go. The car is paid for and in my nieces name. Mind you they have 4 great grand children and 3 grandchildren. This is my brothers child and grandchild I am referring to and he isn't happy about the situation either. He thinks and most people would too when you get to be 40 years old you should be able to provide for your on family and they went behind his back as well to buy the car. They think they are keeping this a secret from me. Outwardly to other people she is beginning to say hurtful things, where she used to would put a filter on her mouth she now just says anything. They get friends and then the next thing you know she finds something wrong with them and the friends are no where to be seen. Anyone out there have any suggestions?

Like too many other "children" of aging parents, I have walked the rocky road of being a parent to my mother with dementia, later diagnosed as Alzheimer's. It's a delicate responsibility trying to maintain respect while guarding their safety.

I agree with the five tips above although for parents with dementia, #3 is trickier. "Rules" alone likely will be ineffective. Their logic is depleted so creative strategies will be necessary to maintain safety especially with driving issues. This is a must and worth hiding the car keys.

In tribute to my mother and everyone in this nebulous caregiving journey I wrote "I Will Never Forget." Many will be able to relate to my experiences. I donate from each book sold to the Alzheimer's Association, local programs and research.

Excellent and plain spoken. It is the children who need to accept the role reversal and step up to the plate.

Thank you Carolyn this is one of the best articles I have found this year !

Thanks Susan JMT for taking the time to share the VA benefit information. My father was a Veteran, unfortunately he had a dishonorable discharge and is not entitled to any benefits. I went as far as to request all his records in regard to the discharge to see if it was worth pursuing to have him reinstated. After learning of the circumstances surrounding the dishonorable discharge I felt it was a loosing battle fighting for the VA benefits. Thank You

DBimages, I know how you are with the smoking issue. Both my hubs and I smoke, but not alot and always with the window/door open or outside. Folks moved in.. smoke ALOT and now that it is cold always in the house. dad can't remember he just had one, moms nerves are shot over move/dad/etc. I have pretty much given up and just accept my house smells like an ashtray. It is what it is, and I have bigger things to worry about. I am an respiratory therapist (go figure) and I feel for you with the allergies. Air the house out when you can, and avoid it when you can't. Good luck with this!

My mother isn't so much rebellious, but definately unrealistic. I have medical and financial DPOA for her. She is 82 and currently living independently. Urging her to get services to help her live independently has been a nightmare. She can afford these services, but feels paying someone for in homecare is a waste of money. She would prefer to rely on my sister and I for free or paying my sister a pittence for doing the housework. Her reasoning-leaving a legacy of an inheritence. She has already told me she does not want to use her assets for her care and would like to move in with me when you can no longer live independently so she can preserve her assets. Not going to happen. I will not become her freebie caregiver and home provider. I will use her assets for her care if it should come to that and if she fights me I will relinguish those duties to the alternate, my sister.

I am in the middle of this nightmare right now. My Gram has been fiercely independent her entire life. She was having memory problems for a while and I either misunderstood what was really happening or like a ostrich chose to keep my head in the sand. Either way she fell and broke her left hip in April. Was in rehab until July, my sister came and stayed with her until November. Then while visiting family who thinks I'm full of crap she fell and broke her other hip. I don't blame them at all... When she visited them in August they let her buy cigarettes and thus started my second roller coaster nightmare all over again. With COPD, Emphysema and lack of oxygen getting to her brain the dizzy spells began and she started falling so I knew it was coming. Just no idea when. So I am glad it happened on their watch only because they saw I wasn't completely full of it. So long story short she is in rehab again and this time I am struggling to decide if I should have her move from skilled to assisted living as there is no one to stay with her and I have to work, have family and the rest of the family can't even visit her. I'm exhausted and drowning in guilt over figuring this out.

Give a hug.....your comments are appreciated.

In regard to your 93 year old step dad, kpas6185, putting money aside, how do you think your dad would want to live his final days? Would he want to be at home, in assisted living, in a group home? If you know the answer to that, then that is what you should do. Living his final years comfortable and the way he wanted is what is important.
If you feel the Guardian is not doing a good job, you could hire an attorney and petition the court to have the Guardian removed, but you would need good cause. If your dad lives out of the county where you live, you may consider asking the court to have him moved closer to you. Then you would have to determine, if this Guardian is removed, who would be the new Guardian, another professional Guardian or a family member. That could look suspicious to the court that a family member would want to fill that role now especially since he inherited money. The court would want you to explain why you or other family members didn't want this role when he first became incompetent.
I am not sure what state you live in, but it is a lot of work being a Guardian or Conservator. In California, you need court orders for almost everything. You may be required to up front money, petition the court for reimbursement and hope the court approves it.
I would recommend talking to an attorney or the Public Guardian of the court to understand all your options and the responsibilities required when taking on the role of a Guardian.
Again, what your dad would want for his final days is most important. To make sure he is safe, well cared for and happy.

93 year old stepdad has been ruled incompetent by the Courts and appointed a Professional Guardian and Professional Trustee for him. He lives at home with 24-7 caregivers. The costs are unfathomable! He has recently inherited money from his deceased sister. The Guardian knows this. She refuses to consider moving Dad from his home because 'he has funds.' Dad has always said his Trust should be divided equally between my estranged sister and me....at this
rate there will be no Trust in a few years. Dad has always led a very frugal lifestyle. I know as his daughter of 60+ years he would not want his money spent
this way. We're talking thousands of dollars for at home care, groceries, insurances and whatever needs fixing around the house, i.e. right now a $10,000 septic tank problem is in the works! HELP!

Thanks SusanJMT for the VA information. I already looked into it and my dad is not entitled to veterans benefits. I requested all the records to be absolutely sure and he doesn't qualify for them. I wish he did. I have exhausted about every avenue. My dad continues to be a major problem where he lives. Phone calls almost daily. No one wants to assist; not the chief of Police, Adult Protective Services or the Public Guardian. It is so frustrating. If he lived around our county they would have 51 50 him long ago. It appears counties with more low income seniors rarely use their powers to assist them.

I was lucky in that we found a very sympathetic judge when it came time for a compentancy hearing. She appointed me as the financial guardian and my sister as the guardian of her person. Thank God for knowing who to grace with the wisdom to know what to do. We are all (4 siblings) accountable to the court, mother and each other. Mother was physically abusive to all of us and we were afraid she would die alone - in spite of the fact that my sister lived next door.

ICI54: I mention this in two other threads: If you relative was a veteran during wartime (I don't think that it is necessary that the veteran served in a war zone), that the VA has a benefit that helps support certain health-related expenses (up to $2200 per month for caregiving or to help pay for assisted living if assistance is required for a number of life-sustaining tasks). This benefit is need-based. Please followup if your relative is a veteran. There is also a more limited benefit for spouses/widows/widowers of a wartime veteran.

I didn't think there were too many difficult dementia patients like my dad and uncle.
My uncle was really difficult. Refused everything. Finally the fire department 51 50 him because he would not leave a neighbors yard or go back home. This was literally after 200 police and fire department visits to my uncle's home before they 51 50 him. The hospital would not accept the Health Directive because my uncle refused tests, etc. So they started a LPS conservatorship that was denied by the court. The hospital informed me that I would have to hire an attorney and start a regular conservatorship. My uncle lived 400 miles away. I did not realize what I was getting into. I was informed I could not be reimbursed for travel because they could easily find a public guardian close by. I wanted some say in his care and the facility he would be placed in so I accepted before I realized I would have a lot of out of pocket expenses. I couldn't always drive there, had to fly at times, stay in a hotel, rent a car. The first facility that accepted my uncle sent him back to the hospital within 5 hours because he was too difficult to handle. No medication worked for him. That meant informing the court, usually through a hearing, to get approval for the move. This happened three times in 6 months. I had to buy all his clothes out of pocket and give the receipts to the court and hope they approved my reimbursement. You need the courts approval for almost everything.
When dealing with very very difficult dementia patients it can be overwhelming and hopeless. I am on my second one, my father, and I don't have money to up front or pay for costs of a conservatorship. It appears to be the only way to get him help because he refuses every thing. Susan JMT was very close about saying it is like dealing with a psychotic teenager. Some people literally get crazy with dementia.
I wish all hospitals operated as SusanJMT mentioned. The hospital where my dad lives has sent people home that shouldn't be home alone. I have heard this from the police and Adult Protective Services. We have a major problem in our society. Too many people with dementia do not qualify for skilled nursing when they are physically healthy. They do not have money for assisted living or a group home. Many people where my dad lives have only social security, which won't pay for assisted living or a group home. So what can the hospital do or where can they send these people who need care??? Adult Protective services, the Public Guardian of the court and three attorneys say the only way to get help for someone who refuses everything is get a conservatorship. My dad has refused seeing a doctor so there are no doctor's reports stating my dad is incompetent. Honestly, I can't afford another conservatorship or all the hearings if my dad has to be moved from one facility to another. He fights all rules and no one can reason with him.

This reminds me of something that an Nursing Home nurse communicated to me at one point: If a patient has been admitted to a medical facility, such as a hospital or rehabilitation facility, they may not be released unless they have someplace suitable to go. If nobody steps foward to make a home for them where they can receive adequate care (and by that we should also consider that it should be successful care, which we may not be able to provide considering the challenges described in the preceding posts), then the facility must find a place for them. Keep this in mind for the future if your relative goes down this path. When asked if you will be able to provide adequate care in your home, or theirs, answer truthfully, NO. This may be the only way that your elder relative will enter a facility that can provide the care they need.

Lcl54 sounds like my situation w/ my 90 yr old dementia mother. I've been advised I have springing POA which attending physician has to declare incompetency--we'll she's been to geriatric psychiatrist and physician and neither want to sign incompetency yet agree she needs Supervised care. I took mom home from psych stay in behavioral facility and begged them and her to help me get her in memory care facility finally. No help and mom was ballistic, so she left "agreeing to in home care" only once she was home it was a weekly nightmare with fighting CNAs,calling police and challenging my hiring them without POA. Finally she locked out night nurse called police and cancelled the care. Police, community services board, magistrate refused to help and take her back under emergency custody order even though she was in danger without SUV care. I'm long distance and this has been an escalating battle.

Without system help, I believe going to court will be a long losing battle. I am setting boundaries and not setting up any more help which she always cancels or lets go. I'm paying the bills even though I don't have that permission either but at least she will not lose her home or have utilities cut.

At this point I'll have to wait for next imminent event and then maybe drs will help and declare incompetency so I can get her in safe care facility.

It is not always possible to do the right thing even when you try without some level of cooperation.

My next move may have to be adult protective services but I've been advised by others not got do this or we won't have any say as to what care or where she gets care going forward.

I have the benefit of some hindsight after caring for a parent who spent much of her day being abusive, complaining, and resistant to routine health-related tasks. Now that Mom is in Assisted Living / Life Guidance (read this as Memory Care) she is much better. The difference? Finally clearing a long-term, low-grade infection which affected her mind, and introduction of a new drug regimen which includes the right combo of psychoactive drugs. This is not like raising and taking care of children. It is like taking care of a psychotic teenager who outweighs you. Thoroughly review the patient's health issues with a Gerontologist and gratefully accept the psychoactive drugs that the MD offers to prescribe. Of course, check out the need for the other maintenance drugs your relative might be on. I argued that Mom didn't need the higher dosage of blood pressure meds since she lost almost 70 lbs. The Gerontologist at the Assisted Living facility considered my argument and reduced the meds on a closely-watched trial basis. Mom is much more together and even happy. In fact, all of the residents at her assisted living facility seem pretty happy. I could not achieve this at home, though I did make improvements in Mom's health; Maybe you can do better by expecting your relative's physican to prescribe for dementia and mood.