Has anyone put their parent into assisted living even though they didn’t want to go, and then they never adjusted and just declined?

my mother has been eating fudgesicles (sp)...and I mean 3 to 4 at a time....mostly sweets. it worries me about her getting diabetes...I wonder if Alzheimer patients do that...go for the sweets. oh me...we just all need to pray...

"Quality of life is valid for everyone!" YES!! Seems to me that trouble starts when that gets discarded in favor of one person.

My mil and FIL hate the place they are at. All they do is complain. They have been very safe there and her dementia improved at first as she was finally eating something other than sugar. They now blame us for everything. We don't care. We are on the bad kid list; the sibling living in a different state is the golden child.

I think you are looking at memory care not assisted living if she's already been diagnosed as such. Facilities have rules on what they will and will not accept and so she may not be an ALF candidate. Can you move her to a memory care unit near a family member. Hopefully who has the POA???

Gratefulmouse's story (a common arc on this forum) is the counterpoint to Smithsilver's "keep them at home as long as possible." It's a puzzle with no easy answer.

Frequently, keeping the elder at home compromises the physical and mental health of his/her immediate family.

Some say that extreme family caregiving sends a good message to the younger generations in that family.

Others say that 5 to 15 years of not being able to help kids/grandkids with homework, attend their sporting events, etc -- because of overseeing an elder -- is an unacceptable trade-off.

"Quality of life" is valid for everyone. Not just the oldest person in the mix.

It's one of the hardest decisions a family needs to make. Sometimes the decision needs to be made again and again -- as the elders needs change. Or the caregivers' resources and physical/mental limitations fluctuate.

A tough journey for everyone.

thank all of you for writing what you did...im 66 and my husband 70....we are not spring chickens and both our health is severe ...my mother is healthy as a horse except for she has moderate alzheimers and psychosis...im just wondering if she has lewy body...another kind if dementia ...she repeats herself all the time and cant remember from one minute to the next...but she knows us and she fixes her own coffee and gets her own food...she cant drive so one of her friends was doing that but suddenly had a stroke I know from the stress my mother was putting on her...my nephew her grandchild comes once a week and pays her bills and buys her things and cleans her house...that boy is something else...but....my mother will not leave her house...she insists on staying in it...she cant leave her things..my father died in 2014 and my younger brother in 2015...he was trying to care for her and I'm sure the stress did him in..my father wanted to go....he begged my bro's to come help him saying something is wrong with your mother...I didn't know this till later when everyone died...I live 4hrs away....I go there a lot...im going again this week...her roof was leaking and her ceiling got messed up from it so I got with her ins agency and they are fixing all of it...I am doing her business...she used the visiting angels...day and night and went through 15 of them ..they finally black listed her and one had to seek psychiatric care...my mother could outdo them...a nurse living next to us who works with the elderly told me my mother is toxic and that I would be dead by the end of the year if I didn't stop. like the rest of my family who died....well, I have 2 sisters who live In Washington state and Delaware and the one in Delaware just lost her husband this year....I have a bro who black listed her as well he cut her off..she was trying to destroy his job and his family. my mother wants me and my husband to live with her...we have been there for 2 weeks at a time and my 70yr old husband hides in one of her bedrooms...when he comes out she starts talking about things that peeve him off and they go at it making me the middle man and I have to literally pull their mouths off of each other...most people are afraid of her....she is a small feisty woman...she loves you to death until you tell her something she doesn't want to hear and she says she will call the police...lol..it makes me laugh ...but she did call the police on the bro who lives near to come and cut her grass...the police actually went to my brothers house and made him come cut her grass....he did it but never ever got with her again...no phone no nothing....he almost lost his job because of her harassment...calling his work ...she calls people all day long and was using 411 for phone numbers and she got bills of 500 and 600 just for 411 calls....I cant cut that off...she had the alert system in her home and used it to go see a dr thinking it was an emergency and her bills for that are 1003 per call transport to er....she was running thru all the money my father left her...when my bro died she got some of his money.....I took her to her fam dr and he knows she is like this ..he did nothing till she went to emergency again of which I was called and had them diagnose her and they sent a note to her fam dr who had to pay attention and he sent her to neurology and she the neuro said why do you want to see me what can I do...I felt flabbergasted...hello....so I got with her and said you were told to see her abt having dementia ...but you cant say that to her...so she did what she could and said yes she had moderate alzheimers and psychosis....then she sent me to adult protective services...I got with her..and they insisted I get guardianship....I asked about that and found out that you are called constantly about everything.....I don't want to go through route....I just finished taking care of my mother in law till she died in 2014....im exhausted...I love my poor mom....but she is killing people indirectly ....I had to up my paxil....im also on an anti seizure drug keppra....and have myriad other health problems as well as my husband who just got through prostate cancer...we just cant take it....we have also talked with a place for mom....everything....im praying all the time...I have noticed the Lord help us in some instances....but when that roof is done..im going to have to confront her with the fact that she has 2 choices...stay in her own home by herself....or go into assisted living....she was trying to get someone else to live with her but that cannot happen....i'd worry they were going to die.....

The reason Alzheimer's and other dementia patients decline so rapidly after a move is because they have trouble forming NEW MEMORIES.
When they wake up in their home of many years, they 'automatically' know where everything is, the lamp, the kitchen, the bathroom, the dishes, the coffee, the toothbrush, the hallway, the front door, their favorite seat, the tv, etc.
When they wake up in a new place, their brain has to try to figure EVERYTHING out from scratch - a daunting task - EVERY DAY.
You wake up in a strange room - where is the light switch - where is the bathroom, what does that door open up to, where does that hallway go to? and so on.
All of this starts to impact their autonomic functions (all generated by memory) like swallowing, remembering how to open a jar, put on pants, tie a shoe. It is a snowballing effect that can go downhill RAPIDLY.
That is why most geriatric doctors now recommend KEEPING a person in their home as long as possible, unless it is totally unsafe, there are serious medical issues that can not be attended to at home (like dialysis), or no help available at home.
That is one of the reasons (besides saving money) that many insurances now cover in home care and assistance rather than moving a patient into a nursing home.
Any time a person can stay in their own home, that is preferable, next option is usually stay with a family member, then the choice of a commercial assisted living or nursing home.
Every person's situation with family, finances, and medical issues is complex and can vary widely.
Overall, dementia patients are always 'in decline' as their disease progresses, but a move to a new place rapidly accelerates that decline.

One of my last trips to go see mama, she was sitting on the side of her bed, no roommate , in the dark room, looking at the floor, i was so sad for her!! She looked up at me and told me i had been on her mind that day and i sat next to her on her bed and huggged her and held on for as long as l could! I stayed in town for several days as i usually did. And NO ONE, not one family member or friend came to see her! That was always the case when id go to visit i never told anybody i was coming--they just werent coming. But all of those were going thru her possessions all the time. I;d take her on outings as much as she wanted. The brothers had long ago taken away her cell phone becasue as they said, she was always calling them and bothering them too much! I started calling the nursing home to talk to her and she was wrting letters to me a lot. Until one day she just could not write any more. These memories are so hard to bear sometimes. She was a good mama and deserved way better than then was given to her in the end.

My brothers put mom in assisted living for a while. Yes, she did decline and no local family would visit her only try to get ahold of her possessions. We'd talk regularly on her cell phone of how sad she was and wanting to go back home. Her UTI's started getting worse and she started hallucinating again. They'd treat her for those until they decided that she needed to leave and go into a nursing home. She was devastated. On her first days there and seeing the handwriting on the wall, she passed out right in front of me and was cold tothe touch. POA brother never showed up at he nursing home, saying, now you know what we have been going thru! Really??! I had moved over 30 years ago and it has been thrown in my face since. She never wanted to be locked up like she was. The nursing home put her in the Alzheimer's wing which needed a door code to get out so she was not able to leave again. She had left a couple of times out the from door to go home. She knew where her house was! My POA brother and his wife, who did not like mama, made the worst decisions for her! He even decided and threatened me with not being able to see her. He put a restriction on me to take her out since my older daughter had taken her to see her house one day at her request. I'm done with them. I was not even notified that she had stopped eating and drinking only until my older brother sent me and sister a pic of mom after she had had a stroke! Put me in a panic! I threw clothes in a suitcase and took off. At least I was the only of us 4 that was with her at the end.

I placed my husband in an AFH (owner is an RN); he was still walking; in 10 months, he was in a wheelchair and had behavioral problems and had to be medicated. Moved him to another AFH and it was like night and day. Behavioral problem gone and I slowly got him out from his medication for behavioral problem. I figured based on my observations, it was the environment - dark house, noise - TV and people talking too loud, how he was treated (even people with dementia can tell from body language), disrespected. Finally, brought him back home since the owner of the second AFH did not know how to manage her business. I always talk and treat him nice and that is one thing I require of caregivers that come an help out. Otherwise, I fire them.

I just found your other post. So sorry.

When you move your Dad there will be an adjustment period. May be days or weeks. Mom's social worker at the Nursing home after the first few days that it might help if I didn't visit so much until Mom settled into the routine. Rather than visit twice a day I visited once a week. Mom did finally adjust but it took a few weeks then sister and I visited often but never on a set schedule. That way no one never really knew when we might pop in and we had a better idea what was going on at any given time.

I had to plan on moving Mom into I nursing home. I knew she did not want this, but it was for safety. So, I chose 3 nursing homes I thought would work. I took her to each one, and we took a little tour. I told her SHE should choose the one she where she wanted to live. And she did. What sold her was the one that had a little ice cream parlor, where the residents had a "social" a few afternoons a week.

Part 2. Without writing a whole book on this matter already written about in AgingCare: Mother was injured by the facility. I was nursing her back to health in IL. She was forced into Personal Care by a scam documented by a Dr. in the Emergency room. She stated that there was no reason Mother could not go back to IL.
The Nurses in Personal Care were not advised that she could not get in or out of her wheel chair or walk around in her PC unit. She had several bad falls. She was injured time again to the point she had no balance and was confused. I was not permitted with her overnights. We had Nurses Aids stay with her 8 hrs a night for several months. I stayed with her 16 hours a day. They were a mess. It was worse than I thought. They were not giving her Glaucoma meds as directed. She suffered from "Charles Bonnet Syndrom," Her eyesight went to severe with visual hallucinations, I witnessed the wrong eye med being given in the AM.. I complained about that and the dining room staff attitude and food, the maintenance man being inappropriate (sexual harassment -- Mother had nightmares of a man hiding in her closet), the Nurses made up lies to me regarding when constipation meds were given, I was banned from the Caregiver Support meeting when I spilled out what all was going on, etc. My hours were cut to 10 am to 2 pm 5 days a week. My Mother was very unhappy there and that I could not be with her. My son took over as many hours as he could. We found a place with a better reputation in Assisted Living and got her moved with my brother on our side. THE POINT IS: LISTEN TO YOU LOVED ONE. IF YOU THINK THEY DO NOT KNOW WHAT THEY ARE TALKING ABOUT -- PERSONALLY INVESTIGATE. I GO A STEP FURTHER. LOVED ONES SHOULD NOT BE FALLING, BREAKING A SHOULDER OR HIP AND PREMATURELY DYING IN A FACILITY OR A HOME. A LO'S FAMILY HAS THE OPPORTUNITY TO STEP UP AND GIVE ROUND THE CLOCK COMPANY TO THEIR LO. BLESSINGS.

Listen to your loved one. If they don't like it . . . get them out of there...We were in that situation where my Mother lived in Independent Living for 14 years. She was doing very well. She could walk without a cane, give herself showers, socialize, take part in activities. I gave her my cat for company then stayed with her when she asked me to.  It was a blessing having Mother daughter time together.  I took care of the cat, helped her, gave her meds, did the laundry, we went out visiting, shopping, to my home to visit, etc.  After 1 year she had a fall in the elevator at the facility. I caught her and broke her fall. After that I stuck by her 24 x 7.  I relied on her Dr. and the facility for direction.  The Dr. did not give her a blood test advising why do it at her age that would have caught her malnutrition and anemia right away.  I had been asking for a blood screen for a year.  There was a rift in the family where my brother and cousin were aligned with the objectives of the facility.  The Activities Director/ Management was angry when Mother changed her Health Care Directive from DNR and withholding of  fluids and antibiotics and when she made me the POA of Health Care.  She was close with my cousin who had a jazz band that the facility booked several times a year.  He was never nice 

i was dealing with the same kind of home repair remodel issues you are and my husband's doctor said if we were going to make a move, sooner was better than later. It took almost a year, but my husband has adjusted.

Yes, they get very depressed in nursing homes. They feel like they're being lonely and left out. It happened to my mom and died after 9 months after she went in the facility  Depression increased their dementia.

I think the sooner they are moved the easier for them to adjust. If you wait to late it may be harder. Or if you wait to late, it may be memory care not AL that is needed. Also for your own mental health to say nothing of your home being remodeled. The socialization offered, activities and care when required by the resident is very important to their mental and physical well being. If you haven't done so already, go and visit some places where you live during the day and close to meal time. Often they will let you have lunch on them so you can try the food. See how the staff treats the residents and how it actually can be a nice place to live.

I suppose it depends on the level of the dementia, but, when it's significant, the priorities may have to become safety and health. The dementia may cloud the judgment and understanding and you may not be able to make a person who has dementia happy. Even with heroic efforts of keeping them at home, they may not even realize that they are in their home. Dementia patients often repeatedly ask to go home, no matter where they are living. I'd read a lot about how making a person with dementia happy, may not be possible.And they may decline, regardless of where they are living.  There are many factors to consider.  My LO improved in Memory Care.  She looked happier and healthier after being there for 6 months, than she had in years.  Of course, she had no idea where she was. 

your statements

"Husband and FIL keep saying they are worried a move to facility will cause MIL to decline if she doesn't want it. Guess what? The move is needed because she IS declining"

really hit the nail on the head ,,, he is declining ,, we are going to add more caregiver hours ,, but so much is needed in the house now air conditioning,, ramps new shower,, the costs to make the house safer don't make sense when AL IS safer and healthier for him

Didgens, people with alzheimer's/dementia will decline. That is the nature of the disease. Some people never adjust to a move that they didn't want - they decline (my grandmother fell and broke her hip and had to go to NH, died with 8 weeks raving with rapid onset full blown dementia). Some people adjust fine to assisted living (my husband's grandmother loved it - activities, food, etc-lived AL then NH side for 15 years) but she eventually declined, too. The rate of decline will vary. How unhappy they are will vary. But at this point of needing care, we have to be the adults. My husband has his head in the sand about his mother's care. She is in late stage Parkinson's and is homebound. His late stage COPD father is providing 24 hour care with minimal PT,OT, home health visits. Husband and FIL keep saying they are worried a move to facility will cause MIL to decline if she doesn't want it. Guess what? The move is needed because she IS declining. In home care will not be sustainable long term but it will take a crisis to change the situation. Please don't let your fears of a more rapid decline mean that you and your parent don't get them the care they need without you being completely burnt out in the process.