Should I be concerned that my mother's dementia has gotten worse after living in assisted living?

It does sound like a natural progression of dementia that would have happened in any environment. I would not disrupt her ideas about the place being a school, not insist she understand that she is never retruning home. The brain comes up with these stories to comfort and make sense of things that can't be understood correctly any more to the person wtih the dementia.

Ask them to evaluate for medications and make sure she has no infections or other treatable conditions. Get her some non-alcoholic wine and tell her you found it. Do some of the activities there with her, tell her you think the classes she gets to go to are pretty neat. It does not sound like you need to feel guilty, but focus on making any good memories that you can and giving her as much quality of life as she can have. Even if she does not really remember it specifically the next day, I think it helps in some way. The exact same behaviors and concerns could happen and do happen all the time with people recieiving care in their own homes.

I had to place both my elderly parents in an assisted living facility (ALF) after Dad broke his hip at 90 years old. At first, the place was fine, and Dad was making strides with the physical therapists & starting to walk with a walker. Then, all hell broke loose & all they did was complain about everything. The ALF was short staffed, the staff they DID hire was inept, the food wasn't edible, the smell inside the building was horrible, and the rates kept going up up UP. I finally said ENOUGH, and checked out some other ALFs that had come highly recommended. I moved them in April, and they loved the new place right away. The new ALF is not corporate owned; it's locally owned & operated by a caring and able staff of professionals (with LPNs on staff 24/7). The new ALF is also beautiful, clean, and offers excellent food, activities and amenities. Plus, it's LESS expensive (and way less nickle & diming) than the corporate owned (Brookdale) facility. My father declined, thanks to a growing brain tumor, and the staff bent over backwards to see to his every need, even when Hospice was called in. I thank God I made the decision to move them when I did. My Dad passed away last Tuesday, and Mom's slight dementia and hearing loss has become a lot worse. I was expecting this, but it's still difficult to witness. Should her dementia worsen even more, there is a Memory Care building in the ALF that she can move to. I think it's important to find a facility that offers levels of care...........because every move DOES create more disorientation and confusion for the elderly. If you find a place that offers AL, Memory Care and Skilled Nursing, then you'll be able to have your loved ones cared for, no matter what, up until death.

A beautiful facility is not the same as a caring facility -- you are right. And a caring facility is more important! (Ideally a facility is both caring and beautiful, but not every place lives up to the ideal.)

No you suppose your mother needs a higher level of care? Maybe "assisted" is no longer enough.

My mother has dementia and was put in assistant living 9 months ago. before then she wasn't taking her medication correctly because my mom bossed my sister around her lived with her and my mom turned on me.
long story short, it's a beautiful facility with activities. but have found that the activities are the same each week and they are short staffed. mom is getting worst and wetting to bed and sometimes the sheets aren't changed. i change them. i'm thinking of looking for another facility because she needs some one on one attention and for $4600 a month i just don't think she's getting the best care. a beautiul facility is Not always the answer. any suggestions.

My mother in law just turned 80 yrs old. She was living in an independant side of a senior retirement center until she fell at church easter Sunday and broke her hip. Her dementis got worse, then to rehab, then 2 more trips to hospital to have hip replaced in socket...then finally back to her independent side of the retirment center. Her dementis worsened so fast that the dr had her moved to the assisted side right beofre Christmas and put her on aricef. Her dementia has gotten worse...she does not remember when we visit (2-3 times a week(, or how to go about paying her bills (we took over her checking account..she was writting hot checks everywhere and had no idea of this).....is this normal for a dementia patient? She can remember to call me on my new telephone number, and remembers I have been sick...but then she says she remembers nothing else......I am her daughter in law and me and my husband have been her caregivers for several years..taking her to all appts, grocery store..everywhere...now we just don't know what to do. I know she is safe at the assisted side of this center and they handle her medicines and give them right and on time.....please, any advice wouild help. She is also out of money and I am disabiled, so she can not move in with us.

My doctor told me that a change in environment can cause a dementia patient to show more severe symptoms. My mother, who has dementia, fell and broke her ankle, which required surgery. After the surgery, she was delusional and incoherent. Granted, a lot of it was due to the drugs. But the doctor said that the change in environment played a part as well. Then when Mom had to go to the nursing home for rehab, it was yet another change in environment, which seemed to escalate her dementia symptoms. She was given medication to manage the agitation, etc. Then she seemed to adjust to the care center and after an initial meltdown she calmed down and got along fine with the staff. Then we saw another decline in her mental status when she was moved home after reaching a plateau in her rehab, to the point where we had to put her back in the care facility.

Please don't feel guilty about putting your mother in AL. From what you said, she was unable to remain in her home alone. Yes, it is a huge adjustment to her to be living in a different environment, but a necessary one for her safety.

It is so hard to see our parents decline and see them so unhappy. I would recommend that you check with the doctor about putting her on an antidepressant. I did the same with my mom. Unfortunately it can take several weeks for antidepressants to take effect, so it will be awhile before we know how much it helps Mom.

Give it some time with your mom. Know that you did the right thing, even though it feels really bad right now.

I have learned that I know my Mother better than any Dr., nurse, social worker etc..
If I see signs I question it, I raise my concerns within reason. Medication not given correctly can cause unstability. Confusion and unstable environment can cause unstability. Conflict can cause unstability. Communicating with the staff about care and meds etc. should be discussed if there is an issue of concern. I make sure it is noted when Mom is having a good or bad day. This helps the Dr's and staff help her. My Mom thinks she works in a hospital. I go with it. Sometimes she tells me she working, so I say I was passing by and thought I'd see if you could take a break and she says Ok I'll take a break. Instead of fighting her mental state I go with it. It works for me and she seems content with her reality. She is safe and happy in her own reality so why should I burst that bubble. She is clean and eats and gets exersize and I know I could not provide her with the care she needs daily but I also am very aware of the care she's getting and that her daily needs are met. This is all I can do in the situation. I am actively aware and make my concerns known and do not rest until they are resolved.

How indeed are we supposed to know what is right? It sure isn't in the guidebook on how to be a daughter or how to be a wife, is it? Sigh.

In your situation, I think an important factor is whether or not your father has dementia. If he does, chances are it will get worse -- that is what dementia does. If the progression is very slow, it may not make a difference in this decision. But if it progresses faster it may mean that assisted living will no longer be suitable. He may need more care than an AL can provide. Does the place you are considering have a "next step"? Do they have a memory care unit or skilled nursing unit he could transition into if/when the need arises?

There can defintiely be improvements to quality of life, whether he has dementia or just age-related decline. But with dementia it is important to realize that improvement to qualtiy of life is what you can hope for -- improvement in the disease itself is not realistic.

Best wishes to you as you struggle with this.

And thanks for the kind words, by the way.

How are we supposed to know what is the right thing to do? I've been totally thinking about moving my Father into AL with the hopes that it would IMPROVE his dementia/depression. Thinking that he is too isolated here; with people around and activities (not that he would participate in many) that maybe he would improve. I could see his eyes kinda light up when they started talking about happy hour and dinners out/ lunches out/ old movie night.

But now he is afraid of the change. He just moved here one year ago and it was a total shock to him; he has declined rapidly. I hesitate to 'push him out' though I feel his social isolation contributes to his decline.

So it scares me to hear of people actually doing worse in AL than better. Of course, all the AL folks tell you is that quality of life will improve. I realize they are salespeople.

OP, Good Luck with your situation. Jeannegibbs always has awesome words of wisdom!

Thank you all for your responses and help.

My mother-in-law's dementia got much worse with the shock of her husband dying, then having the doctor tell her she couldn't live alone anymore. I believe that a sudden change can amp up the dementia. Maybe your mom's doctor can get her on some meds like Namenda or Aricept if she isn't already on it.

First, hugs to you. This is a very difficult disease for those that love the person that has it. Dementia strikes the whole family.

Dementia is progressive. It gets worse over time. That is what it does. This is not caused by moving into a long term care facility or by not exercising enough or by daughters missing a daily visit or by wearing pink bunny slippers. Progressive dementia progresses. I'm sorry to be so blunt, but I think it is essential to accept this truth to make any forward progress.

First, toss out the guilt. We do not fully understand the causes of dementia, but it is a certainty that you did not cause your mother to have the disease. You did not cause it to get worse. You helped her find a safe place to be as the disease does its thing and Mom inevitably gets worse. Congratulations. You did good. Enough already with the guilt.

Accepting that the disease is going to do what it is going to do frees us up to respond in ways that improve the patient's quality of life. Accepting her current reality, or at least not trying to disprove it, is one way to help Mom stay calm. She thinks she is in a school? Fine. Fall break isn't until next month -- that is why no one is coming for her right now. What is her favorite school subject? And don't beat yourself if you "say the wrong thing." Sheesh, how are we supposed to know what is going to set someone with dementia off? Learn from your "mistakes" and try to approach things differently next time.

Depression is often a component of dementia. I think you are on the right track to talk to her doctor about an antidepressant. It won't cure her dementia or stop it from progessing, but it may relieve some of her unhappiness.

Paranoia and hiding things goes with the territory. If she weren't in AL she would be doing it at home. I'm sure the staff is well aware of this. Again, I'd try to accept her reality while trying to soften it. "Oh look! Whoever picked up your wine must have done it by mistake, and now they've brought it back."

If she can still walk (no wheelchair) then walking is absolutely excellent exercise. And participating in group exercises is good, too. Getting in the movement is what is important. You can go for walks with her when you visit, and encourage participation in exercise sessions offered by the AL.

You can't cure your mother. You can't stop a progressive disease from progressing. But you can (and I am sure you do) bring her comfort and ease her burden.

Best of luck to you both on this very difficult journey.