Thank you Elmer. I've been crying all day. That was a very good perspective.

We haven't dealt with it so far. Most of our oldsters have passed and never got to the stage of dementia. That being said, I certainly, and have voiced it, hope that if I get to that point that my daughter will arrange for me to be in an assisted living facility or memory care center. I would never want her to get to the point of frustration, exhaustion in caring for me or DH.

I hope you find the strength to do the right thing for both you and your loved one. It's a very difficult task caring for them day to day. Hugs to you.

When my mother went to memory care, it was a godsend. She had been at home with caregivers, not all of whom are good with dementia, and she could not be left alone, which is impossible. She caught the flu (from a caregiver) and spent several days in hospital, then they recommended rehab and recuperation. She went to the same facility our dad was at after his stroke, and after her recuperation she was doing so well there, she stayed, moving to memory care. The social stimulation, routine, and activities suited her perfectly, and she received excellent care.

I recommend following a support group such as on alz.org. I learned a lot of techniques for, among other things, facilitating the adjustment to the new digs.

Assisted living was a godsend for my father-in-law. We tried him living with us, but he needed around the clock support which we simply were not equipped to give. The facility was 5 miles away, so we were able to spend time with him every day. He had planned for this financially, so no problem.

I am so sorry you are struggling with this. An oldster judgement can become impaired such that they think they are more capable than they are. Perhaps they don’t think they need their cane or walker for a short distance, only to take a tumble followed bya tripto the ER. If the elder begins to argue or becomes defiant, that has got to make it all the more difficult to try and keep them safe.

And it can be very crazy stressful when their spouse is a bit less impaired, but makes poor decisions for them. It is a difficult situation.

You have my support and compassion.

My mom actually got better and was happier at memory care. The unit was set up for dementia residents, the staff was great, and she has a lot more socialization. It was a really hard choice, but one I should have made sooner.

My mother refused to even have a conversation about moving to a life care community, even though there is an excellent one nearby. Unfortunately, when she decliled significantly, she was too old to move.

In the end I hired 24 hour caregivers through an excellent company that is associated with the life care community. It worked out well for mom but left me with a lot of worry and responsibility. It was also more expensive than having her move, not to mention the expense of keeping up the house.

I will never forget the total exhaustion of watching out for mom before I got caregivers. I was never so tired in my life.

The best thing for both of you is for her to move where she can get the kind of care she needs and you can live your lufe. I truly believe this. Unfortunately the best facilities often have waiting lists, so be prepared for that. Choose the best she can afford that is nearby so you can drop in often.

My heart goes out to you. Its so hard.

When a normally competent person has made the assessment that a higher degree of care is needed, the views of an oldster with diminished mental competence need to be ignored. It can be hard but a way to think of it is that the oldster speaking today is not the same person as before. Likely the same person 10 years (or whatever) earlier looking at a different person but with the same issues as they have themselves now, would have been capable of making the same rational decision as is being proposed.

But that doesn't matter. By definition, someone needing to be in a facility with greater supervision and care for those afflicted with whatever kind of mental decline they have are not in a position to make a thoughtful assessment of what's best for them.

I've been going through this for the past year. Unfortunately, my oldster is combative and too intelligent to manage with normal dementia tactics. She was in a facility for a time that supposedly was specifically for memory care patients and came highly recommended by local physicians. The managers and sales people all talked a good game, but after we moved her there, we learned from the on-the-ground staff that the only difference between the assisted living portion of the facility and the memory care section was that the exit doors were locked and the staff made rounds every two hours to check on the patients. They could not handle the needs of my oldster at all.

All facilities are different, but I would warn you to not take the word of the management about anything. Visit the facility in the middle of the night and watch how the staff functions.

After the facility fiasco, we kept the oldster at home with 24/7 caregivers which is hugely expensive. I spent a lot of time getting a stable staff in place that my oldster would tolerate. However, she got to the point where she would lock them out or call the police to remove the help.

I'm sorry to say the family finally gave up trying to manage her day-to-day. Her long-time housekeeper comes three times a week to keep the house in order and make sure needed supplies are on hand. Someone checks on her and takes her dinner every night.

We don't try to manage her meds or hygiene any longer. When she falls or has another health crisis, we will step in and handle it.

I'm sure you will all have ideas and suggestions for me, but believe me when I say, we've tried it all. I know my oldster would be happier in a facility where there is more social interaction, but at this point I have to accept that we cannot control her life and deal with the consequences of that.

I hope your oldster is more accepting of assistance. This is a tough journey for you both.

My dad had Alzheimer's and fought moving into assisted living. I tried to accommodate his desire to stay home, but as you are experiencing it will take over your life. I was his case manager, not his daughter. The no shows of aides for shifts (and some stole from him), I had to keep track of his meds, refills, and zillions of doctor's appointments.

One day I just couldn't do it any longer. I am an only child, I used to travel for work and the stress of trying to honor his wishes was more than I could keep doing.

So I moved him in to a wonderful place. He loved it. I should have done it years sooner.

I've had to deal with a number of situations as well as have friends who have as well. *All* of the wished they'd done it sooner as it stops them from spending all the time with their loved one as a "care giver" and allowed them to spend time with them again visiting and adding to the quality of their life. Further having 'professionals' care for them takes a lot of the 'personal' aspects out of it making it easier for them to accept the care they need. The family dynamics are absent for the everyday care functions and cooperation improves. My GF was amazed at how her Mom bloomed when she went into the nursing facility....often couldn't find her because she was busy on a trip or watching a musical program and other things. Her social life improved dramatically.

It's not easy for sure, but I think you will be happy with the outcome.

When my mother's Alzheimers got bad, it became exhausting and debilitating for my father. Mom would go to bed and then be wide awake half an hour later. Or she'd be up in the middle of the night "getting ready to go to a party." One afternoon a sheriff called me to tell me that they had found Mom wandering in a tee shirt and diaper, and threatened that my father could be charged with neglect. He was so sleep-deprived that he'd dozed off.

We moved Mom to memory care and Dad into assisted living in the same facility.

Near Dad's end, when he was in hospice, they moved him into the room next to Mom. I stayed at his bedside for his final two weeks.

I will never forget the night I went for a walk at about four in the morning and ended up in the common room. There, sitting in front of the TV, was Mom and a couple of other memory care patients! It was so comforting to see that she had company when she was up in the middle of the night.

My DM was found to have dementia after being hospitalized due to fractures (from standing on a chair!) I knew my limitations and that I could not care for her in my home. She may have moved to a care home more easily but for one of my sisters who wanted them to live together. There were multiple reasons why this wouldn't work. DM finally agreed when her doctor spoke with her, telling her she must move to the care home. It ended up working out very well in the long run and family could enjoy a relationship with her without being exhausted with her care.

My dear friend is dealing with her MIL, whom they moved from one state to be nearer. MIL had a hard time at her previous senior living, and now here, and is not satisfied with anything. She has been in four exceptionally wonderful places, and always wants to leave. DF says that that is her nature, and it is only worse with dementia. It is hard to give up being responsible for someone’s behavior, sometimes it just is what it is.

It is true that when my parents went into care home, I was able to be their daughter more.

It is also true to not trust what the salesperson tells you. Talk to people, to residents if possible, and to family members. And, it is very possible that in your searches you wilo come across an employee whom you previously met at another facility. Talk to them about both places.

Also, consider not-for-profits, especially privately-funded ones. They may not be as beautiful as the corporate chains, with bells and whistles, but the funds go into the care of the residents, and quite likely the food! Good food is an important factor!

" consider not-for-profits, especially privately-funded ones. "

This is a new term for me. What do you have in mind when you refer to a "privately-funded non-profit"?

Aren't all non-profits "privately funded"? Those that may receive governmental money would do so because they provide services a government subsidizes - I'm thinking of Medicare, Medicaid, schools and the like. For-profit organizations can be eligible to receive that kind of government money too.

Thank you for all of the kind and caring responses. I have been sleep deprived for a long time now and overwhelmed. I really embrace the idea of being a daughter and not a "care-manager." The place I want the most is affiliated with a religious organization. We are Catholic but the affiliation does not matter to us. It is a non-profit and quite lovely. I visited the summer and was quite impressed. I'm more worried that he will hate me or spend all his time "trying to go home." This was a constant refrain in the hospital.

Also check with your state. Our state publishes information about their inspections of various places and you can see how they rank overall. Maybe your state does something similar.

My cousins tried to keep my aunt at home, with all of the struggles others have mentioned - but when she set the kitchen on fire they finally realized that it wasn't a safe situation for any of them. And, like others, she was happy in the facility.

Having the financial means to move her into a good facility makes all the difference in the world.

Fortunately my dad did, and the staff were wonderful where he was. Another family member did not, and in that town, the better facilities did not (in general) admit Medicaid patients. As one admissions staffer told me, they reserved their "Medicaid beds" for their long term residents whose resources had become depleted. They had a real struggle to find a place for her.

My loved one has financial means and insurance. My biggest concern is keeping him safe with the parade of caregivers in my house. The turnover rate is high and there are a lot of cancellations which make me really stressed out and worried. We need some consistency.

Annegriet, my mom’s caregivers came from Waverly Care, which i think I mentioned before. There was never a no-show. Since they were hired through the company, all had been vetted. If you’re still considering in home caregivers, you should call them.

@Annegriet, The company I dealt with was fabulous in making sure that we always had coverage even if they had to call in a special favor from one of their employees. It took a month or two before we had a steady crew that we felt were of the quality we wanted. As I said, my oldster is uncooperative and mean, so it took really special caregivers to put up with her.

I can't offer direct advice, but I do offer a great big hug. (())

I feel for you. Its time and its ok. The number one concern is safety. Think of it this way-one person can’t possibly do the work of a staff of workers in a care home. My Mom is in a MC unit. My advice-don’t announce a move there. It will cause undue stress with him fretting and angry. The facility will work with you to come up with the scenario of bringing him there. DR sent him there for ’rehab’ is a common tactic. Or go for lunch with a ’friend’ (worker) then leave for an errand while she takes him to meet some friends. Move his stuff in while he’s busy.

Your loved one will have socialization which is very important with dementia. He will have activities and meet friends. Most appts can be done on site-Dr, podiatrist, barber, psychiatrist.

In the meantime you can practice some self care. Join an alz support group. Some are online via Zoom.

Mom has been in more than one facility over several years. She is doing very well and turning 92 this month.

I'll only say I'm sitting alongside you. I mean, my mom died years ago. And it was hard to have to lose her as my parent, and have to be the responsible one. I totally hear what you're saying. It's still a struggle. I'm there. Beside you.

Sorry you are going through this. My aunt, a widow, remarried ,and had this situation with her 2nd husband. He developed dementia, wanted to wander, and she wasn't big enough to stop him. At first, his children weren't on board, but came around when they saw him in action. It was hard for everyone. He was fortunate to have excellent insurance coverage for extended care.

This is so hard. You sound like a wonderful daughter who wants to do the right thing, of course. Please remember that the mom who is resisting is no longer able to determine what is in her best interest. She is not the mom who you can reason with, who would want to make it easier and less stressful for you. It is her dementia reacting and it's not reasonable or compassionate. We children need to gird our loins to become the 'parent' and do what needs to be done, for them and for ourselves. Hopefully, you can be comforted knowing she will be getting great care, companionship, etc., even if she doesn't know how much better it will be for her. YOU know and you just have to assure yourself that you are doing the right thing for you both. She, hopefully, will settle in and may forget her resistance, so you can go back to a better relationship with her.

Sacrificing yourself does not benefit her or you. Wishing you the best. Give yourself a lot of grace as you move forward. You are doing the right thing.

Does a move to care have to be 'set in stone'? I like lisa's advice about 'trying' a MC facility 'on doctor's advice'. Your Aged Parent doesn't need to think it is permanent -- and it doesn't even have to BE permanent, but that's your (not his) mental wiggle room. You will still have to gird yourself for AP's complaints. Staff can help you deal with that. You can give this a month or so to see if YOU think the place is a good fit. You will have a rest during this time and be better able to judge the situation. In fact, I'm going to 'prescribe' your AP's move to MC for your own well-being!

As an only child, I too was sole 'decider', but I'll point out one plus side of that: No sibs or other family members are going to second-guess you.

I'm so sorry for what you're going through. I was in your place as mothers medical POA many years. She refused to discuss leaving her home even though she was a fall risk and not really safe there alone. She did have some dementia but could manage her life to a degree....that is not to say she was eating well or making all wise decisions.

She fell in her back yard one day and while not hurt, scared herself when she couldn't get up and couldn't make her neighbors hear her. (she had a life alert necklace she refused to wear).

Finding the right place for her was a full fledged nightmare.

We got it down to a routine. DH would take the staff entrance and check for cleanliness that would otherwise be unseen. He'd check the outside grounds for care, go to the maintenance room and meet the people there - completely uninvited, I'd interview inside staff, eat in one of the dining rooms, track down housekeeping, try to see what would be taking place.

We visited more than one facility with 'memory care'. They were not right for mother - one had so many locked doors and such an atmosphere that we didn't even finish the tour - DH just announced 'we are leaving' and we did.

Finally. A lovely facility where I could easily live in the independent wing myself. They had a wing called 'enhanced assisted' which was not full on memory care but a little more help than assisted living. The only thing that made it less than perfect was the location, a 2 hr drive for us one way which we made every week for three years. RN on site 24/7. Pool, library, chapel, several dining rooms from a casual soda fountain all the way up the line to formal service. (when Mom did finally gain some needed weight - they had begun delivering her food to her apartment three times a day 😊)

Why oh why do not more places offer something like 'enhanced assisted'. There are many who could use those skills and attention without the sometimes stifling atmosphere of full on memory care. Mother has been gone these last three years and I still miss and appreciate those who cared for her - and I was able to spend time with mom and enjoy her, not be cleaning, shopping, balancing her bank account and only working every minute I was with her.

If you have the opportunity, try to find out how often and how many changes in staff take place. If people are employed there and stay, there is a better chance its a good place to live.

I like olychick's sentiments with one exception. I especially like her praise of the child who has to make hard decisions, and her pointing out that the human needing intervention IS NOT the same person with the same personality and mental presence as years before. Your parent, or anyone else's parent in similar circumstances, is relying on you to take the right steps to make decisions for them they can no longer make for themself. Their reactions in such a state need to be kept calm but don't need to factor into the decision.

While that's a solemn responsibility, it doesn't need to trigger an emotional reaction. I get the sadness, regret and heavy heart of that person losing their cognitive abilities and, in essence becoming someone else. It's like a death, the person formerly known is now not present. Moving on from that, making decisions to best provide for their care shouldn't be an emotional challenge. If anything, it should be the opposite - doing so brings happiness and relief of knowing that the person will be safe, protected and well cared-for.

Morz--when you said "I could easily move into the independent wing"--I thought at first you did that. I read an article about a man who moved into senior living with his mom--it was in the NYTimes in 2016. I would totally consider this but I think it's cost prohibitive for me. A tiny studioi for $3600 per month and I have a dog. I love the idea of 3 hots and a cot but I am still working. Would I be crazy to move to independent living at 57? My parent and I would still be together! I am spinning.

We have been on this road with my MIL for 2 years. She insisted on moving from a community that we thought was excellent to another which seems less so. She is currently in assisted living and if the memory care seemed more stimulating that would be a better plan. She has fallen numerous times and sometimes disruptive behavior alienates her neighbors.

She is several states away—- we had tried to get her to move local to us both before and after the dementia became a problem.

She is constantly unhappy. Sometimes calls her sons either very angry and abusive or pleading and crying. She complains of boredom, not engaging well in the community. She believes that she is capable of going back to Martha’s Vineyard ( no good medical care) where she thinks she was happy.

We think this is her essential personality but unfiltered. It is terrible to know someone is unhappy almost all the time. Her doctor asked if she felt depressed, she said no and maybe he accepted that.

No, we didn't move in but there were people living there who still kept their cars, had spacious two bed two bath apartments, meals and housekeeping. Laundry on request. Small pets at least were welcome. I made friends with a cat and noticed quite a few small dogs when using the elevators. Larger city with social opportunities and interests.

It's two hours from DHs many friends but I could be happy there I think if this big house gets to be too much for us - and it will at some point. Its on an acre and I couldn't begin to take care of house and yard if something were to happen to DH.

Mothers apartment was not two bedrooms or two baths, much smaller. We managed to fit in her favorite pieces of furniture and a few of her collectibles. Rent for the apartment was approx $2700/mo and that included all but her personal phone and internet (meals, housekeeping, transportation to appointments included ). The medical help and aid was a separate contract that was reviewed every six months. It was approx equal to her rent until those very last weeks when that expense became higher as her needs became greater.

Annegriet - I have nothing to offer but moral support. We’re headed that way with my mom, and know she’ll be kicking and screaming. Even discussion such as moving in with my sister is shut down immediately. Her plan is, always was, and always will be, to be removed from her house in a body bag. Not very helpful for us.

Elmer - I believe bpath was referring to foundations when she said privately funded.

What is the difference between a non-profit org and a foundation?

Funding. Private foundation versus public charity or other non-profits.

food, the word "foundation" has no legal meaning.

There are terms everyone is familiar with, though perhaps not always knowing what the significance is, that define various types of entities under the law. "Foundation" is not one of them.

food, the word "foundation" has no legal meaning.

“Private foundation” is one of two designations under IRS 503(c)(3). The other “public charity.” A primary difference is the funding. I’m sure you can still nitpick about the common and legal (or lack thereof) usage of the term foundation but I’m equally sure no one cares. This thread is about sending people to memory care.

bpath mentioned "privately funded" non-profit which I questioned because to me, that has an unclear meaning. What does "privately funded" include and exclude? You attempted to clarify by suggesting she meant "foundation", which also has no specific meaning.

I don't believe 501(c)(3) (I'll assume a typo) says anything about private foundations, it's elsewhere. But anyway, "foundation" on its own is a meaningless term. There are "private foundations" and "public foundations" (the latter are sometimes referred to as "not a private foundation"), the difference between them having no effect whatsoever on a person receiving benefits or services from them.

So back to the thread, as you mentioned, I was and remain puzzled by the recommendation described by bpath for elder care.

An example of the nebulous nature of the term:

Kaiser Foundation Hospitals is a huge entity that operates in a number of states. Despite its name, it is not a "private foundation" for income tax purposes but it is an exempt (non-profit) organization.

Its revenue comes only, indirectly, from its members, who number in the millions. Not from the general public. Does that make it "privately funded"? Also interesting to note is that while it is an exempt, non-profit entity, it's not a "charitable organization".

In many areas, this being no different from thousands of others, word definitions have specific meanings which when used by people without direct knowledge, can get muddled into uncertainty. Which was why I asked originally for clarification.

https://www.irs.gov/charities-non-profits/determine-your-foundation-classification

My guess is it’s a non-profit that counts on residents to pay rather than fill empty beds with medicaid cases. But hopefully bpath will be back to clarify.

That's a meaningful distinction.

It's not like facilities need to be on a par with a Fairmont Hotel but neither would those able to afford more be happy with a down market place (services wise), when there's a choice.

The oldster in my family is in a facility operated by a for-profit entity. I don't think that in and of itself was significant to the family members involved with finding a suitable place. More important to find out about is how well and thoughtfully it's run, how carefully and competently employees are selected and managed, etc. Happily, the place, which is far from being in the "Fairmont class" but also not at the Medicaid level, has provided an excellent and happy experience for both the resident and family members who visit.

I don't think legal structure or tax status is nearly as relevant as being lucky to find a facility that's well run with happy and well-looked after residents.

Today my Dad is super lucid and mostly on top of his game--wouldn't seem memory care appropriate but last night kept asking me over and over the same questions about basic items in the house--like his pants, his blanket, his coffee, etc. This disease befuddles me. The good days/bad days. The good hours/bad hours.

This see-saw of decline is common. It's heart-breaking for family, whereas staff in memory care facilities deal with it at a remove -- which seems to me to be better for the afflicted. It's their job to patiently answer the same questions over and over -- and then they go home. It's their job to monitor patients on a night shift or a day shift -- and then they go home. It's your job to visit the facility to make sure the patient is safe and well cared for -- and then YOU go on living your life, as you must if you are to remain his loving daughter, visiting often and ensuring he is in good hands. He will be glad to see his healthy, loving daughter for a while yet.

I think you need to settle him in care for his own sake as well as for yours. He can't be well, but you can and must remain so.

I think what you describe is what makes it all so hard when a loved one has dementia. It causes us to question ourselves about whether we actually need to take action right now.(Is it really that bad? we wonder. He doesn't seem that impaired. Maybe it is a bit better, etc.) But it is always one step forward and two steps back with dementia. But, right now, there is no cure, nothing that will return him to his former self. I think there are some medications showing progress with certain kinds of dementia, but his physicians will be on top of that. I hope you could enjoy a bit of having him more lucid for a little while.

I went through this with my mom who had dementia starting about 10 years ago and she died two years ago. My DH has been going through this with his mom for about the last 6 years and is still in the middle of it.

Two things - you have to be honest with yourself about what your own abilities and limits are with respect to emotional needs, physical limitations and knowledge of care required. It is also essential that you are honest with the facts of the situation with your parent. He has dementia, he is not going to get better despite having a "good" day, he is only going to get worse. There is no cure, there is no recovery. You have to be honest about how much can you actually handle.

You can call me the B word if you like but I was not ever going to be my mom's caregiver. Not in my DNA to do that and I know my limitations. She sold her house and I found her an apt to live in close to me. When she couldn't handle her cash anymore (every 2 weeks she would go to the bank and take out $200 for groceries/incidentals. The bank called one day to tell me that she wanted $2000. I told them to give her $200 and count it out as $2000. They did and she was happy.) It was time to move her into a residential facility with memory care.

We DID NOT give our mom a choice. At this stage they are toddlers. They want their way and they will have a temper tantrum if they don't get it. We found two really good places for our mom and we let her choose one of the two. It was our preference so we played up the good aspects of it. i.e. we directed her choice.

I am very good at managing all the little things and so she never had to worry about a thing and the level of care that she got was unbelievable and the staff became her "family" and it became her home. She died at "home"

Meanwhile my DH has allowed his mom to make all the decisions and they have wound up in .a mess.

I did go to the courses and meetings that the Alzheimers groups put on and I always remember them saying - It is okay to lie to your loved one - you just have to make the lie believable and to remember it. We did tell my mom a couple of lies when the dementia got worse and the lucid periods became fewer. They were harmless but told just to keep her calm.

I feel bad for those of you who are having a difficult time with elderly parents.

Great advice @blfenton. It is helpful to remember you end up negotiating with someone who is very much toddler-like and we all know how toddler/parent negotiations go.