What do I do now?

This is what is now commonly known as the long goodbye, and a good many people on this forum know what this is like. The body of the mother you once knew has been hijacked, and is inhabited by a new entity - neither mother nor friend nor stranger.
Perhaps my experience might give you some direction. I am currently in a similar situation with my mother in a memory care unit suffering at least 3 types of dementia as well as other health issues. Sometimes she knows I am her daughter, sometimes she hates me, sometimes she ignores me, always wants to go home, but has no idea where that is or what it looks like or even what 'home' is. I live a long distance from the facility but visit every few weeks, meanwhile my siblings visit a few times a week and get the same responses.
After 9 months in care and deteriorating rapidly, we are starting to curb our visits to our mother because, like others have experienced as you are currently, those visits tend to upset her more than being useful. We feel for the wonderful carers and nurses who have to pick up the pieces after we leave.
My suggestion is to start letting go of your mother slowly, make the visits less often if you are comfortable with her care. By all means make regular phone calls to check on her welfare if you feel the need. Gradually start picking up the pieces of your own life, or find a new life if you feel you have lost the old one.
Believe me, there are more people on this forum that appreciate first hand what is happening to you, but will probably not respond. Just know that we do understand.

I think you need to give your mom time to adjust to her new environment. If she's doing better when you're not there, cut down your visits. You are not 'turning your back on her', but allowing her the time she needs to adjust. She's in good hands as you are no longer able to care for someone this old, with THIS many issues! It's amazing you've been caring for her for 4-1/2 years, that's very commendable!!

You can always go visit mom without her knowledge.......in other words, go check on her from afar to see how she's doing. Check in with the nurse, etc., and make sure all is well. When you do go to visit, take her a treat or a small gift and let her know you love her. That's all you can do. Let mom know it's doctor's orders that she's cared for in this new and safe environment. Like DollyMe said, when he writes a letter releasing her is when she can leave.

We care givers all understand how difficult these decisions can be. But at this stage of the game, you need to keep HER safety and care in mind, as that is the most important thing. Do NOT let ANYONE guilt you into thinking you've somehow made a 'bad decision' here. You haven't.

I think it's good you see her, but not every day or too often.  You've got to move on to the next steps in your life, too, not having her there.  Though blind, deaf, and suffering with dementia, she still knows the touch of your hand in hers & on her face, that you're there ~ comforting her to know you're still nearby, visiting, watching out for her, bringing her little fave treats & gifts.

When she wants to know when she's leaving, just say the dr. will let you know.  It's very hard cause many cry when we arrive and when we leave.  But they're usually ok once we leave, according to workers I've talked with, and their happy voices I hear on the phone later.  It's a sad time for everyone, and my heart goes out to you both.

Try not to be hard on yourself whether you see her as often; maybe once a week or every other week; you decide, not workers.  You're both now going through big changes in living arrangements and will miss each other's companionship.  Enjoy every moment you do visit, and know you've done your very best, made the right decisions, and made life great for your sweet Mom.  But for you, she may have had no one to care for her. 

Take care.

It's true that at first your mom may not adjust as well if you're constantly there, so you may want to give her room/time to adjust. But please never stop visiting totally. (For one thing, it keeps staff on their toes if they know family are involved.) You now have more time for yourself, which is great. But moving a parent to a nursing home isn't like putting someone in a coffin. Don't be manipulated into guilt for moving her to this safe place, and don't be manipulated by less devoted types who tell you your mom doesn't need your visits. She no longer needs you 24/7. In time you'll find your own tempo regarding how often to visit, how long to stay. Your mom will on some level know you and take great comfort in your visits.

I’m sorry you’re going through this. I know that seeing my mom in a nursing home was the hardest thing for me, even though I knew it was what had to be for her care, it was never easy. Please continue to visit, you are your mom’s advocate as she lives there and the staff needs to regularly see that she has someone who is watching and that she’s a resident that is cared for. You’ll have to find a new normal for how often those visits happen, and don’t impose any guilt on yourself when you’re not there. You’ve been a great caregiver, your job in that is different now. It’s also time to develop or reignite hobbies, do things your enjoy, spend time with others who give you joy, and consider what you want the rest of your own life to look like. I wish you blessings in this

I feel for you. In September we moved 91 year old, mostly blind and OCD MIL into a dementia care facility. Prior to moving there she would ask jokingly about moving in with us. In prep for the move, the staff advised that we be there the first day to get her settled and then not take her out for the first while to allow her to get used to the routine. As others have posted, it seems that these facilities ask for time to allow the resident to settle in. Plus, a benefit of these places is it takes the 24/7 care burden away from family caregivers. So, as others have said, i recommend you start rebuilding your life with new routines focusing more on you and including time to visit your mom, if that is what you want to do. I do think it is a good idea to give the facility some time and space to ease her into the routine. If you want to visit during settling in time, I suggest you keep your visits short and allow the staff to do the care, even when you are there. What we thought was nice was being there at lunch a couple of times to help her strike up conversation to get to know some of the other residents. Her two sons have her to their homes for dinner once a week each. 3 months in she has found a rhythm . She spends a lot of time in her room alone but she does participate in some activities, has formed relationships with a number of the care workers, she goes for short walks around the floor on her own, she is interacting with other residents, she says the food is good and she is no longer asking to move in. Because we visited over lunch we know the names and a bit about the personalities of her meal mates so we can use that info for conversations with her. Do what you feel is right in your circumstances, and I suggest you consider the staff info as advice not as mandates.

You are her support system even when you are not in her presence. It is not a case of "turning your back on her". Let her transition into the next level of care she needs and give yourself permission to transition to the next stage of your life.

You are her complaint department, this is very common, most want to leave...at first. It is wise to cut back on visits and phone calls so the patient can acclimate to their new surroundings.

Yes, it is time to move on with your life, visit her, if she starts.... leave... telling her that when you receive a letter from her doctor(s) stating that she can return home you will take it under consideration...the doctor(s) will never write such a letter.

We care takers understand, my step father and his wife said they want to move to another AL because they don't like the food...they didn't like the food at the previous one either...Ah, no you are staying where you are until you go to the happy hunting ground.

Responding to Meg25, my direct response is not appearing on screen;
If I kept caring for my mother at home just to begin with I would need: hospital bed that folds to the floor, plus thick crash pads all around, so when she rolls out of bed she only 'falls' about 8"; a swing lift to raise her off the floor onto the bed, into her lift chair (which would have to be purchased); bed alarms to alert me when she has rolled out of bed; an additional person to operate the lift, and if mother is in an aggressive mood, a third person to pacify her; a stand up lift to raise her out of bed, wheel her to the bathroom which will have had to have been totally renovated to facilitate transfers to the toilet and shower, again requiring an additional person to aid in the process; medical professionals who can do home visits because mother is so aggressive and disorientated she could not handle the half hour drive to surgeries and hospitals; locks on all cupboard doors so she could not help herself to medications, scald herself or burn a kettle dry; turn the gas on; bar on the telephone so she could not call the police 30 times a day during her semi-lucid hours; locks on all windows so she could not crawl out and over windowsills; deadlocks on all external doors so she could not wander (she sits in her wheelchair and propels herself around using her feet); a chain on the refrigerator so she cannot empty the contents onto the floor in a tidying frenzy; locked doors so she cannot access the study to rearrange files, remove books from shelves and so forth; remove all pot plants from the house to prevent her upending them or tasting them..........need I go on? Yes, I will.
This does not include dealing with choking episodes, aggressive episodes, uncontrollable crying, sleeping almost around the clock then not sleeping for a few days at all; knowing when, and when not, to give pain relief when pain cannot be articulated; fighting her to at least have a sponge bath when she has refused a shower for up to a week; dealt with her abuse, both physical and verbal; tried for hours to get her to eat and drink when she insists she is being poisoned; trying to get her to take her daily meds when she says she does not need them, or the chemist has given the wrong drugs, or I am trying to kill her; locking away the knives because she has threatened to behead everyone; and let's not even go near dealing with her refusal to have her soiled and wet incontinence garments replaced and at least have a cursory wash.
That all would have to be done in conjunction with running a household where I am already a carer to my husband, attending to shopping, financial matters, general household problems, attending to my own personal health issues, medical appointments and so forth.
That, Meg523, is the reality of advanced progressive dementia. I challenge you to deal with that 24/7 let alone for the 15 years you cite. There is responsibility and there is stupidity when it comes to dealing with this situation. The martyrdom that you espouse is not an option.

Go anyway. Keep your eye on the staff. Ask to see her chart. Hang out to watch how often they tend her. Visit with another patient who has no visitors. Show up at odd times unexpectedly. She doesn’t need to know you are there every time but the staff needs to know you are watching