Not sure what to do!

Tracy B65 · July 9

Back in February my mom wasn't answering her phone one morning. I went to her house and found her on the floor of her bedroom, presumably she had been there most of the night. Long story short, after a month in skilled care, she went to an assisted living facility and she will not be going home.

She is not adjusting well and continues to ask when she can go home. I've tried to explain to her that the AL facility is her new home.

I go to see her every morning for about 30 minutes. When I leave, I give her a kiss and tell her I love her. Up until about three weeks ago she always returned my comment with "I love you too!" Now she just looks at me and says nothing. I asked her once if she doesn't love me anymore. She responded with "I don't know why I can't go home!"

She's mad at me and I suppose she blames me for her being there. I just read about anosognosia and I'm sure that's part of it. I also read some comments about the negative "reels" that go through their minds…bad food at the facility, etc. These conditions describe her perfectly.

I'm just so sad! I'm not sure what to do!

pamu · July 9

I'm in the same boat! My mom has been in MC for 10 months. Every visit she tells me she wants to leave or "move". She doesn't decorate her space (we've stopped trying) and the negative reels in her mind go non stop. She has all her belongings in two bins so she's ready to jam at a moment's notice. She refuses to put her clothes in the drawers. It's so difficult. Mom's meds have been adjusted a couple times for agitation, paranoia and delusions. I know adjustments will continue as her symptoms progress. My sister and I visit often, bringing her supplies, gifts and treats. It doesn't matter though. She looks to me to "save" her and to take her out of this circumstance. Prior to being at this MC, I found her a lovely AL group home. It was perfect. She toured it and liked it. She was thrilled to be moving and enjoyed the first couple of days. Fast forward 18 days and her agitation and delusions increased and she eloped (to a house down the street). So now she's in MC and cannot understand why she can't have her own "place". She tells us she wants to move out of state but she doesn't know where. LOL…gotta laugh or I'd cry. I tell my mom that I love her when I leave but she doesn't say it back. One of the positive things is that her charge nurse communicates with us several times a week to give us updates and share notes. She is everything you hope your mother's nurse could be so we feel blessed she's there. There are other staff members there that she likes too. I remind myself that my mom is grieving her loss of independence. I wish she didn't feel like she is all alone. She could have visitors every day and go out on outings. She has siblings and my sister and I to do things with but because she is exit seeking no one can take her out for outings for fear that she wouldn't return (which we've discussed with Geri-psych). I try to remind myself that she needs to be there and I can't make her happy but I can make sure she is safe and is cared for. I wish I had advice. Keep showing up and telling your mom you love her.

caregiving daughter · July 9

First, I believe that our loved ones take out all their frustrations and anger with those that they are most close to. Please review more posts, read books on the subject, or go to a training such that you understand that none of this is your fault. You are not to be blamed, rather, you are to be supported for the very difficult decisions you are weathering through. Understand that, in all probability, there will not be a day where you walk in and your mom thanks you for providing support. Once you accept that, you will begin to shed some of the guilt you may be walking around with.

When you leave her facility, continue to give her a kiss. If she is having a bad day, and she turns away from you, quietly depart. Days like that were hard for me so I would go find another resident, out of sight from my mom, and talk to them for a bit to try to bring a little joy to someone else.

When she asks you when she can go home, I would not recommend telling her that this is her new home. I would acknowledge her comment with something like, "yes, mom, I know you don't care for the food here". If she persists, share that, for right now, the doctor has asked that she have nursing care. You then flip the subject to something else… show her a simple gift that you brought or tell her you heard a funny story. We had an especially rough experience one day where my mom was scolding me quite heavily and the only thing that worked is me pointing to my ripped jeans and explaining that I fell and may have sprained my ankle. While her judgement was gone, she was able to interpret the ripped jeans as a physical cue, and showed some empathy—enough that she said she was okay to stay in the mc for the night. My mom lived there for almost eight years. Please hang in there. I know you are very kind to your mom—please also be kind to yourself.

SusanB-dil · July 9

Hi Tracy - Welcome to 'here', but sorry for the reason.

Most of us have to use fiblets. Try telling her that this is temporary and that she is there for rehab so the doctor can best know that she will not fall again. (or be on the floor, however it happened). Make it 'doctor's orders', and hopefully that will take the heat off of you. Unfortunately, she may not remember that, but rinse and repeat as necessary.

A lot of times we need to use a fiblet that LO needs to be there because the house is being worked on due to 'busted water main, or electrical outage'… whatever works.

Sorry you are dealing with 'this'.

H1235 · July 9

You have been given a lot of good suggestions regarding how you might spin her stay to take some heat off you. I hope you can find something that works. My mom is unfortunately just with it enough to see through these kinds of stories. I think the dementia has amplified her distrust. If nothing seems to work, it’s not your fault. If things get too bad you might want to talk with her doctor about medication. It’s so unfair. We do so much for our loved ones and yet we are blamed for everything. What’s worse than that is the fact that my mom thinks I am treating her unfairly by just putting her in a home for no reason. Dementia is the worst.

lilacgirl · July 9

It's a very common scenario, and knowing that you are not alone hopefully helps a little bit! I handle this kind of thing by allowing my mom to continue to believe that some day she may be be able to go home — she seems to be fine as long as she believes her current stay in the ALF is temporary! I just sort of get her to agree to stay a little bit longer. Day after day. :)

Not sure what to do!

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