My mother is in a memory-care home. I call her daily. What is the best response when she says, "I don't know what I am supposed to do"?

As a care giver in a memory care facility I can let you know that that question is not uncommon. In a good facility there are “activities” throughout the day. I’m often asked “what should I be doing?” and “what are we supposed to be doing today?” Our job is to try to get all of our residents involved in our activities to keep their mind and body engaged.

Little parts of their personalities come out. If she was a “doer” she might feel like she needs to be busy. She may want to “help” everyone if that was a big part of her personality. There is often one resident who feels that she has to make sure things are going well (ex. “That lady needs a drink.”)

As dementia patients, they love to do small projects that have a beginning and end. Things that can be handled easily. The love a visual that shows that the project is finished-or done, and love to be praised for their accomplishes.

Our residents run to the table when I put down a pile of freshly washed towels. They very much enjoy helping. I always make sure to tell them “you don’t know how much you’ve helped me! You did a great job!” I often let the interested ones follow me to see where I stack them.

She is responding to "past" responce that is not gone from her brain. The staff must be asking her to do. Just tell her...I am listening and talking and you are doing great and I enjoy talking...it means so much.

Prairiegoddess: Perhaps you should pose your question to the head/staff of the MC facility.

Talk to the administration, She may need to be coaxed to try doing things she always enjoyed. You are the best resource to let the memory-care home know what your mom's favorite activities are/were.

My mother lives in Memory Care AL for the past 2.5 years now. The past 6 months or so, due to advanced dementia, she now thinks she 'works' at the MC and it's her 'job' to be in the activity room every day looking after the other residents or some such thing, I don't know. She hasn't given me an update of her 'job description' so I'm not sure. She tells me she would love to have a 'day off' all the time, which makes me roll my eyes privately. It's good, I guess, that she thinks she 'works' at the MC and has something to do in the way of a job.

Things change constantly as dementia advances. While your mother doesn't know 'what she's supposed to do' today, she can wind up inventing a 'job' for herself tomorrow, in reality, that's how quickly the mind comes up with new scenarios. Perhaps write down a few things that would be of benefit to her TO do in the MC, like walk to the activity room to see what's going on, to stroll into the dining room to see what's on the menu today, to find a puzzle to work on, to go have a relaxing hour out in the garden or outside area the MC provides the residents. In other words, come up with a schedule of things she CAN actually do to keep herself occupied. Then call the activities director to alert her to the fact that your mom is hiding out in her room and she should coax her out of there daily. In my mom's MC, that's exactly what they do; they make sure each resident is up and out of their rooms by 9:30 am or so, unless they're sick or on hospice care.

Let her vent to you on the phone but keep it short; despair leads to more despair while upbeat talk hopefully will lead her out of the pity party and into socialization with the other residents. My mother has very, very little 'joy' in her life (and has always been this way) but staying busy keeps her from dwelling on her misery. That's the goal with her: STAY BUSY and forget her troubles. I will say, the one thing that DOES bring her joy is seeing videos & photos of her great grandson, which I make sure to show her. If that's possible/doable with your mom, perhaps you can send her photos on a regular basis, too.

Best of luck with a tough situation

There honestly isn't a lot of joy to have in where we go in our old age. Once we begin to lose our mind we have actually lost who we are, and all of our power to keep ourselves safe.
Speak with the facility DON or coordinator, social worker, whoever is the correct person to reach out to. Let them know you are hours away and feeling helpless and heartbroken for what she is feeling. They may be able to help; they may NOT be able to help. There are tricks that people who work with elders have that "sometimes" work. For us, on the nursing floor, sometimes it helped seniors to have little tasks. We would take in a pile of wash clothes and ask for help in folding. You would be amazing how many women could sit happily by the hour folding and smoothing and stack and getting our appreciation.
But do know that there is sometimes no "routine of happiness'. Not everything can be fixed. When she tells you she doesn't know what she can do/should do, simply reassure her that you love her, wish you could be there more to visit, but that she should know everything is under control, and there is nothing she has to do or worry about.
This descent into worrying when one isn't certain what they are worrying about is so hard to see. I am so sorry you are going through it, and that she is.

Send her funny cards. My Dad went through the same thing and it broke my heart. He did that in his own home and I was there frequently. His memory went back to his former home that was near his lifelong work, and he had remodeled his parents home after they died. He had moved there to retire, but the diagnosis came shortly after. Now he thinks he's in his parents house and they will ask him to leave. He had previously saved every card he ever got, and we would send him cards and sign our names, even congratulating him on his home. There's no real answer, and my heart breaks for you. Try that, and see if it works at least temporarily.

I know how that feels. It is difficult when you can't be close, and maybe that would not even answer her concerns. I ask my mother in law, with advanced dementia, "What did you do this morning?" Then "what do you have planned to do right now?" If she says "I don't know", I say "Have you watched your favorite tv show?" or "What is planned for lunch today?" We can't always resolve the anxiety or confusion, but we can listen, and we can try to divert attention to it. Talk to her caregivers about things she is able to do like stringing beads, writing her thoughts down, going for a walk, watching nature or listening to music. If none of these help, talk to her doctor about the higher level of anxiety and what can be done. I hope these suggestions help.

For my mom, going back to the Sr Center after the COVID shutdown was lifted, it was daunting and scary. And she KNEW all these people! I kind of leaned on her and told her she just needed to go once and she'd feel right back at home. It did take several weeks, and I enlisted my sibs to call her and encourage her to go.

Then, I actually took her to BINGO one week and she was back in the loop.

Your mom needs someone to actually physically take her to the facilities activities. I agree that calling someone there and asking them to maybe assign a 'friend' to her for help may not go amiss. There are likely some 'chatty Cathys' in the NH who love to make new friends. Normally, that's my mom.

Once the ice is broken, then trying other activities will hopefully be a natural next step.

This is part of the desease. They literally don't know what to do. No, they can't make her join in but they can coax her. I agree call the RN or administrator. Ask if someone is trying to get Mom involved. Because Mom was a fall risk and I asked that she not be left in her room, her days were spent in the common room where they ate and activities were going on throughout the afternoon. People milling about.

Contact the activities director or other appropriate staff member and ask that mom be helped to participate more and be out of her room

I would get her checked for a UTI since this is new, sudden behavior.

Suggest that she go to the "Community" room or whatever term they use for the main gathering place.
You might want to call the facility and ask that someone come each day and ask her if she wants to join them for a game or snack. And she may need a bit more than someone sticking their head in the door and asking, your mom might need a bit more encouragement. So even if she does not want to join in they can suggest that she just take a walk down the hall for some juice. Maybe if they give her a "task" to do, fold napkins, cut coupons that would give her something to to do outside her room.
And just a thought...is she less secure due to the dementia or is she afraid of falling? Next time you visit pay attention to her gait and see if you notice a difference.