My mother wound up in memory care several months ago after a bad fall. She is 92 and pretty far along in her dementia She refuses to leave her room or participate in any activity. Keeps blinds in her room closed tight so “ neighbors can’t see her”- there are no neighbors. She exhibited some of this when she was still in her own home but I attributed it to her getting so disoriented whenever she was outside her usual environment. Neither the staff or I have been successful in getting her out or involved even if I offer to stay with her during activities. Any suggestions?
Thru the journey I became a caregiver and lost the daughter.. fighting battles that didn’t have to be fought.. just like this…
You are not responsible for her happiness. You are doing enough just being there for her. You keep wanting things to be a way that they will never be. Dementia sucks and everything about it is hard. Please work on having peace in your heart and knowing you are doing the best that you are able in this sitution.
If she is safe staying in her room
If staff is checking in on her on a regular basis and at least getting her to change positions at least every 2 hours and they care making sure she is not wet or soiled.
I would not push this, let her stay in her room.
Make it cheerful. Even with the blinds drawn make sure there is light and she can get around easily. (if she is able to)
A few suggestions
If mom is Hospice eligible you can ask for an evaluation, get her on Hospice With Hospice you can request a Volunteer that would come and spend time with her one day each week. they can be there for as long as she likes, up to 3 hours.
You can ask about hiring a caregiver/companion to come in and spend time with her. If she has been a member of a church, synagogue or other religious affiliation you can ask if they have members that will visit residents in MC.
It's a difficult mental shift for caregivers. We apply our views of what's healthy to a person who looks whole but, because of internal changes to their brain, is no longer able to process the world around them the way they used to.
It's kind of like a low battery. If your car battery is low you're not going to be running the windshield wipers, the radio, and the headlights all at once. Same thing for the person with dementia-they have a very limited and narrow bandwith they can devote brain energy to.
A hospitalization can push a person a little further down the road with their level of dementia, and they may or may not come back to their previous level after several months have passed.
A new environment is confusing because everything looks new to them, all the time. It can take months to adjust. It might feel safer for them to not interact. If they were never a 'joiner' in the first place, that may not change now.
They're limited in how they can engage-- they may no longer understand how to complete a task. Their executive ability has gone, and they can't initiate actions.
There are physical changes in the way they process visual images and light so that they prefer the room darker, or it may make them feel less unsure to not look out and see a view they don't recognize.
It is very hard to let go of feeling that 'participation/keep busy = quality of life''. I know. I struggle and get frustrated with it all the time.
But there's a difference between mom wanting to participate and can't get started, in which case she would do the activities with assistance, vs. not able or wanting to participate because she's lost the ability.
Give your mom and yourself some grace, and just spend some time however she's comfortable. You can always see if there's some solo activity that relies on rote memory that she might do-lots of people give their family things to fold or sort. Fidget pillows can be good, or one of those lifelike stuffed dogs or cats they can brush. My mom plays solitaire incessantly on an i-pad (she has for years-not a new skill). I wish you the best-it's hard to feel like 'less is more', but as dementia progresses it may be so.
He has been in a rehab around tons of people and activities. He is not required to stay in his room. On the contrary - he is very much encouraged to leave his room as often as possible, especially to take his meals in the cafeteria. To date, he has not left his room, except for physical and occupational therapy, but one time for a Christmas party for the entire facility - and that was because they had cupcakes. He went and got a cupcake and went back to his room.
For someone who constantly complains about being held hostage at home - he makes NO effort - at home or in rehab - to leave his room. At home - he could 100% leave his bedroom (bonus room over the garage so very large with bed, couch, computer desk, tv etc - it is his command center). He could take his scooter in warm weather and ride around the neighborhood and talk to the neighbors. He could go and get his mail. He could come downstairs for his meals instead of having them dropped off in his room. He chooses not to. He has done the exact same thing in rehab. He has CHOSEN to stay in his room. (it is the actual leaving the house in a car that becomes dangerous and requires two people to transport him)
We think it is because - while he likes the idea of going out in theory - the actual idea of being around people - is very overwhelming. He complains about people not visiting - but the last time one of his friends visited - he wouldn't let them come into this room to see him. We think talking about going out and talking about us "holding him hostage" is a cover for the fact that being around too many people makes him nervous and he can't handle it. Additionally - he has also said "I hate BINGO (lol we have told him there are so many other things to do) and why would I want to go spend time with the OLD people?" (never mind he is older than a lot of the people that are there.)
With my grandmother - who is in the early stages of dementia- she has been a "hermit" for a long time. It started slowly after my grandfather died 15 years ago. And then in recent years became more pronounced. Her's is two fold. She gets overwhelmed by the noise - due to her hearing loss and not having acclimated entirely to her hearing aids. She has trouble following conversations. But also too many people is again very overwhelming. It's just too much to process and handle. So even in a room of people if you are not addressing her directly - and everyone else around you stops talking and listens to HER, she is not going to engage. Then there is the fact that she does not want to GO to people. She wants people to COME TO her. She prefers to sit in her chair and have everyone come to visit with her in her element. I don't know if it is about comfort - or control. Or both.
But in both cases - it is clear that regardless of their reasons - the core is that being around people in general is harder than they expected when it happens. They think when they start out that is may be what they want and then find that it is uncomfortable and difficult. And that they don't get any enjoyment out of it. So they pull back into themselves and prefer to not participate.
I can only imagine what it is like to feel trapped in your own mind. Not remember who certain (or all) people in your life are. Try to place names and faces and stories they recount and know that you are supposed to know what they are talking about but not. Being frustrated and alarmed and scared. Retreating in to your room is a safety response. It is where you feel you are protected. Where YOU are in control and you have the higher ground. Perhaps she
Perhaps she feels safer in her room, where she has control of the environment and she knows what to expect? Maybe she has shown you what she wants and happy with? And she doesn't want to do more than that? I know participating in activities seems important to us. We don't want them to be depressed or lonely. But we also don't want the opposite to be true. We don't want them overwhelmed or overstimulated either.