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What can I do to stop this behavior? I feel like I'm reinforcing it by always answering and trying to do what she wants, especially for me to be in the same room with her. I leave the room and this calling me starts. It's hard to deal with as obviously I have other things to take care of also. Suggestions?

Anyone who has been a caregiver to a parent with dementia knows that the roles reverse and you become the parent to them.
When a baby is crying, you can't go in there every time. You want to, but you can't. Sometimes you have to let them squawk for a little while so they'll go to sleep. Or because they just need to for a bit.
The same for a person with dementia. Don't go running in there every time they call. No. In the daytime after you've cleaned and fed her, and made sure her diaper is dry, put the tv on and leave the room - for a hour. No matter how many times she calls for you do not go back in there for an hour. You can set up a monitor so you can keep an eye on her, but don't go in there. Do this for a week or so. Then start doing it twice a day for an hour each time.
At night after you've gotten her ready for bed and have made sure she's had her meds and a drink and everything, then it's time for bed. Leave the tv on low if you think that will help. You can check on her a couple of times and let that be it.
You need rest too. When it's time for you to go to bed, close your bedroom door. Put some soft music on or the tv. You can still keep an eye on her with a visual monitor. One without sound. If it has sound, turn it off. There must be a time when your caregiving 'shift' ends otherwise you will burn out quick and your own health will suffer. There is no way that you can have a person sitting in the room with her around the clock 24 hours a day. She would not get that in a nursing home or hospital. It's just not possible.
She has to get used periods of time when she is alone in the room and not having you by her every time she calls. You'll see. It will be all right. She will get used to it.
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When my husband first came home from the hospital and was completely bedridden in our living room, he would constantly be calling out my name. I would always tell him if I left the room, where I was going and what I was going to be doing,(and we live in a small house) and yet he would call for me. It too drove me crazy, and when I brought it up at one of my local caregivers support group meetings, one of the more experienced caregivers suggested that he was probably just scared and nervous because he was stuck in one place and couldn't do much for himself, and he just needed reassurance that I was still there, which gave him peace of mind. That gave me a different perspective, and I tried not to let it bother me after that. After a while, he didn't call for me nearly as much, as I believe he got comfortable in knowing I wasn't going anywhere, and that I was going to be there till the end, which I was.
Sometimes changing our perspective on things can really help us better understand the one we're caring for. Wishing you the best.
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WendyElaine Feb 7, 2021
Agree completely. I used to belong to a support group where one of the members would regularly offer, “A miracle is just a change in perception.”
It took me years to understand what he meant—but he was right.

Wishing all of us peace, comfort, and a broader perception.
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That can be very draining for you.
Can you move her to a recliner during the day in a central room like the TV room?
It may give her a sense of being more part of the family instead of being isolated to her bedroom. Find an old movie or the elderly seem to like game shows.
You can get her wifi headphones for volume control for the TV.
I find music is a wonderful distraction if you play songs from her era.
Maybe give her a box of old photos to go through?
Lastly, if finances allow, hire a local person to stay with her for a couple of hours. This will give you some freedom and peace of mind and give her the companionship she is seeking. Best of luck to you.
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My mom was bedridden the last 2-1/2 months of her life only because she literally forgot and could not focus on getting up as it was a daily struggle to keep her moving. I used a hoyer lift and put her in her favorite chair every single day, and she did better with that change of scenery. As bad off as my mom was with extremely severe Alzheimer's disease, when I put her to bed, she had this look of fear in her eyes so I bought a nursing manikin and dressed it up to look like mum in her clothes, and I found a wig at a consignment ship and soaked that red wig in bleach water and it literally turned gray and put it in the dryer and placed that wig on the manikin that it looks like mom's hair. I went on Ebay and bought artificial eyebrows. It looks just like mom. I used that as "virtual company" so I could get some sleep with subdued light and that worked for her. She would stare at it and fall asleep. It sure surprised hospice (she been on hospice for 2 years but I used them like a home-clinic).

The nursing manikin is about $1,500 though, so I found one--of all places--Walmart online and it was like $250 and I thought it would be some cheap thing (for nursing students to practice skills) but it weighed about 40 pounds and actually was well made. Worth every cent.

When mom died I became a basket case, but I put the manikin on her favorite easy chair with her clothes on and it REMINDS me how she was before she died. the manikin REMINDS me she is better off where she is because she was unresponsive to the environment and if I did not do range-of-motion exercises her arms would have contractured. Ironic the manikin was comforting for my mom but now it is comforting for me and she been dead over a year. Despite her insulin-dependent diabetes, kidney and liver diseases she lived to be 90 years and never had to get a single drop of narcotics or psychotropics and without a single mark on her skin. To the end mom felt loved and she died the most peaceful death anybody could ever hope for with absolutely no suffering.

I could tell when mom was dying when her feeding tube started drawing back residual I knew her body was shutting down and I had to call my brothers to come and pay last respects and they did and it was all very very meaningful and I thank God I decided to put that feeding tube in which she NEVER bothered, so she did not have to die of dehydration. I bought a tube top from Amazon which was comfortable for mom to conceal the tubing and prevented it from getting pulled while turning her. Feeding tubes are A LOT OF WORK and you really need to know what you are doing, but it is something you need to think about and discuss with your family.

I got on with my own life, employed and pursuing my Master's degree, and I come to terms with mum's death, but Oh God I miss her but we all die, and her ordeal of life is over with and she is forever safe and free and at eternal peace. That manikin remains a source of comfort for me--just as visual reminder how mom was before she died. It really helped me.
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RedVanAnnie Feb 7, 2021
I love your manikin story.
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Quite often it is fear driving this behaviour. Being able to see other people seems to help them feel safer.

That's why hospital geriatric ward corridoors are filled with folk sitting opposite the nurses station. They like to see the nurses & other people going past. Some may even need their bed in the corridor overnight too.

My Mother became anxious if left in her room in rehab. Had to be in the day lounge everyday where others were.

See if radio or TV voices helps. Maybe soothing jazz or classical music. Maybe a soft toy to cuddle. If nothing works, consider talking to the doctor - maybe anti-anxiety meds may be trialled.
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jacobsonbob Feb 7, 2021
When my mother was in the nursing facility, she insisted that the door to her room be kept open, so she could see activity in the hallway. As she was easy to get along with and the staff liked her, they would wave or smile as they went by. She outlived a couple roommates, and when a new one came in, the staff made sure the new roommate would accept this, and new staff members were told, too. (Often I was the one who mentioned it to them.)
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For the last two+ years of my husband’s life, he was bed ridden and suffered from several conditions including dementia. I set him up in the main room of our house. I got rid of some furniture and placed his hospital bed where he could look outside and see everything going on in the house. I was with him most of the time. At first I tried sleeping in a recliner, but it was not ideal. I eventually realized I needed a good nights sleep to be up to caring for him. He would call out to me incessantly. What helped was for me to have a little good night ritual where I told him I loved him, and I would be right around the corner getting my sleep. That seemed important to him. We had a stuffed bear which he would sometimes hold. He wanted some light. I turned on one of the music channels trying different kinds of music. He liked country, easy listening from 50s, Ray Conniff, etc. when I finally went to bed, he would call me. This next point was very important. I would say in a confident voice that “we are safe, the house is locked up tight, all is ok, we don’t have anything to worry about, the kitties are asleep with me, and I love you very much. I’m right upstairs.” Then I wouldn’t Respond any more.
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WendyElaine Feb 7, 2021
Beautiful handling of a tough situation.
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She needs to be somewhere where more than one person can take on dealing with this. OR if you can make the room safe so you can be sure she isn't calling for a real need. The use of "granny cams" can be useful in these situations - if you can look in on her to ensure she is actually OK then you don't need to keep running in to see what she wants. If she is getting very agitated if you do not respond then either you keep running in and out and as you say reinforcing the situation or you sort out a facility that can fulfil her needs, or pay for someone to come and sit with her for a certain number of hours a day to give you time for other things and a break. Its hard to know what is best, does she know how you are? if not then who looks after her doesn't matter. It sounds harsh but how much is the person living in your house still your mum and how much has this terrible disease changed that? Have you and her Dr. considered some mild sedation / antidepressants to deal with any fear element to her behaviour? Does she like animals - one of the imitation responsive pets may provide her with some comfort. As carers we can go on too long and actually do it to satisfy a need we have not one our loved ones have, through love or duty - both the LO and the carer need to be considered and given what they need in so far as possible.
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Just so people realize it, mentioning that a younger person with early onset Alzheimer's can be the exact same with the constant calling out. In our situation, for the 41 years my son has lived, we have had to deal with always responding to him calling out, especially during the night. He's got a serious seizure disorder and they can come at any time. So now that he's 41 and also has Alzheimer's in moderate stage, it is calling out from anxiety as well as his typical calling out!

When I say "calling out", I mean that now my son calls out within 2 minutes of anyone leaving the room. No matter what we tell him, he gets anxious. You can imagine how hard this is for all caregivers. We'd not survive without our trusty room monitor. (Don't call it a "baby monitor"!). We use it to talk back to him and this does help. Constant calling out is as stressful as the other habit most people experience, asking the same question over and over. No solutions here, but we do find ways to deal with this problem and there is less stress over time.
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If they had a favorite old movie or two, you could try playing it and see if it is comforting. Years ago they were developing videos of someone talking to the patient very simply. Hello, good morning, etc. with name of person. Simple chatting like with a small child. Maybe some Mr. Rogers type shows. I don't know if it is helpful, but it is worth trying. Any old home movies? I agree chatting via a monitor might be helpful. Just saying out loud what you are doing, how the laundry looks, what you are folding, what the weather is like. Just prattling so she knows you are near. Some churches have visitors who will send time with people. I would also place a bed, recliner, whatever is comfortable in a common area if that is possible. You need to take a break if at all possible. Do you have a friend, a relative, a neighbor, a church acquaintance who could sit with her occasionally? Better a couple hours a week. No nursing, just company. Ask a local pastor. Ask the senior citizen's center, often seniors are looking for something to do. My MIL loved passing a balloon back and forth with a toddler. In fact, in the nursing home, the ladies "Loved" little kids visiting. If you have friends with kids or grandkids, could they come by. I think when they are alone, hallucinations and anxieties close in. Distraction might help. Even reading a book aloud that you enjoy, or someone does, might help. If anyone you respect asks how you are doing, or asks to help, accept. These visits would be good tasks for those who are overwhelmed by "nursing". We have Next-door in our neighborhood, it is an online forum for local areas. I am amazed at how helpful the suggestions are and the offers of help! Ask the Girl Scouts, ask your nursing school. It isn't for you, it is for her, so don't be hesitant.
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JoyfulOne Feb 7, 2021
You’ve gotten some good info. I would add maybe a realistic baby doll to take care of, hold, “ feed” comfort can help distract.
if advanced dementia, folding washcloths, tearing paper, magazines with lots of color ( garden, good housekeeping, gossip mags for people) have helped distract my patients.
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When someone has dementia, they may have irrational fears. She may have anxiety about being alone. The previous response has some good suggestions. At my mother's AL facility they put her in a wheel chair and bring her to the common area where she'll see aides and other activity. I give her little stuffed animals, and she likes to have a blanket over her legs (security blanket). The needs are similar to that of a young child. Also, if you play music in her room it may be calming, for those times when you can't be there with her. Or even if you have her sit in a chair where she can look out the window.
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