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?
I would buy her a baby doll, you can get one that looks real and then she will not be alone, ever.
I do believe that her doctor can order a hoyer lift and then Medicare will pay for it. She should not be left in bed all the time. She should have a regular routine of getting up and dressed and moved into the common areas. I can't imagine how frightening and mind numbing it would be to be stuck, by yourself in the same room day after week after month after year. It sounds like a punishment. Put her in a wheelchair and move her around, give her mind something to focus on besides you. Between that and her new baby I bet you hear your name a lot less.
Her hospital bed is in the family room...so she can see others frequently to talk and listen to her even when she doesn't make sense
She is past participating in assisted living activities now. I have agonized in the past whether I should have taken her out of assisted living when I did..... She had been rn a snf before that and could be wheeled around a bit and interact...... But no help with feeding which she needs help with..... At least at home I can help and feed her the little she eats....her gi tract is not working well and the nurse said he isn't absorbing much. She recommended ice cream which I feed her in small portions. The w hole thing can be heart breaking for the caregiver to watch and often question myself through this long journey.
Finally I decided to give her the other half of the lorazrpam dose hoping it would calm her down. I tried sitting in the same room and asking about her childhood. S he still went on calling me and saying that she wants to go home..... I tell her she is home. Do you know of any activities that you do with your father to try to keep him occupied? I hate this having to give her enough meds to sleep.... So much that I this was "IT"....... Today she is up and constantly calling me "help" as in what should she do., and take me home......... It really can get frustrating to deal with this?..... Any suggestions welcome!
* Stop going to her every time she calls for you. You are encouraging this pattern so she is doing what she wants, i.e., you to come to her.
* Take control and 'do' what is needed, what she needs, and not what she says she wants or needs. She has you wrapped around her dementia finger.
* Get her a music box and turn it on when you go in. I am not sure if this would encourage her to call you 'more often' to turn on the music,' or relax her so she forgets to call you on the regular basis that she is.
* She is confused and frightened, and likely angry. While she won't remember, tell her you're close by and will check in on her in a few minutes. (She won't remember the 'few minutes' and check as you need to.)
* I'm not being glib. You need to look at the broader picture of the behavior (and patterns) that are occurring.
* If you cannot tolerate the constant calling, you need to take some measures to deal with it, i.e.,
- more / medications to quiet her down.
- consider logistics of where she is and if this can be changed (as one person mentioned, bed facing outside / activity / nature.
- realize that your behavior will affect her behavior, even with dementia (from my experience although this depends on what kind of dementia a person has and which parts of the brain are affected).
* She will want her own way and plan ahead of how you will handle these pleas. You have to separate the emotional and psychological aspects of how you feel with the here-in-the-moment 'what do I need to do - for her - and for me. This is easy to say although it is critically important.
* Take care of yourself so you can take care of your mom. I am sure you'll get many more useful suggestions here. Try out and see what works or what you can realistically do. Journal if it might help you.
Keep us posted. Gena
I would try the baby monitor first, as they are less expensive. If it doesn't pan out, you wouldn't spend all that money on a camera system. If it did work, use the camera system to allow her to see and communicate with you, and then use the baby monitor so you can watch over her.
The only other solution other than hiring someone for X hours/day, so you can get things done that need doing, would be to get her into an appropriate wheelchair and keep her nearby wherever you are. This would likely require a lift of some kind and perhaps an aide to assist. If she qualifies for hospice, they would provide various items like the lift, hospital bed, maybe a special wheelchair, some supplies and some in-home assistance (minimal, but maybe enough to get her into the chair or back into bed. Even if it's only a couple of days/week, schedule as many tasks that need doing on those days, so you can free up your time on the other days and reduce the times you can't be in the room or respond quickly.)
The hospital bed *might* work as an alternative to having to move her from bed to chair to bed, IF it can be easily maneuvered from the bedroom to other rooms.
Like some others, I seriously doubt ignoring her will result in reduction - she clearly has a need to see you and/or not be alone. Once an idea like that gets into the head of someone with dementia, it is sometimes difficult to dislodge it and get them "thinking" elsewhere. Earlier stages it's often recommended to distract, and redirect their focus elsewhere, but that won't happen if you aren't in the room with her! Myself, I probably wouldn't respond instantly every time, finish up what can be done in a few minutes, but having to do that all day every day, not much else would get done!
This is one case where I don't think MC is going to be the right choice. MY opinion only, to each their own, but if she's bed-ridden, how often would staff move her to be with others? They are NOT going to sit in the room with her 24/7. For respite, if OP needs it, Medicare does cover about a week/year, but how hard is it going to be to move this woman to/from a facility for this purpose and how will it affect her? Changes for those with dementia = not good!
There are tasks that perhaps could be partially done in the room with her:
1) folding laundry
2) some food prep
Still doesn't cover a lot of the day though.
Someone suggested the "interactive" pets. My OB bought one of the cats for mom - kinda silly as she was NEVER a pet person AND was still living in her own condo then, only very early dementia. She was, however, fascinated by it and what it could do. Now that she is done, it is here with me. It meows. It purrs, It moves head, ears, sometimes raises a paw to "lick" it, will roll the upper body over for belly rubs, opens/closes mouth and eyes. There are several "trigger" points to get it to continue purring and/or roll over, but there are times it meows and sighs even when I'm nowhere near it. There are videos online of elders interacting with these "pets" and certainly seem to enjoy it! Even after mom moved to MC, if I was there and initiated interaction with the kitty, she was STILL amazed by what it could do. I don't think she ever thought of it as real, but many do. In the early days, there was another woman who had a stuffed dog that she doted on, "fed" scraps of food to and even said she could hold it over the toilet and it would "tinkle!"
The first can be addressed by moving your loved one to a more central location during the day and/or medications. Consider that their memory is so short term, that being out of their sight feels like abandonment. Being someplace where they can see and hear you is reassuring. If they insist you must be right at their side, then it may be time to try medication to help calm the anxiety.
The second, I call "boredom." They do not have anything occupying their attention and they call out for you. It is kind of sweet that you are the first idea that pops in their head, but doesn't seem that way with constant demands for attention. For these folks, consider activities that can grab their attention: older TV shows, music they like, frequent visitors (for meals, to read books together, to play simple games together....) and the like, When COVID restrictions lift, these folks do well in adult day programs,
Try to find some kind of monitor to put by her bed with audio/video. She could call out and you could answer from anywhere in the house without stopping and running back to her room.
Is it possible to put an additional bed in the main/high traffic area of the house? Get her out of isolation a little? Maybe a home health person in the AM to transfer her from bedroom to living room for a change of scenery.
One possible side effect is to increase appetite, which could be helpful to those who have trouble getting someone to eat...
I know the thought can put most folks in an " I'm not comfortable" space. But you need to care for you first and foremost!
I have tried all the suggestions here to date and so far, none work. I hope you have better results then I do.
if advanced dementia, folding washcloths, tearing paper, magazines with lots of color ( garden, good housekeeping, gossip mags for people) have helped distract my patients.
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.
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.
My 96 yr old father does the exact same thing.
But actually he just feels safe when someone is in the room with him and since he can't remember much, he can remember a familiar face and he's scared when left alone.
My Dad enjoys being in his recliner most all the time, out in the open.
You may try to put him in an area where he isn't by himself.
You might try playing music he use to like.
Is the TV turned on to a favorite movie?
Does he have a pet that can keep him company?
Maybe he is bored, Would he be able to sit at the kitchen table to do a Large Size Pc Kids Puzzle.
Paint a lg print Paint By Number.
Color a picture.
Play with magnetic blocks.
Hand Held Black Jack Game.
Maybe you could take a Baby Monitor with you do you can talk back to him instead of running in there?
Praters
Juse remember, he doesn't remember and he's not trying to bother you.
Maybe you could get a couple family members to come by every day to give you an hour break.
Maybe you could hire a Caregiver to give you a break a few hrs a day
She will cry for her for a while and then she'll stop. If she's bedridden and has advanced dementia, then she probably sleeps a lot. Let her call for a while and she'll fall asleep.
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.
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.
Sometimes changing our perspective on things can really help us better understand the one we're caring for. Wishing you the best.
It took me years to understand what he meant—but he was right.
Wishing all of us peace, comfort, and a broader perception.