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SparkyY Asked March 2019

I spent the night at mom's nursing home last night and am very concerned about this new turn of events.

She has been developing a new "thing". I've spent the night at the nursing home she's at several times we were lucky enough to get a single room.


My concern is she has started calling out help! In the night and when I rush to her she looks at me like I'm the one who's losing it. She was in a temporary rehab a year ago and started doing this on a lesser scale there. She stopped when she went home but this time it's way worse. She will do this constantly. I asked the CNAs and nurses if she does this all the time and they said yes and that it was common among dementia patients to call out continuously.


I'm afraid that it's going to end up like the boy who called wolf and they will just ignore her. She is just getting over a diaper rash that still bothers her at times but her helps! Don't seem to correspond with her discomforts. She calls out after she gets her pain pill and after she's bathed and cleaned up, she knows she's doing it when she's awake and will usually say I'm sorry right after when I'm there. She says she can't help it. She also calls out for a David and says he's the only one who can help her. I've checked with staff and there isn't any David that works there. I also can't remember any David from her past. She's unable to tell me who he is so it's another mystery. Does anyone know if there is a way I can get her to start yelling out something besides help? I hadn't realized how often it was until I stayed the night. I know she's heard it from other patients there because I've heard it too.


I read something on here about something similar and have to deal with the guilt now about snapping at her every time she starts yelling help. The weird thing is that if I ignore her she just gets louder until I acknowledge her then she says she's ok and doesn't remember saying it (at night at least). Last night after the tenth time in twenty minutes I didn't yell at her but I talked in all caps that would she please quit yelling for help if she doesn't need it and that I would like to get some sleep. Anyway any advice?

Rainmom Mar 2019
Sparky - Thanks for answering most of my many questions. Those not answered, I’m gonna make some assumptions on.

For instance - I’m gonna assume your not employed. Have you a plan as to how your gonna get by after your mother passes away. It’s probably very painful for you to think about but a necessary evil, I think. Both in terms of finances but a bigger concern would be - what will you do with your time - what will be your focus and your day to day routine. I’m assuming this is something you’ll have the help of your counselor figuring out.

I had this boss once - she was pretty useless as far as bosses go. But she once said something to me that really struck - it was actually pretty profound (she must have heard it from someone else, lol!)

Anyhoo - she said “Someone’s biggest asset is often their greatest weakness”. I think that can be applied and tweaked to your situation.

The two-sided coin. The ying and yang. The glass half full or half empty. You get my point. What you’re doing is loving - shows sacrifice and devotion. But its just no life for you to be living. Not if this continues on much longer - that’s for sure. Some parents do everything they can to keep their “child” tied to them - when they should be pushing them from the nest and encouraging them to spread their wings and fly.

Clearly, your mother is no longer actively able to manipulate you into going no further than her apron string allows - but whatever she did to you in your formative years, conditioning this “devotion”, it seems to have taken hold.

You only get one shot in this life upon this earth - time marches on and you don’t ever get a single minute of it back. Please - reconsider all these nights you are spending in a recliner, waiting for and on your mother. It’s just not healthy. Its no way to live. I’m sure your counselor has told you this.

Im sorry. I know this isn’t any answer to your initial question - but your post just made me so profoundly sad for you. And - I never saw The Norebook.
SparkyY Mar 2019
I appreciate your honesty and your right. I was talking to Mom's best friend about how I had no idea what I was going to do when mom passed and she looked at me and said "get a job" lol. Mom tried to instill independence in me early in my life. She must have kicked me out at least ten times in my twenties. I was and am a total Mama's boy.
My main problem I think is I didn't prepare for the inevitable. I could never picture life without mom so I didn't mentally prepare (if that's even possible).
I'll either be ok or I won't. I still can't see past this. I'm trying to get there.
I never thought being loved too much was even a thing.
NeedHelpWithMom Mar 2019
Do they discourage you spending the night? The reason I ask is because that the first thing that the head nurse at an assisted living facility I am considering for my mom said was that I or any other family member was welcome to spend the night. I felt comforted by that remark.
SparkyY Mar 2019
They actually encourage it where mom is too. She's only been there about a month and at first it was supposed to be temporary. Her condition has gotten so much worse so quick I was worried something was going on.

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Rainmom Mar 2019
Just out of curiosity, Sparky - what do you sleep on? You say your mother has a single room, is it large enough to safely accommodate two sleeping adults? You say you stay as often as you can - about how many nights a week is that? How is staying the night effecting the rest of your day to day living and routines? Are you employed now?Lastly, what does the staff say about you staying the night?

So many questions, I know. But I find this to definatly be an unusual situation and am very curious. I, as well - am wondering why you have your mom in a facility- or are you planning to bring her home again once her rash has healed? I guess one more question - how much of your daytime hours are you spending there with your mom?
SparkyY Mar 2019
They have a recliner I sleep on. It's a huge room and I think they don't mind so much because they know if something changes I'll let them know. They still check on her and change her when she needs it. They also roll her on her side etc. I only take over helping her eat.
Besides making sure she's being treated ok I was also hoping that I wouldn't miss it if she "came back" for however long. I think I watched the notebook too many times.
I was planning on bringing her home at first but there's no way I can do it if her condition worsens. For one it's been hard arguing with her when she doesn't want to do something. After 50 years of her being the dominate one I'm programmed to do what she wants. I've been in counseling trying to adjust to the new normal. She'll do what strangers ask more often than when I ask. I think now I'm to have to find a long term place.
MsMadge Mar 2019
My mom will cry out for help repeatedly sometimes too and when asked what she needs help with will say she doesn't know but did once say she was helpless- she's immobile at this point and during her more alert moments expresses her frustration or desperation as she says with the situation

she also calls out my name upon waking or her sister or niece, both deceased

I am a strong advocate for her and worry constantly about her care since she has been in a facility - staff joke and say how spoiled she is but since I can't do the only thing she wants which is to come home, then I do as much as I can
SparkyY Mar 2019
That's pretty much how I feel. I just wish they would have mentioned that it wasn't uncommon for dementia patients to cry out not realizing why they are doing it. Also she started doing that the first time she went to a nursing home but stopped when she came home.
SnoopyLove Mar 2019
Sparky, your "Snapped" comment made me laugh! Good for you for keeping your sense of humor in all of this. Your mom is lucky to have such a caring son. Hope you both can start getting more sleep soon.

Ahmijoy Mar 2019
Sparky, none of us can tell you to step back from being a “helicopter child”. However, Countrymouse is right. You are so invested in your mother’s symptoms, behaviors and care, I’m sure I’m not the only one who’s wondering why you’re paying for a facility. Not to sound harsh, but you are probably in the way of the staff doing their job. I understand that you love your mother and want to protect her, but like I said, if you find yourself stressed and yelling at her to be quiet when she starts yelling, you need to step back and let the trained staff handle it.
SparkyY Mar 2019
I only have her at a nursing home because 1. She was so weak after being in the hospital I thought she could get stronger before she came home. I'm no longer under the illusion that I can give her the help she needs if she doesn't get stronger. 2. I'm not paying for it. This is another guilt thing I have to deal with because I can't afford to pay for private care. And what's a helicopter child?
SparkyY Mar 2019
Thank you for your answers. I replied to Ahmijoy with an explanation of sorts as to why I spend the night.
What gets me is when she gets sick her symptoms escalate so fast it's like I'm two steps behind in learning what turn out to be text book symptoms. Because of the hell she went through at the last nursing home I was alarmed enough to think it might be happening again. I spoke with her care givers today and they said that she's been calling out help! Almost since the first night she was there. It would have been nice to let me know but they thought I knew.
Countrymouse Mar 2019
I don't blame you in the least for being pretty jumpy after an experience like that. I hope she settles in really nicely here and you get to relax.
Ahmijoy Mar 2019
I’m a little concerned that you feel the need to spend the night with your mom at the facility. Are there other issues with her care? Many people who suffer with dementia have “odd” behaviors and calling out in the night is another one. Staff is aware of it and will handle it. If it’s too concerning, the facility's Doctor will be called. This is what happened with my mom. She was a nighttime wanderer and would disturb other residents.

Since these events stress you out to the point you find yourself angry and yelling at your mom, perhaps it’s time to step back a bit.
SparkyY Mar 2019
It's taken me a while to accept that she really had dementia.
I'm always leary when I try to explain our relationship because I end up sounding like someone on snapped or something. " The mother and son had a unusually close relationship". We do although it's unusual without being weird lol. Two years ago when I lost my job I moved back in with her for what I thought was going to be temporary. I'd noticed some changes but chalked it up to her getting older. She seemed ok until a year later when she had to go to the hospital with what we thought was the flu. It was pneumonia followed by H-PYLORI, followed by bleeding ulcers in her lower intestine which caused anemia. She went to a temporary rehab after two weeks in the hospital to get her strength back. She got a horrible diaper rash while there. After 60 days her blood count dropped again and she went back to the hospital. The nurses there thought she had come directly from my care and without asking had called adult Protective Services because her diaper rash was so severe. I told them she came from a nursing home and they started being nicer to me. (two CNA's were fired from the nursing home after that for negligence and almost faced charges for elder abuse.) I took her home shortly after and she seemed to be getting better untill almost 8 months later she had a UTI that the hospital said went septic. After two weeks in the hospital she had to do the rehab thing again. She's at a different one but I still feel like I let her down by believing the nurses at the last nursing home who kept telling me that her complaints about her butt hurting we're from not doing her physical therapy. Mom was too embarrassed to go into detail and she didn't realize how bad it was. So ya I spend the night every chance I get to make sure it doesn't happen again.
Countrymouse Mar 2019
You may not like this - PLEASE don't think I am being flippant or mean - but my best advice would be that you do not stay overnight.

What your mother is doing is such a classic feature of dementia. Assuming - and they seem to be - that the staff caring for your mother are trained, experienced professionals, her calls and especially the exact form of words will make no difference whatsoever to their attention to her real needs.

Soothing words will arrest her calls, very briefly. That is a kind response if you happen to be around at the time; but the effect is a bit like swallowing linctus when you have a bad cough - you feel better for the fleeting moment while the linctus is in your throat. It doesn't do anything at all to the cough, no matter what the advertisements may say.

The staff on duty during the night are wide awake and working their shift. You are supposed to be trying to sleep. Truly, it must be better to let them do the care.
SparkyY Mar 2019
I don't have a lot of faith in nursing home staff. I've had to intervene more times than I can remember. First they had her medications messed up. When I tried to tell them that mom was not on three different antidepressants at once they would argue that that's what the Dr had ordered. I made them stop giving her any until they double checked with the Dr. It only took a minute for them to realize that she was only taking one. Her Dr had been trying to find the right one and had changed them over the years. One "professional" no longer has a job because of her treatment of mom when she first went to a nursing home. I'm sorry but I find that putting blind faith in her nursing home attendants is dangerous. Most of her care is given by CNA's who hate their jobs. There are some good ones but I have yet to meet one who really loves their job.
cwillie Mar 2019
The nonsensical calling was what drove me absolutely batty, I felt like I could take the physical care but the crazy was just too much. The doc gave my mom mirtazapine as a sleep aid and it worked for us, no more night time calling.

BarbBrooklyn Mar 2019
https://www.verywellhealth.com/why-do-some-people-with-dementia-cry-and-call-out-97628

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