Mom complains no one in her MC will help her but she will not press her pendent button

John2.0.1

Is it common for people with dementia to complain that no one will help them yet you learn that they not actually asked for help?

I frequently get calls from my mom complaining no one will help her.  Mom is in MC with Parkinson's. She is stuck in a wheel chair, has very limited mobility and what I consider to be pretty significant dementia.

Mom called tonight to complain that no one would help her. She said that there was no one around. But after talking with her I called the front desk. No my mom has not pressed her pendent button in hours. Yes the MC is fully staffed with aids and the nurse. I think that the MC where she is is a good place.

Do people with dementia imagine that they've asked for help when in fact they have not? Do they think that they tried to wave an aid down but did not? Do they think that they pressed the button but did not? Do they have an extended sense of time where 10 minutes can be perceived as an hour?

My mom is very stubborn when it comes to asking for help. I've seen her refuse help many times. Get angry when help is offered but then complain that no one will help her. She won't press her pendent button except in emergencies and I think sometimes she expects that people can read her mind. When she sometimes asks or says something to me she mumbles it so badly I have no idea what she said. I ask her to repeat it and she often doesn't know what she was trying to communicate.

How do you handle people who claim that no one is around and no one will help when by all appearances they have not asked for any help or refused help and then forgot and get mad?

I am getting really tired of mom calling me saying that no one will help her when I find out that in fact, she never asked for anything. She has claimed that she has pressed her button many times but no one will come. I know for a fact that it's impossible to ignore the button for very long. The walkie-talkies all over the building don't stop calling the room number until someone comes to turn it off. But she claims no one comes.

Yes this is convoluted because mom is all convoluted. And I think that she will often tell me that she pressed the button but in fact has not.

John2.0.1

I thought I would add, two nights ago my mom called me to come over. She said no one would help her get back to her apartment. She was calling from her land line so she was in her apartment in MC. It took me about 10 minutes on the phone to get her to recognize that she was not in a cruise ship ball room but was in fact in her apartment. She does not have to sleep on a couch in the ballroom of a cruise ship because she is in her apartment and her bed is right there. Yes mom I can tell you as an absolute fact that you are in your apartment because you are calling me from your own land line telephone.

Quilting brings calm

Yes, they lose track of time.  Yes, they imagine conversations and they mis characterize conversations.  My mom thinks that the nurses and aids are mean to her when they don’t speak to her just exactly like she’s their best friend.  My parents won’t even wear their pendants. They won’t ask for help and they complain about everything.  Their ASL is very nice and they ate well taken care of if.

Klgm326

OMG, I could have written this! She tells me she is stranded for hours! I know that’s impossible because they live in a semi circle with aides everywhere. The part about “reading her mind”—yes yes yes! And today I was trying to help her and she screamed at me not to touch it. She worries me to death! 

I hate her life has become this...it is so terribly sad at 95 to end up in a wheelchair with so much confusion. It breaks my heart. 

Hang in there!! 

star26

Unfortunately, everything you describe is typical dementia. I had the same issue with my Dad and Aunt. It’s very frustrating. The pendant was completely useless for my Dad at moderate stage and his geriatric psychiatrist said they were useless with all her patients. Useless because my Dad and others did not press the button when they needed help or pressed it inadvertently all the rest of the time. My Aunt pressed it constantly, or said she did, and would call me to complain about being ignored. It put me in a tough situation. I always agreed with her and said “that’s terrible” and told her I’d call the nurses station about it. I did not always call the nurse but when I did I was frequently told something like “I was just in there 5 minutes ago for that issue” or “It’s not really a problem, she's confused” or “I asked her to wait 5 minutes and I’d be back." etc. I mostly stopped calling the nurses for relatively small stuff when I felt confident that she was truly getting good care and was being checked on frequently (whether she pressed the button or not). The so-called problems that I didn't follow up on seemed to resolve themselves and I didn’t hear about that same problem the next day and if I brought it up she barely remembered or said it was taken care of.

John2.0.1

So how do you validate their feelings without validating their missperceptions while also not talking to them as if they are little children. 

My mom complains that aids talk too happy to her as if she's a baby. 

I need her to trust the people there so I can't just pretend her complaints are true. But I also need her to know that she can always trust me.

It seems like a big dilemma.

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John2.0.1

The only number my mom ever calls and can only remember is our land line that has an answering machine. There is no teaching her a new number. 

Because the facility also needs to reach me sometimes i have calls to my land line forward ring to my cell if I'm out.

I suppose I can ignore my mom's calls and let the machine take it. If something is actually important the faility will call.

I don't check messages on my cell voicemail. My phone refuses to alert me if my cell has a voicemail and i can't seem to disable it. My cell phone greeting simply says don't leave a message because I don't check.

I could try just ignoring all of my mom's calls but I'll bet that if mom gets my land line answering machine she will just try again and again and again but never leave a message.

May flowers

The nurse at my FIL’s facility said none of their residents use the pendants and most don’t use the pull cords in their rooms. They do hourly rounds for residents. We let them know things my FIL will often need help with (but may not ask) and for them just to check those things during rounds. Those suggestions got added to his care plan and I know they are asking because his calls about them have stopped for the most part.

John2.0.1

Yes my mom's MC also does check-in on everyone at least once an hour 24 hours a day. However since my mom is so immobile, I've told her that I want her to have her "Button" on her all the time during the day. In this case she claims to have been in the common room, which takes up a full side of the rectangle shaped MC facility, for hours waiting for someone to take her back to her room. There is no way that I believe it. One can't walk around the rectangle shaped facility without going directly though it and the nurses office is right there along with the food service, the big TV.

I'm going over to see her in about 30 minutes. I'll stay until lunch time. She will invite me to stay for lunch for the 100th time and for the 100th time I'll have to tell her that because of Covid I am not allowed to stay for lunch.

Cynbar

This is so hard because a person with dementia is just not always a valid reporter. While you are visiting your mother, observe closely how the staff is treating the other residents. Are they attentive, checking on them often? Do you see anyone calling out for help who is being ignored, or does everyone seems pretty content and well cared for? That will give you a big part of your answer. My DH has been in several facilities for short term rehab, and I am amazed how much info you can pick up by just quietly observing. At one place, I'd be in his room quietly talking to him and I'd hear the staff yelling at other residents, things like "I told you I'm busy!." At others, I'd hear the staff kindly and gently talking to an anxious resident, or calmly answering the same question multiple times. Told me all I needed to know.

John2.0.1

I visited today. Her pendent was all tangled up with her telephone chord. I untangled it. She claims people are playing tricks on her. I was noncommittal. I don't believe for a second that anyone would tangle her pendent up with her phone line. She managed to do it somehow. I had previously coiled her phone chord up and taped it so that it wouldn't get all tangled. She uncoiled it and got it all tangled for reasons unknown.

I have been there a lot and have never seen another resident in any kind of distress. I have never heard another call out. There are always aids around and for the 90 minutes I was there someone stopped in twice just to check on her.

I do need to reinforce with the MC director that staff need to make sure she has her pendent on. Someone should have untangled it for the phone chord and put it on her before I had arrived.

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John2.0.1

I don't know. Maybe. I can ask their opinion.

She went to assisted living when my dad died in August 2019. She was far more lucid then. She used the pendent appropriately.

As she has declined she has become far more stubborn about it.

But I am concerned. With her Parkinson,s her mobility is extremely limited. A couple weeks ago they had to call for the EMTs to help get mom off the floor. The MC is not allowed to fully lift my mom up. If she's stuck on the floor she'd have to wait an hour.

And that's another whole issue. She prefers to crawl around on the floor than use her wheelchair in her room. There really is no stopping her. She gets out of bed at night to bathroom and crawls there. Tries to climb up on the toilet. Then when she's done she drops to the floor again and crawls back to bed. She has bruised herself this way a lot. Once so badly she had to go to the ER for Xrays. She is going to really hurt herself some day for not asking for help.

But this is a whole different problem.