How to handle mom screaming and becoming increasingly infantile and demanding?
I've been here ten years (frog-boiled) and am on my last nerve.
Mom's health has progressed to very bad with a combination of heart failure, lung issues, cognitive decline (not Alzheimer’s type dementia, she knows where she is etc., just having other issues), hearing loss (won't wear hearing aids) and legally blind. She's 85.
Lately her behavior has gotten worse and she has gotten super clingy and crazy. (Even more than before which was excessive). This screaming started when she went in the hospital a few months ago - she's been in and out since then multiple times. She's figured out that she can scream and push a button and people bring her things.
This is coinciding with her often being too sick to do it herself - which makes it hard to set a boundary because sometimes she can do it and sometimes she can't.
A few examples:
When her PT is here, she will start ordering me around to get her soda, her lunch, this or that. The PT will tell her that she can get up and do it. She will scream "I'M TOO SICK!" or just sit there and then go back into the loop telling me to go get her soda.
If the PT is not here, she will tell me to do it. If I refuse, and tell her she needs to do things for herself, she will start to scream at me. I cannot get through a phone call, a break, without her right there, asking me to do things, or answer questions, just extreme clingy dependence. I don't mind doing it when she can't, but it's turned into 24-7 nursing and waitressing.
Efforts to reason with her are utterly pointless. Don’t break through even a little bit.
We had a battle of the Morning Tea, which she screamed and screamed that she could not do (two weeks ago she could, but now she's worse and can't). I bought her a self-heating mug and she refuses to push the button on the bottom, saying she "can't." OT had no success with her on that. She is now acclimated to the mug, but originally she was angry and said "I don't want a mug! I won't use it! I'll break it if I have to!" Because she wanted ME to bring it to her. (Too bad)
The contention here was that
The other day at her doctor's office, I spoke briefly with the nurse about her prescription, maybe 45 seconds, and she sat in the lobby screaming my name and that she wanted to go home.
In appointments she will whimper and cry that she wants to go home NOW.
When I tried to tell her that it was inappropriate to scream like that, she said "I'll scream as much as I want to." So no understanding.
The other day the PT tried to walk her onto the porch and she said "I'll NEVER DO THIS! NEVER! NEVER!"
She also had developed a habit of yelling "help!" and started to do it for anything, such as not being able to find a plastic lid or the TV remote. One day she started yelling "help!" on the way out to the car for her appointment and someone was going by and they were alarmed thinking she actually needed help. I have explained to her that help means you are having a heart attack, stroke, or something is on fire and that's it. It got a little better.
Half the time she is so sick that she can't do anything. The other half she is ordering me around and screaming. I am at the end of my rope.
Reasoning doesn't work, so how can I stop this behavior and save my sanity? We are in the process of getting some aides covered by Medicaid, but they are only a few hours and I am stuck with this all the time.
She belongs in a home, but she's worse there. It's too much stimulation/change for her and she devolves into screaming at the staff and demanding they bring her things. She's better at home. Here she mostly reads or sleeps or watches TV, in between ordering me around that is. I hate to put her in a home because they'll HATE her (they did in rehab for sure) and surely she won't get the care she needs.
My mental health is on my last nerve and it's hard to take care of yourself when someone is in the other room screaming for you every few minutes.
Strategies welcome.
She's not always screaming. Sometimes she's quiet and agreeable. Also there's screaming - as in screaming AT me, which mostly happens in a power struggle loop. And then there's screaming FOR me, which happens all day long - any time she wants any little thing or a question answered. (If I ask her to do it herself, such as pick up the piece of paper with the directions to say "Alexa, turn on the TV," sometimes she will do it and sometimes she will just scream "I CAN'T". Even though she can.
She's not always screaming. Sometimes she's quiet and agreeable. Also there's screaming - as in screaming AT me, which mostly happens in a power struggle loop
And then there's screaming FOR me, which happens all day long - any time she wants any little thing or a question answered. (If I ask her to do it herself, such as pick up the piece of paper with the directions to say "Alexa, turn on the TV," sometimes she will do it and sometimes she will just scream "I CAN'T". Even though she can.
What can anyone say that hasn’t been said before? Which is that you are ‘enabling’ mother, and ruining your life in the process. If you stop doing what she asks/insists, the whole house of cards will come tumbling down.
What do you want us to say? What ‘strategies’ are you willing to implement?
What are your mother's mental health diagnoses?
Is her psychiatrist aware of her increasingly infantile behavior?
You've sacrificed 10 years of your life. Don't you think that's enough?
Will you ever be able to afford to retire?
I have no strategies, except perhaps to watch Teepa Snow videos. But it's not clear to me that mom has dementia; it sounds more like extreme mental illness
It also seems possible that once in a facility, she will get the meds she needs and won't be around folks who beg and negotiate. They will expect cooperation in return for care. She might then actually gets what she needs, as opposed to what she wants.
Yes I guess I have only myself to blame for getting into this. I was trying to help when she got sick and it's just gotten worse.
The screaming started a few months ago during rehab from a hospitalization.
The nursing facilities I have seen are when she has gone to rehab are overbooked, understaffed and very sad. I don't know that I can live with myself seeing. her wasting away in a wheelchair in a hallway or at the hands of some technician who doesn't like her and isn't getting paid enough to put up with her. Covid was also a concern due to being immune suppressed.
I don't think she will be with us much longer due to her age and her health which is very bad. But she might be.
If she does not pass by the end of the year I think we will be looking at a home in 2024, provided I find one that is suitable.
As for the post, I"m just looking for behavioral strategies to deal with her in the moment when this is happening.
In other words, perhaps you need to reconsider whether she really is better off making your life a misery, than she would be in a facility – even if you don’t like the look of facilities.
Everything you have written are signs of Dementia. Someone who can reason would not act this way in public. Heartfailure, the heart is not pumping blood thru her system like it should so oxygen is not being properly distributed. Same if she has lung problems. She is not getting oxygen to her brain.
You said "morning tea". Are you from the UK, if so, then ur healthcare is much different than ours. Maybe Mom would do well with oxygen. Maybe a med to calm her down.
You may want to tell Mom, if she does not do for herself, you may need to place her because you cannot continue to be at her beck and call.
I was surprised at just how long people can go on, and in much frailer health than your mother seems to be. I think that many caregivers become stuck because we think we have already put in so much effort and we don't want to drop the ball so close to the end zone, I know I did. I'm glad you are making plans (at least in your mind) to have her placed in 2024, now I urge you to make those plans concrete.
She's not going for "rehab" where there is an expectation that the person will work at getting better. She's going somewhere to get "comfort care"--whether that's palliative or hospice or just keeping her comfortable (with good mood stabilizing meds) she's not going to be the awful, demanding person that she is at home.
It's clear that you want the best for your mother, and now that you're at the end of your rope, the best care for her needs to be somewhere else. Her mental status is deteriorating, and at a care facility they'll know better how to handle her.
She'll never regain reasoning power, she will continue to consider you her slave, she'll scream and yell until she has no vocal chords left. This is what they do.
Since you want things you can do now, I suggest meds. Meds, meds and more meds to the point where she's calm or sleeping all the time. There will be people who object to meds and say a dementia patient shouldn't be medicated to the point where they are a zombie, but I disagree in instances like this one. Life with a zombie has to be better than life with a screaming maniac monster woman. Talk to her doctor.
So sorry, I wish you well, but that won't happen until you get her OUT of there.
If you do a browser search of "dementia+strategies to deal with shadowing" much information will come up. Pick what you think will work in your situation.
My own very elderly Aunt with mod/adv dementia screamed her sister's name incessantly. It did diminish but only as time passed. The family caregiver provided distractions and purposeful activities for her (eg: folding a large stack of kitchen towels).
Resist answering any of her inane comments. There's no point. Redirect or distract or ignore. If a facility worries you, find a private companion aid but make sure this person is familiar with and knows how to deal with dementia behaviors. Otherwise they will just quit. It will take time for your Mom to aclimate to another person. She will resist it at first. You can tell her the person is there for *you*.
I wish you clarity, wisdom and peace in your heart as you work through options.
You need to look at yourself really hard, not just as Mother.