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My mom, who has been back home for 3 weeks with 24/7 care after a stroke, calls me 20 times a day (though I block the calls while I'm at work) telling me she needs me to cancel the aides because she doesn't need them. NO amount of reasoning or logic gets through to her. I feel just terrible for her, because she lives in a small apartment and it is very claustrophobic with an aide there 24/7 but there is no other option. She was twice as miserable in the SNF. I just called her and screamed and sobbed and told her there's nothing I can do about the fact that she had a stroke and that she needs care. She cannot hear it or accept it as reality and insists that I need to tell the aides not to come. Today I started sobbing and screaming and told her to shut the f*ck up and hung up on her. Of course I feel terrible, but I am losing my own mind due to all this and other stuff in my life. Her boyfriend and I visit and take her out 2-4 times a week. She has TV but won't watch it.

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LOL Sorry, but your meltdown sounds a lot like me! You can't reason with crazy, and the people who tell you to tune it out or ignore it have probably never gone through it. Sorry. ((HUGS))
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Xina, I have been following your postings, my gosh you do have your hands full. Believe me, I know the frustration.

My Mom [late 90's] was also very stubborn. Her doctor insisted she have caregivers around the clock as there was no way my Dad [in his 90's] could take care of her. When I brought Mom home from the hospital she was running around like she never was in the hospital [she had a major fall and had a brain bleed], wow talk about a fast recovery. On the 3rd day the caregivers left as Mom was being very insulting.

I've gotten angry on the phone, too, with my parents, especially my Dad who was trying to guilt me into driving them, he would say he would start driving again. That was a big panic button with me. It wasn't until Mom had passed that I realized it probably was my Mom chewing on his ear about needing to be driven somewhere.

You wrote that you and your Mom's boyfriend take her out 2 to 4 times a week. You need to cut that back. If the boyfriend wants to take her out, then let him... if he doesn't drive, then he can hire a taxi. Your Mom needs to settle into her new "norm" until she gets better.
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From my own experience, you accept the idea that you have fallen off an emotional cliff and you need to save yourself first. If that means getting her back to skilled nursing until she improves, so be it. If that means medicating her obsessions so you can have a decent night's sleep, let it happen.
Otherwise you die first.
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Xina, next time Mom calls growling, think of yourself laying your own ears back... the visual of an animal doing that can bring a smile to your face.

Or many of us here have imaginary helmets that we wear for when we need to bang our head against the wall. That reminds me, I need to clean my helmet and paint that wall !!

Some of us have found "agreeing" with our parent can help if you think they won't remember that the next day. That way, they feel better, and you feel better [win-win]. "Yes, Mom, we will let the Aides go next week" [but you don't].
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Thanks all. I would love to medicate her, but she won't have it, unfortunately. It's really sad and hard because it is totally understandable that she would feel imprisoned in her current situation. I would too. Plus, she just got a bill for $16,000 (no joke) for her last two weeks in the long term SNF unit. Her Medicare coverage ended when they transferred her there. She feels like nothing about her life is in her control anymore, and it's not. At the same time, she's driving me crazy. But how can you be angry at someone who is losing so much all at once?
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freq,
its amazing how we sometimes figure things out months or years after the fact . ( your mom probably raggin on your dad to go run the roads ) .
nearly anybody has some ability to " play " us but you just aint been " played " till a malwired dementia patient takes you for a spin ..
well said cwillie ;
you cant reason with crazy .
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Xina, try not to dialogue with her on the phone, at least... tell her something and if she starts to go on and on, say "Oops! Have to go..." and hang up. Then phone off hook for awhile; if you always say something (not a lie) before hanging up, she won't be able to say you "hung up on her". I do this and it works.... I get angry at how needy my mom is, too, but that doesn't help; what does is to set a limit to what you are willing to do for and with her (i.e. visit 2X a week, talk to her 1X a day, etc. ). Find your own limits/boundaries and do your best to stick with them. On an airplane the flight attendant puts on his/her mask first so she can live to help the others.....
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One thing I do when my mother is telling me she does or doesn't need something is tell her that she'll have to talk to her doctor about it. I tell her I am only doing what the doctor said to do. In your mother's case, tell her the doctor said she either needs a SNF or someone to be at home with her. Which does she prefer? One or the other, not neither. She may be happier with the caregivers when she thinks of the alternative.

If you ever find yourself getting to the point of yelling, just hang up or walk away. We all get angry, but showing it makes both them and us feel bad. I absolutely hate myself when I yell at my mother, even if she needs yelling at sometimes. Hanging up or walking away to cool down is much better. When it comes to yelling at them, don't do it. You can stop yourself.
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Xina, you are giving yourself too much of a sense of responsibility and control in this situation. Unless you are your mom's doctor, YOU'RE not the one medicating her. What does her doctor say? Has she been seen by a geriatric psychiatrist? A dementia specialist? Your mom's ability to reason appears to be gone. She's agitated. Please try to see these as symptoms and get her to the right medical professional for evaluation.
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Xina
Good advice from the posts here
No one can argue like my Viking mom and me and her phone calls drove me over the edge while I was at work

I will say if she cannot accept caregivers in her space you are fighting a losing battle - my mom claims even the private caregiver I have with her overnight in memory care steals from her and wants me to fire her - of course n the next breath she wants to go home and hire her own caregiver - when I remind her that she ran away from the caregiver at home and broke her ankle she ignores me

So after arguing with her tonight I walked out of her room and went to the laundry room and a few minutes later she was out in the common area complaining about me so I changed the subject and asked her if she wanted me to brush her hair - how could she refuse ? At 93 I'm a bit reluctant to walk out mad unless she just won't calm down at all

As for meds - please understand that your mom may have to have something whether or not she wants it - my mom would absolutely refuse if she knew she was being given an anti- psychotic and I struggled with this decision for quite awhile - I tell her it is her BP pill
It's a stinky situation isn't it
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And Xina, check over that bill carefully. 16,000 for two weeks is quite high. And I seem to recall they moved your mom with no notification? I'd be on the phone to the billing office, if you have POA. Otherwise, give it to mom's lawyer.
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I know, I am way too enmeshed. Lifelong pattern as the child of an alcoholic (mom). Sigh. I am really trying to set boundaries. I do block her calls for much of the day. She is seeing a geriatric primary doc next month (her old PCP left the practice). I disagree that you can force depression meds on someone, though. She mostly stays in bed and won't even watch her brand-new TV. Maddening!

Another issue is that one of her aides texts me a lot for no good reason. Today it was : "She wants a piece of pizza, but she refuses to go out with me and get one." Then she texted: "There's food here but she doesn't want it."

I told her I didn't know what to tell her. I mean, unless it's something important, these texts just make it harder for me to detach from the situation. It's this woman's job to deal with my mom. If she finds her too annoying, she can get a different job.

It really helps to come here and get advice and hear everyone else's stories. Thank you.
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xina - in many ways my situation with my mom was similar to yours - for a while. After a bad fall mom was moved from IL to AL with a three week pit stop in rehab in between. Mom hated rehab so much she would have been willing to move to a garden shed to get out of there, so she accepted the AL move. That move was one of my bigger mistakes as the rehab staff was telling us she needed 24/7 care but I didn't agree - after all mom had been doing okay in IL with a part time caregiver- it just seemed to drastic a step to a NH to me. Then, even with a private caregiver in AL mom fell twice in her first ten days and I was told we had to move her out due to her needing a higher level of care. Next stop - the nursing home. Mom fought this with everything she had in her but we were able to get her there - it was a beautiful place, her own room with private bath, all her own furniture and things - even a sliding glass door that opened to a private, landscaped courtyard shared with only five other rooms. Moms first night was hell - one of the worst of my life and for the next six weeks things didn't get much better with my mom calling me nonstop, alternating between cruel/vicious and pathetic/sobbing. Mom was doing her best to get kicked out - accusing the Director of sexually abusing her and the staff of stealing from her. Mom was also pretending to have fallen almost daily, trying to make me think she wasn't safe there. Mom wanted me to rent her a regular apartment where she wanted to live alone. Never mind mom couldn't change her own soiled Depends without covering the bathroom and herself in poo or that she couldn't get herself from her wheelchair to do anything - not even dressing herself, let alone cooking, bathing, etc. Finally mom accepted an apartment wasn't do-able so she moved on to living in my basement. With no exaggeration- I was very close to an emotional breakdown. Every morning I found myself in tears before I'd even poured my coffee - I couldn't eat, couldn't sleep - and all day long the phone rang - either mom, the nh, moms dr, moms insurance co, the pharmacist etc. I ended up at my doctors and he prescribed an anti anxiety med for me. He also recommended getting my mom into see a geriatric psychiatrist- a suggestion I had seen here, probably from Babalou, lol! I was able to get my mom seen fairly quickly and had come up with a therapeutic fib to get her to go. I told her she was being screened for a new med to help with memory. The psyc did a medication overhaul and over the next month meds were tapered off and new ones started. At the end of the month my mother was 1000x easier - more her old self and in no way a medicated zombie. I realize you believe your mom would be resistant to this approach- seems like you are too - BUT - I strongly urge you to think it through, see if you can come up with a way to make it happen. I honestly believe I would have had some sort of mental and/or physical collapse had I not gone the psychiatric route.
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XINA, please listen to Rainmom. Her mom's experience is much closer to that of your mom.

We've been fortunate in that I'm in the mentsl health field, snd that when Ive recommended a psychiatric condult, my poa brother has agreed. YOU are in the good/bad/position of not having to consult with other family members. Just get herva psych consult and do what is advised.
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It sounds like you are still expecting your mom to eventually accept reality, understand the situation and get better in her dealings with you. But, since she cannot do that, it's likely to get much worse.

Perhaps after you are able to speak with a doctor who can go over her condition, you can accept some things. I know that it's difficult to imagine how an adult doesn't understand that they are immobile and that they are not able to stay alone without an aid. But, that kind of magical thinking is not uncommon with people with cognitive decline. If she does have dementia, which is what it sounds like, you will need to make the hard decisions and implement them. When someone is not capable, they can't keep driving the train. If you just don't see yourself doing that, then I'd try to find someone else to step in. Losing your temper is understandable, but not very helpful for someone who is in her position. It's not her fault and she's not trying to drive you crazy. I hope you are able to get some relief. I do feel for you. It can be very stressful.
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OK, I will try to arrange a psych consult once I check the rest of the 300 things off my list! She had one in the SNF and the shrink saw no need for antidepressants. She is completely aware of every single pill she takes and checks to make sure they are correct when the aide gives them to her. (She is also proud that she only takes 5 meds.) No way she will fall for any kind of ruse.

As for me, I've been on meds for depression/anxiety for over 20 years. I'm on a combo that was working beautifully for months until all this came down.
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Me again! Isn't it amazing how remarkably complex the brain is? My mom's short-term memory and denial pathologies are huge problems at the moment, yet she is savant-like in other ways. She has always been an intellectual, especially re: theatre and the arts, but now that is off the charts. I mentioned getting tickets to The Cherry Orchard and she instantly announced not only the playwright, but the actual date he wrote it! We were talking about some old movies, and she listed the stars and director of each. Copernicus? Oh, he was the one who figured out that the earth revolved around the sun, not the other way around, in the 16th century. So weird to adjust to this encylopedic knowledge combined with confusion about why she needs an aide.
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Xina, I know exactly what you mean. My mother is lost making sense of the world and things she needs to do, but she is a whiz at word games. She watches games like Chain Reaction on TV and can come up with the words faster than I can. To watch her do word games you would think she was totally okay and smart. Then you see she can't remember what day it is or understand her finances, you change your mind fast. The good thing is that the word area of her brain was left intact.
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BTW, my mother used to work crossword puzzles and do word games almost like a habit. She could spend hours a day doing them. It makes your wonder if areas of our brain we use a lot tend to stay healthier when deterioration starts to set in.
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xina - my advice to get your mom to see a geriatric psychiatrist was based on the only thing that worked for me when I was dangling from the fraying ends of my rope. Do it or don't but it wasn't meant to tell you to add it to an already overwhelming list of things you're trying to accomplish. My situation had become completely unbearable on every level. You mentioned taking your mother out to see a play - sounds like you are still able to enjoy each other's company - my mother and I - our situation, was way beyond that point - so maybe my solution isn't for you - you're not there yet and you might never hit that desperate, dire point - that I did. But if you do - the psychiatrist for your mom was just a sincerely meant, helpful suggestion for your consideration- it wasn't meant to come across as a command. Sorry if I over-stepped.
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We all get that dealing with your mom's stroke and subsequent return home has been stressful for you, and it has created an endless " to-do" list for you. You're a wonderful, fantanstic, unbelievably good daughter for arranging for your mom to go home. She was miserable in skilled nursing.

But now, it seems, she's miserable at home, too. And driving you crazy. So getting her in to see a geriatric psychiatrist ( with you there, in case she's gaslighting the psychiatrist--she's an alcoholic and the shrink in rehab thouht everythinng was fine?--did you hear that from the doc, or did mom tell you that?) would be my suggestion for getting a long term "fix" for her calling you 20 times a day. In terms of priorities, it comes after buying food and toilet paper, but way before going to see Chekov.

You might talk to her neurologist about where in her brain her stroke was. I was talking to a friend the other day who was telling me about her elderly aunt who was paralyzed on the left side from a stroke. I asked if there was emotional disregulation. "How did you know that?". The right side of the brain contains some of the mechanisms that regulate emotion. Damage on that side can cause loss of that ability, with no impairment to language and cognition. So, mom is " sharp as a tack", but no longer capable in other areas.

As always, we are "just" a bunch of caregivers here, reporting on what has worked for us. My mom was a weeping anxious mess before ger psych got her on the right mix of meds. For some folks, Rainmom and me among them, a reboot or initiation of psych meds has been a lifesaver. And frankly, if your mom is an alcoholic, it's likely she's self medicating something.
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Xinabess, I have read many of your postings. Some may consider this tough love. I want you to feel better - I am the adult child of alcoholic parents and extended family too. Please go back and look especially at your earlier postings this year: https://www.agingcare.com/discussions/so-sad-scared-and-depressed-about-mom-196156.htm?cpage=1. This predates your mother's stroke. It detailed your mother's hoarding, denial, alcoholic lack of self-care, fecal incontinence in biohazard conditions and complete inability to face reality BEFORE the stroke and rehab. You discussed your enmeshment. Your fear of her dying, your inability to enforce boundaries and limits. A lot of caregivers have given you love, support, positive feedback, ideas, and suggestions. For your own sanity, you need to read your own postings and delete your name from them. Read it as if you were reading someone else's experience. You are a smart lady with your own children and job to consider. Please don't keep trying to fix your mother. She is drowning and will happily drag you down with her for the thirtieth time if you don't get out of the pool. Print out your postings and share with your therapist. I had a therapist tell me that I had as much trouble being honest about my mother as she did. With love I tell you that you deserve your own life and your children deserve you as a mother for them - you need to give yourself permission to be a separate person or you will perpetuate this cycle with your own family. I wish I could hug you and tell you how worthy of self love and care you are. I worry for you - your mother chose her own path long ago. "Daughters of Narcissistic Mothers". My mother denied my abuse at the hands of my stepfather because "she couldn't handle it". Don't be that mother for your own children, please. Give your self permission to heal. Find a social worker or hire one as part of the Medicaid spend-down. 40% of caregivers die before the person they caregive. It's higher than that for the enmeshed. Please.
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GSA, excellent analysis and recommendations.
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Babalou and guestshop - excellent posts! If I could change one law, one requirement, regarding dementia and the elderly - perhaps as a Medicaid/Medicare stipulation- it would be a yearly, mandatory visit to a geriatric psychiatrist. I spent a few years beating my head against a brick wall in dealing with my mother. I lived in a constant state of chasing down and closing the barn door long after the horse had gotten loose - it was a miserable existence of waiting for the other shoe(s) to drop. Fear, anxiety, depression, anger, hopelessness - and that was just me. I can't imagine what my mother was going through emotionally as her world got smaller and her ability to control it was even less. Once my mother received the proper meds from the psychiatrist things became so much better - for the both of us. The day my mother said that she knew she was where she needed to be - my relief was so huge, it literally felt like an elephant had gotten up off my chest! I have a tendency to be pushy - and the last thing I want to do is cause any additional pressure or bad feelings among my sister/brother caregivers- but when something like this worked for me in such a profound and significant way - I just want everyone to try it. My only regret in going the psychiatric route is that I didn't do it a hell of a lot earlier! But that's just me.
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Oh, no, Rainmom, you didn't overstep at all! I appreciate your advice.
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I'm mad but not in the mad hatter way. Glad you can work. Try being with a father all day that constantly calls me on the monitor, and when I do something he asks, you can be darn sure there are about 30 other things to follow and I haven't even completed task #1. We do have a night caregiver but after her 3 week vacation and getting 6 hours of sleep, broken up every two hours...I'm feeling quite mad hatter. He doesn't refuse caregivers but says he can do things by himself (Parkinson's and dementia) I'm feeling that I'm heading towards mad hatter lol. And of course he refuses to go to a nursing home. He will be 80 this May and knowing him will make it to 100 lol.
Sorry you have to deal with this like a bunch of us on here. Our Neurology told me if I can't take care of him anymore, to bring him to the ER and say that....but empathetically can I myself do that? Sure getting close. Nursing homes are not always the right place (lack of showers, attention, etc....) But if it comes down to my sanity I know he will have to go.
Sorry I have no suggestions but sometimes hearing other stories makes me feel not alone. I hope you get at least the same feelings reading the posts...hope you get great suggestions! Hugs.
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Xina, I just went back and read your other post ( about your mom's mental and physical condition BEFORE the stroke). I'm curious how your mom avoided eviction from the noxious condition in her apartment.

I didn't realize that THAT situation predated this one. That being said, it doesn't appear that your mom has good reality testing or the ability to assess her need for assistance, even before the stroke. Is this long term mental illness? A personality disorder?
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You are all so wise and I appreciate your perspective enormously. I feel very heard and validated here and hope I can reciprocate once I come out of this crazy phase. Babalou, my mom has always been a complicated person. Charming and funny and warm, but also drunk with a very traumatic past. However, she functioned on her own just fine until she hit 80 and a cascade of health problems (cancer, for one) threw her for a huge loop. That's when the massive denial and dysfunction kicked in. She might have a personality disorder--who knows?

And now indulge me as I digress: What I really want to do is write a memoir about this year of 24/7 home care. I am a journalist who used to write in-depth profiles of people for magazines before I had to get the boring but stable editing job I have now. I would delve into the personalities and life stories of the aides, the weirdness of throwing two people together randomly 24/7, how the aides and my mom found a way to tolerate (or not) each other. My role, my mom's bf's role, etc. I think it would be fascinating. Any book agents out there? I've got the chops, I just need an advance!

Over the weekend, my mom's warm and wonderful BF took her out for dinner and invited the aide. So it was the two heavy-drinking octogenarians and the 28 year old seventh day adventist from Ghana who doesn't touch a drop of alcohol. You can't make this stuff up!
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Oh, and Babalou, re: the eviction, my mom had her stroke literally the day before the sh*t was going to hit the fan. Not a coincidence, IMO. So I was able to get a cleaning service and she passed the apt inspection. Now the place is orderly since she has someone there all the time. So that's the silver lining.
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Xina, thanks for tying up that loose end. I'm sure you are correct, that the stress had a part in the stroke!

You are correct, there is book in your tale. Write the first chapter in your "spare"time? New Yorker? Atlantic? NY Times Magazine?
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