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The big bummer is that my mom cannot use her left (dominant) hand at all, so that makes reading and doing puzzles (both of which were huge pleasures in her life) impossible. And for now, she refuses to learn how to use a Kindle. What can you do?
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I recently saw an ad sponsored by AARP for a web site that offers word games and puzzles specifically aimed at keeping the aging brain healthy. Sometimes I think I should really look into it -lol!
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@ Jessiebelle, 'most definitely our brains stay healthy when we do the 'brain games' i realize how real the phrase "use it or lose it" really is. And not just brainy type games but staying active in general. Walks, gardening, socializing. TV doesn't cut it. I used to do word finds and those intense connect the dots puzzles eons ago when I was little and forgot I used to love them. I need to go back to them.
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Xina, it is so very hard to reason with elderly parents who don't realize they need help. That is the worst kind of old people. You need to say "ok, can you do this or that by yourself?" And maybe even be at home and tell her to do what she says she can do on her own and she when she obviously can't maybe she will realize she needs help (unless she is mentally confused)

But I totally get them feel angry and frustrated. I know my mom feels that way. She is tired of being poked and prodded at the hospital and has started fighting them. It's a lose/lose situation sometimes. A big part of it is her own fault for neglecting her health. It's a bi### getting old.
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Oops, should tell you that we get along pretty well and talk on the phone a lot; the trouble only starts when the subject of money or anything "personal", like doctor visits (I'm not allowed to go in or have any input or hear results unless she's out of it with pain (which happens sometimes), then I'm oh so welcome to help.... so I guess I'm OK as a "friend", but not to be trusted with anything else (sigh). It gets old when I have to keep saying "I don't know" if someone asks me ANYTHING about her, and was no good when the doctors told my husband and me she should be in a nursing home - as if I/we could ever get her in one..... even if we wanted to. By the way; she only has SS, so there's no house or money involved here; I just want to help, but "not go crazy".
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Hi y'all! So here I was, thinking my mom was doing pretty well with her pain level (deteriorating spine/bad leg pain) and pain meds, and last night I found out she is hitting relatives up for money AGAIN..... She says she is broke, but spends what she gets on people to help her with so many things that do not need doing, even tho SS pays for a hsskkpr, shower lady 2X a week, ensure drink, weekly RN visit..... etc. etc. I do some of the stuff, but my blood pressure is acting up and husband has said no more than 2X a week to go there or take her out. He's right; she's so demanding, and since I can't step and fetch it for her as much as she wants, she pays for all this extra stuff and then says she's broke. She will sometimes take an idea from me and do it, but will NOT let me help her with finances, or even let Mike do her checkbook. I do not have POA or any other paperwork, tho her RN finally talked her into doing a living will - I did not get a copy. My brother is 1500 miles away and other than sending a check about once a year when she asks, he doesn't want to help - nor do I, as I have never been her favorite person and she treats me like a 12 yr old, but she seems to be losing control here, and I wonder what can be done - any ideas, ladies (or gents)?
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So true, Rainmom. I told my mom I feel like her Mommy lately, though, given that I'm an ACOA, that is not an unfamiliar dynamic. In today's (blocked) voicemails, she told me I'm being very cruel for keeping her captive. Sigh. It is really hard to try not to respond when she challenges me over and over. When we get together in person, though, she is incredibly mild and sweet, even when she asks about the forbidden topic. Her personality has definitely changed for the better overall.
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vstefans mentioning the incident of losing it and yelling made me think of a particular "reverse milestone moment" - that what I call them. I was just beginning to come out of the previously mentioned worst phase with my mom. Mom had been living in the nursing home for a couple of weeks, but I had found this site for roughly the same length of time and had been reading every chance I had, learning tips and strategies- it was very dim, but I could just make it out - the light at the end of the tunnel. Mom had called and was trying to get me to rent her the apartment, alternating between being pathetic and ripping me a new one. I was attempting to reason with her - I hadn't yet fully grasped the futility in that - and we were going round and round and round. I could feel myself edging towards, panic, hysteria, a meltdown or a breakdown. But then I started to recall things I had read here - and I remember this as if it was yesterday- for the first time it really hit me, it really clicked - I had become the parent and my mother - the unruly, tantrum throwing child. And I worked up the courage to say "I'm not going to keep arguing with you about this. I'm going to hang up now. I'll see you...". After that call is when things really began to change and I realized - like it or not - I was the one who had to be in control. The dynamic that had existed between us as mother and child was over forever. It was a sad moment but in a way, an empowering one. Next time you find yourself cycling in a pointless, endless argument and feel yourself beginning to loose it - try to remember that ultimately you are now the parent.
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Oh man, I dream of being published in those magazines. At the very least I could start a blog about it. I did one for years on being single after 18 years of marriage and one of the posts was published in the NYTimes. Thanks for the encouragement, everyone! Creative outlets are indeed so important when dealing with this crap. I'd love to hear about anyone else's creative outlets.
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Aha. She wasn't getting along just fine before. Encyclopedia knowledge and common sense/judgement that a person needs to live independently are two very different things. Nevermind the differential diagnosis - everything from bipolar to schizophrenia to high functioning autism to just the substance abuse alone could be on the list - NO guilt for you! You rescued mom's place when she had the stroke, you got her out of a SNF where she was miserable and got caregivers lined up, and you are holding steadfast in refusing to cancel them. You have every right to insist that she either puts up with caregivers or goes back to a SNF or AL, depending on finances, and you have every right to use any funds she has available to get elderlaw consultation, estate planning, or eldercare coordination services to reduce your burdens in orchestrating everything and figuring out options. You both need and deserve to keep your job and your sanity.

I know you feel bad about being angry at her and telling her to STFU but that may be what it takes to even begin to make constant pressuring you about the situation off limits, since rational discussion went in one ear and out the other. I remember apologizing to everyone around me when I yelled at my mom - not really even yelled but just told her firmly a call was inappropriate - sh'ed interrupted a team conference and patient care issues many times and this was a request for me (1500 miles away) to get her some paper towels or briefs or something like that because the closet was empty out at her AL. I knew it seemed a reasonable request to her so yeah I felt bad not just patiently explaining of calling the staff myself as I sometimes did, but that day I could not take the extra time do it. I called back later and they had taken care of it, of course.

Blocking the calls while you are at work is fine; hanging up, softly or loudly the second the subject comes up on the phone is fine; MAYBE you could agree to reassess the need for care aides on a weekly basis with her in person if some minimal compromises could be made, or maybe that should even be avoided if not. Do what makes sense, as you have been doing, and realize that you have been duly appointed as the person in charge of making sense at this point - take some pride in that!

Looking forward to the memoir, too BTW.
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A digression, but AMEN to Rainmom's suggestion that Medicaire/Medicaid tack on a mandatory annual geri-psych evaluation.
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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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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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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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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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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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Oh, no, Rainmom, you didn't overstep at all! I appreciate your advice.
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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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GSA, excellent analysis and recommendations.
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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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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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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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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, 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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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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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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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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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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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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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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