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I just need to vent. I've posted on other areas of this site before, but am struggling so much. My 83 year old mom lives alone and I am her only child. She has had a very tough year, with breast cancer that required a mastectomy and radiation, followed by now ongoing fecal incontinence, which is just horrendous. She is not demented--truly. She just can't face the fact that she is getting old and needs help. She lives in a big apt building and has to ring people up. The apt gets increasingly filthy and then she stops letter her cleaning lady or me or her friend come over because she's ashamed of the mess (takeout food, Depends, newspapers). Over the summer she had to go to the hospital for a fractured vertebra and I went in and cleaned everything up. The place was a DISASTER. Anyway, I anonymously called APS and my mom freaked out. She wouldn't let them come up but made an appt for the woman to come back. She had the place cleaned by her cleaning lady, let the social worker up and since everything looked just fine, the case was closed. Now it's been weeks and I'm sure it's back to being a disaster. I don't know what to do. It's scaring me. I sob about it every day, terrified of what's going to happen next. She has made numerous appt with a gastroenterologist to deal with the incontinence, but then cancels over and over again. Same with her cancer doctors. She makes appts and then doesn't go. She needs help getting to appts, but won't accept any. I'm LOSING it.

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Me again. I'm just a wreck. My mom's building was supposed to do their second inspection yesterday but my mom called to reschedule. Her apt is squalorous (feces due to incontinence, spoiled food, bugs) and she needs help. (In case you haven't read the beginning of this thread, she will not accept help of any kind and she lives in a Ft-Knox like apartment building where if she doesn't tell the front desk you can come up, you can't. Period. She won't let anybody up, including the SW from APS.) The building does an annual inspection, which they did a few weeks ago (because she canceled it so many times that eventually they insist on coming in and if you don't let them in, they come in anyway). They determined her apartment was "messy" (an understatement) and they are giving her another chance. But she is allowed to reschedule that second inspection until Jun 9.

I've been calling the building SW and the maintenance dept all week, begging them to issue me a pass so that the front desk can let me up. They will not do that, under any circumstances, because it is the right of the tenant to decide who comes up or not. So then I implored them to go up before the second inspection deadline, which they also can't do because the building policy is to give tenant's X amount of time to clean up. No budging on that rule.

So. I am going CRAZY. I know I should "let go and let god," but I feel too scared to do that. I'm desperate to have someone go up there and see what's going on. At the moment, I am wondering what would happen if I called 911 and had them go there (since it would be from my cell, they wouldn't know where the call was coming from.) Does anyone know what would happen if I did that??
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Thanks, Sunnygirl. There is no way she can come to my house. It's small, it has stairs, we have no extra bedrooms, etc. She wouldn't even want to live with me. That's not happening! She really can't go anywhere else. She is in an ideal setup to age in place--big building, elevator, support services, low rent. But the only way she can stay there is if she accepts help so that things don't spiral out of control again.

I suspect when push really comes to shove--ie when she is actually issued the warning about eviction, she will finally arrange for the place to be cleaned. I've heard APS will do the cleaning. We'll see. I'm thinking of telling her to call the SW I spoke with. Maybe that would make her believe that this is really about to happen.
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Correction to above. SOMEWHERE not someone.
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Man, it sounds like things really are now at the end of the line. I don't know NY eviction laws. You might check with an attorney to see what she might expect. I suppose she could get an attorney and fight it, but considering the fact that she refuses all help, I guess she won't do that. It sounds like she will not believe it right up to the end. What I would be cautious about is allowing her into your home. If she has no one to go, she may then turn to you. I think that would be a disaster. So many posters describe how they tried to help and allowed their loved one to move in with them and then the behavior goes off the rails and the adult child is trapped. I'd give that a lot of thought before you step in. I might try to find someone she can go in advance, like Independent Living.
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Here's an update: I spoke to the social worker in my mom's building (it's a huge complex with lots of older people, so there is a social worker). They do annual inspections of the apts and my mom's did not pass because of the squalorous conditions. They are going back soon, I believe with the SW. If she does not get the place up to their standards (which she cannot do alone but she refuses all kinds of help) they will serve her with an eviction notice. Furthermore, her building is subsidized housing and in order to qualify for the very low rent she pays, she has to recertify every year. She has put off her appt to do that for months now; if she doesn't do it asap, she will have to pay the fair-market rent starting June 1st. There is now way she can afford that, as it's more than 10 times what she pays now.

I am relieved that this matter is now out of my hands, but scared of what's going to go down. I tried to warn my mother about all this, but she insists I am making it up. (She's not demented in the traditional sense, btw, but her denial and inability to cope are off the charts.) If a SW comes up and tries to offer her services, she will totally refuse. I don't think they can actually haul her out of the apartment, though, can they?

Ugh. I'm so sad and yet so angry because she refuses all help, including mine, and won't let anyone up to her apt because it's in such a bad state. But I guess she has made a choice by not letting anyone help her clean, bathe, etc.
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Xinaness...my heart goes out to you...i just recently realized i have not woken up for four years about just knowing my mom is fine...im always worried about her.....wishing u the best
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She's clearly still able to convince discharge that she's competent enough to live on her own, and thus to sign herself out of a facility.

Yes, call APS next time she's hospitalized, and point out to all and sundry that she cancelled home care the last time. When the time comes for her to be discharged, be unavailable. Sometimes, what we think of as helpful is just enabling.

Rainmom mentioned the geriatric psychiatrist, that might be a route to try, if she'll go.

Ultimately, seek help for yourself in dealing with this insoluable problem. Be assured it's of your mother's making, not yours.
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Yes, you're right I'm afraid Windyridge. I only wish last time she was in the hospital more could have been done, but, again, she passed all their tests with flying colors--cognitive, physical, etc--so they discharged her and, after a few months of being compliant (at least in terms of letting her cleaning lady come so things didn't get out of control), she is back to where she was. It's just so hard to do NOTHING. One time I showed up unannounced in her lobby with bags of Depends and stuff she needed, and she came downstairs, got really mad at me, too the bag, but wouldn't let me upstairs. So infuriating. I am going on vacation in a few weeks and am worried about leaving her, but then even when I'm there (I live and work nearby) she won't let me up, so what's the diff? Anyway, thanks for helping me process this--it's important to me to let it out to people who get it.
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I'm hesitant to be so blunt but here it is: you can't force her to do anything. She does not have dementia so legal means are no help. You can't even go see her unless the doorman rings you up. I think it will take a crisis involving the police, EMTs or APS to change this. The change has to be getting her to a place where she is accessable to help and assistance. I don't see any other solution.
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With regard to mom's frcal incontinence, it came down to the fact that she was misusing both a fiber additive and immodium. Any time she had "diarrhea " meaning one loose stool, she'd start taking immodium, causing constipation. So she ended up with hard stoll in front, liquiud behind, and any time we went out, there would be an "oops" moment and we'd have to go home. I wonder if that's not why your mom is cancelling appointments. Anyway, she ended up in the hospital after a brief AL stay after they gave her prune juice. This caused all hell to break loose in her insides and for whatever reason, she passed out, got taken to the hospital and they were able to straighten her system out.

After that, we got her to a nice Independent living facility, where the on site doc was a wise geriatrician who was able to discern that most of her issues were driven by anxirty and fear. He also "got" her generational fear of diarrhea - something people died of when she was young. He referred her to a geriatric psychiatrist. Anti anxity and anti depressant meds have made a huge difference in my mom's life.
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You mention that your Mom is " definitely depressed and drinks a lot too, which doesn't help". I assume the "drinks a lot too" refers to alcohol. If so, have you considered that your Mom may be an alcoholic? Maybe your Mom doesn't go to her appointments because she is intoxicated or maybe because her doctors know about her drinking and have told her she needs to stop, which she doesn't want to or can't. The messiness and the fecal incontinence can be seen in some alcoholics. Alcoholism in the elderly is not an unheard of problem, just a well hidden problem. Often times family members don't even know that their loved one drinks, or how much. Many times the family first becomes aware of it when Grandpa gets admitted to the hospital for something and after there for a couple days without his alcohol he goes through alcohol withdrawal. Not pleasant for him, family or staff. I'm not saying this is your Moms' problem, but it might be something you want to consider. There is an old saying if a man tells you he has three drinks a day double it and you're closer to right. I hope you get things resolved, sounds like you really care about your Mom.
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Windyridge, she gets booze delivered as well as food. She lives in NYC, so that's easy to do and obviously she lets the delivery people come upstairs, just not anyone else. She's an alcoholic and in fact has overall done a lot less drinking lately than when she was younger. But then she'll go through phases of drinking and I have no idea how much.
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btw, babalou, what was the treatment for your mother's FI? I think my mom's sphincter is shot, but, again, she won't go to the gastro doc, so she'll never get help for it. She actually canceled her mastectomy surgery the first time if you can believe it. Just called that morning and canceled on the surgeon. Finally she let her friend take her. But the canceling is just MADNESS. I have no idea if she's taking the proper medications, getting them refilled, etc. I guess this is her choice, really. She was never like this in the past--always went to drs, complied with surgery, treatments, etc.
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You mentioned drinking. How much is she drinking, and how does she get the booze? Her reasoning is clearly not good, dementia or not. I have to wonder how much of this is the drinking.

My Mom is 85, doesn't have dementia but her reasoning has become marginal at best. I've had to begin dealing with her like I do my Dad who has dementia. I don't have to be as tricky with her as I am with Dad but I find myself trying to come up with ways to keep her on track.
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Thank you Eyerishlass. I have truly done everything to try to help her -heart to heart talks, trying to reason with her, threats, offers to help with anything and everything. When she fell and was in the hospital, that's when I should have called APS to look at her apartment, but I didn't think of doing that. I talked to the SW at the hospital, who was useless and only focused on discharging her to a rehab place so that the hospital wouldn't be liable. Lots of resources were put into place by the rehab--help at home, physical therapy, etc. My mom refused ALL of it. Canceled every time someone was supposed to come.

Ugh. It's just a nightmare. I so very much want to step back, but I really don't know how. I am so close/enmeshed with my mom and I love her to pieces even though she's been so difficult. I desperately wish I had siblings to share this burden with, but I don't.
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I think I was writing when you ladies were posting.

I agree with Babalou. A little tough love might be in order. If for no other reason than to know that you're trying everything.

I also agree that you may have to wait for that emergency. I had to do that with my mom. She dug in her heels and refused everything and everyone. I knew her health wasn't good so I just waited for the call from my dad that she had fallen. Sure enough, it came. I took that opportunity to get her to the ER and then sought out a social worker.

Sometimes there's nothing we can do. I had that heart to heart talk with my mom. I cried. I begged and pleaded. I threatened. I got angry. Nothing worked. It wasn't until she fell and was taken to the hospital that I could swoop in with resources she had previously refused.
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Xina; I'm so sorry that you're dealing with this. You're right, things are going to get worse before they get better.

Someone who posts here frequently (Frequent Flyer) has gone through this for the past few years. Her mom was in steadfast denial that there was nothing they needed significant help with in their 3 story home. Her mom finally fell, died from her injuries. He dad is now happy as a clam in Independent Living.

One phrase I have used in the past on my mom when she digs her heels in...:"you're too smart to do something this stupid". My mom, too, thought that nothing could be done about her fecal incontinence. She was wrong. It sounds as though your mother's is more complex.

Women of our mom's generation don't like to talk about "those things" to anyone, even doctors. They were apparently raised with a great deal of shame around poop.

I think in your shoes, I say to mom; "I'm sorry that you're not willing to accept my help with these issues, the way you helped me to grow up. But it's really upsetting to me to see you living like this, so at least for right now, for my own sanity, I'm going to have to step away from this situation. Call me when you are willing to be a little more flexible and realistic about your needs".
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Babalou has good suggestions.

From what you wrote it sounds like your mom has had a very tough year. Have you considered that your mom might be experiencing depression? Letting the housework go, cancelling appointments....maybe it's all been just too much for her and she's become depressed.

After my mom's cancer treatment she went into a depression that she never came out of. And like you, it affected me terribly. I didn't know what to do or who to turn to.

Have you tried talking to your mom about how she's feeling? Sitting down with her and having a heart to heart talk? Admit that you don't know how to help her. Admit that it's very frustrating when she won't let you help her, that it just makes things harder when she doesn't accept help.

I've known so many elderly people who don't want to burden anyone and in not wanting to burden anyone it places a heavier burden on everyone.

I'm glad you vented. This is the perfect place for it.
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Thanks Babalou, but the problem is that her building is like Ft Knox. There is a person at the front desk who calls upstairs. If my mom says not to let someone up, they don't. They have to buzz you through a door to get to the elevators. There is no way to get to her apt door otherwise.

Also, I HAVE offered to go with my mom to appts. She will not allow that. She keeps saying she is fine going on her own, but then she doesn't go. She is desperately clinging to the idea that she is independent and in control. When she fell and fractured her back over the summer, she refused any help until finally we called EMS and had the building break into her apt. It's CRAZY, her denial. She is definitely depressed and drinks a lot too, which doesn't help. It's killing me. I feel like I have no control and I wish I could just accept that and let the sh*t hit the fan. I'm trying to protect myself from having to cope with a total mess when it does.
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Hmmm. Just read one of your previous posts. Next time you call APS, meet them in the lobby and accompany them upstairs. Do not clean up.

I know, you don't want mom to know that you called them. When I have to do these hard things, I remember that my parents did things for me that I didn't want when I was little. Vaccinations. School. Homework. I'm returning the favor by doing what Mom NEEDS, not what she wants.
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Maybe she doesn't have dementia, but perhaps she has Mild Cognitive Impairment. Impaired judgment, trouble doing things that require sequencing and higher order thought. How about YOU make the appointments, pick her up and accompany her. Have you tried that; it might be worth a shot.

At the very least, write to each of her doctors (return receipt requested) and point out to them her pattern of cancelling appointments; request that they help you help her get the required medical care. That may be her doctor ordering a visiting nurse to draw blood, take vitals, etc.
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