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I live 15 hours away from my mother who lives in her home. Sister moved in with her in the summer to care for her as she is completely immobile (since Sept 2016), needs help with everything (cannot stand, bear weight). Sister insists on keeping her at home, as this is what mom wants. I have visited but been warned that I cannot bring up certain topics (nursing home, dietary control in setting of poorly controlled diabetes). Their house is falling down, kitchen sink plumbing doesn't work (washing dishes in bathroom sink). They won't allow anyone in to fix these things; I have offered for years and I would pay the bill. My sister transfers my mom and I am so afraid that sis or mom (or both) will fall and get hurt. I am grateful for my sister who has cared for her but it is now taking a huge toll on both of them but they are so co-dependent on one another (and my mother might have some early dementia) that they are really a force to be reckoned with. Our family has never discussed anything difficult, we have just worked quietly through things on our own. Mom and sis think that things will just work out on their own. I am a professional with a very busy job and a family of my own. I had visited three times over the last year and stayed in her house, spent a lot of money on a lovely beachside vacation, mostly so my sister would have some respite (mom came too and so this was also a ton of work for my sister who is the only one my mom trusts to physically transfer her). My sister drops hints through texting me that she 'needs a break', 'needs to get away', 'needs some help' and complains that I 'used to come and visit'. My mom and I got into argument on vacation about her mobility and mom felt attacked by me; I was just trying to give my perspective. We find it difficult to 'agree to disagree' rather it is always perceived as a personal attack on one's character. Now my sister thinks I 'egged her on' purposefully (and says I admitted this to her) to make my mom mad and she states this 'has upset us both'. I know they criticize both my other sister and I and find fault in what we do and I fear this is just making their relationship even more dysfunctional.

I want to visit my mother because I don't want to be 'the sister that never visits' but I am so sad for the situation and feel so helpless when I see my sister needs help but can't get it for herself; she is waiting for my mom to ask for something different and this will never happen. My sister has no life, only works full time AND is the personal attendant for everything my mother needs (another full time job). Mom criticizes her if she stays out a little late (she's 42!) and then implies she is a burden to my sister. Things are a mess in the house and it is so hard to sit down without wanting to clean when I am there but there is no place to put anything. They are both hoarders; my sister buys things they cannot afford and they get piled higher and higher. She herself is in such a bad financial position (I have offered to pay for legal counseling-three times!-she has never taken me up on offer!). I fear for my sister's well-being and sanity (she's 10 years younger than me and has a lot of life ahead of her).

So perhaps other siblings that choose not to visit their elderly parents are in my situation. It might appear selfish on the one hand or perhaps we have tried to help where we can and we keep getting rejected?! I know they have it far more difficult than I do but I think there comes a time where you have to be realistic and care for yourself also. Are there others who have had this experience? And any advice about me going for a visit? I don't want them to dissect everything I say and do when all I want to do is just go to support. It is breaking my heart and I am grieving. I feel horrible when I don't want to go visit.

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@optimist1 - (((((big hugs))))) I'm sure it is much more difficult, with it being your childhood home! Our place of origin can be a very emotionally charged thing, it's where we became who we are. :-)

But also....sometimes ya just want to have a place to sit without getting dirt on your pants!

Here's something that might make it seem not so bad: be glad they are not animal hoarding! Because that is the WORST kind of mess. At work we had one set of tenants that had so many cats, they were using the only bathtub in the unit as a litter box! I still don't know what the people did to get clean....
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Thank you dorianne for your response. Just as I was writing, I thought perhaps I was catastrophizing and someone would post that there are indeed people who do this kind of work. Thank you for comforting me and reminding me not to get so overwhelmed by the situation. I am sure I am getting emotionally involved with the cleaning because this is where I grew up and seeing the house in shambles bothers me, and maybe more than it bothers my mother or sister, or they just cannot admit it. Thank you for all the support on this site. It is comforting to know we are not all alone, even though the work is difficult...
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@optimist1 - I just have to point out, although you say cleaning up/organizing would be too overwhelming for some stranger, there ARE people that do this for a living. Up until I injured my knee and pelvis at work, I was part of a team of 3 women who did rental property maintenance. We did (and they still do) literally EVERYTHING, from basic repairs to unit renovations to landscaping to, yes, cleaning out absolutely disgusting units after they were abandoned by tenants. There's very little that freaks me out anymore (except bed bugs, only because I fear bringing them home with me). There are also people who specialize in dealing with hoarding without judgement. I guarantee there is someone out there who could handle going into your mother's house and making it whole again. I know that getting your mother and sister to let anyone in is 9/10ths of the battle, but don't let the other 1/10th be you believing no one could deal with this.

The only way I got my mom to accept home support was to tell her they were coming for ME, to give ME a break. I also told her the purpose of home support was to keep her OUT of a home. Both of these things are true.

If you are still interested in pursuing this avenue, then it seems to me you will need to first persuade your sister that you want to hire some help for HER, to make HER job easier. She needs to understand that the purpose of home help is to keep mom OUT of a home. These two things are important, because she is the one who has the most power to persuade mom, or even override mom, if need be.

It may be that your sister is feeling like caring for mom is her purpose in life right now, especially if other aspects of her life have gone down the toilet (like her finances). The thing about someone with a cause is you don't want to threaten the cause, because threatening a cause makes its believers more self-righteous. So I think the tactic would be to persuade her that you want to hire help as her assistants in this cause, rather than as people who will take over her job. Put them under her command. Maybe make the idea of home support seem like a conspiracy against the system of putting old people in care homes. Then you make yourself part of the team of "me and mom against the world," instead of seeming like someone trying to disrupt it.

Just my thoughts. Sorry if they aren't coherent. I am starting to get a cold and I just woke up from a nap all bleary-headed.
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I agree with the “live and let live” suggestion, to a point. However, although you say Sis takes good care of Mom, it’s not a safe situation. Rancid food can draw bugs and other vermin. Piled up boxes and trash can do the same. I’ve heard stories of piled up boxes toppling over and killing someone. It’s also a trip hazard.

Sis says she’s worn out and needs a break. I know in the days I feel like that, my husband’s care suffers. I know exactly how she feels. I am in the same situation, but there is no one to bail me out.

I can say however, that if I had tried everything I knew in a situation that was that unhealthy for my family, I would stop beating my head against a wall and say, “Ok. Let me know if there’s anything I can do.”
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Your sister needs to own her choices, she doesn't get to refuse help and then mutter about how she has to do it all alone. I was once my mom's preferred caregiver, she didn't even want my sister to spoon feed her let alone transfer her, but she did allow agency caregivers to do those things because she wasn't given a choice. Your mom and sis are digging in their heels and making choices that make the likelihood of a crisis forcing drastic changes greater, unfortunately you are powerless to do anything but prepare yourself to pick up the pieces. Not your circus...
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[mutters to self] ... what about hiring some 'guys' to go round there and put sister out of action for a while...

You are right to respect their decision - I respect that you respect it. But I'll tell you what. If we get a new mystery forum member any time soon complaining that she was forced to move into this trailer and there is no way out for her and her sister doesn't lift a finger to help...

Though actually. What *about* suggesting this forum to your sister?

I'd suggest being more Zen about the do nothing option, if only it weren't quite so bound to happen that at this rate sister will crash and burn. At which point, you being as concerned as you really are, I doubt if you will find saying 'told you so' much consolation.
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Thank you all for your support and advice. I would not call APS. My sister cares well for my mother but needs all of her own physical strength to get her up off the couch into wheelchair and then to toilet. Mom cannot help in any way with this. We have considered having me 'practice' transfers but it never happens; mom is just too scared to fall (and even verbalizes this when my sister transfers her-and shouts occasionally). My mom has scraped her knees on the wheelchair because she cannot physically assist with her own transfers. And from what I understand from this forum, expecting a similar-weight individual to transfer another person alone is an invitation for an accident.  Even if it were safe, there is no room in the house for any type of lift device such as Hoyer lift.

She would never allow anyone in to assist her personally (too scared she will be taken advantage of) or even have a stranger in the home to help clean up, and it would be too overwhelming for that individual; I have cleaned a number of times and there is just no room to put anything (unforgotten food found under other piles of stuff, etc). Yes, I think my sister might have a hard time herself knowing where to start but this is part of her DNA to just not address issues when they come up.  This is such ancient history because my mother always wanted the house maintained her way.  My grandmother kept her house 'like a museum' and my mother was going to do everything she could to not be like her mother.  Thus, necessary home maintenance just hasn't occurred for years despite my continued offers to have this done ('oh, they have to come into the house to measure for a new bathtub-ridiculous. I don't want one').  

I'd pay for respite in a second (ideally having mom get outside the house for a few days and would even stay with her so my sister could get away) but if I suggested it, my sister would think I am plotting to get mom to a nursing home for good. Even though I would have this discussion away from my mom, my sister would tell her of my offer and this would get mom worked up. This is the way it always happens, and it creates great animosity amongst us. My sister is slowly cutting me out (or is feeling so overwhelmed that she cannot communicate with me). She's so busy and can't talk on the phone and now rarely texts me. I have told her repeatedly I am here for her for anything that she needs; she knows mom best and should let me know when I can step in and do something meaningful. She finds it difficult to ask and won't come right out and tell me when she wants or needs me to visit but will then drop hints about it ('I'm not feeling well'). I don't want to keep harping on her offering her help. I respect my mom and sister's decision to keep her in her home and, aside from the transfer issue, feel my mom receives good care from my sister. It's difficult if not impossible to reach out to my mom as she rarely answers her phone (TV too loud, she's sleeping, she cannot figure out how to answer the phone). I know she feels so isolated.
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Hm. Things may work out on their own. Your sister may become one of the sizeable minority of caregivers who die before the person they look after.

I can't overstate how sympathetic I am towards the frustration and worry you must feel over this.

The only thing I can think of you may already have tried. Could you send your sister right away somewhere for respite, hold your nose, stay in your mother's house with her for two weeks - hiring in as much in the way of personal care assistance as you think necessary - and see if you can bring any pressure to bear from there?

It's just that if you want to effect any radical change you'll have to get right in there, harden your nose, set your face and be prepared to be unpopular - a kind of "let them hate me so long as they obey me" approach. But nothing is worse than wanting to help and being prevented from doing so *and* then accused of not getting involved.
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You mention sister works full time and is your mother's only caregiver, how does your mother cope while sis is at work? Even if she is fully cognizant she is physically unable to get meals, use the bathroom (or change her depends), or get out of the house in an emergency. To me that's scary, and totally irresponsible. The key to making this better is to get both of them to accept outside help, I would focus on exploring practical options for making life more bearable for your sister and safe for your mom; a weekly/monthly cleaning service, home care and bath aides for your mom, meals on wheels, para transit options that can get your mom out to... whatever, maybe even getting mom out to a seniors centre or adult day care. We are lucky that today it is possible to find info on line and by telephone so you can compile a detailed list of practical options to keep with you when sister asks for respite, right down to contact names and costs involved. And remember, just because your sister has chosen to be a hands on caregiver and you have not doesn't make her the better daughter.
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Before you decide to follow the advice to call APS, I urge you to take a step back and assess which parts of this situation are negatively affecting your mother. I tend to take a "live and let live" approach to other people's lifestyles, so I suggest asking yourself these questions:

Is your mother happy with the situation she is in, or does she want a change?

Are your sister's financial and shopping issues affecting your mother's personal finances in any way?

Is your mother clean and cared for (keeping in mind that many dementia patients refuse to bathe or change clothes)?

Are the spaces your mother occupies reasonably clean, if not to your standards (keeping in mind that "clean" and "not cluttered" are not the same thing)?

Are your mother's medications being administered appropriately?

Is your mother being abused or neglected in any way?

If you are satisfied with your answers, then I really urge you not to call APS. Because once you do, you'll be "the one that reported her own mother/sister," and it will have a huge impact on your family relationships.

The thing about your sister is....she is an adult and she's made her choice to look after mom. Unless she's said straight up she wants out of this situation but doesn't know how to walk away, there isn't anything you can do about it. And I'm saying that as someone who also made her own choice to look after mom. I have shared POA with my brother. If I said the word to him, he would back me up totally in getting her into a care facility. But this is what mom wants, and I'm going to do it until the day I can't, or until the day she dies, whichever comes first. It's my choice. You have to let your sister make her own choice here, even if you don't agree with it.

That said, I think your mom and sister are not letting anyone in to fix the house because they are embarrassed by the chaos. They can't deal with the chaos themselves - your mom is incapacitated, and your sister either doesn't mind it, or doesn't know how to start (which is a common response to being overwhelmed). Meanwhile, you have a right to visit your mom, but you are grossed out by the mess. I'm afraid that means you're going to have to be the one to deal with it, if you want to visit.

Your sister is asking for help and a break - I suggest giving it to her. Send her on a vacation by herself if you can, and provide the respite care while she is away. Then just do it. Clean it, organize it, fix it, whatever needs to be done.  Hire someone if you need to. It's your mother's house, not your sister's, and your mother doesn't have the physical ability to stop you.

My family used to be the kind that left everyone to work things out on their own too. Then my stepmom came along. She taught me that sometimes in families (and in life), you just have to be the leader and take charge, because no one else is, and don't apologize for doing what needs to be done. It's a little ironic that my stepmom's lessons are the ones I'm using on my mom now, but it's true!  I've had to bring friends in to help me fix/clean/organize things behind her back (usually while she is at dialysis) because she would protest and refuse permission otherwise (only *I* am apparently allowed to see her imperfections!)....but she's never once complained about things being fixed, cleaned or organized after it's done (not even when she realized somebody else saw the damage). 

I'm a firm believer that the home is a representation of the self, of the family. Your mother's house is a mess. She is sick and not in her right mind anymore - she is no longer the leader. Your sister is not showing any leadership potential. Tag, you're the leader now, if you want to be. ;-)
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optimist1, many times we need to wait for a serious medical emergency to happen before we can do anything to make our parent be in a safer environment, and to help relieve that siblings who is doing all the heavy lifting by choice.

You should visit.... ask Mom or your sister what can you do around the house while you are there. Don't say anything about the condition of the house, even though you feel like screaming "how can you live this way?" or Mom's health unless Mom brings it up, and just follow her lead. If she asks for help, then that opens the door for you. Get carry-out from a local restaurant [skip fast-food unless that is something both your Mom and sister love].

I remember visiting my father-in-law's home out in the middle of no where. Pot belly stove to heat the house, no rugs on the old wooden floors that had holes with old socks stuck in, broken windows, and the bathroom was the out building out back. Oh fun. Hubby and I looked at it as an adventure. The family loved seeing us "we were the wife and son from the big city" :) The conversations had us laughing big time, and that was most important.
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I think you’ve done about all you can. If I knew of anyone in a hoarding situation like this, I would call the local Adult Protective Services and report their situation. This is something that needs help from outside the family. You don’t need your family’s permission to do so, but I would tell your sister.
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