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My mother in law has moved in with me with end stage renal disease and after a lot of agitation was taken off dialysis last week. I have to take care of Dad too who's even older. but the point is that my sister in law who has always sucked out everything from her mother and abandoned her when she was ill (mother in law has no insurance and a lot of money problems which her son, my husband, is grappling with) visited her yesterday and left her absolutely demented. she turned around on me and started abusing me (for keeping her alive) and is staying alive now purely due to a boiling fury against the world, her daughter, son in law and me. my husband is already losing weight with this strain and exhaustion from full work load. Mother in law refuses to listen to pastor or help, and i just don't know how to cope for the few days left. her body's gone but her will is keeping her alive though she says she wants to die.
how do i talk to her? i'm falling ill myself. any tips for staying calm - she's so pathetic but looks at me with such concentrated hatred, i can't even look at her let alone speak and take care. she's utterly helpless and cleaning her diapers has become a kind of crisis, she fights everything.

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Thoughts and prayers are definitely with you. I am so glad you found this site. It has been an immeasurable help to me over the last few months. I am sure you also will benefit from the experiences and information from other caregivers as I did. I hope you got some relief for your situation and that your MIL's anger abated. I know its so horrible to deal with and not take personally. It certainly takes a toll, but I think they're so terrified, confused & angry with what is happening to them that they just can't help striking out at the person closest. She probably doesn't hate you; you're just the only one who will/has to listen. Given pain and no control over anything that's happening to my body or mind I would probably be a caregiver's worst nightmare myself. I hope your SIL either took over the caregiving or left you alone at least.

My heart goes out to you and I hope things are easier now.
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Thanks to all of you! I know its your support that helping me get back to thinking and feeling, i've been like a zombie, reading posts has perked my day so much.
We're not in the US, kuli, so no hospice or nursing home. Even assisted living is at exorbitant prices, hiring from private agencies. As far as we know she doesn't have dementia, though toxins must surely be building up. she used to survive quite well with blood sugar values of 300+ (fasting) and 500+ many times. that's why the kidney failure. otherwise she's in no pain and perfectly 'healthy' heart, lungs, digestion... she knows very well what she's doing, though she will not accept that she's critically ill, consequently thinks I'm to blame for doctor's visits etc.
But now my sister in law is certainly 'caught' so to speak by her own and mil's responses, so mil's treatment and health is now not my responsibility. It should be such a huge relief, but strangely, i'm still not able to take it in - maybe it was so long since I thought it was possible to think of even being able to go out when I wanted to, I'm not yet relaxed. anyway its a matter of time. I most certainly don't want to wish anyone dead, but will be a new life soon I hope. The worst is that I keep thinking what will happen if something happens to my husband - we would all of us be completely devastated. i know this worry is useless, but he's feeling the strain too much, and he doesn't let up, eg., he doesn't even let me ask him what he's had for lunch at work and he's so bad about his own medicine at times because of a hectic schedule. he doesn't want to 'load' me either with his problems, he never did, so I don't know how to help him. any tips? or am I worrying unnecessarily because I don't know how not to worry any more?
hugs to all
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Toxins can build up in the body and brain without dialysis. Since she has lasted this long without dialysis she must have some kidney function left. While medical standards can vary, a creatinine level of 3.5 will get you an ESRD classification in the US. Some people's function drops quickly and others more slowly. If she was having trouble on dialysis as many do, she was probably glad to stop. But her decline could still take a while. Many die from potassium overload (causes heart problems) before kidney failure. You might not want to load her up with potassium or you might feel badly about that.
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kmartin - Could her dementia be getting worse due to the toxins building up in her body with no dialysis? As someone said earlier, if she's not being dialyzed, she won't last long. I know that doesn't make it easier for you or your husband but her behavior may no longer be under her control. I can't remember, is hospice involved? Kuli
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Agree with msdazy! You totally need to be taking care of yourself and your family. You all are the future and that is where your energy and concern should be.

Let the daughter and other family take care of MIL now. God bless!
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I'm sorry Kmartin..maybe its time for you to think about you now...don't waste another breath on her. I'll pray for you right now. Get some rest and take some time for you.
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Both my my father (84) and mil (only!!! 80) reject the idea of death utterly. mil cannot believe anything is wrong with her - in fact she thinks dialysis caused all her problems and now she can eat what she wants, she is healthy and will get well. she did the same with insulin, her diabetes is way way out of control and kidney failure is really self caused, her general health is nothing short of splendid. she eats more than any normal person and always wants more. this must be abnormality because she's just skin and bone, but anyway, her mind and will are controlling everything.
As to loving her, i just don't know if i can honestly say that. I dont know what i'm feeling really, mostly just numb, and dont care about anything at all anymore. how can I get back to positive feelings? too dispirited to see a doctor for myself, and everyone says just snap out of it- there's so much to be thankful for, I know that but everything is meaningless at times.
I even think she'll oulast me and husband who's really exhausted - he had a heart attack and a stroke and he needs to take care of himself, and my care too. my father's fine now, touch wood but he has multiple complications...
my son (19) too has some psychological problems, did so very badly in exams, and kind of shut of from reality. while he too is improving a lot he still needs very careful handling.
so sorry for the outburst, just feel so helpless, hopeless and desperate - this site has helped so much, I sure I wasn't so good a month back. thanks for all your comments, wishes and hugs, and hugs to all of you
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I bet when the end is near she will be wanting everyone near. I know the fear alone would change it for her. So please don't let her go without showing you are there for her..and love her. Even though she doesn't return it...she will need to hear it. God Bless you for enduring all of this with her.
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kmartin, if you MIL has been removed from dialysis, it will not be much longer. This is a special circumstance I would say buck up and bear it. Death is a very personal experience that only the dying person can go through. Just let your MIL know you love her no matter how mad she is at you.
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freshair76, thanks, this is what is so upsetting, she's just clammed up tight, refusing to talk refusing to hear anything even and just resisting everything that's done for her with all - and i mean all - her strength (she's pretty strong, though she can't walk). it 's a different life altogether to see someone glaring at you and know you're being cursed, even though its silent. I don't think its dementia or that she's not in her right mind because this is fairly typical behaviour but very much at a higher level. Thank God, my sister in law is helping, she's all smiles with her and helps not resists her.
kuli, thanks, that's what is happening now - doctors surprised she's surviving so long, but she's literally addicted to food and is living to eat. however she's not really living like a human being, though that sounds so terrible to say of someone, and may be I would be worse in her situation. Compared to many of the posts here, i'm really very comfortable!
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I meant if having only foods that would prolong their life ..... Sorry
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kmartin - All I can say is that when the hospital staff and doctors told my dad at 85 that he was borderline diabetic, I told them there was no way in he*l I was going to tell him he couldn't have his bowl of ice cream everynight. You really do have to weigh quality against quantity when they get to this stage. If having foods that are not allowed that would prolong their life, is it really worth depriving them of something they love? I said no in my dad's case. Filled his bowl with ice cream and topped it with whipped cream - the smile on his face told me it was the right thing to do. Good luck ~ Kuli
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I work as a hospice cna. There are so many emotions for the dieing person and their family to go through before death. It can be a time for families to heal past wounds make appologies and talk about happy memories. It can be a time of closeness. It isn't always easy for people to be open to the process. Anger is a really off putting emotion for most of us and anger is very common when dealing with death. This death is happening quickly and it must feel so out of control for everybody in the family. Then there is you the,(caring), in-law trying to hold it all together for everybody and being bruised by all that rage. Your mil and her family may need some help communicating with eachother. Maybe you Can find a more neutral,(less involved), than yourself to do that. Bless You!
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(((((((((((((hugs)))))))))))))) A long history of ill will is hard to deal with. I am sure you are doing all your can. You are a caring person.
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Thank you all, especially Jeanne for sharing so much, it helps so very much, though the decision is still mine and remains difficult. I have to say that while i'm still kind of dazed, my husband has reacted strongly- its tough for him, but he's taking very strong measures to make my sister in law take over - he too was so stunned at the hatred that came pouring out and this has to be stopped at all cost. there's a long history of ill will behind this. i hope i've done all i could. all your hugs and helpful thoughts and prayers have really had an effect. i hope i'll be able to say very soon that the problem is settling.
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kmartin, the diet thing is a very personal decision to make, and I send you hugs as you struggle with it. I don't think there is a "right" answer. I'll share what I did, but I don't mean it is what you should do.

My husband was a "foodie" (as am I). When we were dating he brought me things like a beef and corn casserole or apple cobbler instead of flowers. We entertained often, and our parties always involved food. We took cooking classes together. We remember vacations by the restaurants we discovered. In our everyday meals we watched salt intake and followed a heart healthy diet. After he developed dementia he had swallowing problems. Nine years ago he had a swallow test and was advised to have a feeding tube. Oh my goodness. No way was that going to happen. And he got by OK. This last summer, as additional problems developed he had another swallow test. The speech therapist advised a very restrictive diet to avoid aspirating. She was shocked when we agreed to practice the physical/mechanical advise but decided not to follow the diet. It is the patient's right to make decisions about quality of life. And, incidentally, both my husband's geriatrician and his world-renown dementia specialist supported the decision to ignore the diet restrictions.

So, in your situation kmartin, I would give the MIL exactly what she wants to eat. Her extreme reaction to the restrictions is a strong indication that this is a major quality-of-life issue for her. Following the diet isn't going to keep her alive, it is just interfering with the pleasure of what little time she has left. She is doing to die. There is no question of "murder" on your part.

BUT ... that is my take on the situation. You need to consult your own religious beliefs, philosophy about life and dying, and your conscience and do what you decide is best. Make your decision in love, and then don't feel guilty no matter what the outcome is. I am so very, very sorry that you have to make such a huge decision. Do your best. That is all any of us can do.
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ESRD is always fatal but it can take longer than expected. Diet is one factor. Without hospice I would try to employ one or two empathetic women who would make your patient the center of their universe for the time remaining. You are doing too much alone. This is difficult for you all. Our prayers are with you.
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just another question, please - as gerontologist wrote, MIL has limited time. one of the reasons why she's so furious with me is that I've followed doctor's orders and kept her on a strict diet and she complains i'm not feeding her. should i give in and give her what she wants, sugar and salt (her diabetes and BP are quite out of control already) or keep to her diet - i think i'm afraid i'll feel guilty as a murderess if i give the food she wants; but nothing's going to cure her anyway.... so what is best?
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Thanks to Jeanne and gerontologist. its just that after doing so much with so much love or at least care, to be met with resentment and rejection is such a shock. i'm still shaking inside. my sister in law will twist everything; so far i've been the one to take care in every emergency (many of them!) but all i've had is scorn and belittling comments especially from relatives. yes all i can do hold tight to my husband, there's no one like him, and he's not too fit physically either.
it does help to vent, but it is so difficult...
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kmartin, I am so sorry that hospice is not an option for you.

Your MIL is not in her right mind. Try not to take the looks of hatred personally. Do the best you can to provide for her needs. Consider it an act of mercy to be as kind and patient as you can with this poor dying woman. If it is more than you can handle, she may have to go to a hospital in spite of "refusing" to go. I hope you can keep her home, but you must take care of yourself and your husband (and your father).

Warm hugs to you.
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Call the doctor to order hospice and get those folks in place ASAP. They can assist in care and the social worker, nurse and pastor may not be able to help her, but they can provide you and your husband with support.
People with ESRD no longer receiving dialysis have a limited amount of time available. Once the body can no longer filter toxins, death is imminent and realitively quick. Having hospice there means she will be cared for and her pain will be managed. She may also need placement in a skilled facility to provide care for her in the weeks/days of her final care.
I'm sorry for how difficult this is for your family. Try to stay focused on each other and hold tight through the storm.
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Thanks Jeanne. We are not in the US- found this site after becoming desperate over last few months. I've lost everything, money, health, career, peace of mind. there's no hospice for home help but there's some kind of palliative care in the hospital to which she refuses to go. i don't think they'll do more than talk to us for a few moments anyway i'm tied at home now.
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Is MIL on hospice care? It may be kind of late, but they would be a comfort to you and your husband.
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