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Hello, my MIL was recently diagnosed with Stage 4 kidney failure due to long term use of BP medications. She said that she was never aware that she was/is at high risk CKD and just thought a specialist was simply monitoring kidney function for 15 years (?). She is struggling with adhering to a renal diet. She talks a good "talk" on all she is going to do for her health, but continues to eat poorly. She has received renal diet cookbooks and guides, but doesn't read them. She has had rapid weight loss of 15-20 pounds in 3 weeks. I am not sure if this is due to the overwhelm and stress of her diagnosis or slow attempts to monitor her food choices. Her speech has become rapid and she is extremely fixated on various issues/topics. Minor home issues are spoken of as "a major tragedies." Her pallor is gray. She tells everyone she "feels great!", though she obviously looks ill. It's almost like she is in denial of her condition. Any thoughts?

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As with just about everything else, different people experience stage 4 kidney disease in different ways. My mom was in stage 4 for more than 3 years. We do not know how long she was in stage 4 before that. It was not something that the sister who did the doctor's appointments was told in specific terms. All we knew is that Mom went to her kidney doctor every 3 months. Although she did eventually die of the kidney failure, she did a lot of things in those final 3 years after we knew that she was in stage 4. This was something that none of her doctors seemed to take very seriously--or at least they never told any of us it was something to take seriously. There were so many things wrong with Mom that she simply took her medications and ate pretty much whatever she wanted to eat. The dietary advice given by the various specialists didn't sync up very well and she was not interested in following anyone else's idea of what she should eat, anyway. She lived to within a few months of her 97th birthday.

I think your MIL's sudden loss of weight and other symptoms are quite concerning, though I doubt very much that it would do much even if she could be persuaded to stick to a diet. Perhaps this is a time to do a few things for her or with her that will make her very happy. Her denial may be intended to spare other people's feelings or may be a way of simply avoiding the conversations concerning the end of life. If she doesn't want to talk about it, I would just try to talk about things that do interest her.

Sometimes the best comfort is not an overt effort at comfort, but a more subtle care in simply making the dying person feel good about themselves and their family. Even if it turns out that my guess of her nearness to the end of life is wrong, it will not be a bad thing to do a few things to make your MIL's life more pleasant for a few weeks. You certainly cannot argue with her if she is claiming to be fine.
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Sunnydayze Apr 24, 2022
I totally agree with your wise words. Thank you for your thoughtful post.
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Sunny,

When my dad was diagnosed with stage 4 kidney failure, the nephrologist scheduled an appointment with a dietitian.

We spent like 2.5 hours with her going over everything my dad liked to eat, how much of that he could have and things to avoid. She gave us lists of food that should be incorporated and completely avoided.

I got the impression that she knew he wasn't going to follow a strict diet, so let's get real about how to eat and get some improvement going on. She put him on supplements and made it clear which ones to avoid, as well.

It worked, his numbers improved, to early stage 3. He still got to eat his junk and frozen treats. He didn't feel overwhelmed with a total lifestyle change, that never would stick or even happen.

If I was you, I would contact her nephroligists office, find out if they have a dietician on staff or can refer one that specializes in kidney diets. Then go with her to make it clear she will NOT adhere to a strict diet.

Does she have a heart condition? That is usually what gives a gray pallor.

I would be happy that she is keeping a positive attitude, no matter what. I think quality trumps quantity every time and telling herself she feels great, probably does help her feel better.

Best of luck.
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bundleofjoy Apr 23, 2022
great answer! :)
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My first thought is "is everything in order".
Start with Advanced Directive. Who has it? What does she want? Does she clearly understand what the options are as far as when she needs dialysis? Does her physician discuss with her the option in the near future?
As an RN I saw many on renal dialysis. I recognize that the RNs in hospital see those who do have problems and those thriving are at home living their lives, but dialysis is difficult in ALL ways. I am 80. Since age 70 I have written things into my Advanced Directive as addendums that I would not accept. Dialysis is on that list. Doctors will tell you that this is a painful awful death, but it is not. And on hospice it is definitely not. I don't know your MIL age, but she may choose to go the dialysis route, and she may not; I just hope she has access to palliative consults and real choices.
Now as to the diet. She has the diet. She has to choose how closely she will adhere to it. It isn't an easy diet.
Now as to the uptick in anxiety? That is normal, and I think with this dire diagnosis you would yourself feel anxious and discombobulated. It is also possible that there are other things than renal condition going on or that the renal condition is playing some part in her over all health. If it isn't now, it may in near future as the major systems are very linked, heart, lungs, kidney in the health and wholeness of the body.
Do read up all you can on kidney disease. The cause the MD gives is a common one, but there are many causes. Blood pressure meds over time are hard on our kidneys, but the answer to that is that blood pressure itself, diabetes, many other things are lethal to the kidneys, so what choice really was there for medications when she needed them?
I wish you all the very best negotiating what Mom wants, what is best for her. Do make certain that her POA, Advanced Directive, Will and other instructions are all in place. I wish you all the very best. We do have members on Forum who TAKE dialysis and do really great, and I hope one in particular will weigh in with reassurance. There's a lot on your plates now and I am so glad your MIL has your support and your concern. It will be a GREAT help to her.
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Sunnydayze Apr 23, 2022
"Discombobulated" is the exact term to describe her behaviors. Currently, her bp is all over the place. She is 78. She is on multiple medications for various issues. She is my mother-in-law and I am limited in my ability to set up POA/Advanced Directives. She is still married to my father-in-law and he is competent, but I don't think he realizes how ill she is. Thank you so much for your wisdom and feedback.
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Hello there, my mother passed away from stage 5 kidney failure 5 months ago at age 76. She was in stage 3-4 for several years, saw a nufrologist regularly, but suffered from high BP, type 2 diabetes, and obesity, and stroke in 2019. She did not take care of her health for years, was not aware of her illnesses until me and my husband moved in with her to help. She recieved good care with us, then her stroke hit, and broken arm.. She then required a higher level of care, and went to live in an assisted living where she did well for a time.. Her GFR, dropped to 11 and we were told she would die without dialysis, but her dementia due to the stroke and toxin build up, would not make her a good candidate for dialysis, and the burden of treatment would outweigh the benefit. In other words, her condition was past the point of return. So, we decided to call in a hospice team to provide palliative and comfort care; they were wonderful with her! She rapidly lost 15 to 20 lbs in a few weeks, gray pallor, lots of swelling in the legs and face, confusion, delirium and some rapid speech. She went from walking, talking eating, and caring for herself to total care in the last two months of her life; could eat or drink anything either due to her throat dysphagia. Stage 4, can rapidly go to 5. So, please get her affairs in order and make some choices with her regarding her care. It sounds as though she may be scared of her terminal illness, and justifiably. See if your mom will talk to a social worker, therapist or pastor.. God bless you!
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Valligirl Apr 28, 2022
I read your reply and felt it was a genuine, simple, caring and helpful one. My mother is also in stage 5 of CKD, has cancer, heart issues, paralysed from stroke and not a good candidate for dialysis given all these issues. Its heartbreaking to choose 'no treatment', but it is what it is... even though i will miss her terrible one day, its better for her to be freed of her pains.... :'(
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I’m a renal patient. Had a transplant 2 years ago (I’m 48). I was only in stage 4 renal disease for about 6 months and my kidney function dropped drastically. I was gray and had no energy and felt sick. I want hungry. Had to start dialysis. I don’t know your MIL age or health otherwise, but it sounds to me like she’s entering renal failure. Sometimes people go into denial because this is a life or death moment and it’s really scary. Choices need to be made about treatment, and one has to realize that suddenly life might have a end button that is in sight. It may be time to just help her to be comfortable and get herself ready. If she wants to pursue treatment (ie dialysis) it could help her state of mind to remove the toxins from her system. It causes confusion too, and can make it hard to understand something that is already hard to understand. Good luck!
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PatienceSD Apr 26, 2022
Excellent answer. And so glad you got your kidney!
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Make sure she has her affairs in order: Estate planning, who can access her bank account when she is no longer able, and prepaid cremation/funeral done. Will. Advanced directives. Do it now before it's too late.
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Sunnydayze Apr 24, 2022
She is still married to my husband's father and he has taken care of those issues. Thank you.
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SunnyDaze, how is MIL today?

If her skin tone is still grey, I'd have her seen by someone.
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Sunnydayze Apr 24, 2022
Yes. I’m taking off work Wednesday to visit her and see if she can get an appointment. I am walking a thin line and must be careful with my approach.
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Take her to the ER. It sounds like she needs inpatient treatment pronto.
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I cared for my mom with stage 4 kidney failure so I understand your dilemma. Organ failure is a bitter pill to swallow. It is time to start explaining dialysis to her. She needs a finger O2 monitor, if her oxygen level continues to be under 90 she should have an oxygen tank near by.
Watch for swollen ankles, means she is not eliminating fluids.
Explain to her that if she follows her diet she might put off dialysis a little longer. She should be seeing a nephrologist. Dialysis is imperative to keep her alive. There are two types: hemodialysis where she goes in, gets hooked up to a machine that cleans her blood. And there is peritoneal dialysis which she can do at home. She is hooked up to a machine and a fluid goes into her abdominal cavity and filters through her peritoneal membrane. This type actually breaks down the membrane which will give her 2-3 years at best. Her diet doesn’t have to be as strict once she’s on dialysis though. Both of these require a tube be place in her permanently.
Her pallor says she’s not getting enough O2. Robing her kidneys of much needed oxygenated blood. She needs a caregiver who is knowledgeable about kidney failure, (start using this term so she will grasp the severity of her condition) and who can cook her meals, monitor her BP and hook her up to machine or take her for hemodialysis. She need not be a RN (I’m not) but she needs to be able to learn. Potassium is her enemy. If she isn’t seeing a nephrologist it’s time to get in to see one ASAP.
She/he can order oxygen and talk to her about dialysis. She should not be left the responsibility to do this on her own if she has dementia. I was told at the dialysis clinic that her mind would be clearer once on dialysis but never saw that. My mom lived to be 91. Had a heart valve replaced at 89 which pushed into dialysis. Good luck and feel free to message me privately if you want more info. Learning diet menus I know well. Good luck.
Sabrina (Berry at gmail)
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This is a different slant. Your MIL is 78, so your FIL is probably not much older. You say “he is competent, but I don't think he realizes how ill she is”. MIL’s life expectancy is difficult to predict, but it may be short.

It may be time to talk about this seriously with FIL. Also, to consider what FIL will need if she does die quite soon. We have another poster whose FIL in similar circumstances moved in with the family for 3 days, and has become difficult to move out 3 months later. Worth a thought now, for everyone’s sake.
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Sunnydayze May 2, 2022
Thank you. Yes, we have talked to FIL.
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