MIL with stage 4 kidney disease seems like she is in denial of her condition. Any thoughts?
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?
Is she on dialysis, if not why not. If those toxins are not cleaned out of the bloodstream, she will die.
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.
that doesn't sound good. maybe you can get a 2nd opinion from another doctor what to do, if you feel the current doctor's not doing a good job. hug!! when my LO was very pale (happened only once, 1 day), it was serious. ER. miraculously recovered. but also - please be careful: sometimes you go to the hospital with 1 problem, and come out with 10 new problems. hospitals/doctors/nurses make mistakes.
from now on, we'll use our private doctors as much as possible (home visits). we'll try to avoid hospitals, if possible.
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.
Would she, do you think, want to consider/be a candidate for dialysis?
Someone's watching her heart function, yes?
A good book, “Being Mortal, Medicine and What Matters in the End” by Atul Gawande might guide you a bit on next steps with MIL. It helps you support her decisions about what is important to her as she goes through changes in her health and care at the end of life. You may have read as it is mentioned fairly often here on the forum.
One of my nieces just lost her MIL, 76. She had been going to doctors for several different issues, all sounded serious enough but manageable. Three weeks ago she was diagnosed with Leukemia, put on a ventilator?? Taken off. after several blood transfusions. died less than two weeks later. Her three sons were shocked. My niece drove her to several appointments over the last few months but didn’t interact with doctors. Her MIL was driving herself for routine errands and living alone. She may not have felt “great” but she wasn’t complaining.
Three months is a long time for someone who sounds as ill as your MIL.
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.
If her skin tone is still grey, I'd have her seen by someone.
I can’t imagine going from believing you’re healthy to stage 4 renal failure with three horrid options: death, dialysis or transplant.
Your MIL is rightfully overwhelmed. Her situation IS overwhelming. Maybe your best approach is to try to listen and love more and fix less.
🙏 ☘️ 💜
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)
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.