If you know anything about CKD and Peripheral Artery Disease, please step inside. MIL has it.

[Faith-manor]

So MIL has chronic kidney disease. This had been going on for years, each year losing a bit more function because she refuses to treat it or watch her diet in any way. She got it from a drug she took quite a long while back that was eventually recalled. It caused the beginning kidney damage.

She is literally unwilling to do anything about dietary control. She refused to see a nephrologist for years. She is now stage 3b (GR of 36), and says when she hits stage 4 she will not do dialysis and allow nature to take its course.

Three months ago two toes on her right foot turned a bit dusky. At first she refused to do anything about it, then she finally went to her GP who ordered an ultrasound, and then for three weeks she refused to make an appointment with the GP to find out the results. We finally goaded her into going, he referred her to a vascular surgeon who did some sort of treadmill test, and P.A.D. was the diagnosis. He put her on aspirin. She just now has an appointment for the first time with a nephrologist.

The big issue here is she is stubborn as a mule about "change", and 75% percent deaf even with hearing aids. She refuses to allow anyone to go with her to her appointments, and given how bizarre conversations are with her because she misses so much, we are darn certain she just nods her head and goes along making them think she has heard what they say when she really doesn't. For all we know the surgeon said, " Holy Bonkers! You need surgery ASAP!" And she just nodded and left. And when I say she refuses to have anyone along, she literally pitches a fit if someone suggests it. So dementia or at least altered mental status could be at play here. She has refused a P.O.A. for years, and because of HIPPA her docs cannot talk to dh or his brother because she refuses to put anyone on the list.

Therefore, our assumption is that she is doing to kill herself by inaction. We have no idea what to expect, and are helpless to stop it.

What are the last few months with these conditions like? Should we be making funeral arrangements now, talking to her about hospice, if she goes to stage 4 CKD and doesn't do dialysis, can she be cared for at home, is death fairly quick, is the pain bad? P.a.d. from what I have read can cause massive stroke or coronary. So that could be the thing which might be preferable to suffering with the kidneys. We both feel very much in the dark and unprepared.

I had lunch with her today and watched chow down on scalloped potatoes, baked beans slathered in molasses, huge hunks of ham, and a large glass of orange juice and all of that is bad bad bad for someone with renal disease so I feel like she is a ticking time bomb. Sigh.

She is 84.5. I totally respect her right to choose no treatment though I do feel something is very wrong with her since there have been, well, not personality changes per season, but personality on steroids explosion if that makes sense. I just would like to feel more prepared.

[fraidycat]

I'm sorry you are having to deal with this and trying to prepare with very little information. 
I really have no idea about the medical stuff, but I wanted to offer you some virtual support.

[Alicia64]

I'm sending virtual support too. I'm so sorry. Is there a reason she wants to check out? Or has she always acted like this about doctors?

My dad is 80 and my mom is 77. Both with serious health issues. They're stubborn and won't listen to the kids at all. You're not alone.

I hope you get some answers.

[prairiewindmomma]

Are you able to go with her to the nephrologist? I think that'd be the best way to manage the questions that you have.  It's complicated, and there are a lot of ways it can play out---stokes, heart attacks and the like are just as in the range of possible as anemia, loss of appetite, depression and a slow decline through infections and organ shutdown.

Peripheral artery disease is just the narrowing of arteries in the legs and elsewhere. The aspirin is meant to act as a thinner to try to prevent clots.  One of my questions is whether the PAD is secondary to the kidney disease....probably all related.

If those are her wishes, then I think when you hit the nephrology appointment, you have a talk about how it will play out and come up with a game plan.  It may be enough of a shock to her system to push her to act, and it may not be. I'd certainly be getting all of the DNR paperwork and other stuff together so that everyone is on the same page and on board. 

We brought hospice on board with my grandmother when her dementia made not-treating a kindness. She went quietly, without pain.  We specifically used hospice so that we were doing the palliative care end of things but avoiding the treatment things.

 

[Catwoman]

Sending hugs and sympathy — especially to your dh, because he must be feeling so helpless right now.

[Faith-manor]

2 hours ago, fraidycat said:

I'm sorry you are having to deal with this and trying to prepare with very little information. 
I really have no idea about the medical stuff, but I wanted to offer you some virtual support.

Thank you! I really appreciate that!

[Faith-manor]

1 hour ago, prairiewindmomma said:

Are you able to go with her to the nephrologist? I think that'd be the best way to manage the questions that you have.  It's complicated, and there are a lot of ways it can play out---stokes, heart attacks and the like are just as in the range of possible as anemia, loss of appetite, depression and a slow decline through infections and organ shutdown.

Peripheral artery disease is just the narrowing of arteries in the legs and elsewhere. The aspirin is meant to act as a thinner to try to prevent clots.  One of my questions is whether the PAD is secondary to the kidney disease....probably all related.

If those are her wishes, then I think when you hit the nephrology appointment, you have a talk about how it will play out and come up with a game plan.  It may be enough of a shock to her system to push her to act, and it may not be. I'd certainly be getting all of the DNR paperwork and other stuff together so that everyone is on the same page and on board. 

We brought hospice on board with my grandmother when her dementia made not-treating a kindness. She went quietly, without pain.  We specifically used hospice so that we were doing the palliative care end of things but avoiding the treatment things.

 

She won't allow anyone with her at her appointments, and she refuses to sign a POA. We have been trying to get paperwork in order for years in case something happens, and she simply digs her heels in. I might call hospice and see if they have someone I could talk to about it in general. Without more specifics, my guess is they won't be able to tell me much, but at least they could tell us about what they will do when the time comes.

[Faith-manor]

23 minutes ago, Catwoman said:

Sending hugs and sympathy — especially to your dh, because he must be feeling so helpless right now.

He is! Today is his birthday. He was doing well until she kept calling him by his brother's name all day long. She should not be alone at these medical appointments, but the offices say they cannot do anything about it.

[MooCow]

My mom quit dialysis. She passed on about a week after she quit dialysis. She was in the hospital for the last 3 days and passed literally 30 mins. before I got there. I was told from her nephrologist that is was not painful. Apparently he and my mom had an understanding for when she was done. I am so sorry you are going through this. I'll be praying for your family.

[DoraBora]

I don't know much about either of these conditions, but you or your dh could call her doctor's office(s) and ask to speak to the nurse.  Her provider can't tell you anything about your MIL, but they can listen.  You can tell them about the personality changes, the stubbornness, and the deafness.  I feel sure they've seen it all before. 

It would be awesome if her docs would be willing to give her a written treatment plan or suggestions (because she has hearing loss), along with information about her likely future if she refuses treatment (pamphlets? print-outs?).  Then she will at least be informed.

I meant to add that I'm very sorry.  I have found caring for my mother to be the hardest thing I've ever done.

Edited June 16, 2021 by DoraBora

[Faith-manor]

27 minutes ago, DoraBora said:

I don't know much about either of these conditions, but you or your dh could call her doctor's office(s) and ask to speak to the nurse.  Her provider can't tell you anything about your MIL, but they can listen.  You can tell them about the personality changes, the stubbornness, and the deafness.  I feel sure they've seen it all before. 

It would be awesome if her docs would be willing to give her a written treatment plan or suggestions (because she has hearing loss), along with information about her likely future if she refuses treatment (pamphlets? print-outs?).  Then she will at least be informed.

I meant to add that I'm very sorry.  I have found caring for my mother to be the hardest thing I've ever done.

Thank you! Maybe I will try to put a bug in their ear that a written plan is necessary.

[sassenach]

(((Hugs))) I have a FIL who is 80 with a million health issues, including CKD, PAD, Diabetes, congestive heart failure, and probably something else I'm forgetting.

CKD often progresses pretty slowly. I wouldn't anticipate anything immediately dramatic as far as its course. Over time, as her GFR goes down, she might retain fluid, which might make breathing harder. She might also get anemic. Dialysis is incredibly hard on a patient. At 85, I'm not surprised that she doesn't plan to do it. There are ways to support her with meds.  In time she will likely need BP meds, Epogen to stimulate her red blood cell production, and other meds. I don't think you're that close to CKD being end stage. To give you an idea, FIL's GFR is 27 and he only has one kidney- dialysis hasn't even been mentioned. PAD is super common in the elderly. I would just get her into a podiatrist on the regular to keep an eye on her feet. Does she have diabetes? These are both incredibly common with diabetes. 

TBH, the thing I would most anticipate in your shoes is the next steps in managing her dementia. Does she live with you? Have you and your dh thought about how to handle her increasing needs?

FWIW, my approach is to let FIL live. The only thing I nag him about is taking his meds. If I fill his pill box, he usually takes them. I also won't buy him diabetes unfriendly food (though I know he gets his hands on it at his senior apartment). Outside of that, I figure he's earned the right to live out his last years as he wishes. I bring him to his dr appointments and make sure we keep up with his various specialists. I don't go in the room with him. His doctors are content with maintaining status quo. He's an old guy with a lot going on. Nobody is expecting miracles. He could have 6 months or 10 years left in the tank- I have no idea. I've seen elderly folks with much more disease progress than him maintained for years and years in skilled nursing facilities. There's really no telling.

(((HUGS)))

[DoraBora]

One more thing.  You may want to suggest (to the doctors, to suggest to her?) a palliative care consult, which can be particularly helpful to people with chronic diseases.  She can still pursue curative treatments if she decides to (or not) while she is receiving it.  

[Melissa Louise]

Hmm..the kidney disease material we got from the hospital actually mentions choosing not to go on to dialysis as a valid choice some people make. Dialysis is HARD. I understand why people choose not to do it. Likewise, the diet is restrictive. I understand why an elderly person wouldn't stuck to it. 

From memory, death from stopping dialysis wasn't described as the worst way someone could go. Usually painless, over one to two weeks. The person slips into a type of coma. 

I don't know how it would happen if a person simply didn't start dialysis when they needed it. 

Look up your national kidney foundation - they will have information on what to expect. 

[Melissa Louise]

https://www.kidney.org/atoz/content/ifyouchoose

[DoraBora]

5 hours ago, Melissa Louise said:

Hmm..the kidney disease material we got from the hospital actually mentions choosing not to go on to dialysis as a valid choice some people make. Dialysis is HARD. I understand why people choose not to do it. Likewise, the diet is restrictive. I understand why an elderly person wouldn't stuck to it. 

From memory, death from stopping dialysis wasn't described as the worst way someone could go. Usually painless, over one to two weeks. The person slips into a type of coma. 

I don't know how it would happen if a person simply didn't start dialysis when they needed it. 

Look up your national kidney foundation - they will have information on what to expect. 

I have to run, but I wanted to say I agree with this, and I didn't mean to suggest above that Faith's MIL necessarily needs to pursue treatment.  I do think it's good for MIL to be informed and to have a plan, even if she doesn't want to be treated, so she can request comfort care.  She may not be able to face that, or even to understand it (if dementia has begun). 

I think it's wise to plan to stop all kinds of medical interventions when one reaches a certain age.  I want to name an age (75?  80?), but people get upset about that, and it is an individual choice.  This doesn't mean the person will die at that age, only that they will stop trying to extend life, often into their 90s.  And I don't mean that anyone should make a hard and fast or irrevocable no-treatment-for-you-once-you-turn-80 rule, but that we each should think about this stuff for ourselves.

My mom goes to all kinds of doctors and only one of them has ever suggested that she doesn't need to continue with cancer screenings and other tests, or that she only needs to come in if she's experiencing troublesome symptoms for more than a week.  She's nearly 85 and is increasingly troubled by memory issues.  I love her, and I'm not wishing for her to die soon.  Not at all.  It's just that I see no point in her extending her life by inserting a pacemaker (for instance) to extend her body's life while doing nothing to prevent her from sliding into dementia.

[Splash1]

Kidney disease can cause cognitive impairment, brain fog, trouble concentrating, forgetfulness, confusion, lack of mental clarity. I'll attach an article for you to read if interested, it is directed at a different disease but covers the effects of kidney disease on cognitive function that might be helpful.    https://www.ahusallianceaction.org/brain-fog-kidney-disease/

https://www.kidney-international.org/article/S0085-2538(15)56240-6/pdf

 

 

 

Edited June 16, 2021 by Splash1

[Faith-manor]

41 minutes ago, Splash1 said:

Kidney disease can cause cognitive impairment, brain fog, trouble concentrating, forgetfulness, confusion, lack of mental clarity. I'll attach an article for you to read if interested, it is directed at a different disease but covers the effects of kidney disease on cognitive function that might be helpful.    https://www.ahusallianceaction.org/brain-fog-kidney-disease/

 

 

Thank you! I am going to have dh read it with me.

[Faith-manor]

9 hours ago, sassenach said:

(((Hugs))) I have a FIL who is 80 with a million health issues, including CKD, PAD, Diabetes, congestive heart failure, and probably something else I'm forgetting.

CKD often progresses pretty slowly. I wouldn't anticipate anything immediately dramatic as far as its course. Over time, as her GFR goes down, she might retain fluid, which might make breathing harder. She might also get anemic. Dialysis is incredibly hard on a patient. At 85, I'm not surprised that she doesn't plan to do it. There are ways to support her with meds.  In time she will likely need BP meds, Epogen to stimulate her red blood cell production, and other meds. I don't think you're that close to CKD being end stage. To give you an idea, FIL's GFR is 27 and he only has one kidney- dialysis hasn't even been mentioned. PAD is super common in the elderly. I would just get her into a podiatrist on the regular to keep an eye on her feet. Does she have diabetes? These are both incredibly common with diabetes. 

TBH, the thing I would most anticipate in your shoes is the next steps in managing her dementia. Does she live with you? Have you and your dh thought about how to handle her increasing needs?

FWIW, my approach is to let FIL live. The only thing I nag him about is taking his meds. If I fill his pill box, he usually takes them. I also won't buy him diabetes unfriendly food (though I know he gets his hands on it at his senior apartment). Outside of that, I figure he's earned the right to live out his last years as he wishes. I bring him to his dr appointments and make sure we keep up with his various specialists. I don't go in the room with him. His doctors are content with maintaining status quo. He's an old guy with a lot going on. Nobody is expecting miracles. He could have 6 months or 10 years left in the tank- I have no idea. I've seen elderly folks with much more disease progress than him maintained for years and years in skilled nursing facilities. There's really no telling.

(((HUGS)))

This is very helpful.

She does not have diabetes. Her kidney issues were caused by damage from a prescription drug she took in the early 2000's which wad later recalled. She does take her BP med and aspirin because dh set up Alexa on high volume and it reminds her.

She does not live with us and refuses to allow anyone to live with her. We have taken the car keys away, something she could not get dh to budge on, and he told her that he could not in good conscience let her go out and kill someone with her vehicle. So sometimes I take her to the doctors sometimes one of her grandsons, sometimes my mom, or when schedules conflict, a hired driver. Dh is still working full time. She won't let anyone do more than drop her at the door of the office.

I totally agree with her choosing not to do dialysis when the time comes. I never meant to imply to anyone that it wasn't a legitimate choice. We just don't know what to expect, and do not feel she is fully informed on the topic. I will have dh check around the house and see if he can find any pamphlets from her health care providers. Maybe they have given her these things. She is pretty secretive. About the only thing we are well informed on is that she developed the habit ten years ago of taking her BP everyday and writing it on the calendar in her kitchen. So we know when it is under control, and when it is too high. Unfortunately, that doesn't translate to being able to do much with that information.

Her hearing is a massive issue. It makes it so hard to know if she really does have any kind of dementia or just confusion from missing so many pieces of conversations.

I can talk to him about restricting the groceries we will bring. But his brother, whom he is very close with, is against this. He believes that at her age and with her health problems she should just have what she wants. I can also respect that as well. The main thing is just feeling so in the dark about what to expect.

I do a ton for her. I am not, however a natural born care taker type person, and am medical averse, as in the very last human on the planet who should ever become a member of the medical community. So it is very anxiety producing to be in this position with two aging mothers whose issues fall squarely on me and no help. Dh is just too young to retire to care for her, and we need the medical insurance provided through his job. His brother lives in SC, his sister overseas. No help there. My brother lives two blocks away, but he refuses to do anything for my mom. He is a selfish jerk. My sister lives in France, and that is permanent. She comes home once every two years for three weeks at a time. My mom goes there every other year for a month and will continue to do so for as long as she can travel. It is all on me. I feel very overwhelmed and alone when it comes to this part of my life.

[sassenach]

I can feel the exhaustion coming through. I'm so sorry. You're in a really hard position. The hearing thing is rough. I INSIST that FIL put his hearing aids in before I bring him anywhere because it's exhausting to have to repeat myself and scream (and I still end up repeating and screaming, just slightly less so). 

I hope you know that it's not your job to bridge the gap between her and her medical care. What she eats and how well she cares for her body is still her responsibility. Horse to water and all that. I'll speak for myself- in my case that means that FIL might lose a foot one day because he does not take care of his diabetes and has terrible neuropathy. I will feel sad for him if he is forced into a skilled nursing facility because of this, but I won't feel responsible for the outcome. You get to have boundaries, too. You do not have to take on every consequence that she ends up with. 

Again, big hugs to you. This is not a fun stage of life.

[Melissa Louise]

I'm so sorry it is all on you. That sounds very hard 🙁

I wonder if you could reframe your responsibility for MIL with a focus on your boundaries, assuming she either dies suddenly, dies after an illness in hospital care, or needs nursing care during a longer decline - all of which are likely at her age regardless of her CKD or other illnesses. 

Because ultimately, she is entitled to choose medical inaction which may result in her death. She's also entitled to medical privacy, and does not need to share details about prognosis etc.*

Boundaries about what you will and won't do in any of the likely scenarios (and a plan for each) will help you step back from the anxiety of not-knowing, and the anxiety of MIL not doing as she should. 

*Subject to cognitive competency - but you know, even if I had responsibility for a person of 80+ for reasons of dementia or other cognitive deficits, I wouldn't worry about the diet or future dialysis. The cost-benefit is out of whack, the older you get.