MIL is driving us CRAZY!!!

[MrsFishy]

Ugh!  MIL is 84 and has become quite the handful. When her kidneys crashed and she had to go on dialysis, we explained to her that it was HER choice of what she wanted to do. We explained that she didn't HAVE to do the treatments but that if she didn't, she had very little time left to live. If she did want to do them, it would involve going to the hospital 3x a week for 3 hour treatments and we would need to drastically change her diet and she'd have to quit smoking. She agreed and said she wanted to do dialysis but has been very uncooperative and sneaky and deceitful all along but is getting worse. Her favorite foods were tomatoes, peaches, pizza, ham and turkey sandwiches, chocolate, and LOTS of coffee and milk. :/ So, you can imagine how this is going!

She's been sneaking more coffee than she is allowed and having 6 cups a day instead of 2! She sneaks milk so we have to now just deliver her 8 oz. of milk each day. She gets very angry when she asks for things she can't have and we explain they are way too unhealthy for her and when we do let her have some foods she likes that are technically too high in phosphorous, she refuses to take her binders.  We are becoming so incredibly worn down and just don't understand why she even wants to keep doing the dialysis when she hates it so bad ON TOP OF hating all of then dietary restrictions that go with it.  We honestly don't know if we should just stop fighting her and let her have what she wants and whatever happens happens or put her in a nursing home when they can take better care of her and make sure she ONLY ever gets what will be HD compliant.

Well, if you got this far....THANK YOU for letting me vent!

[MooseMom]

I dunno...I tend to think that if you're lucky enough to have reached 84, you should be able to eat what you want!  But I do see the dilemma.  I don't think putting her in a nursing home is going to improve her outlook on life, though.  Taking her away from family doesn't seem like a good solution, but then again, I don't know her...I could be way wrong.

Maybe you could talk to her social worker.  I'm thinking that the SW has seen this type of situation many times in the past.  S/he may be able to give you some practical advice in this regard.

[MrsFishy]

It's really quite baffling to us that she wants to even do the dialysis and prolong her life this way. She can't go anywhere and do anything anymore other than Dr's appts and HD and she sees more and more of her friends in then obits each week and doesn't really have many friends kept now and now she is supposed to live under all these dietary restrictions. My husband and I have both said that if we were in her shoes we'd say NO WAY to the HD and eat what we want and live for however much longer we had, even if just for a few days to weeks. Although, I know that's easy to say for us NOW!  We might answer that differently in another 30+ years!  LOL

My main concern with letting her have what she wants is the potential serious complications that could arise. Not worried about it causing death as much as painful things such as broken bones that would cause her to suffer. We absolutely want to protect her from that!

[Poppylicious]

It's really quite baffling to us that she wants to even do the dialysis and prolong her life this way. She can't go anywhere and do anything anymore other than Dr's appts and HD and she sees more and more of her friends in then obits each week and doesn't really have many friends kept now and now she is supposed to live under all these dietary restrictions.

It's natural to not want to die, even when your quality of life isn't as good as it once was, or could be.  HaemoD is keeping her alive because she isn't ready for death.  However, she also isn't agreeable to giving up what she loves the most (and to be fair, if I was 84 I'd be a pain in the bum about it too!)  The dietary restrictions don't have to be that big a deal and Aleta gave you some good advice about that on your other thread.

She agreed and said she wanted to do dialysis but has been very uncooperative and sneaky and deceitful all along but is getting worse. Her favorite foods were tomatoes, peaches, pizza, ham and turkey sandwiches, chocolate, and LOTS of coffee and milk. :/ So, you can imagine how this is going!

She's been sneaking more coffee than she is allowed and having 6 cups a day instead of 2! She sneaks milk so we have to now just deliver her 8 oz. of milk each day. She gets very angry when she asks for things she can't have and we explain they are way too unhealthy for her and when we do let her have some foods she likes that are technically too high in phosphorous, she refuses to take her binders.

You use a lot of negative language (the emboldened bits!) to describe your MiL, yet in your other thread you said that she's forgetful.  Is she really sneaky and deceitful or is she just unhappy and wanting the best of both worlds (what the haemoD gives her and what the food gives her)?

Do you sometimes treat her like a child (perhaps without meaning to)?  I only ask (and please don't be offended; I realise that you're just venting so what goes on in reality may be different!) because of the bits of your post which I've italicized; you talk about her asking and you denying.  I can imagine it must be very frustrating to have control taken away from you (which you've done by delivering less milk and refusing to give her something when she asks.)  Have you spoken to her about your worries for her and how she'd cope if a potentially serious side-effect of her behaviour did occur?  If you have and she knows the risks, then perhaps you need to let her make her own decisions and make her own mistakes.  I know it would be difficult when you only want what's best for her, but she's an adult ... an OLD adult! 

I too wouldn't go with the idea of putting her in a nursing home unless it was her decision to go.  However, I can see that this must be emotionally draining for you, and very frustrating so I'll agree with MM and suggest you speak to her SW.  There are no easy answers and it's a very fraught situation for all of you to be in.

*huggles*

[lmunchkin]

Msfishy, if you and hubby have sat down with her and discussed with her the consequences of the decisions she makes.  Then as much as it may pain you both, then let her do as she wants.  You have discussed all the pro's & con's with her and now she knows!  If she wants to do something that is not good for her, then let her do it!

Sometimes it takes tough love to sit back and watch, but honestly, you guys can beat the rug to death with your thumb constantly on her!  Relax and see what she does.  If she has a consequence to somethiing she didnt do right, then let it happen and be there for her when she needs to be picked up again.

She may just have the "Powdered butt syndrome" too.  Her being the parent caring for her kids all those years.  Now she is at that point in her life with this damn disease, that she is hurting so much inside.  She doesn't want to be a burden to anyone, especially her children.  Honestly, I'd feel the same way I believe, if I were in her position.  Women are nurturors by nature.  They do not want nurturing themselves.  Men tend to accept the nurturing of others.

I just think you and your husband have done all you can do.  Just leave her alone, and let her ask if she needs you.  Just be close, in case she does!

Praying for ya, during this difficult situation.  It isn't easy, and we all know that!
God Bless,
lmunchkin
 

[MrsFishy]

You use a lot of negative language (the emboldened bits!) to describe your MiL, yet in your other thread you said that she's forgetful.  Is she really sneaky and deceitful or is she just unhappy and wanting the best of both worlds (what the haemoD gives her and what the food gives her)?

PLEASE re-read what I wrote and how I wrote it. I never would ever intentionally negatively describe my MIL nor do I believe I did. I was describing her actions and behavior but not HER!  Big difference!

Yes, she is having short term memory issues but isn't forgetting that she is supposed to have limited things such as milk and coffee and chocolate. She has admitted that she knows she is supposed to follow certain guidelines and she just didn't want to. We can totally understand that as we'd likely feel the same way. It really has been hard in that we do find ourselves feeling like we have to treat her like a child and we expressed our concerns on this to her Dr. who said its not uncommon and we just unfortunately have to. He said, "you wouldn't let your young children eat and drink whatever they want if it's not good for them and now you need to make sure she doesn't either since she is no longer capable of making good decisions for herself". So, we find ourselves horribly torn. He basically has us feeling like it will be all our fault if there are negative consequences to her not getting her phosphorous under control and yet we feel horrible trying to force her to do things she doesn't want to do. It's a no win situation, I guess.

[willowtreewren]

So, we find ourselves horribly torn. He basically has us feeling like it will be all our fault if there are negative consequences to her not getting her phosphorous under control and yet we feel horrible trying to force her to do things she doesn't want to do. It's a no win situation, I guess.

First of all, I understand how difficult this must be for you!  We don't ever want to become our parents' parents! Having said that, Shorty is making decisions that will affect her health, DESPITE how much you are trying to help her. And you ARE trying to help her. So, don't take on this extra guilt. The doctor cannot, simply cannot be in your shoes so take what he says with a grain of salt.

The worst part of all this is realizing, as you have stated, that Shorty's choices may lead to future situations that are in some ways worse than dying. Maybe THAT is the message she needs to hear.

I don't know. None of us are there with you, so we can't know the full extent of what you are dealing with. But I do send my sympathy.

 

VENT, whenever you need to! That may be the only release you have right now.

 

Aleta

[Poppylicious]

You use a lot of negative language (the emboldened bits!) to describe your MiL, yet in your other thread you said that she's forgetful.  Is she really sneaky and deceitful or is she just unhappy and wanting the best of both worlds (what the haemoD gives her and what the food gives her)?

PLEASE re-read what I wrote and how I wrote it. I never would ever intentionally negatively describe my MIL nor do I believe I did. I was describing her actions and behavior but not HER!  Big difference!

My most humble apologies.  I didn't for a second assume/imply that your MiL was a sneaky and deceitful person.  I also don't believe that her actions and behaviour are necessarily deceitful or sneaky which is why I was asking (not suggesting) if you really felt she was being so.  My Blokey is the first to admit that for the first few months he was on haemoD he was eating/drinking what he wanted and often lying about it, both to me and the professionals.  This wasn't because he was acting in a sneaky or deceitful way, but because he was in denial and wanted life to continue as it always has.

Perhaps you just need to keep (subtlely) reminding her of the consequences of her choices, but let them remain HER choices.  Don't constantly tell her she can't have this and that but give her the opportunity to have what she wants, whilst making a more renal friendly alternative available.  At 84 she's got a lifetime of (now potentially bad) habits to let go of and that can't be easy.  It also isn't easy to watch a person that you love suffer and know that they're continuing to harm themselves whilst all you can do is wait for the fall-out ... many of us here know what that is like and can fully sympathise.  Keep venting!

*huggles*

[MrsFishy]

My most humble apologies.  I didn't for a second assume/imply that your MiL was a sneaky and deceitful person. 

No, I didn't think you were assuming or implying that she is a sneaky or deceitful person.  I thought you were accusing me of describing and depicting HER in a negative light, rather than describing her ACTIONS.  I love my MIL dearly and spend every day trying to do everything I can to take care of her in the best possible way I know how and I didn't want anyone to think that I was ripping on her!  Know what I mean?

No worries. 

[fearless]

I don't think it's right for the doctor to put it to you that it's YOUR responsibility to monitor her behavior as if she were a child.  If she's able to understand the dietary restrictions and the consequences of eating things she's not supposed to, then she should be given the respect of being an adult to do what she wishes.  If she's accepting the negative consequences of worse health then maybe she's just decided that's how she'd prefer to go: lengthening her life by using dialysis - so that she can ENJOY whatever's left of it!  Then when complications set in from eating the wrong things, she can determine if she can bear up under those additional problems or not.  If I were 84, and had decided to try to keep living by using dialysis, I might want to just eat whatever I want too, because I wouldn't necessarily be trying to live for 50 or 60 more years. 

She's an adult who's still clear about what she wants it seems.  You should have the burden of that removed from your shoulders. 

[looneytunes]

This topic is near and dear to a lot of us care partners.  When hubby and I were newbies to D, I worked very hard to only make available the foods that were on the "approved" list.  But this caused some tension and resentment to build.  He would sneak foods and binge on them when I wasn't around.  He felt I was continually nagging him about what he was eating.  I resented him sabotaging my efforts to help him avoid the consequences of the wrong foods. 

As time went by and we continued our dialogue about this, we have come to a point that he eats what he wants and he is fully aware of the potential consequences.   I continue to make available the healthy foods he should be eating and since I do the shopping, I limit the bad stuff.  That doesn't stop him from getting candy bars, chips, ice cream, soda, nuts, etc. when he has the opportunity but I don't feel guilty because I can only do so much. 

You can't do it for her, it has to be her choice.   If she becomes immobile and only can eat or drink what is given her, then it becomes your choice.   

[MrsFishy]

She is basically immobile. She can't drive anymore and can only walk for very short distances, like around her small condo. We do all of her grocery shopping, meal prep, etc.  So, I guess that's why I feel such tremendous responsibility to make sure she ONLY has what meets the guidelines. On the flip side though, I don't want to strip her of one of the only things she has left to enjoy anymore and that is food and coffee.

I appreciate all of the dialogue on this issue.  I'm going to go sit down with her and have a long talk (again) and explain (again) what the possible negative ramifications are of her eating habits and ask her if she'd rather eat what she wants (within reason) and take her chances or have us keep being the food police to protect her from bad consequences. I'll respect her wishes on what SHE wants to try to make however much time she has left, QUALITY time.

[thegrammalady]

the thing many forget, even the professionals, is that it isn't an all or nothing diet. it's extremely hard for some dietitians and docs to say eat what you want in moderation. our bodies react to things differently. some of us can drink milk and our phos levels are ok, some can't. encourage her to take her binders. it will mean she can eat more of what she likes. and remember to take them with snacks too. the dr should make sure the rx has extra pills. most of us eat more than 3 times a day. you need some binders every time you put food in your mouth. unlike the dietitian who told a patient "if you ever eat any cheese again your phos will never come down" it just doesn't work that way.

hopefully things will get better. feel free to vent anytime.