Taking care of Shorty

[MrsFishy]

Hi!   

My husband's Mom (Shorty) started on dialysis this past summer.  I have been taking her to doctor appts. for the past few years and we knew her kidneys were on their way out and her nephrologist told us her kidney function was continuing to decline and we would need to decide if she wanted to do dialysis and make a decision within a few weeks so she could get a fistula created via surgery.  He said she'd likely be at the point where she needed dialysis within 3-4 months.  Well, a week went by and she was thinking about what she'd want to do (she was 83 then and also has COPD, diabetes, hypertension, and 2 unruptured aneurysms).  She had another Dr. appt. with her general Dr. and she kept falling over while I was trying to get her in to the clinic for her appt. and her breathing was labored.  That resulted in being put in the hosp right away and they discovered we no longer had 3 more months....she needed dialysis NOW!!!     So, talk about a crash course in learning what you need to know about dialysis!  Yikes!  We had NO idea that your diet has to change at all, the dialysis knocks you on your butt after each treatment, etc.  It also seems that as soon as her kidneys said, "I'm outta here.....see ya!", her short term memory moved out with them.  It's a constant struggle for her to remember to take her pills, that she can't drink unlimited coffee and milk and then gets mad when we tell her can't have any more that day and explain why.  Then the next day, she doesn't remember any of it and gets mad at us all over again.   It's really very emotionally draining.

So, anywho......we still seem to constantly struggle with figuring out what things she can have and give her some variety (her favorite foods were spaghetti, bananas, peaches, tomatoes, potato chips, etc.).  Just curious what things you have found to be good substitutes of foods that ARE ok for your loved one to eat.  Found any good recipes for tasty pasta that isn't full of dairy products or tomato based sauce?  I'd love any tips or tricks you've found to making the whole new dialysis life style work better for you/your loved one. 

[galvo]

You are a caring person, Mrs Fishy. An 83 year old lady with short term memory loss and serious medical conditions! I'm afraid I couldn't impose dietry restrictions on her. But, hey, that's just me. If I make it to 83, which is most unlikely, woe to anyone who tries to restrict my diet!

However, you'll find lots of kidney-related dietry stuff on this site and sweeter people than I will doubtless respond with constructive  advice.

Best wishes to you and the elderly lady.

[Jean]

God Bless You Mrs. Fishy. You are a woman of great courage. Now, read a lot, change her diet and do the best you can. Good luck to you and check in often with us. We would love to hear how you are doing.

[looneytunes]

MrsFishy...you may qualify for sainthood very soon.  With all the medical issues Shorty has, and now memory loss, it'll be an interesting (was that tactful?) ride.  Check out the dietary section and you'll find lots of info on what is and isn't good for the renal patient.  I've found lots of great recipes there as well.   

[willowtreewren]

Mrs. Fishy,

 

Instead of just eliminating the foods that Shorty now eats, try just reducing them or adjusting them to make them more renal friendly. Instead of potato chips with salt, try unsalted corn chips (use a low salt dip with them).

Instead of no spaghetti, try making spaghetti with rice noodles and less sauce.

You do have a major challenge since Shorty is showing signs of confusion and memory loss. Her being washed out may be a result of their drawing off too much fluid. Talk with her doctor about that and see if it can be reduced.

 

Aleta

[MrsFishy]

Thanks, Aleta, but what questions do I ask?!  How much fluid SHOULD be drawn off and do I simply ask, "How much fluid is she having drawn off with each treatment?".  I just want to make sure that's the correct way to ask the question so they don't look at me like I'm an alien!  LOL

As someone else mentioned, I too would put up a huge battle if I were in my 80's and you tried to take away my fav foods!  I've told my husband that if I'm in my 80's with multiple medical complications and my kidneys konk out, just take me out back and shoot me!  BUT, since SHE doesn't feel that way, I want to do everything possible to make this work for her. 

[willowtreewren]

Thanks, Aleta, but what questions do I ask?!  How much fluid SHOULD be drawn off and do I simply ask, "How much fluid is she having drawn off with each treatment?".  I just want to make sure that's the correct way to ask the question so they don't look at me like I'm an alien!  LOL

As someone else mentioned, I too would put up a huge battle if I were in my 80's and you tried to take away my fav foods!  I've told my husband that if I'm in my 80's with multiple medical complications and my kidneys konk out, just take me out back and shoot me!  BUT, since SHE doesn't feel that way, I want to do everything possible to make this work for her. 

The best way to approach this would be to come at it with a desire to understand.

Let Shorty's doctor know that you are concerned about how she feels after her treatments. Then ask if that could be caused by have too much fluid removed (after all, she is a tiny creature!). From there you might ask how much fluid the neph thinks should be removed. Also mention that she has been less mentally alert since starting dialysis and see if the doctor can give you any insight into why that might be happening.

The thing with the fluid removal is that they don't really know (especially in the beginning) how much of the patient's weight is from normal body weight or accumulated fluid. They try to figure out the "dry" weight, but often get it wrong. From what you have said in another thread, Shorty has lost a considerable amount of weight since beginning dialysis. There is a good chance that they have reached her dry weight and are now pulling too much fluid off. An indication of this would be her blood pressure at the end of a treatment. If it drops very low, it is a good bet that they are pulling her too dry. Another indication would be cramping. Under the best conditions, it takes time for fluid to move from the muscles into the blood stream for removal. If fluid is removed too quickly, the muscles will cramp.

I know this must be nearly overwhelming.  I wish there were more that I could do to help. We were so fortunate because my husband reacted to dialysis very well. And please realize, I am not trained in the medical profession (I'm a teacher). But I was my husband's "dialysis nurse" for a few years. One learns quite a bit over time. Plus, I've been reading here for a while, too. 

The thin

[lmunchkin]

Mrs. Fishy,

 

Instead of just eliminating the foods that Shorty now eats, try just reducing them or adjusting them to make them more renal friendly. Instead of potato chips with salt, try unsalted corn chips (use a low salt dip with them).

Instead of no spaghetti, try making spaghetti with rice noodles and less sauce.

You do have a major challenge since Shorty is showing signs of confusion and memory loss. Her being washed out may be a result of their drawing off too much fluid. Talk with her doctor about that and see if it can be reduced.

 

Aleta

Thanks, Aleta, but what questions do I ask?!  How much fluid SHOULD be drawn off and do I simply ask, "How much fluid is she having drawn off with each treatment?".  I just want to make sure that's the correct way to ask the question so they don't look at me like I'm an alien!  LOL

As someone else mentioned, I too would put up a huge battle if I were in my 80's and you tried to take away my fav foods!  I've told my husband that if I'm in my 80's with multiple medical complications and my kidneys konk out, just take me out back and shoot me!  BUT, since SHE doesn't feel that way, I want to do everything possible to make this work for her. 

The best way to approach this would be to come at it with a desire to understand.

Let Shorty's doctor know that you are concerned about how she feels after her treatments. Then ask if that could be caused by have too much fluid removed (after all, she is a tiny creature!). From there you might ask how much fluid the neph thinks should be removed. Also mention that she has been less mentally alert since starting dialysis and see if the doctor can give you any insight into why that might be happening.

The thing with the fluid removal is that they don't really know (especially in the beginning) how much of the patient's weight is from normal body weight or accumulated fluid. They try to figure out the "dry" weight, but often get it wrong. From what you have said in another thread, Shorty has lost a considerable amount of weight since beginning dialysis. There is a good chance that they have reached her dry weight and are now pulling too much fluid off. An indication of this would be her blood pressure at the end of a treatment. If it drops very low, it is a good bet that they are pulling her too dry. Another indication would be cramping. Under the best conditions, it takes time for fluid to move from the muscles into the blood stream for removal. If fluid is removed too quickly, the muscles will cramp.

I know this must be nearly overwhelming.  I wish there were more that I could do to help. We were so fortunate because my husband reacted to dialysis very well. And please realize, I am not trained in the medical profession (I'm a teacher). But I was my husband's "dialysis nurse" for a few years. One learns quite a bit over time. Plus, I've been reading here for a while, too. 

The thin

Aleta is right on this!  She beat me to it 

lmunchkin
 

[willowtreewren]

I just realized that I actually posted before I was finished.

I wanted to add:

The thing is, if Shorty is having some issues with loss of mental acuity, she really needs someone else to step in to be her advocate. It is wonderful that she has you to fill that role.

 

Aleta

[billybags]

Welcome MrsFishy, you sound like you are doing a grand job looking after Shorty, it can not be easy. As for foods just keep off  the salt, watch the fluid and just let her have a little of what she fancies. If she is losing weight she will need to eat . 

[MrsFishy]

Thank you for the info!  Shorty never has appts with her neph anymore because he just sees her when she is at dialysis. I do have a call in to speak with him though to get some more info and let him know of our concerns. The one thing that I do remember him saying though when she 1st started dialysis and we mentioned her sudden loss of short term memory, he just said, "that's very common and normal". :/  She HAS had a problem with her bp bottoming out during dialysis tho so now I know why that may have happened.

We do take advocating for her very seriously as we have learned we HAVE to!  The same hospital where she gets HD is the same one who almost let her bleed to death from a botched up port installation in her chest and THEN they kept forgetting to feed her!  One night at 9pm when the nurse realized they forgot to bring her dinner, she didn't even bother to look at her dietary restrictions and brought her a HAM sandwich and a BANANA!!!!!!   

[billybags]

They do this in our hospitals as well. (NHS) Lets face it you have to eat. A lovely banana, a smashing ham sandwich, a bowl of soup (more fluid) sponge covered in custard, I could go on and on. Don't you just love it. I hope she ate it.