What can I do to make them understand?

[caringpct]

I know starting dialysis is life changing. You have all this new information, lists of what not to eat or drink, restrictions on everything! I know its hard and I won't say I completely understand what it is like to go through because I don't. I only see it I do not live it. But I am trying to understand.

When I have new patients come in I try to explain how to restrict fluid intakes. I give them suggestions that other patients have told me work. I encourage all patients to talk to each other and make suggestions on how to handle things, however how do I make some realize they are slowly killing themselves.

There are a few that come in 10-14 kg over between treatments!! I am not talking about weekends either. I have tried to explain that I can not take that much off them in one treatment and also have told them what it does to their hearts. They come in feeling terrible and leave feeling terrible. Their poor feet and legs are so swollen that they can't wear shoes! But still they continue to drink!

It hurts me watching them do this to themselves and I can't stop them. Then I feel horrible when I'm not allowed to give them any ice while on treatment. (per Dr. orders) What can I do to help them through this? I don't mean to lecture them but I don't know how to get my point across.

What made everyone here decide to follow their diets better? What can I do to help my new patients?

[iketchum]

Hello and thank you for caring. The patients you have need to want to help themselves. I have seen nurses scare their patients into compliance, but that doesn't always work. This disease is a life altering thing, some people don't want their lives to change so resist any change you give them. They need some kind of intervention from family and friends to see and except their new way of living. Maybe sit them all down together and really lay down the consequences, tell them how many will survive and how long they may have left to live without changing their ways. Any way you look at it, they will need to want to change.

[caringpct]

I don't want scare them into compliance. I just want them to see there is life with dialysis. No they may not be able to do all the same things but that doesn't mean they have to miss out on everything. Thanks for the advice. I just wish some people could look past the present situations and see the good that could come of the future.

[paris]

Thank you for caring.       Denial -- I think we all are there at some point.  Give your patients this site info.  They will see from others in their situation how they are dealing with the reality of fluid intake.    It is good to see how much you care. Lucky patients!!

[monrein]

The only conclusion that I personally can come to, caringpct, is that some patients are quite depressed and so not caring for themselves and taking charge of their health is almost a form of slow (or not so slow) suicide.  Denial of the reality of our situations however is not limited to the chronically ill.  The average diet of the average North American is horrendous in terms of what the body needs and yet we continue, as a society, to harm ourselves even though much effort has been put into educating the public about the dangers of over-processed, over-salted, overly fatty foods.  We contribute actively to our own ill health and get offended when someone points out the madness.

I don't actually believe that there is much you can do except to continue as you are, pointing out as gently as possible that their actions have consequences.  You should continue also to make suggestions for alternatives and factor into the equation that low energy can cause people to grab the nearest thing to eat or drink, even though it may be harmful.  Planning ahead is crucial because the restrictions are indeed burdensome.   Sometimes, if clinical depression is present, is identified and treated then patients can take better charge of what they need to do.

I try always to make what I eat count (I'm on my 2nd transplant now, having had the first for 23 years) in terms of fiber, protein, vitamins, little sugar, good fats only and the list goes on.  Even my treats must have some nutritive value without too much downside.  I was an emotional eater and very overweight as a child due to circumstances in my family life but at 15, I made the decision to change that as a way of coping with feelings as I was tired of being uncomfortable in my own body.  Exercise became essential to my well being...no I didn't love it at first but it made me feel much better, physically and mentally.  I don't think you can help anyone who isn't ready to make these lifestyle changes, they need to want to feel better and be prepared to do whatever is necessary to have that happen.

Perhaps some patients would respond to questions about what's getting in the way of them following the renal guidelines...I have to be perfectly honest here and say that I would be super frustrated with the degree of non-compliance that you mention.  I go a bit nuts however watching some members of my own family make consistently poor choices about food and drink.  Lectures certainly don't seem to work very well so maybe you just have to keep up with your efforts to educate but be prepared to watch people choose to self-destruct on some level.

Best of luck and thanks for caring.

[Poppylicious]

Gosh, I have no idea.  I do know that when my Blokey started dialysis last summer he really struggled with the fluid restrictions (although I don't think he ever put on the amounts you're talking about).  It wasn't until he was told he couldn't be considered for transplant until he got his weight down that he realised that his fluid intake was incredibly important and now I just worry that he's not drinking enough! 

Having that 'something' to aim for has kept him going, but I know that won't work with everyone, even if they can find that 'something' to aim for. 

[cariad]

I feel for you, caringpct, but I also feel for your patients. Fluid restrictions are tough.

I think the others are absolutely correct, the patients must want to do this for themselves. The best you can do is give them the information in as non-judgmental a way as possible, and hope that they find the drive to follow it. Depression may well be a factor. Do your patients know their treatment options? (Different types of hemo, possibility of pd, transplant?)

I think it's an excellent idea to ask if there's a reason why they are unable to follow guidelines. I know I was very angry when I was in renal failure, and had parents who were hopeless at dealing with it (though they thrived under the attention that having a sick child brought them). It was obvious I was angry, but this was 1976, before it occurred to anyone to say something like "I've noticed you're really unhappy - can I help?" Back then, hurting myself was the only way I knew how to express my anger, and to hurt the people that I felt were hurting me (doctors and my parents). I felt like they were trying to control me, and I wanted to show them who was really in control. I was a kid, but I think many adults think along these lines as well (not necessarily consciously).

I know it's a cliche and it sucks to hear it, but you cannot save everyone. Some patients are determined to self-destruct. I probably would be if I had to go through even a fraction of what some people on dialysis endure. Good luck, and keep us updated on how you're getting on.

[Rob Brydon]

Reading this makes me realize that what I do to stay alive is mostly subconscious now. I've been on nocturnal hemo for 34 years and I must admit getting 2 failed transplants under my belt inside the first 4 years and told a successful one wouldn't happen was the wake up call. However, I was able to assess the situation and ask if I wanted to live or die. The latter didn't bare thinking about and I had had enough scares to know I had to find a reason to keep doing this. My wife and I had been maried 5 years by then and she was my reason. My focus shifted from me to her and as much as it was me inside this bubble, she was enduring it too.
A few years later and via (AI) we were able to bring 2 fantastic boys into the world and instantly I had 2 more things to focus on. They have grown to be men and have never known dad not to have the machine beside his bed. I tell you about these things because they made the difference. My boys are overseas now and the wife couldn't take any more, so I find new things to motivate me. It could just be that I don't want rto do. I don't even want to be sick. Illness I can handle but I hate being sick. People need a reason to live. Find that reason and point it out. Sometimes it's too obvious. Happy day folks..R ;-)

[Rob Brydon]

Sorry, it was meant to read. It might be that I just don't want to die. I see no future in it. Certainly no camera club...

[tyefly]

Very nicely done......well stated....   I would love to learn more of your success with Dialysis.......   I certainly want to be successfull like you ......   I have only been Dialysis for three months now.......   Would love to learn some pointers......   
 How long do you do nocturnal hemo....   days....hours......  what do you do to keep your self going....


    Look forward to hearing from you.........Kathy

[Rob Brydon]

Thanks Kathy, I wouldn't wish this illness on anyone but there is a way thru. I take it a day at a time. No actually thats probably wrtong. I wash Monday, Wednesday and Friday nights for about 7.5 hours at a time from 11 till 6.30ish. When I wake on Saturday mornings I know I don't have to do this again till Monday night. Thats my reward for enduring the week. Something to look forward to. I put on about a litre a day and thats mainly in very small (100ml) cups of tea. Summer is good because when I sweat that means more drinks.
I eat almost anything but having done so many miles I know what I can safely eat just a bit of and what will mnake me feel sick or give me a headache. I love banana on toast but thats headache food. Seldom I have it but I can. I think doing 22 hours a week helps but I don't think my dietician would approve.
I think the docs look at me and say.."well, you've been doing ok so far..keep it up". And I plan to.
Avoid salt. I know if I have something salty, I get thirsty and I don't want to do that. But like I say. You need something to look forward to. Treat yourself, celebrate the goals and milestones. They;re important..Cheers..R

[Ang]

more  than  being  told, patients  need  to  experience  the  consequences  of  their  actions
eg,  in  australia  the  term  is  crashing,when  the  body  can't  handle  the  removal  of  great  amounts  of  fluid,if patients  experience  they  generally  behave  cause  they
don't  like  the  feelings  of  crashing, then again  the  odd  patient  just  does'nt  want  help
thanks cp

[Hanify]

Man, I could never be a nurse.  I just don't have the patience (boom boom).  I would get so frustrated with them.  As Monrein said though, wow, there are many many other areas where people know something's wrong but continue to do it.  Our ridiculous level of food intake, smoking drinking etc - it's not just dialysis patients.  But yes, they have to do it - you can't make them.  Just gentle reminders and suggestions is the only way.  I'd first suggest they write down everything they drink in a day and bring it in - and you could discuss that maybe.

[kristina]

Thanks for caring caringpct...

& thanks to Rob Brydon for sharing his inspiring survival-thoughts with us...

Kind regards from Kristina.

[peleroja]

Like they say, "you can lead a horse to water, but you can't make it drink (or not drink in this case)."  When I first started I treated everything as a game.  I took one of my glasses and marked 8 oz. on it, and drank only that much with each meal, leaving the last 8 oz. in abeyance just in case.  I made charts on Excel and charted all my meals before I ate them, so it was easy to see where I might be overindulging and change it before I ate it.  Then I switched over to PD and didn't have to keep track of anything because I was dialyzing every day.  Maybe folks who can't control their drinking need to be on PD instead.  Just a thought.