I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Sara on January 07, 2006, 10:15:12 PM
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to help or comfort you? Is there anything? I'm looking for things as simple as offering encouragement (if that would help) or things like providing magazines to read during treatments, etc.
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to help or comfort you? Is there anything? I'm looking for things as simple as offering encouragement (if that would help) or things like providing magazines to read during treatments, etc.
Just be there for them emotionally, dialysis patients go through some very emotional times. I have gone through many hard times in the last 12 years of dialysis and luckily I have a very supportive wife.
For an example of a emotional time, I have seen 2 people die while ON the dialysis machine during a treatment. One was in the chair right next to mine.
Just remember that no matter how close you are to the person you will never truly understand what that person is going through both physically and mentally.
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NO Books or Magazines! I must have received 15 freaken books for Christmas! People think "Oh, she has plenty of time to read"! NO! I can't concentrate past a movie and I'm usually freezing! None of which is condusive to reading. Get him a portable DVD player and he can watch a movie.
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NO Books or Magazines! I must have received 15 freaken books for Christmas! People think "Oh, she has plenty of time to read"! NO! I can't concentrate past a movie and I'm usually freezing! None of which is condusive to reading. Get him a portable DVD player and he can watch a movie.
A portable DVD player really is a good idea, but I would say after his first month or so. Some people have a hard time adjusting to their first dialysis sessions. But yeah once he is stable and knows how his body reacts to dialysis a movie will make the time go by alot faster.
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If the person isn't diabetic, you could get them some hard candy to eat during treatments... breath-cleansing gum would also be good, because after 4 hours on the machine, your breath can get nasty.
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One thing they can do is stop the pity and feeling sorry for you. I hate that! Nothing annoys me more than having someone make that pity face :-[ at me. Treat me the same as you would everyone else. Don't be patronizing either.
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There are no words that anyone can say, My friends and relatives know I am on the machine, thats all, I played in a snooker match on saturday night must have looked bad, was asked if I was ok, just said Yes, and left it at that. You just have to try to carry on with your life as best as you can. as someone once said "Don't let the Bastards get you down!" or something like that. Fed up of being asked How Are You. I just reply. I'm fine. It the best way so you do not get into, what is indeed wrong with you.
Kevno
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Sometimes we have to be able to accept what people are saying to us out of love and kindness for us. ;D Now enough bullshit! >:D
Here is the real stuff as I see it!
The spouse can be reasonable in expectations:
Expect the renal patient to be tired and cranky.
Expect dinner not to be cooked regularly.
Expect to learn to cook yourself.
Expect to let the renal patient nap during the day.
Expect to drive them to dialysis regularly.
Expect there to be lots of complaining while you are driving them there.
Expect them to complain about the diet and food limitations placed on them by this disease.
Expect the patient to cheat on the diet and not give a rat's ass when you say anything about it.
Expect to be cursed at occasionally when they can't get comfortable in the bed or have itchy skin and don't want to be touched.
Expect to be patient with the patient.
Love them for who they are, not who they have been or how you remember them as a healthy person. Love conquers alot, but eventually death will conquer ESRD and dialysis.
Oops got to maudlin there :D Sorry!
Love to all.
Katherine
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I know this is an old thread, but it got me thinking. Can a family member do more? Would it help if they advocated for you, attended meetings with doctors, wrote things down, helped gather information, assisted with forms for insurance and prescriptions? Or do you prefer to be left alone, only wanting help when you ask for it, preferring that family members let you handle it yourself?
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Great question Okarol...my answer is "both"...if I ask for help, please follow through..I would like to handle as long as I can.
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Sometimes we have to be able to accept what people however thoughtless are saying to us out of love and kindness for us. ;D Now enough bullshit! >:D
Here is the real stuff as I see it!
The spouse can be reasonable in expectations:
Expect the renal patient to be tired and cranky.
Expect dinner not to be cooked regularly.
Expect to learn to cook yourself.
Expect to let the renal patient nap during the day.
Expect to drive them to dialysis regularly.
Expect there to be lots of complaining while you are driving them there.
Expect them to complain about the diet and food limitations placed on them by this disease.
Expect the patient to cheat on the diet and not give a rat's ass when you say anything about it.
Expect to be cursed at occasionally when they can't get comfortable in the bed or have itchy skin and don't want to be touched.
Expect to be patient with the patient.
Love them for who they are, not who they have been or how you remember them as a healthy person. Love conquers alot, but eventually death will conquer ESRD and dialysis.
Oops got to maudlin there :D Sorry!
Love to all.
Katherine
This cracks me up! Consise and to the point...
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I take care of pretty much everything with the doctors but I have a lot of backup support and if I ask for any kind of help, I usually get what I need. My husband, Lee, drives me to D and picks me up almost every day but we have a small network of neighbours and friends who are available to help with that if needed. Lee has also taken over many household things and a very good friend helps me with the other stuff that he's lousy at, window cleaning, gardening and handyman chores. I don't want my family to have to spend any more time than they already do in medical settings but I love the fact that I can ask someone to come with me to certain stressful appointments if I need mortal support. I also have fantastic doctors and nurses.