I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: Everlasting on September 14, 2009, 11:06:33 AM
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Hello: Maybe you can give me some advise.....I am an advocate and for my partner who is in need of a live kidney. I am a wheelchair user (neurologically damaged by an aerial sprayed pesticide) and consider myself physically able to carry out the role as an in-home care-provider should my partner qualify for in-home dialysis.
The response I am getting from physicians and transplant team members is hair raising! In their eyes (and eyes only) they see an individual with unsurmountable challenges and not a candidate for careprovision of any kind. I feel I deserve at least a try in the careprovider role however for each reason I come up with a professional will find fault in my view of the process.
Shortly after being injured I had to manage with a "J" tube - a feeding apparatus that involves a pump, tubing inserted into the peritoneum and intestine etc. I managed it well and was certainly in much less health than I an at this time.
If you are aware of anyone in a similiar situatioin could you kindly share their or your experience.
With appreciation and In Wellness
Everlasting
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I am the Caregiver for my Wife, I try to imagine being in a Wheelchair and performing her home Hemo treatments and cannot see any reason whatsoever why it cannot be done, ignorance on the part of the medical teams is the only thing I can see. Start beating some heads, this is deplorable......
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It is the will of the person not any medical disadvantage ONE Medical person may try to set on you.
Many disabled people are more abled then so many lazy people who do nothing but sit on a couch and slither in self pity.
Have you looked into PD as an option. This can be done alone by the patient and may SHUT up some of the medical staff you are sadly dealing with.
PS. Nice lighthouse my mom use to collect them..
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Thank you for the very sensitive and caring words you have passed on with respect to myself (wheelchair dependent) being my partner's careprovider while at home and on dialysis.
With great appreciation - Everlasting
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Good luck to you both! I hope your partner gets the kidney, though! That would be great! :)
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My goodness! Why couldn't you be a caregiver?!?! As many idiots as I've worked with, I'd take someone with half a brain in a wheelchair above a physically healthy idiot anyday. This one really puzzles me.....
If you can take care of yourself, why can't you care for your partner? In a worst case scenario, I assume you're capable of calling for help!
Keep showing yourself as a strong person....they'll give in and let you do what you feel comfortable with.
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Hi Inara: Thank you so very much for your comments on a wheelchair dependent care-provider!! Your note was just what I needed to read in the name of self-confidence. I am wearing a smile of joy as I type this.......I tend to over-estiminate by abilities in the course of denial and find myself in a mess. Your note reinforces the fact that what I want my role to be is in fact do-able. To add to the subject I should mention that it is quoted in a magazine a few years ago that "what Melanie wants - Melanie gets". Bingo - once again keep up my reputation. Actuallly, I must say that having a "place" to go - meaning I Hate Dialysis - is an incredible support for me as I have never had the opportunity to share and voice "wants and needs". Thank you again for being there for me.
Everlasting
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Hi Everlasting...
I'm a wheelchair user, and I've been caring for my mum who's also a wheelchair user since May '07...
I do all the usual stuff a carer does, including some things that would come under TMI on an open forum...
It's pretty difficult, but is certainly possible.... I love doing it, and certainly wouldn't have it any other way...
Mum was on haemo, but has changed to PD.... I came up against the very same prejudices from healthcare providers as you have, but believe me, they don't dare to challenge my capabilities anymore... I've left far too many of them with a flea in their ear!.... :rofl;... We the very best judge of our abilities...
I wish you all the very best in the world with your caring responsibilities...
Feel free to PM me anytime.... I don't bite... Well not hard anyway!... :rofl;
May God bless and protect you and yours...
Darth....