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Author Topic: Hate the term "caregiver"  (Read 5821 times)
brandywine
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« on: October 29, 2010, 07:48:52 AM »

Made my first appointment with the transplant doctor. The receptionist told me that I had to bring my caregiver. Um. I will be caring for myself. I was very uncomfortable with that word. It made me feel like an invalid. :rant;
Is it just me???
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IgA Nephropathy Diagnosed Feb 2009
Transplant List Nov 2010
Peritoneal Dialysis Dec 2010
okarol
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« Reply #1 on: October 29, 2010, 08:35:25 AM »

They like to see that you have a support system so you will have help during the recovery period following the transplant surgery. It does seem odd that they would call it a caregiver though. Try not to let things like that get you down, you'll often encounter people who don't think about how it makes you feel.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #2 on: October 29, 2010, 10:23:58 AM »

I hate that term, too.  I had to bring my husband along to show I had a support system, and it made me sorta mad because up to now, I've done everything myself...I keep up with making all of my appointments, I organize all of my meds (and that's a bureaucratic nightmare), I do all the research, etc.  He's told me that he will train for NxStage with me, but I don't foresee him doing anything but sitting with me while I dialyze.  It's not that he can't or won't do these things for me, but it would never occur to me to expect him to do so.  I am my caregiver.
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brandywine
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« Reply #3 on: October 30, 2010, 08:07:02 AM »

I guess I also have to face the fact that I will get worse, and at some point will probably have to have the help of someone else. I think I'm in denial about that. The last three days, I've been more exhausted than ever. Sleeping more than usual. Even if the care isn't for me and my treatment, I still need someone to pick up the pieces that I let fall because of time or energy. Things like some of the cooking and cleaning. Sooooo...all that said. Rant over. I still don't like the term, but I won't get into a tizzy every time I hear it. 
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IgA Nephropathy Diagnosed Feb 2009
Transplant List Nov 2010
Peritoneal Dialysis Dec 2010
boswife
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« Reply #4 on: October 30, 2010, 08:27:23 AM »

I'll put another 'spin' on the word  ;)  For me, beings i AM the "caregiver" i feel an honor about it.  I am my hubbys partner in it all for sure, but because i do it with *care* i hear this as a good word..   Just a thought.  Its just someone giving you some well deserved care, which we all deserve  :2thumbsup;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
carol1987
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« Reply #5 on: October 30, 2010, 04:48:54 PM »

thank you boswife!  I also have been having a hard time  thinking about having to have a caregiver...... the way you think of it made me smile....
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
okarol
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« Reply #6 on: October 30, 2010, 08:34:18 PM »

 :2thumbsup;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
del
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« Reply #7 on: October 31, 2010, 05:28:20 AM »

I am my hubby's partner not his "caregiver"!!!  He is quite able to take care of himself!! 
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« Reply #8 on: November 02, 2010, 10:39:14 AM »

I am my hubby's partner not his "caregiver"!!!  He is quite able to take care of himself!!
Amen!

I don't like the term 'caregiver'.  I am not my Blokey's caregiver; I just happen to be married to a man who needs me to do a bit more for him than a husband who doesn't suffer with lack of renal function.

Besides, he's always been a lazy arse so I'm not sure that too much changed after he went on dialysis.

 ;D
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- wife of kidney recepient (10/2011) -
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Darthvadar
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« Reply #9 on: November 02, 2010, 10:46:15 AM »

My mum needs assistance with lots of things, and so needs care... I'm not too keen on the 'Caregiver' title... Implies that it's a one way street, and that the person needing assistance is taking..... I prefer the term 'Carer'... As someone else said, I'm doing what I do because I care...

Mind you, as I'm a wheelchair user, the fact that I am a carer raises a few eyebrows.... Oh well... What's in a name!!!!!...

Love to all...

Darth...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
Deanne
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« Reply #10 on: November 02, 2010, 12:34:51 PM »

What happens if you don't have a "caregiver?" I'm single / live alone in Oregon and my family is in Minnesota. I'm hovering around 20% function and my neph will likely refer me to start the transplant work-up process within the next few months.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
YLGuy
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« Reply #11 on: November 02, 2010, 03:45:55 PM »

I had people from my church, people from Pop Warner and people from the YMCA parent/child program come.  I do not have any family out here (except my beautiful children) and I filled a room with support people.  Look outside of the "normal" and ask.  I sent 1 email asking and was overwhelmed by the response once word got out I needed support people.
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cariad
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« Reply #12 on: November 02, 2010, 04:59:04 PM »

What happens if you don't have a "caregiver?" I'm single / live alone in Oregon and my family is in Minnesota. I'm hovering around 20% function and my neph will likely refer me to start the transplant work-up process within the next few months.

I never brought a caregiver. I did not think I needed one and no one ever said anything. Not every hospital demands this, although you will need to be able to answer questions about your plans should the call come in. Who will help you after transplant? I did not give much thought to this, and wow did we ever need to rely upon our support person. He was awesome and completely rose to the challenge. I got it in my head that I would be all fixed up by the time they discharged me on the Monday after my Thursday operation. It took me nearly a month to stop dreading having to get out of bed in the mornings. Probably won't happen to you, but you need to prep for the worst and be able to confidently tell them that you can handle whatever comes.
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Stoday
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« Reply #13 on: November 02, 2010, 05:26:06 PM »

Nurses look out for anyone who they can treat as a caregiver.

My mate came to fetch me from hospital after I'd had an endoscopic examination of my colon. The nurse explained to my mate how he should look after me!  :o  :rofl;
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Diagnosed stage 3 CKD May 2003
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Heart Attacks June 2005; October 2010; July 2011
Deanne
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« Reply #14 on: November 03, 2010, 12:04:22 PM »

Whew! That's a relief. I have friends and neighbors who will help me, and I have long-term care insurance.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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