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Dialysis: Spouses and Caregivers
We're coming to the end.
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Topic: We're coming to the end. (Read 8324 times)
cinnachavez
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We're coming to the end.
«
on:
August 24, 2012, 02:01:41 PM »
Well, Dad hasn't been able to come home from the nursing center. Things were starting to look good in early July but he started having troubles with a bleeding ulcer, then sores on his feet that wouldn't heal and his mental state has seriously deteriorated and he had pneumonia at the end of July.
Well, yesterday we found out that he has gangrene in his leg. His heart cannot handle the amputation (he has an internal defibrillator now and it goes off quite a bit as it is). His eyes are turning yellow so his liver is not doing good either.
Mom called this morning to tell me that she was going to talk to hospice today. It's time. I know it, Mom knows it, Dad knows it, my sister C. knows it. Telling sister A. and brother A. will be interesting and difficult but hopefully they realize that it's time.
So he's going to go off dialysis soon. Anyone know what happens after that? I don't think he'll be able to come home, Mom can't lift him and he'd need a nurse (they live a long way out of town). Will he feel better initially? With the infection I feel it might happen rather quick but he's awful ornery, you never know with him. When he had his bypass surgery they told him 5 more years at best. Well, here he is 19 years later.
*SIGH* I know it's for the best, he won't be in pain any longer but I wish he was going to be here for the birth of my son. All he's ever talked about was me having a grandson for him and he's going to miss it. Pregnancy hormones aren't helping me at all right now.
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glitter
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Re: We're coming to the end.
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Reply #1 on:
August 24, 2012, 02:08:11 PM »
I'm sorry for the heartache- it isn't easy to watch the ones we love decline. I don't have many words of wisdom( cause I do not think there really are any that help) but know you and your family will be in my thoughts.
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER
caregiver to Jack (he was on dialysis)
RCC
nephrectomy april13,2006
dialysis april 14,2006
Rerun
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Re: We're coming to the end.
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Reply #2 on:
August 24, 2012, 02:14:18 PM »
Just be there for your Mom and Dad. Not much you can do. I think the toxins build up and he should sleep a lot. I hope they can give him some pain meds for his leg.
I'm so sorry. You hang in there and come here to talk, and cry.
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cinnachavez
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Re: We're coming to the end.
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Reply #3 on:
August 24, 2012, 02:18:55 PM »
I have been preparing myself for this for a while but it's still hard. When Mom told me that his skin wasn't healing I knew it was getting bad. Then when he had the bleeding ulcer, I really knew it was getting bad.
So much stress. I've got the baby coming, my oldest started school this week, my husband is deploying later this year and now I'm losing my dad. I wish I could be with him for however long he has left but it's just not in the cards. According to Mom though, he's really far gone mentally now. It might be best for my daughters to think of him as he was when we saw him last February; probably for me as well.
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MooseMom
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Re: We're coming to the end.
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Reply #4 on:
August 24, 2012, 02:23:51 PM »
Hospice is there to help you and your family with all of the practical burdens that rob you of quality time with your father. They can help keep him comfortable; there is no reason why his suffering shouldn't be treated as fully as possible.
I am so sorry that your father will not get to see his grandson. These are the things that make life so joyous and so difficult at the same time...a son to be born and a father to be lost.
I know this is a very challenging time for you.
Your family is in my prayers.
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
okarol
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Re: We're coming to the end.
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Reply #5 on:
August 24, 2012, 03:29:38 PM »
So sorry, it's just sad and must be hard for your family.
I would sob through a whole dramatic movie when I was pregnant, so I bet dealing with this is going to be even more emotional for you.
My grandmother died right before I became pregnant with my 2nd child. I had such a special bond with her, I cannot explain it, I just felt so loved by her, so special. So losing her was the worst. But when my son was born I saw her in him. I saw her smile and even when he cried, something reminded me of grandma. I don't know if this helps, but the connection you have with your dad won't be gone, it's just in a different way.
Poor guy, he's been through a lot. 19 years! That's something. What a gift.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
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jbeany
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Re: We're coming to the end.
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Reply #6 on:
August 24, 2012, 07:08:40 PM »
Does your Mom want him home? Does he want to go? Hospice may make more possible than you think, but it may not be practical, especially if his mental condition has deteriorated to the point that he isn't aware of his location. He's not really going to feel better without treatments, unless he's been doing a lot of crashing and cramping while on dialysis.
Going off of dialysis doesn't come with a set time period for passing on. The docs can make a guess, but they don't really know. It depends on how much function the kidneys still have, and how many other complications there are. My grandmother was diagnosed with kidney failure in January and passed away in the summer. Eventually, the toxin and fluid build up stop the body from continuing, but the timing is all up to things the docs have no way of knowing. My grandmother was stubborn, and it sounds like your dad may be as well.
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality.
boswife
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us and fam easter 2013
Re: We're coming to the end.
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Reply #7 on:
August 24, 2012, 09:04:52 PM »
my heart goes out to you.. You surly have a lot hanging on your heart and emotions. I wish you all some comfort with this.
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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
willowtreewren
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Re: We're coming to the end.
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Reply #8 on:
August 25, 2012, 10:11:12 AM »
No words can really help, but keep your fond memories in your heart and your dad will live in you always.
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
shutterbug05
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Re: We're coming to the end.
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Reply #9 on:
August 25, 2012, 11:13:19 AM »
I really feel for you and your family, my family just went through this with my father 2 weeks ago. You might be surprised at what hospice can do for you. If he wants to come home they should be able to make that happen for him. My Dad did not want to be in a hospital and they made sure that he was taken home and they provided assistance with caring for him all the way to the end. He came home in March and passed August 8th. My father was only in the beginning stages of kidney failure though, and was not on dialysis. Ultimately CHF was the primary cause of death for him. You and your family will be in my thoughts and prayers...
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Les Wetzel, III.
NxStage HHD March 2012
In-Center HD May2009-June2010, September 2010-March 2012
PD June2010 - September2010
cinnachavez
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Re: We're coming to the end.
«
Reply #10 on:
August 25, 2012, 04:02:52 PM »
Well, he's stopping dialysis. Today was his last session.
Mom said that he's barely watching TV now, that's a HUGE change for him. He's rarely awake as it is.
So we're on the waiting game now. I need to call my mom back to get some more info. I will update after I call her in a little while.
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AnnieB
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Re: We're coming to the end.
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Reply #11 on:
August 25, 2012, 04:48:41 PM »
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dkay42
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Re: We're coming to the end.
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Reply #12 on:
August 26, 2012, 05:24:16 AM »
So sorry. You sound like a great daughter!
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Debbie Craig, home hemodialysis care partner
CebuShan
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Re: We're coming to the end.
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Reply #13 on:
August 26, 2012, 05:49:46 AM »
My heart goes out to you. Pregnancy is hard enough without all the other stuff you have going on! You & your family will be in my prayers.
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
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Kitty Cat
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Re: We're coming to the end.
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Reply #14 on:
August 27, 2012, 01:04:53 PM »
I am so sorry that you are going through this at such a time in your life.
I can tell you from experience, Hospice is a great group of people to work with. I had them in last summer to help my husband pass. They were very caring, the hospice we worked with told us that if things got too bad, they could have somebody in house 24 hours to help and keep an eye on him. That became necessary the day he passed. The nurse set up in his room and stayed by his side. She answered our questions, with grace & dignity. I have to say that they helped even more than I could have expected.
I pray for your family. This is a very difficult time. Sending you hugs and prayers
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cinnachavez
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Re: We're coming to the end.
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Reply #15 on:
August 27, 2012, 01:18:56 PM »
Well, my half siblings have been told and they seem to be taking better than I expected. Though there has been some drama with me and them, they are keeping my mom out of it and that is wonderful.
They are transferring him to the hospital in town (he was in a town an hour away) and he will be put into "terminal care" there. He is now only 20 miles from home rather than 70. That's great for my mom. Gas is crazy expensive where they live. She can be with him daily now for much less.
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jbeany
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Re: We're coming to the end.
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Reply #16 on:
August 27, 2012, 01:30:41 PM »
Ah, that will be much better for your mother. Adding a long drive home every night to a long day spent with him is not good for her.
Low levels of drama are good, too.
Peace to you and yours.
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"Asbestos Gelos" (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter". A term used by Homer for invincible laughter in the face of death and mortality.
cinnachavez
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Re: We're coming to the end.
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Reply #17 on:
August 27, 2012, 02:43:55 PM »
My mom told me that she had been writing down some of the "adventures" that she has had as a caretaker and she realized how much she really needed to take care of herself. My dad was in the hospital in Las Vegas last year and she would spend 8am-10pm at the hospital with my dad and then she was back in the hotel until it was time to go back the next day.
How she's not bald I'll never know.
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boswife
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us and fam easter 2013
Re: We're coming to the end.
«
Reply #18 on:
August 27, 2012, 03:04:16 PM »
sounds familiar
It's an awful time and i pray for peace..
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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
cinnachavez
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Re: We're coming to the end.
«
Reply #19 on:
August 28, 2012, 06:20:17 AM »
Dad passed away last night at about 12:45. Happened a lot sooner than I thought. He was ready.
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brenda seal
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Re: We're coming to the end.
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Reply #20 on:
August 28, 2012, 06:39:40 AM »
I am so sorry for your loss xxx
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billybags
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Re: We're coming to the end.
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Reply #21 on:
August 28, 2012, 08:04:27 AM »
cinnachavez , so sorry for your loss. He is not in pain now. Take care of your mum and your self, you have a baby to look forward too. Sending lots of hugs.
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cinnachavez
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Re: We're coming to the end.
«
Reply #22 on:
August 28, 2012, 08:15:59 AM »
I do take solace in the fact that he is no longer hurting. I know he's been tired for a long time. My mom said she was trying to call everyone before the shock wore off. I wish I had been there to help her with that part.
We've got to head out now (within the next few days) and unless we drive way up north, we're going to be meeting Hurricane Isaac. This shall be interesting.
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Kitty Cat
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Re: We're coming to the end.
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Reply #23 on:
August 28, 2012, 10:05:57 AM »
cinnachavez,
I am so sorry for your loss. I will keep you and your family in my prayers. Keep the good memories to get you through this time.
Prayers and hugs to you
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MooseMom
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Re: We're coming to the end.
«
Reply #24 on:
August 28, 2012, 10:29:28 AM »
I don't know which is harder...watching a loved one suffer or losing him/her altogether. My mom was in the hospital for 16 days with septicemia, having survived on dialysis for five years, and I will not apologize for being relieved when she died and was no longer suffering. I knew she would not survive the blood infection, and watching her suffer like that was utter hell. I am so sorry for your loss, but I am glad your dad is at peace at last.
Do be careful re Isaac. Looks like it may be a bad one.
Please take care.
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"Eggs are so inadequate, don't you think? I mean, they ought to be able to become anything, but instead you always get a chicken. Or a duck. Or whatever they're programmed to be. You never get anything interesting, like regret, or the middle of last week."
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