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Author Topic: Rant...so frustrated  (Read 3737 times)
LizzzyLizzzard
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« on: July 21, 2015, 06:19:55 AM »

Hi Everyone

I just got off the phone with my sister and my siblings drive me crazy.  My dad is supposed to be scheduled for fistula surgery sometime in August.  When I talked to my mom about the future surgery I told her that the surgery was important and they need to decide if they want to go ahead with it.  So my sister is blaming me because my dad is refusing the surgery and she says that my mom is telling everyone (I have 5 siblings) that I told her that he doesn't need the surgery.  I talked to my mom told me she told my sister that it is his choice and he is refusing to do it.  He keeps telling everyone he feels fine.  My Dad doesn't entirely understand why he needs it and associates pain with illness, so if he is not in pain he can't possibly be sick.  I told my sister that I am not going to add any opinions anymore because I always get "blamed" for the decision my parents make.  My Dad is 74 and very difficult to deal with, he would refuse all doctors appointments etc... if it weren't for my mom dragging him to the appointments.  I feel bad for my mom she is his care giver and he is such a pain in the a@@, he doesn't want to go to the appointments or take the tests.  He is always joking about it saying he is strong and doesn't need to go anywhere, his kidney function is at 15%.  I told her this morning that if he doesn't have the fistula, then one day he will be in the hospital with a tube in his chest.  I am just going to keep my mouth shut and let the rest of them decide what is best.........Thanks for listening

 :stressed;

Liz
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Tío Riñon
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« Reply #1 on: July 24, 2015, 07:40:26 PM »

Greetings LizzzyLizzzard:

I empathize with your situation, but don't beat yourself up over it.  My father is a few years older than yours and has been on dialysis for the last 4 years.  He is a challenge as well.  He refuses to participate in his medical care in any way.  He hasn't modified his diet, drinks fluids to his heart's content, doesn't take his medications regularly, and has refused to get a fistula despite the admonishment of his nephrologist (he has a tunnel catheter).  He also arrives late to treatment and requests early disconnections at times.  Our family has tried to encourage him to be involved and make good choices, but he has decided that he knows best and will do as he pleases. 

In the end, it is his life.  If he doesn't want to do something, so be it.  We've led the horse to water and he doesn't want to drink it.  The horse will have to live with the consequences.  I know it is hard, but sometimes necessary.  Just offer your opinion and allow him to proceed as he wants.  You've done all that you can.

Good luck and feel free to vent here whenever!
« Last Edit: July 25, 2015, 09:05:00 AM by Tío Riñon » Logged
Michael Murphy
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« Reply #2 on: July 25, 2015, 05:47:53 AM »

My explanation to your father would be the fistula is his choice, but if he does not have it installed the future is the same.  The difference is with the fistula he can shower and go swimming.  Sooner or later he will have to deal with the reality of ESRD.  I too did not want to hear about dialysis,  I eas waiting for symptoms before I would start.  The only smart thing i did was have the fistula installed.  Thank God, it mad the start of dialysis much easier.  If your father wants to skip the fistula worst case is he ends up in the hospital with a chest cath and can't shower for 6 months.
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Jean
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« Reply #3 on: July 27, 2015, 03:43:20 PM »

Gosh Lizzy, you are in a tough spot. Evidently no one in your family wants to hear about it. You have done your best, so be it. Not a great thing to be able to say I told you so, but you can not drag any one to do dialysis if they dont want to. Dont be hard on yourself at all, altho I know, that is easier said than done. Maybe Dad will have to get a great deal sicker before he wakes up.
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One day at a time, thats all I can do.
PrimeTimer
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« Reply #4 on: July 27, 2015, 07:09:51 PM »

My mother was the same way (she had congestive heart failure) and over the course of many years, I spent a lot of time, including taking time off from work and energy dealing with her health because she'd let things go until it became an emergency and being upset and stressed over getting her to go to the doctor, etc....wore me out and probably took more out of me than I should have let it. If I had it all to do again, I wouldn't. Let go while you can. We cannot be responsible for others bad decisions. Sorry if this sounds harsh but I am being honest. When I look back on all the years/time I spent just on her stubborn ways, I see now where perhaps I shouldn't have. I loved my mother very much, she was my best friend but gosh darn it, she took a lot out of me.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
LizzzyLizzzard
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« Reply #5 on: August 04, 2015, 07:41:08 PM »

Thanks everyone I really appreciate the responses. My dad is scheduled for surgery this week to get the fistula, he is still insistant that he doesn't need it as he feels fine. I have opted to not be there and let other members of my family deal with it.  I just make myself sick over his health so I am trying not to worry so much about it and hope that he will come around.
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Michael Murphy
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« Reply #6 on: August 04, 2015, 08:17:10 PM »

From what I have read there is no advantage to starting dialysis early.  I personally waited for a sign from God.  The doctors refer t them as symptoms.  When and if he shows symptoms then he can worry about dialysis.  Getting the fistula early is important since it gives it time to mature.  I know of at least one patient that had a fistula installed over five years ago and is still,not on dialysis and is doing fine.  The one thing I would advise is continue learning about dialysis cause if he has to start it ca be terrifying on the first day.  And a close relative that can give advise and help is a wonderful thing.  Good luck
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PrimeTimer
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« Reply #7 on: August 04, 2015, 08:25:39 PM »

Thanks everyone I really appreciate the responses. My dad is scheduled for surgery this week to get the fistula, he is still insistant that he doesn't need it as he feels fine. I have opted to not be there and let other members of my family deal with it.  I just make myself sick over his health so I am trying not to worry so much about it and hope that he will come around.

Sometimes it's hard to take a stand on things in order to help a loved one (and save our own sanity at the same time) but the more times you do it, the easier it gets. If others are going to be at the hospital with him, there's no reason to put yourself through it and the behavior or attitude he will probably exhibit. We cannot be of any good to anyone if we allow ourselves to get run down.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
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