Just sharing

[willowtreewren]

No matter how many questions you think to ask, there will be many that you didn't think of.

Browse through posts here at IHD for more ideas. 

Good luck.

Aleta

[The Wife]

Thanks Willow...

We woke at 4am and while I jumped in the shower, my partner waited for his last bag to fill.   A cup of coffee, a muffin, and out the door we went an hour later.  Five hours later, we were at the hospital.

We spent five hours in the hospital only to discover what we already knew. Too much information was missing to determine whether my parnter is eligible for a transplant.  Like the Hep C issue.

Since the treatment nearly killed him, he can't do interferon.   If they find any trace of active Hep C, a transplant is out of the question.  We have to go back to Vancouver to see a specialist about this. 

We stop here. 

And wait for the next call.

[petey]

Wife --
I, too, always read and re-read your posts.  You say the things that I'm feeling but never say for myself.  I feel that I can vent and share when I read your posts because I think to myself, "Yes!  That's exactly what I was feeling (or thinking...or questioning)."  You give my thoughts words.  I'm not good at sharing my inner most thoughts and fears, but, through you, I can get them out -- even if it's only in my own head.  I thank you for that.
Petey

[petey]

Yes, a reminder that it's easier than being the one with kidney failure.   I don't know how my hubby stands it.

If I had been the one with kidney failure instead of Marvin, I'd be dead by now.  I would have given up.  I would have quit.  I would have thrown in the towel.  And I would have done this a long, long time ago.  I don't know how he has lived with it -- and through it.  He's a much stronger, braver, better person than I am.

[cariad]

I have to remind myself that it is easier than being the one with renal failure.

Yes, a reminder that it's easier than being the one with kidney failure.   I don't know how my hubby stands it.

If I had been the one with kidney failure instead of Marvin, I'd be dead by now.  I would have given up.  I would have quit.  I would have thrown in the towel.  And I would have done this a long, long time ago.  I don't know how he has lived with it -- and through it.  He's a much stronger, braver, better person than I am.

These statements surprised me. I actually disagree completely. I think it's harder being the one watching someone you love suffer and being powerless to do much about it, and having to always be the person that your partner relies upon.

I am the one in renal failure in my household. Maybe it's because I have lived with this so long that I really don't know anything else, or maybe it is because I feel that my experience has been ridiculously easy compared to so many others in renal failure. I wonder if you all are underestimating how difficult your situations truly are? These exchanges are interesting to me, because I often find myself wondering how and even WHY my husband does what he does....

Thanks for sharing!

[YLGuy]

I have to remind myself that it is easier than being the one with renal failure.

Yes, a reminder that it's easier than being the one with kidney failure.   I don't know how my hubby stands it.

If I had been the one with kidney failure instead of Marvin, I'd be dead by now.  I would have given up.  I would have quit.  I would have thrown in the towel.  And I would have done this a long, long time ago.  I don't know how he has lived with it -- and through it.  He's a much stronger, braver, better person than I am.

These statements surprised me. I actually disagree completely. I think it's harder being the one watching someone you love suffer and being powerless to do much about it, and having to always be the person that your partner relies upon.

I am the one in renal failure in my household. Maybe it's because I have lived with this so long that I really don't know anything else, or maybe it is because I feel that my experience has been ridiculously easy compared to so many others in renal failure. I wonder if you all are underestimating how difficult your situations truly are? These exchanges are interesting to me, because I often find myself wondering how and even WHY my husband does what he does....

Thanks for sharing!

and then there are those of us who do not have anyone.  Having ESRD and being a single dad of three can be very hard.  Reading these posts makes me really miss having someone to care for or care for me. 

[Des]

Ylguy,

It must be VERY hard for you to handle this whole thing on your own. My heart goes out to you. Please hang in there and talk to us whenever you feel that you need someone.
Hugs   

[The Wife]

I wonder if you all are underestimating how difficult your situations truly are? These exchanges are interesting to me, because I often find myself wondering how and even WHY my husband does what he does....

Thanks for sharing!
[/quote]

I understand this...and yes, it's hard to watch someone you love suffer.  Being powerless can tear your heart out.  And I'm with Petey on this one.  I would have been done a long time ago if I were the patient.  Well, at least that's what I think.  NO matter what side of the machine we're on, we all have to deal with kidney failure.   

Viguy - I don't know how you manage on your own with three kids.  My heart goes out to you.  I wish help could come to you.

[The Wife]

I have to remind myself that it is easier than being the one with renal failure.

Yes, a reminder that it's easier than being the one with kidney failure.   I don't know how my hubby stands it.

If I had been the one with kidney failure instead of Marvin, I'd be dead by now.  I would have given up.  I would have quit.  I would have thrown in the towel.  And I would have done this a long, long time ago.  I don't know how he has lived with it -- and through it.  He's a much stronger, braver, better person than I am.

These statements surprised me. I actually disagree completely. I think it's harder being the one watching someone you love suffer and being powerless to do much about it, and having to always be the person that your partner relies upon.

I am the one in renal failure in my household. Maybe it's because I have lived with this so long that I really don't know anything else, or maybe it is because I feel that my experience has been ridiculously easy compared to so many others in renal failure. I wonder if you all are underestimating how difficult your situations truly are? These exchanges are interesting to me, because I often find myself wondering how and even WHY my husband does what he does....

Thanks for sharing!

[The Wife]

I messed up the quote and requoted...

Anyway...

How do we do this?  Someone I know asked me this question a few times.  Do we really have a choice?  Well, I guess us caregivers could walk out the door but since we're here, we know we're not going to do that.  Doesn't mean we (I) haven't thought about it.  I think about a lot of things.  But thinking isn't going to change anything.  Except my perspective. 

Ten hours to go to a medical appointment, five hours in the hospital, a trip off the island. 

A trip.  Ten years since going to Vancouver.  A ride on the ferry.  Observing the small whitecaps, other boats, people.  Seeing skyscrapers that really do scrape the sky.  A coffee after the apointment.  There it is.

Going out for coffee.  Something we never do.  Eating our subway sandwhich on the ferry while sitting outside.  Out for dinner.  Ah, another gift.  Dinner on a seat with a waterfront view.  Meeting someone we know.  Conversation.  Laughter.  Enjoying the warm breeze.  Another view of active pass.  The ships horn. 

Finding joy in moments of an exhausting day.

[okarol]

Simple pleasure are good - it's nice when you can grasp them at the moment - sometimes the stress gives us blinders. Reminds me to savor the good stuff - thanks Wife.

[Hanify]

Oh Lord, here we are arguing that the other person is worse off than us!  I agree in that I always feel it is worse for Paul (my husband and caregiver) than for me.  That's because as the patient you know where you are in your head.  The caregiver gets to do all the boring stuff, as well as contending with the whole feeling of failure - i.e not being able to FIX it!  Lets just all agree that it's a bloody bugger of a thing, and we're all amazing for dealing with it.  Pat ourselves on the back and do three cheers.

[Des]

hurray hurray hurray for caregivers!!

[redz812]

Although I can't call myself a true caregiver, my husband does home hemo alone during the day while I am at work. So although I am not here helping him during dialysis, I do just about everything around the house that makes the house run.

My loneliness is what gets me down. Sure, I get out to work, shopping, pedicures and such but there is no fun in my life. I miss my husband. I miss doing things with him. I miss the spontaneity in life.

So I hear where you are coming from although maybe in a different way. Chin up and we carry on.

[paris]

The Wife,  I always look for your posts to center me and give me some peace.  Thank you.

redz,  I am the patient, but I relate to what you wrote. I feel horrible that my husband is missing out on so much because I don't feel like doing much of anything.  He said the other day that he hasn't had a real vacation this summer and I felt so guilty.  Traveling was a huge part of our lives and now, well, it drains me to even think about it.  These were suppose to be the good years, but I changed all of that and it is very hard not to feel responsible.   It isn't good on either end, is it?  I would rather be the patient though.  I don't want anyone else to feel this way.    I liked your last sentence --"chin up and we carry on" -- yes we do.   

[The Wife]

Thanks Paris. 

Hanify - I don't see anyone arguing...perhaps, just stating what part of the bench they're seeing the view from - you know, our own perspective.   If I say something is hard on me, in no way am I comparing or saying it's worse than what my hubby experiences. 


Anyway....

It's been one hell of a week.  Actually more than a week.  The trip to Vancouver had it's price.  Two days before we left, his neph changed his bp prescription to Atacand.  It dries out the lungs and causes one to catch a cold easier.  At least that's how I understand it. 

Well, two days later, my hubby became quite ill with a lung cold/infection.  He feels he caught it from the hospital in Vancouver.  It seems that whenever he goes to the hospital for something or the doc tries to change or fix something, something else goes out of whack, or he catches some horrible bug that nearly knocks the life out of him.   He's still quite ill. 
           
We all have our stresses and we all feel for each other, but no matter who we are, be it patient or caregiver, we're in it together.    I may not be feeling the physical effects my hubby is - but listening and observing can at times, be pure torture.

I breathe....
I look out at the trees and the blue sky...
I exhale...

It is a beautiful day.

[paris]

I am sitting here breathing with you.  One breath at a time. Some days that is all one can do.   

[petey]

           
We all have our stresses and we all feel for each other, but no matter who we are, be it patient or caregiver, we're in it together.    I may not be feeling the physical effects my hubby is - but listening and observing can at times, be pure torture.

There you go again, The Wife ... giving black-and-white words to my innermost thoughts.  Were you reading my mind when you wrote this?

As always, thanks for sharing your words.
    

[The Wife]

Paris - 

Petey - 

I was woken the other night at two in the morning by the sound of a strong wind blowing around the branches outside my window.   It wasn't the only sound that startled me awake. 

When I walked into the other room, my husband was doing a chi gong exercise called 'swinging arms.'  The sounds coming from him were also startling.  "What are you doing?"  I asked, feeling confused and not sure of what I'd just walked into.

"I feel like I'm drowning."

I couldn't understand.   The antibiotics had started to work; Why this drastic turn?  In my confused state I watched as the tube moved like a snake on the ground with every arm swing.  "Do you want me to call an ambulance?"

No he didn't.  He would sleep upright in his chair if need be but he wasn't going to go to the hospital.  If only we could get oxygen without having to deal with all the other stuff that takes place in hospitals.  If only I could help him.

Last night was much easier.  He slept. 

There are moments when sheer terror can grab at our hearts, where a feeling of complete helplessness can take over and all we can do is watch, and wait until the storm ends. 

And sometimes, breathing with conscious awareness, is all we can really do.

[The Wife]

And sometimes, all we can do is cry.  And cry in the most inappropriate places.

On about day six of this lung infection, I stood, waiting for the bus to take me to the pain clinic.   As I waited, I witnessed a man in an electric wheel chair thow himself out of his chair when he hit the curb.  Watching as he sat helpless on the road, I started to cry. 

I just didn't have it in me to see anymore suffering.  After a few minutes, strangers stopped their cars and helped the man back into his chair.  I cried even harder, noticed the bus, and wiped my tears.  Kindness always moves me.

When I arrived at the pain clinic class, I poured a glass of water and promptly spilled it.   After I cleaned up the mess, the person sitting next to me spilled hers.  "Can you get me a paper towel from the bathroom?"  she asked me.

Usually, I'm the one that is happy to help but not on this day.  And not there.  "I'm not here to be anyone's caregiver,"  I replied.  I didn't know what else to say.

At least she understood.  Or did she?  Can any of the people I sit around the table with from Monday to Wednesday afternoons truly understand what it's like to live in pain and be a caregiver at the same time? 

I hope they never do. 

[The Wife]

I've gone through this long enough to recognize burnout.  It's during this time, I need to speak out and say no to others outside of my family.  I don't like it and maybe others don't like me because of it.  Perhaps, they think I'm cold or uncaring but I'm not. 

Caring for ourselves is important.  Nurturing ourselves is necessary. One of the ways I do this is through writing.  Words on the computer screen reaches outward and returns.  They point me toward what I need to take care of within myself. 

Do I (we) need to simply be heard?  Do we need rest?  Or do we just need a hug and encouragement to help us get through the tough periods?

What do you need?

[breezysummerday]

Joie,
Is wayne producing a lot of sputum?
Check the color of his extremities,
are his feet the proper color?  Can
you listen to his lungs with a stethoscope?
If he sounds especially 'wet' or 'raspy' I would
do what I think is best and call for some help.
My ray got mad at me for taking him to the
emergency room.  "Not going to do any good"
He called me from dialysis and wanted me to pick him
up because he was feeling weak.  He got care at the
dialysis center, tylenol and gentimicin.  But with the
fever and dialysis, he had too much fluid loss resulting in
low blood pressure.  He got back 2 liters and they pulled
his perma cath because it was infected.  My point is if
wayne gets angry with you for over riding his wishes,
so be it.  You will know that you did everything
possible to help.   

And I love your writings.  I can't imagine coming to
IHD and not reading your posts.  Even re-reading them
to remember how during a darkest hour, my spirituality
was rejuvenated by your thoughts.  You put into words
'my confusion'.  One of your writing has become a form
of meditation for me.  (hope not too much information
or weirdness, please)

So please let me, really us, know how things turn out.

 

debs

[The Wife]

Deb,

Wayne has gone to his GP and did so as soon as he felt this thing turn into pnemonia. He's had it before and knows the taste.  Anyway, the doc gave him an antibiotic but he just isn't seeming to get any better.  Well, a little.  Whatever caused the drowning feeling last night passed.  I guess his chi gong did something.  The movement he was doing does work the lung meridian and he said he felt like something was trying to break free.  He's not spitting any sputum up but is coughing.  His throat is so raw, he's lost his voice.  He still has a few days of pills left and if this isn't gone by the time they are,another trip to see the doctor will be in the works.   In the past, I have overidden Wayne's wishes and he's also asked for me to call him an ambulance.  I've also learned to trust his intuition.

A trip to the hospital is such a big deal.   If it's not an emergecy, he has to take the bus.  With the neropathy in his feet and the distance required to walk, it's not easy.  He also doesn't want to go to the hospital because he doesn't want another chest x-ray.  They're always x-raying his chest.  This past month has been filled with medical appointments.  There's the kidney care team, his gp, the cardiologist, the pacemaker clinic and the trip to Vancouver to see the transplant team.  No wonder he doesn't want to go anywhere.

Thanks for the feedback on my writing.  No weirdness at all. 

Hope Ray feels better and that you're getting some good down time.

Hugs, Joie

ps.  I'm enjoying the pain clinic classes.  They're quite informative and we have great discussions.  Once finished, I'm going to see about signing up for the art therapy and yoga classes. 

[The Wife]

He called his doctor two days before his antibiotic ran out and the doctor ordered a stronger prescription.   This is a nasty virus that is going around but he's slowly getting over it.   

I take a deep breath and release the worry I've held through this...

[paris]

I wish I had the words of peace to give you strength.  Instead, I selfishly come here for my own peace and calm.  I,like so many here, find your thoughts soothe me and make the day bearable.  I will continue to keep Wayne in my thoughts and you, also.  Him for healing, you for inner strength and calm.    Love to you both