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[Raynbow123]

Hello all, what a great place to come and vent, chat, discuss or winge! My partner was diagnosed with end stage kidney failure and been on dialysis since August. I find it hard some days to remain my chirpy self especially when he is feeling down and non engaging. I feel like nothing I do helps even though I do everything for him, look after the house, work, sort his food/packed lunch for work, read and educate myself on the disorder (looking at natural options, studies on this and that etc). No matter what I do I feel it's not enough. Is it me or does anyone else experience this as the care giver. Does it get better? Thanks x

[Marilee]

Hi Raynbow!

I'm fairly new here, too, and am my hubby's partner in peritoneal dialysis. Like you, I'm all about the food, inventory, housework, research and chores in general. And just like you there are days where I feel totally inadequate, even though he says kind things like, "If not for you, I'd have died long ago." When I'm suffering, it's when I am not accepting the situation. I'm in a state of grief and denial and I want it to be different than it is. Last year at this time, I couldn't bring myself to putting up flowers in the pots on the front porch - it seemed so unimportant and trite. Last year at this time, we got our wills updated. For months we just moved from one day to the next as best we could.

But I potted up flowers this week and it made me happy, so it MUST be better, eh?

This might sound weird, but I think that it's important to feel rotten, grief-stricken, helpless, angry, and frustrated. This situation is really hard, and it's happening to someone you love. I think I'd feel worse if this DIDN'T make me feel rotten from time to time.

There will be fine days (or moments) and scary ones - a real rollercoaster - and there's no guarantees about any of it. Cheating death is hard.

My only advice is to fully feel what you feel and know that it's actually an expression of love.

[PrimeTimer]

I've been at this for almost 5 years now and still trying to figure out the million dollar question.
At times I feel a real mess, other times hopeful. Marilee is right; don't deny yourself your own feelings, even if those feelings are of anger. I'm angry that my husband has ESRD because he's already had a hard life. I'm angry because I've already had a hard life and THEN I am angry because since marrying, we've had a hard life together! One crisis after another...and now I feel as tho I've got nothing left to give. No future to look forward to, etc, etc...the whole ball of wax is depressing and tears me apart. BUT...I am slowly coming around to doing things just for myself that I enjoy and telling my husband why. Communication and honesty between the two of you is key. It is making me feel strong and less depressed. I am becoming more active towards "normal" activities" again. By the way, while you learn about dialysis be careful to not give up things you enjoyed. It's all about the small things and making goals to reach higher. Marilee's talk about planting flowers in her pots really hit home with me. So that is one piece of advice I can give...continue doing things you enjoy and resist the urge to "sleep on it". Don't think too hard about it. Keep as much as your individuality as you can and take care of yourself so that you can be there for your loved one. Don't let your health or mind go. Stay as active as possible doing things you normally would do on your own. I think this all comes down to going thru a process and each day is a step to take in that process. Sooner or later we learn how to navigate life with a loved one with ESRD and on dialysis. Meantime, come here to talk, vent, cry, laugh and please share what you learn. PLEASE! It is so appreciated whenever someone can open up and share what they experienced and learned. Wish you the best. Take care. 

[Paul]

 
Hello Raynbow123, welcome to the site.

[Charlie B53]

Hi Raynbow123 and Welcome to IHD!

Dialysis sucks, there is no doubt about that.  But once 'adjusted' to treatments, learning to balance diet and fluids, along with working treatment schedules in with your 'altered' daily life, it becomes sort of your new routine.  And life goes on.

As with most everything else in life, it is what you make it.  Learning how to live may be more difficult for some than others.  I try to think of myself as one of the more fortunate ones.  I cope.

Right now I think one of my biggest problems is that Seasonal something Disorder, SAD.  That lack of light and getting outside.  I swear it really does wear on me.  More tired and grouchy.  I need to get outside in the sun and I will feel better.  Maybe it has something to do with my body making it's own Vitamin D cause taking the pills doesn't seem to work well enough.  Natural vs synthetic, no contest, natural is better.

Same can be said for having a functioning kidney(s).  I'd much rather have my natural kidneys working, but if I can't, I'll certainly take Dialysis.  That's a no-brainer!


You have come to the right place to find suggestions for coping.  Post all you questions, vent your frustrations, we will be here for you both.

Take Care,

Charlie B53

[LorinnPKD]

In many ways, it's harder on the caregiver than the patient.  I grew up with an ESRD parent and now I'm ESRD myself, so I've seen both sides!

Charlie is so right about this becoming routine and easier.  Eventually it gets easier, and you get a little more freedom as you figure out what aspect of the illness needs work and what resolves on its own.

It's important to not let this be the main focus all the time.  It's really important to do things for you -- what do you love to do?  Doing those things when you can will re-energize you and help give you space and perspective to help face this together.

Welcome!

[cassandra]

Welcome to the site Rainbow123


   


Take care, Cas

[MooseMom]

Hello all, what a great place to come and vent, chat, discuss or winge! My partner was diagnosed with end stage kidney failure and been on dialysis since August. I find it hard some days to remain my chirpy self especially when he is feeling down and non engaging. I feel like nothing I do helps even though I do everything for him, look after the house, work, sort his food/packed lunch for work, read and educate myself on the disorder (looking at natural options, studies on this and that etc). No matter what I do I feel it's not enough. Is it me or does anyone else experience this as the care giver. Does it get better? Thanks x

Welcome to our community!  Do please come by and vent whenever you want to.  You've earned the right!

Please do not undertake the extra burden of remaining your chirpy self, ESPECIALLY when he is feeling down.  If he is feeling that way and is "non-engaging", that's OK; sometimes it may be better to just let him be.  You know him better than we do, so that's your call.  It is nice to be able to be optimistic, but you do not need to give a 24/7 Academy Award winning performance!

The things you DO do, though, ARE good enough.  I imagine you are both feeling that you have control over nothing, so zeroing in on the things you CAN control is very helpful.  Educating yourself is very important because that will give you the knowledge it takes to feel a bit more in control over what is happening.  Living in ignorance can be very scary.

Many in our community are caregivers/spouses/partners of people with ESRD, so there is a wealth of information to be had here!

[Raynbow123]

Thanks all for your responses. It certainly helps just hearing others and your ways of managing.

I definitely agree that keeping my own hobbies and likes is important and do give him space when needed. I guess, the hard bit is dealing with the ups and downs of emotions (you never know what you're going to get after a session) and the lack of interest that comes with lack of concentration, tiredness, lethargy etc. How does this affect you and your loved ones?

x

[Marilee]

I think we are somewhat blessed in this regard: My hubby does peritoneal dialysis at home, at night. PD takes about 9 hours each day. As a result, we don't have the bigger swings that I've heard come with hemodialysis.
But it still has taken an emotional toll: I think my hubby feels or has felt:

• Remorse or guilt that this is our life now
• Inadequate because several of his chores became my chores
• Sad because he just doesn't have as much energy or strength to do many of the hobbies he enjoyed
• Angry that it cannot heal and therefore this is the way it is for the rest of his life
• Fear that it could become so much worse
• Gratitude for all the help from the VA Hospital folks
• Cautiously hopeful for the artificial implantable kidney that is being developed

And of course, I wish I could make all the bad feelings go away.
 
But we're coming to accept the new reality and the grieving/mourning process is easing up. We've got the hang of the routine now so we're not so scared anymore. We've weathered a few emergency situations and come out OK. He's finding hobbies that he can do. I spent a lot of time this year playing The Legend of Zelda - Breath of the Wild on the Nintendo Switch: A beautiful alternate reality for me ; playing my musical instrument & singing; walking the dogs; learning about phosphorus and diet (that turned out to be a big 'hobby').

Accepting the truth of the moment does not mean agreeing with it: It means acknowledging that it is what it is (without also saying, "Yes, but..."). With acceptance comes a bit of peace and with peace comes the ability to move forward.
 

[PrimeTimer]

I guess, the hard bit is dealing with the ups and downs of emotions (you never know what you're going to get after a session) and the lack of interest that comes with lack of concentration, tiredness, lethargy etc. How does this affect you and your loved ones?

x

For so long it made me or, I should say, drove me mad. Afterall, there are things that need to get done (chores) and things I want us to do together. It would really upset me when my husband couldn't do things. Even after 5 years of this I am still learning to deal with it. But I've gotten better. I try to look at what is really important and prioritize. For instance, who cares if no one has made the bed or taken the garbage out? While annoying, these things are not life threatening. I have Fibromyalgia so have to pace myself and now that is how I look at my husband having ESRD; he has to pace himself. He still works fulltime and wants to. He's certainly no slacker. But I hate it when neither of us can get things done right away but more and more I am accepting it. For instance, if neither of us can take care of something right now today, I know that probably tomorrow we can do it. Or sometimes the day after that. So long as it eventually is taken care of. And when hubby isn't up to doing things, I always have something in mind that I can do by myself, whether it is something fun or chores. I'm starting to feel comfort in that "routine". It's like having a Plan B. Takes time but you will find your "groove" too. That doesn't happen overnite but it will happen.   

[LorinnPKD]

I was just thinking about you this morning, Raynbow123.

Have you ever heard of The Spoon Theory?  A woman named Christine Miserandino dealing with an exhausting chronic illness (Lupus) came up with a wonderful visualization.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Some days you and your partner get more spoons than others.  Friday and Saturday I had very few spoons but today I got a handful so I am making the most of it.

[Michael Murphy]

The only good thing I can say about Dialysys is that it beats being dead.  This is my sixth year of this lifestyle, and in that time I have learned to deal with the crap this treatment brings.  This is like a miserable job that you will work your whole life at without a vacation or any time off. Never the less on a non Dialysys day I will wake up and go outside and it is just a beautiful day with the sun shining and a light breeze some large fluffy clouds and I remember why I put up with Dialysys.  In my life on dialysis the occasional glorious days more than make up for the crappy dialysis days.  My first year on dialysis was horrible.  However as time went by the treatments became easier to deal with and I developed coping methods to deal with the crap.  I stopped looking at dialysis as a never ending series of treatments and began to treat each week at a time.  Three treatments and I was done with this weeks dialysis and every Friday I celebrate the end of this weeks schedule.  Next week is next weeks problem.  The other thing that helps is there is numerous research projects that are trying to end this treatment.  The one I track is the UCSF (Univerity of California San Fransico) Implantable Artificial Kidney project that is currently scheduled to begin testing in 2020.  There Has already been testing of the components as a Wearable Artificial Kidney and the results were outstanding.  If any of these research projects work out Dialysys for many of us will end up being a bridge to a better future.

[Marilee]

LorinnPKD - Thanks for posting the link to the Spoon story. My hubby really related to it, said "That's EXACTLY what it's like", and I think he's glad to have an analogy that he can share with others.

[Simon Dog]

I agree with the spoon theory.  Also remember, lose your spoon, spend the night in the box.

[LorinnPKD]

Marilee, so glad to hear that resonated with your husband!

I do spoon checks several times a day and it helps me plan ahead and feel like I have a little more control over my day...

@Simon Dog, ha!  I love that movie.

[Simon Dog]

@Simon Dog, ha!  I love that movie.

What we have here is not a failure to communicate.