Just sharing

[The Wife]

When crisis strikes for the one who is ill, we do find our strength.  I think most caregivers do, but afterward, we need to deal with our own emotions in order to support the one who is sick at home or in a hospital bed.  I think that's why it's so important for caregivers/spouses to take time for themselves.

When my mom was dying, my dad refused to leave the hospital.  We tried to get him to do something other than sitting with her for twelve hours every day but then again, it was his wife of nearly fifty years, not mine.  There wasn't much I could do for my mom but I could help my dad by spending time in the hospital alongside him.  Whenever I couldn't stand it any longer, I'd go for a walk, have a cry, come back in, and find myself in a better position to be there for the both of them.

[okarol]

So many times I wished I could trade places with Jenna and take on her illness. I am not that I am all that tough, it's just that I wish so much for her life, that I would gladly swap my health for hers if it would give her a break from feeling bad. Caring for her, helping her, encouraging her, it's the least I can do given what she has to face. I don't know where this path will lead us, but I hope to make it a good trip, regardless of the obstacles thrown in front of us.

I think journaling is a good thing. I write on Jenna's caringbridge site and it helps. When I look back and read what I wrote at the beginning, I realize how far she has come, and that hope springs eternal!

[The Wife]

I can't imagine what it would be like to have a daughter with kidney disease Okarol.  When my daughter broke her arm or had the flu, I was like you, wishing it were me instead of her.  To see our children in pain is worse than anything. When I used to get into that place of feeling sorry for the life that has become my partners and myself, I think of the kids that go through this.  Bless their hearts.  And their mother's too!  Can I read Jenna's site?

[okarol]

Thanks Wife.
Yes - her story ---> http://www.caringbridge.org/visit/jennafranks

[Psim]

I know in many ways my ESRD is harder on my partner than on myself. Still, I get solid support all the time, and whenever something new happens, my partner will make sure I have the space to have my own reactions and not have to become the caregiver myself in a time of crisis. So when there are the occasional melt downs, I'm very happy to be there -- my partner is my rock, 23/7, so whatever support is needed in return is my pleasure to give.

Thank you for sharing all you have, Wife -- your writing is wonderful!

[KT0930]

My husband and I were talking about this just this morning. His mother had many physical and psychological problems, and started showing most of them about the time he was 10 years old, so as he pointed out, he had an early introduction to stress. This has served him well over the years, and he was drawn to his career because of it - he's in law enforcement. He does not get stressed out and worried about things that are out of his control. He simply looks at the situation, assesses what needs to be done, and goes in and does it. He said the hardest thing for him over the last year and a half, was essentially being a single parent (and he's my son, by a previous marriage). I told him that things were going to be better from now on, and his reaction was, "When you're ready." He truly is my rock, and I thank God for him everyday.

[MyssAnne]

That's one thing I miss. I live alone, and don't have that daily rock to lean on.  My fiancee and I talk every day, of course, and when we can,
(or when I am in distress), we see each other.  But the daily grind, the every day chores, that's what's the hardest for me.  I can't even take
my trash out to the back yard, I have to leave it on the porch for my son to come over from Indy once a week or so. It's just too much for
me to handle. Just doing the cycler and the cats is sometimes too much. But that has to be done! That and getting ready for work. Every thing
else goes by the wayside, including, a lot of times, making my own meals. A lot of times I just don't eat. I'm too tired.  Or I'm hooked up.

Value your caregivers.  It may be  your spouse/loved one, but they really do make a difference. 

[kitkatz]

I have my rock here at home. It is my husband. No matter how much the seas of life pound on me, I know when I come home there he will be to hold onto me. 

[ODAT]

... No matter how much the seas of life pound on me, I know when I come home there he will be to hold onto me. 

kitkatz, what a beautiful thing to say. It gave me chills. I just pictured abandoning myself to the sea waves standing strong and unafraid. Fortunately, I've actually been in the sea. Some have not. It is an awesome feeling. It just goes to show how strong you are to withstand those waves. 

[The Wife]

I was going to write something to express how much all of you touch my heart but the words disappeared.  Instead, I sit here and wonder what it is I can do to make my partner's life easier.  What I can do to take away the pain and suffering he goes through on a daily basis.  I think of all who have to endure this - the patients, the caregivers, the daughters and sons.  Through kidney failure, something beautiful appears.  It weaves from one heart to another, lifting, holding, bringing comfort in times of need. As I write these words, a song of many takes place outside my window.  We are like the song on the tree. 

[The Wife]

I was quite concerned the past few days.  We weren't sure if my partner caught the flu or if it was peritonitis.  If things didn't improve by this morning, he was to do an exchange using the twin bags.  The nurse wanted this taken to the hospital for testing...but, he had a better night.  The flu is moving out of his system and he's eating again.

A breath of gratitude is released...

[The Wife]

No matter how much the seas of life pound on me, I know when I come home there he will be to hold onto me. 

Kitkatz,  this sounds like a beautiful line in a song. 

[okarol]

Good to hear he's doing better!

[MyssAnne]

Glad to hear he's better!!

[The Wife]

Me too!  The other night he was having a hard time breathing, the chills, and other symptoms.  I almost called an ambulance but he said he didn't need me to....so I took his word on it.  Thankfully, the nurse confirmed that there is a flu going around.  This of course eased my mind but still, we needed to be sure it was the flu.  Well, good things sometimes happen and in this case, the flu was the good. 

There are questions I still want answered.  Like, what is the pain in his body about, why does he never have energy, those sorts of things.  When I told the nurse about this during another earlier conversation, she said, "Oh, he should have energy."  I then thought of the posts I read here.  I've brought concerns to their attention a few times and it seems  they forget as soon as they close his book, or are just to busy to follow through.  One time after I took my concerns to them, they checked his pth levels.  They were high.  The doc told him to cut back on his tums and take a new prescription.  BUT, he experienced some of the side effects of the prescription (I forget what it was.)  And now, nothing has been said.  No follow up whatsoever and he's still on one tum a meal instead of two.  Is anyone even concerned about his pth levels? 

I'd better stop myself before I go off on a rant and need to borrow kitkatz's big stick.

By the way, I pulled up your website Okaral.  Big hugs to all of you!

[The Wife]

I know I'm releasing the stress of the past couple of days.  And so, I sit here and return to my breath.

Slow...

Acknowledge that it's okay to feel all of my feelings, okay to be afraid sometimes. 


Return to the song of the morning...

Surrender...

Trust...

Gratitude...


I am so grateful for this space and for all of you. 

[MyssAnne]

That's the scary thing, TW, you gotta figure out, is it the renal problem or is it really just a flu? Which is not always 'just' a flu by the way..that can lead to complications too, which I am sure you are well aware of!

It's a scary thing for both patient and families.  Hang in there, you're doing a wonderful job with him!!!

[The Wife]

Thanks MyssAnne.  I just finished telling someone that everything from the simplest cold or flu has to be taken seriously with someone on dialysis.  Sometimes my head is turning in too many directions from all the stuff I'm trying to figure out. Good Lord, what a balancing act this is and it just never seems to quit.  One thing settles, then something else pops us.  That takes a back seat and another new thing appears.  Does it ever end?   

There is one good thing that took place.  I called the nurse again.  They're going to get sick of me but I'm determined to help give my partner a better quality of life.  I reminded them that his PTH levels are still high and what are they going to do about it?  She said they'll look at it at the end of the month when he goes in for his clinic day.  Well, that's still a couple of weeks away.  Perhaps, I'll spend the time writing up something...like a list with all of my concerns. 

[del]

This is the first time I've read through this thread. I really enjoyed the writing wife. I am a wife too. My hubby has been on diaysis for almost 11 years now. First pd then in center hemo now home hemo nocturnal. He is one of the lucky ones that have no other health problems and has loads of energy.  We do everything that we always did except for hooking up to a dialysis machine 5 nights a week.  There are times though when he gets fit up with everything and a little depressed and I have to be the strong one then. Our dialysis nurse is really good.  We do monthly blood work. I call the next day and get all the results to write in our files. If somethings not quite right we do things to try to correct it. I will definitely buy a copy of your book when you publish it!!!

[KT0930]

The lack of energy can be just because of the ESRD. Remember, dialysis only replaces 10-15% of normal kidney function, and so not all the toxins are being removed. No dialysis patient will have as much energy as a healthy person. As for PTH levels, my clinic would check them on every patient every 3 months, and more often (I believe), if it was above a certain level. Make sure they're monitoring it on a regular basis.

As for what you can do for your partner....keep being there for him. Know that you won't be able to take away his pain or suffering, but by accepting that he's not able to do everything he used to be able to do, and allowing him to do what he feels like doing, you can help a lot. Also, take time for yourself. Find some girlfriends to go out with once in awhile, go shopping, go to a bookstore or library, go get your hair done. Find something that YOU enjoy doing, and do it without feeling bad about it. You can't take care of him if you don't first take care of yourself.

[The Wife]

I knew that dialysis doesn't do the full job healthy kidneys do but no one told me it was only 10 - 15%.  No wonder he's so tired.  Why do some patients, such as Del's husband have "loads of" energy? 

Does this percentage you've given mean that the machine is working like someone with only fifteen percent kidney function?

When I spoke to the nurse about his lack of energy, she talked about medication for depression.  If someone is depressed and needs help with this, okay, but what is a drug for depression going to do if he still doesn't have the physical energy and/or is in pain? 

MyssAnne, thank you for bringing up how hard it is on you to take out the garbage.  It's the same with my partner.  This is a perfect example of the things I'm trying to understand.  Is he not doing something because of lack of energy or has he lost motivation?  I can see how tired he is and I also know he's feeling lost with his purpose in life.  He posted this.  I'm thinking, if you start with small things (like taking out the garbage), maybe you'll get stronger and then you'll be able to do some of the things you miss doing.  (Like going for walks with your wife:) Is my thinking wrong?

Now I'm wondering what complications colds or flu's have - the things I haven't been told about.

Don't worry about me.  I definitely take care of myself.   I've already learned the importance of filling my own cup before I can pass it onto another.

I really appreciate the knowledge you are passing along. 

[MyssAnne]

TW,  that's a good way to start, start small, small accomplishments DO mean a lot!  This week, for instance, I cooked my meals.

 It had been a LONG time since I had really cooked a meal, fresh ingredients, and all.  I not only had the motivation, I had the energy.

  That's the problem, having both, the energy AND the motivation.  One nice thing about cooking when you feel good, you can cook ahead
   so you have several meals (or entrees) for the nights you are tired.  When I am tired, really tired, my limbs are heavy. I literally drag myself
   out of bed, and those are the days I do the bare minimum. 

   I'm sure others will chime in with their experiences, so I'll stop here!

[The Wife]

I'm glad to hear you were able to cook your meals MyssAnne.  Sometimes I wonder how my partner would manage if he were on his own.  How anyone manages.  I'm not planning on leaving him and that is one thing I had to tell him.  He was afraid I would and I understand.  Sometimes I wondered if I had what what it took to do this, especially if 'this' meant many years. 

One great thing that is helping the both of us comes through the form of an x-box.  My partner's daughter's friend gave him her old one when she received a new one for Christmas.  This gives him something to do and I can already see his spirits pick up.  He said it keeps his mind active.  I see it as something that takes his mind away from how crappy he feels.  For me, it frees up the computer so that I can write.  A perfect solution for the two of us.  This has been a positive start to a new year.

When my partner has a bit of energy, he'll cook the things he eats and I don't, and if he's having a really good day, he'll wash the dishes.   For the first year, I was terrified he wouldn't make it.  Now, because of those who come here, I see that he can live for many years.  I also see that some things will never return to how they were, so now, I'm looking at how to create the best life possible considering the circumstances.  In regards to having the kind of energy that leaves one barely able to drag themselves out of bed, I can relate.  When I think back to the times I've had a terrible flu, I think I understand.  I guess this is kind of like the serenity prayer.  Know what can be changed, what can't, and have the wisdom to see the difference. 

[Psim]

When I spoke to the nurse about his lack of energy, she talked about medication for depression.

I'm a bit surprised she jumped right to depression without talking about lack of energy as a common physical symptom first.

Here are some IHD threads on fatigue:
http://ihatedialysis.com/forum/index.php?topic=6422.0
http://ihatedialysis.com/forum/index.php?topic=466.0
http://ihatedialysis.com/forum/index.php?topic=4210.0
http://ihatedialysis.com/forum/index.php?topic=5600.0

And one on depression
http://ihatedialysis.com/forum/index.php?topic=2572.0

I don't know why some people have more energy than others. My neph says it's just one of the many things that really varies from person to person with this disease. Good luck to you both figuring it all out.

[KT0930]

My understanding is yes, being on dialysis is like having only 15% of a functioning kidney. I could be wrong, since it was never really explained to me, but I have been quoted that 10-15% by people on this board, my dialysis nurses, and my neph.

Like one other person said, I think the reason some people have "loads of energy" and others have almost none just has to do with the individual. It could be partially emotional, but it could also have to do with how well their body deals with those extra toxins.

As for starting with small things and building up, I say yes and no. Yes, ask him to do small things around the house, but don't expect it to necessarily lead to more. The energy can come and go, and cannot always be built up. In the 15 months I was on dialysis, I had about three or four weekends when I really felt physically and emotionally well enough to get a lot accomplished. Those weekends were GREAT! But then there would have been many more weekends when I wouldn't get out of bed until noon, wouldn't get out of my pajamas until 3:00 or 4:00, and it would be a huge accomplishment to make a very simple meal for dinner.

Medication for depression will not help with physical pain - though there's one being marketed now that claims to - but could help some with the energy. Unfortunately, there's no way to know for sure if it's truly depression or simply a short-term motivation problem. Though depression is extremely common in people with chronic illness. I was lucky, I saw my neph once a month, and after about 9 months on dialysis, he looked at me and said, "How's the depression?" My husband was there that visit, and between the three of us - me reluctantly - we agreed I needed a prescription for it. It helped some, but it certainly wasn't a magic bullet.

Sorry this post seems a bit down, but I wanted to try and answer your questions as honestly as possible. I hope there's some useful information, anyway.

Good for you for taking care of yourself, for educating yourself and sticking with your partner through all this. He's lucky to have you!