How in the world does one keep going?

[Jeannie0214]

I have a loved one on dialysis and he does not talk about his feelings.  I do not know if I struggle with his continuation and he is more resigned or what is going on his mind.     How can I help him?  I have been seeing this man for 15 years and feel as if he is my mainstay.  We really enjoy getting together and talking...he, at times, makes cryptic remarks about his dying.  I tend to ask him how he is feeling about this and he quickly makes a joke or sloughs off my concern.   I KNOW he is HURTING!  He spends more time in bed than living...only to go back to dialysis again.   I want to know as much as I can about others and their struggles so I may be with him in a productive manner, and to support him appropriately through his procedures.   

[ABIII]

Jeannie: Hello and welcome to the board. I am very new to this forum which I have found to be most helpful, and also new to dialysis. How long has your friend been on HD? I only ask because you mentioned he spends so much time in bed. I know that it has taken my center more than two months to sort out everything, adjusting meds and the HD to suite my needs and make me feel somewhat human again. I was getting to the point where I thought, “This is it, and you’re never going to feel any better”. Thank the powers to be, that changed. Encourage him to join us, for me just hearing from people in the same predicament helped immeasurably. Keep us posted and let us know if we can assist in any way.

Arnold J.

[Sydnee]

Welcome both of you. 
It is hard to say what is the right thing to say or do for any particular person. Ed and I started joking around that he is one of the "walking dead". We want to get shirts made that say zombies don't want brains they want kidneys.
People don't understand when you say you are on dialysis that it's what is keeping you alive. It a totally foreign concept to most people.
If he is however depressed try to be supportive and get help for him. Dialysis does wipe you out. Ed spends more time sleeping since beginning dialysis in Jan 2012 than he used to.
Have you gone to any "patient care meetings"? If he wants you there I think that would be helpful  (but then I'm one of those people that always drags someone with me when I see a dr)   

Welcome again. I'm sure others will come along and say hello and offer advice. They are quite helpful here.

[jbeany]

He's started life support.  It's hard not to think about your own death once that happens.  It's harder to talk about - and men are doubly handicapped with a culture that expects them to tough it out and not cry.  Even if he doesn't die for years and years (which IS possible, really), he's mourning the death of his health, his lifestyle, and his expectations for the future.

Unfortunately, asking a man how he's feeling is a sure way to shut him down.  Maybe you could approach it from a practical angle?  Has he made plans for both living and dying?  Talking about his concrete plans for the future might be easier for him than asking him how he feels about it.  Simply stating that you plan to stay with him no matter what might be the biggest help. 

 

[Poppylicious]

Hi Jeannie and  to ihd!

My Blokey rarely talked to me about his feelings when he was on haemoD but I was fully aware that he was scared and hurting.  I was there if he needed a cry or a rant, and I listened when he needed to talk, but I didn't ask him outright how he felt about it; I just made sure he knew he could talk to me if he wanted to.  Now he's had a transplant I know when he's feeling down about his kidneys because he talks about dying, but in a jokey way.  It's his way of dealing with it.

As jbeany says, just letting him know that you intend to be there no matter what, may be the biggest help. 

*huggles*

[paris]

Welcome to IHD.  Being there is the most important thing.  He will talk when he wants to so just be patient and remind him you are here for him.  We like to be reassured.   

[Dman73]

It would be a lot tougher if he did not have you as a friend so he is very fortunate.

A new patient will sleep a lot until their body adjusts to the new regime and with epo his  blood count should be close to normal.

I would schedule dialysis as late as possible in the day giving him most the day to be able to do things. That would make dialysis the last thing in the day before going to sleep. The next morning should be as close to a normal day.

When he feels better (and he will) try to get some light exercise such as taking a walk to start to build up. You would be surprised what you can accomplished on dialysis. Google the things that Shad Ireland has accomplished on dialysis.
 
http://www.renalbusiness.com/articles/2012/06/shad-ireland-prepares-for-ironman-world-championships.aspx

Don't care about what other people think!  No one is perfect and you have to live your own life. Conquering dialysis will build you a inner strength that the people around you can only admire. I know what I'm talking about because I started dialysis when I was 22 and on May 1st, I celebrated my 40'th year of the big D.   
 
 

[Grumpy-1]

Two comments stand out;  Sydnee said "People don't understand when you say you are on dialysis that it's what is keeping you alive. It a totally foreign concept to most people."   SO TRUE !!!!!  Even my best friends and even my family (to some extent) don't grasp that concept.  jbeany said "He's started life support.  It's hard not to think about your own death once that happens.  It's harder to talk about - and men are doubly handicapped with a culture that expects them to tough it out and not cry.  Even if he doesn't die for years and years (which IS possible, really), he's mourning the death of his health, his lifestyle, and his expectations for the future.   Unfortunately, asking a man how he's feeling is a sure way to shut him down.  Maybe you could approach it from a practical angle?  Has he made plans for both living and dying?  Talking about his concrete plans for the future might be easier for him than asking him how he feels about it.  Simply stating that you plan to stay with him no matter what might be the biggest help. "   

I for one, have a very hard time expressing my feelings. I was raised watching my dad and he never complained even when we knew he was in pain from a back injury.  So, that is how I cope, keep it all inside.  and it drives my wife nuts.  She is just the opposite, she will share her feelings with our 3 grown daughter's.  (not others outside the family) But I think it is more natural for women to share than men.   

Anyway hang in there with him.  Suggest he join our group - he'll learn he is not alone in the adventure and that care givers (like yourself) are in the adventure as well and will share or experience the same emotional roller coaster we dialysis folks do.   Let him know it is OK to feel the way he does. We all have been there and done that.   Grumpy

[Deanne]

Welcome to IHD!

I'm not a talky person, either, and I hate it when people quiz me about medical stuff. I just want to be "normal" or at least as normal as possible. What I'd likely respond better to would be questions like "do you feel like doing xyz?"

[Grumpy-1]

Received this bit of advice today.  Thought I'd share.

A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile.
Answers called out ranged from 8 oz. To 20 oz.

She replied , "The absolute weight doesn't matter. It depends on how long I hold it.

If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.

If I hold it for a day, you'll have to call an ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."

"As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced.

So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow.

1 * Accept the fact that some days you're the pigeon, and some days you're the statue!

2 * Always keep your words soft and sweet, just in case you have to eat them.

3 * Always read stuff that will make you look good if you die in the middle of it.

4 * Drive carefully... It's not only cars that can be recalled by their Maker.

5 * If you can't be kind, at least have the decency to be vague.

6 * If you lend someone $20 and never see that person again, it was probably worth it.

7 * It may be that your sole purpose in life is simply to serve as a warning to others.

8 * Never buy a car you can't push.

9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.

10 * Nobody cares if you can't dance well. Just get up and dance.

11 * Since it's the early worm that gets eaten by the bird, sleep late.

12 * The second mouse gets the cheese.

13 * When everything's coming your way, you're in the wrong lane.

14 * Birthdays are good for you. The more you have, the longer you live.

16 * Some mistakes are too much fun to make only once.

17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box.

18 * A truly happy person is one who can enjoy the scenery on a detour.

19 * Have an awesome day and know that someone has thought about you today.

AND MOST IMPORTANTLY

20 *Save the earth..... It's the only planet with chocolate!*

[Jean]

Grumpy, I just love your posts. Thanks for the cheering up. I needed that.

[galvo]

Nice one, Grumpy! BTW, I'm a bloke too. I keep my feelings well bottled up.

[lmunchkin]

It always helps to hear it from a Man's perspective.  Good advise Grumpy!
Welcome to IHD by the way!

God bless,
lmunchkin

[Chris]

It may have to do with the way he was raised is one thought. I do not share nor care to share with family or friends. I  do make cryptic smartass comments about my health to them that either flies over their head or goes in the wrong direction as if it was serious. I'm use to dealing with my health on my own, had to since I was a kid. Humor and being a smartass gets me by. If someone pushes the issue, it is aggrivating like someone trying to get an answer or talk to you before your first cup of coffee in the morning.
 
I say don't push the subject, try to get him out more by going somewhere to walk around and sight see, bike ride, or something he likes to do and also something you like to do (also both of you like to do). Keeping busy helped me though dialysis. Since he doesn't talk about his health and you probably can't ask a healthcare provider, but maybe he needs iron or more epogen to.