I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Sara on March 28, 2007, 02:21:43 PM
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That's the only way I know how to describe it. Joe's been having trouble all of 2007 so far. He's been hospitalized once, having more trouble getting to sleep and staying asleep, had people in his unit die, trouble with fluids, had an extra day added for dialysis for a total of 4 days a week. Last week he told me rather calmly that he didn't see himself living past this year! I don't really know how to deal with this. What do I need to do?
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Thats pretty deep Sara. I hope I can offer something to give Joe hope.
What are some of the things that he enjoys? Try to light the fire of past favorite things to do. Talk to the doctor yourself and get an idea where his health problems can be helped and just do your best.
Make sure the communication lines are fully open between the two of you and make sure he knows and feels Love.
Set dates and make plans to do things that he looks forward to even if you are not able to do them.
Depression is real so don't ignore it. But do understand it's not your fault.
Prayer, Prayer,Prayer!
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Sara off a big :cuddle; my husband 36 is also the pt, a few years ago he went through a rough spot and was on dialysis for 2 months and at one point he asked me to let him stop, i reminded him of all the reason's he had to fight. Just support him. But remember to take care of you too, you have to be the brick wall to hold him up. If you need a ear i'm hear for you. Amy :cuddle;
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Below is some info for chronically ill patients from Lori Hartwell, who I greatly admire:
Living Well With Chronic Illness
Millions of Americans live on the physical and emotional roller coaster created by chronic illness. If you're one of them, you can take steps to let go of the mental barriers and anger that make your life even more difficult.
"If you have a chronic illness, you'll discover that your mind can be your best friend or worst enemy," says Lori Hartwell, founder of the Renal Support Network and author of Chronically Happy: Joyful Living in Spite of Chronic Illness. "You can choose to stay stuck in misery, or you can choose to free yourself from the depression and anxiety that come with illness and live your life to the fullest."
Ms. Hartwell became chronically ill at age 2, was diagnosed with end-stage renal disease at age 12 and had a third kidney transplant in 1990. Despite a lifetime of pain and weeks spent in hospitals, Ms. Hartwell has a rewarding family life and a successful career as a speaker, educator and renal patient advocate.
Speaking from personal experience, she offers the following suggestions on how to stay positive, joyful and in control when living with chronic illness.
Take control of your attitude
Stay positive. Negative self-talk, pessimistic media reports and comments from others can increase your worries and feelings that your life would be better if only you were healthier. "But by identifying these negatives for what they are and replacing them with positive thoughts and affirmations, you can stay focused more easily on your self-worth and the things you can and want to do," says Ms. Hartwell.
Seek support from people who understand. Expressing your feelings to an attentive, empathetic listener can alleviate anxiety and provide reassurance. "Talking with people who face similar challenges can give you encouragement and help you keep a clear perspective on your life," she says.
Read inspiring stories. Take strength from reading books about people who have overcome great obstacles.
Pay attention to what you can control. Dwelling on things you can't control is a recipe for depression and loss of hope. Ms. Hartwell sorts out things by doing a simple exercise when she's overwhelmed. "I write out the situation that's bothering me, and underneath I note the actions I can take to improve it. If I can't write anything, I realize I'm powerless and I have to release the problem to faith, luck or patience. If I can do something, then my written words point me in a clear direction, where I know I'll get results."
Listen to motivational tapes. "Motivational speakers are much like nonreligious ministers," says Ms. Hartwell. "They encourage people to achieve their highest goals, whether in their professions, finances, health or love."
Focus on activities you can do, not on those you can't. "Finding a passion in life that isn't dependent on having physical abilities is a blessing," says Ms. Hartwell. "It's about doing activities that give you pleasure rather then ruminating over what your body can't do anymore."
Online Source: Renal Support Network http://www.renalnetwork.org/
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it may sound pollyanna-ish but you can always find something good in everything. admittedly that's sometimes difficult but it can be done.
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Sara, my thoughs and prayers are really with you. I just wish I could crawl through the screen and give you a big hug. :grouphug; This will have to do though. Remember we are all here for you and you are not alone. ;)
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This is definitely not an easy situation, and there are no quick fixes. My caring thoughts and prayers are with you both. Situations come to test us all the time. It is up to us to see them as that, and be determined not to let them defeat us.
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There is never a quick fix for these feelings your husband is having. This may sound morbid, but are you all prepared in the event either one of you were to pass away? Have him work on this stuff. Then have him do something fun with you. Take him out and do something you both will enjoy.
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Thanks for the comments. Kit, no we are not really prepared. I mean, he has some life insurance, and he's told me he wants to be cremated, but that's about it. I'll have to think about bringing this up to him. I don't want him to think I want him to kick the bucket any time soon. ;)
We are planning a weekend trip to Miami again next month, so I am hoping it will give him something to look forward to.
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There is never a quick fix for these feelings your husband is having. This may sound morbid, but are you all prepared in the event either one of you were to pass away? Have him work on this stuff. Then have him do something fun with you. Take him out and do something you both will enjoy.
Hate to be morbid but I have my funeral planned from music to what I want to happen in my wake. At least I can have total control of this part of my life. :) :) :) :) :)
Donna
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Thanks for the comments. Kit, no we are not really prepared. I mean, he has some life insurance, and he's told me he wants to be cremated, but that's about it. I'll have to think about bringing this up to him. I don't want him to think I want him to kick the bucket any time soon. ;)
We are planning a weekend trip to Miami again next month, so I am hoping it will give him something to look forward to.
Sara thats all you can do. Just keep on keeping on. :cuddle;
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I personally think if someone is feeling down and depressed, asking them what they want for their funeral details wouldn't be the way to go. I would just be supportive.. and that trip away sounds perfect.
You and Joe are in my prayers. :cuddle;
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I keep telling hubby things I want and do not want at my wake and funeral. It makes him mad at me but oh well.
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I really don't care about my funeral. I don't even really want one. If the people in my life don't have time to visit me when I'm alive then the only reason they would visit me when I'm dead is to make sure I'm really dead.
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My husband felt very hopeless at times last year- he was on alot of meds- getting off some and adjusting others actually did help him. And I wouldn't dwell on funerals when he feels down, it would be too easy to let depression determine your fate...I just re-assure him alot that I love him, and will always be there, then we try to watch a funny video, or walk around the yard. If he feels too sick- I just rub his back..... and do what I can. I know when he was at his worst, they gave him,(and still do) plenty of ativan, which seems to help a good bit.
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I still do dialysis four times a week. I have trouble with my fluids. I conquer my feelings of helplessness with having hobbies that I enjoy, and doing things I love to do. I have no time for getting down. I hope this is of some help. You have to still have dreams, to want to keep going through this $hit. LOL!
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I think once you understand and accept that dialysis sucks and your life is never going to be the same again, you begin to put things together in a different way. I know I see things differently now, than I ever did before. I do not plan things too far ahead and I am always ready to shift things around as needed. I have missed out on some things due to scheduling but mostly I can rearrange things around dialysis and do what I want to do.
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Hey Sara, just checking in on how you and Joe are doing? i hope you both are doing better. Looking forward to seeing pics from your trip to Miami next month :2thumbsup;
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Depression is a fact of life with dialysis, however I find I am able to keep it at bay by writing down what I am upset about, it allows me to vent in a way that is not self destructive. I also find the weather effects my mood in a serious way, taking advantage of sunny warm days by getting outside can keep me on a high for days. WORK, work is key as it leaves me too busy to over think things and if theres one thing you can count on during dialysis it's sitting there over thinking every detail of your life, Last year I waitered at a busy restaurant on the St. Lawrence river it kept me jumping and by the end of the summer I was in fantastic shape and had a great tan, and feeling good is the best cure I have ever found.
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Depression is a fact of life with dialysis
That's not true for everyone. I remember when I went on dialysis in 1999 for 7 month's... I wasn't depressed once... I continued doing my normal routine and enjoyed life. I *hated* when the social worker would come by when I was at the center, and she would ask how everyone was doing, I would always say good, or great, and tell her my plans for the weekend or whatever, and every once in awhile she would say, "And your not depressed, right?" I was like "NO, if I was, I would tell you, or you would see me all sad and blah blah, and STOP asking me every week, because seriosuly, it's annoying."
Everyone experiences dialysis differently, even I have 2 different experiences. In 1999, I still felt great and did what I normally always did, with pretty much no diet change except the fluid restriction. However, in 2004 I felt crappy, and sometimes felt depressed at first, but I got over that eventually... so it's not a fact for everyone... just most.
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Depression is a fact of life with dialysis,
I don't think GuyIncognito means that 100% of patients experience depression as much as he means that it can go hand in hand with the circumstances. It is a fact that depression is a part of renal failure or there wouldn't be all sorts of studies on the subject. Angela you and those who do not suffer are fortunate.
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Heck yes, when I first got on dialysis, I was horribly depressed. I lost a high paying job, a wife, and nearly all my worldly possesions, including a brand new 4 bedroom home, and the list goes on. It was quite a lifestyle change. I got over it, and learned what was important in life. It's not things, but the people in your life you treasure. I keep busy with things I love to do. Weather does effect my outlook, because most of the things I love to do are outdoors.
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Heck yes, when I first got on dialysis, I was horribly depressed. I lost a high paying job, a wife, and nearly all my worldly possesions, including a brand new 4 bedroom home, and the list goes on. It was quite a lifestyle change. I got over it, and learned what was important in life. It's not things, but the people in your life you treasure. I keep busy with things I love to do. Weather does effect my outlook, because most of the things I love to do are outdoors.
It is amazing the way we have to learn some of lifes lessons. Character I think is what pulls you through. Triker you must be a man of great character.
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Heck yes, when I first got on dialysis, I was horribly depressed. I lost a high paying job, a wife, and nearly all my worldly possesions, including a brand new 4 bedroom home, and the list goes on. It was quite a lifestyle change. I got over it, and learned what was important in life. It's not things, but the people in your life you treasure. I keep busy with things I love to do. Weather does effect my outlook, because most of the things I love to do are outdoors.
It is amazing the way we have to learn some of lifes lessons. Character I think is what pulls you through. Triker you must be a man of great character.
Agreed
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I agree also. Triker you must be of great character. I admire that bro!
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Thanks for the compliments, but seriously, that's how I keep a good outlook on life. When you loose all else, all you have are you're friends. That's when you find out, what is truly important.