I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: celtic warrior on May 29, 2009, 06:03:29 PM
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I have just sat and worked this out, as a carer, I take Maria to the Hospital for Dialysis,three times a week whatever the weather. In the last 2 and a half years, that means she has been to dialysis approximately 400 times ( maybe my maths are wrong, I don`t know ) BUT if they are correct, that means that I have done 800 visits. I take her there , get the chair ready , bring her water etc then go back home. We start off at around 06-30 (her "appointment " time is 07-15) I leave her at the center at around 07-10, go home , either have a bit more sleep ( I am usually worn out by then) due to the heart problem, or stay awake so I can sleep that night. Then i go back to pick her up at around 11-30. I love her with all my heart, but I don`t think she realises how exhausting it is for me. If I could change places I would, but to tell the truth i am SHATTERED. Who said loss of kidney only affects one person?
Tony
P.S.
I KNOW lots of you have been on Dialysis for longer but allow me my gripe!!
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I am not to the level of care giving that you are but I definitely 'get it'. The emotional part is the worse part for me. I am thankful I have a job. It keeps me sane. Hang in there. :cheer:
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thank you for the reply greco02.
You will get to realize there is no LEVEL of caregiving pretty soon.
We love whoever it is going through this awful time, and we would trade places in a moment.
I personally am just forever thankfull my Wife is still around.
Tony
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I get it, too, Tony. My husband and I do dialysis at home. We work full time, come home and spend four hours six days a week doing dialysis. And I am still trying to give him a kidney. In the mean time, while he sits in the chair, I take care of things around the house. Last night after an exhausting day at school, I did five loads of laundry while he was on dialysis.
There is a great deal of stress for us care givers.
But I will take that stress any day because it means that I get to KEEP my husband.
Aleta
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Tony,
I'm the first to agree with you that being a caregiver to a dialysis patient is one tough job. It is physically demanding and draining for us (even though we're not the ones with ESRD and on dialysis), and then there's the mental, emotional, spiritual, and financial burdens that we must carry for us, our spouses, and our families -- sometimes right by ourselves.
There have been many, many times in last 14 years and three months (since my husband Marvin first started on dialysis) when I have thought, "I just can't do this. It's too much. I can't take any more." I have cried buckets of tears (not in front of Marvin), screamed, fumed, cussed, prayed, and begged in my "conversations" with my God. There have been many times when I have been literally spent from exhaustion. There have been many times when my heart, my spirit, and my will to keep going have been broken to pieces. It's times like these when I look over at Marvin and see that -- even as tough as it is for me -- it's a million times tougher for him. And the look in his eyes tells me that even though I would gladly trade places with him, he would never let me do that.
I think a part of my fate in this Life is to be a caregiver. I was "chosen" for this job because the Lord knew I could handle it (though I sometimes question this). I think Marvin and I were brought together because we each had something wonderful to offer to the other.
I often say that ESRD has affected my life, too. I call ESRD "our" disease, even though it's only technically in Marvin's body. I hear you, Tony, and I know it's hard to be in our shoes. I don't think there are any "secrets" to handling all of this; I just do the best I can -- and sometimes all I can -- for my husband. Somehow, I find the strength to do it all again tomorrow. I'm one of the lucky ones because Marvin is very appreciative of all I do for him, and he tells me constantly how much easier I make his life. I can only hope that what I'm doing for Marvin is enough.
Hang in there!
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Willowtreewren /petey.
Thanks for responding. It`s good to know its not only me.
I thought for one awful moment that i was "different"
YES, we would change places in an instant if we could would`nt we.
I would gladly give Maria BOTH my kidneys if I could , and gladly spend the rest of my life on Dialysis.
BUT god works in mysterious ways, and he has decreed that this should not be.
So we carry on day after day, just being thankfull we are still together
Tony
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It's not only you, I have similar issues with caring for my Dad, we pay for a taxi to take him to dialysis as it's nearly 20 miles each way - but I've now taken voluntary redundancy at work because I was having to take off so much time to take him to hospital appointments (nearly 40 miles away). Hospital transport would not let Mum travel with him and to be truthful neither of them (at 78 and 80) is capable of taking in all that is said or asking questions at appointments (they are the generation who think the Dr is God and you don't question him!). I would have had to take 11 days leave in April and May (almost half of my year's total) if I'd still been in work. On top of that I was finding it impossible to keep on top of work at, home (gardening, decorating, maintenance, even cleaning etc) as I'm widowed and therefore have no-one at home to do these things whilst I'm out with Dad.
Let me say now though that it it 100 times worse for Dad as he is the one who is having the dialysis plus all the other probelms, if he had been a younger man I would have offered him a kidney but with all his other problems (in addition to his age) he is just not a candidate for transplant.
I do sometimes (on a bad day) feel that life is passing me by, I spent 7 years caring for my husband (prostate cancer) until he died and now I've had 2 years with Dad so my 40s just passed me by. But generally I just get on with it knowing I Can manage it and it will not be for ever - no good weeping and wailing when someone has gone if you didn't do all you canwhile they were here is it.
Just my :twocents;
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Thanks to all of you that care for and about us. You do all of this for no pay. You have every right to blow off steam. :grouphug;
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Romona, Your Post made my Eyes, Tear up. That was very Kind of You say.
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celtic warrior you are not different and it is not only you. Hubby has been on dialysis for 12 years. I have not been a care giver in the same way as you are. I never took hubby to dialysis even though I did go with him. He always got his own chair and all his stuff ready. Now that we do home hemo I am his partner not really a care giver.
I do wish most times though that it were me on dialysis instead of him and then I wonder how he would handle it if I was. I know he would do as much as I do for him to help but I often wonder how he would be emotionally. It is not easy on times. In the past 12 years I have had a lot of pep talks with him to keep him on track. Most times he is fairly upbeat and deals with everything really well but there are times when he gets down ( I think all people with kidney failure do). :cuddle; to you celtic. Try to just take one day at a time. I'm sure your wife appreciates all you do for her.
EDITED:Fixed smiley tag error-kitkatz-Moderator
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I'd like to say how thankful I am for my hubby. He is so supportive! I am pretty capable of taking care of things myself but he still insists on carrying the bags I need for my cycler into the bedroom every night. He never complains when I need another water to drink during the night and he has to go get it for me because I can't reach the kitchen. He does whatever I need simply because he loves me. I am very blessed!
He also cleans and cooks dinner when my energy level is low or I don't feel good. Sometimes he takes us out. And the PD stomach? Somehow it doesn't turn him off and he loves me for me.