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jc55

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please be warned about reading my thoughts on post caregiving. This may be graphic...

One day, you will wake up in a panic. The house will be quiet, you will have nowhere to go for the day. No food to blend, no machines to fiddle with, no diapers to change. You'll realize that you've slept in until 10am for the first time in 3 years. Your heart will start racing and you'll find yourself fighting to catch your breath as the realization hits you that your loved one is gone. You'll panic and try to catch your breath as you cry outloud and yell that you are sorry that you didn't do it better. You yell her name and you apologize but she's gone. You'll realize that you are healthy and that her life was so short, tragic, and now gone. You'll pace the house constantly because there is nothing to do...your routine has suddenly been taken away. You can go anywhere in the country today but you don't because you have nowhere to go. You'll start reflecting on those times when you couldn't go on, couldn't take one more sleepless night. All of those hours face down on the floor crying out to God for help will be over. All of those times you didn't have the strength so you slept in the other room and cried yourself to sleep. The denial, the curses, the sweat, the sacrifices, the impatience....will someday be over. But how you would give 15 more minutes to go through family pictures or show them the children's last report card.

So today...love them while you have them. When you wake up at 3 am and there is a trail of feces from the bed, all over the house and into to the bathroom...love. When you wake up for the 10th time on a work night to move an uncomfortable limb seemingly 1/2 MM...love. When your bank account runs dry ordering online stuff that will never be used and the medical bills keep piling up...love. When you see your kids social skills lag behind their peers, stuck in the house with no friends, and you realize that you don't have any either...love.

You are taking care of someone who has a soul and was put here on this earth for a purpose. This is a great honor and something primal about having compassionately cared for another human being. You want this hell to end but 45 seconds after it does your eyes will be opened to the fact that this wasn't about you...it was about them. You will then realize how courageous and brave THEY really were. Everything changes when they are gone...you cannot prepare for how you will feel afterwards. You'll have your rest one day and you'll rediscover who you are again as a person, but for now please don't give up.

Please hang on caregivers. You are all heroes and will wear this as a badge of honor knowing when no one else was around, you ran the race. You were faithful, strong, committed, caring and that you loved, really loved, for real loved with no regrets.
 
jc55:

Thank you for your eloquent story. I have printed it and will read it from time to time when the bottom falls out from beneath me when I least expect it (as it frequently does). Your words reassure me that I was in the company of one who lived the journey and really understood it.

Your post has been a special gift for me at the end of a long, difficult day.

V
 
In the spirit of helping, may I be blunt?
Get a sailboat on a trailer.
You won't have time to think about your problems then.
 
Thanks, Jim.....for getting it and sharing with those of us who are doing it!
 
My wife passed 2 months ago today, to this very minute. Have a great 4th Atsugi.
 
I'm here for ya JC55. Keep good care of those good-looking kids. My girl is 13, boy 16, wife in hospital bed in the living room. We'll certainly enjoy our 4th, and I'll be thinking of you.

A sailboat was the best work project I ever experienced.

_____________
Mike
 
Thanks, Jim for writing what so many of us need to read. Happy 4th. Kisses... Kaye
 
Thank you from the bottom of my heart, Happy 4th celebrations to you all xxx Ang
 
My daughter, who gave up her nursing job to help care for her Dad in his final months, encouraged me to read this. I haven't been on since my husband past away May 20, 2010 because it is too difficult to read the posts, on the other hand she can not stay away. She worries about those she feels she got to know while her Dad fought his battle with ALS.

I would like to Thank jc55 for putting into words what a caregiver lives, regrets and would not have changed for anything in the world. I loved taking care of my husband of 40 years. I hated myself for those days I was cranky and short with him because I didn't sleep because he needed moved every 20-30 minutes. I always said he was my Knight in Shining Armour. I watched for 3 years as his always strong healthy body slowly became only a shell. A strong mind always and a wonderful smile even when he could no longer speak. Where did his strength and perseverance come from after struggling for so long? I don't know but I Thank God that I had him for 40 years and that his daughter stood by him to the end. I wouldn't change anything because it was what was supposed to be as crazy as that sounds, it's true that God only gives us as much as he knows we can handle and I know I am a better person because of it.

In Loving memory of a wonderful Husband and father, Edward J. Merk.
 
Jim. I read your post just before I went to bed last night and woke up this morning thinking about it. The past two days have been exceptionally demanding, physically - I had some type of bug that caused body aches and a fever yesterday so was struggling with helping my husband who is progressively getting weaker. Thank goodness my almost 19 year daughter so cheerfully looked after her mum and dad yesterday! Back to your message. It gave me the courage and strength I so much needed a boost of and today feel so refreshed emotionally. I am so sorry for your loss, your children's loss and your wife's loss. It's so sad, tragic to lose somebody to this disease, watch everyday the changes that take place that take them that much closer to the end. And you and your family are so young. Based on a lot of what I've read on this forum, this disease seems to grab the nicest people, young or old and from all walks of life. I grieve with you and wish you peace and healing. Take care as much as possible.
 
Thank you so much for the message. I've been in my room all day depressed wondering if someone knew how I felt as a caregiver. I felt I was burned out and just didn't know if I could go on one more day. But it's not about me it's about my dad and making life as comfortable as possible for him. Thank you again it has lifted me up.
 
So sorry about your wife. Wanted you to know that your posting was a beautiful reminder of the reason why we are caregivers. Sometimes it is hard to see the big picture from looking at so many of the little pieces that we must do daily. I also believe that one of the reasons that we tire and become frustrated is because we do love our PALS. It would be a much easier job if we could nurture them and see them improve. It is devastating to watch them suffer and know that it is a losing battle. I haven't been in your shoes yet and I can only hope that when I am there, that I can feel that I did a good job of caring and supporting my spouse. Such a loss is unimaginable. God bless you and your children.
Janis
 
Just Hugs

There are no words that can express the feelings you've dealt with and your tragic loss. It's so awesome that you've come here to give support to others that are waging the battle you've so recently completed.

Now, it's time for you and your kids. Just from what I read here, I would bet my last penny that you gave your wife all the love and support she needed.

Remember; the people are still here for you should you ever need emotional support as you go though the horrible stages of grief.
 
Thank you so much for sharing your expiences. May you & your children find peace. Hugs
 
Thank you so much. I really needed that right now. I am also going to print it out so that I can read it at those times that I feel I just cant go on or take any more - those times that seem to be getting so much worse and more frequent now.
 
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