A caregivers shoes

NO, as a caregiver I do not walk in the shoes of you that have this damn disease, I walk in my own shoes and let me tell you they pinch my feet.  A husband caring for his wife, a father caring for his daughter, a mother caring for her daughter, a son/daughter caring for their mother, we also are hurt, confused and helpless at times.  Never believe that it is an easy path for us, we do not feel your physical pain but we suffer from an emotional pain.  Our faith is shaken at times, doubts in the ability of those making the decisions.  It is our job to listen, put aside our own pain and doubts and be there as needed. I do not know how some of the others feel but I would change places in a second with my daughter to save her from all of this. I stop and think about all the words spoken about you ladies and none of them really speak of the courage you all portray. My courage is hidden , my emotions have to be kept deep down inside. I cannot speak of death only life.  I admire each and every one of you. My heart is not filled with pity, it is filled with hope. My thoughts of my daughter are never far from my waking mind. I do not ask or expect thanks from my daughter for my role as a caregiver, I only Thank God that I can be here for her.

[baguba]

Marty
I hope I did not offend you when I said in my post that those who don't want in our shoes don't know what it's like.  You of all people - who have been here with your wisodm, compassion, humor and wit have carried all of us through some pretty tough days.I know how much you love Leslee and as a mother I can idenitfy in how you feel about trading places with her.Your courage is not hidden; it is displayed in each and every post you write, and your emotions come out strong and loud in the advice you give us. Keep it coming.  My husband told me when WE started this journey that as a caregiver he would never be behind me to push me into anything I didn't want to do, nor stand in front of me so that I cold follow what he thought I should do, but he'd be right along side me so that I could lean on him at any time.What he doesn't know is that I see the pain and frustration and love on his face and in his eyes and I wish I could care for him as he does for me right now.  That's what Leslee sees in you, too, Marty. You give all of us encouragment and hope.  Thank you!

[bmcd]

Simply Star,

Well said and could not have formed the words any better.  Thank you for acknowledging and publicizing the pain of those who have to remain on the side lines and are unable to fight for those we love.

[cirella]

Star, You have the God given gift of care and support and from what I have read here on the posts, both back in November and now, you give freely and lovingly.  Your daughter is very fortunate to have such an advocate for her.  No, you don't have her disease physically but you do have it emotionally because it affects you in a way that I cannot imagine.  You fight for her when she cannot fight for herself and I'm sure she would do the same for you.  

I appreciate you answering my posts when I have had questions or fears.  It amazes me that you can have so much left over for us, here on the forum.  Believe me, your voice makes a huge difference and even though you do not ask for a thank you, you deserve it.  Just the littlest hug gives comfort.

Your post made me cry.  I can feel the warrior in you and I just wanted to tell you that.  To all the caregiver warriors out there...THANK YOU!
Lori

[SimplyStar]

I am never offended hun, guess I just wanted to offer some hope and encouragement to those of us on the sidelines.  There are those times when I want to play God and heal the world, but it just isn't there for me to do.  The big ifs, maybe a different path I could have taken to prevent this from happening to her, but like you, I do not look at the past, I look to a future and hope for the best.  Maybe we just need to kick off all those "shoes" and go barefoot in the park together.

[vegas2cr]

Thank you for expressing what my husband tries to.  I see the pain in his eyes as they stab me for the 15th time, I see the pain when he realizes that all is not well today.  My husband and I are partners... and my kids oh my G-d since they are far away i can lie to them.  Oh yes I say I am feeling better today... nonsense I really feel worse.  My son especially touches my soul when he says you aren't going anywhere Mom... what do I tell him... nothing... My husband bands with me as my caregive to evade the truth with the kids... G-d bless him he is my angel here on earth. Ronni

[crecco]

Thank you for putting into view the "other side". As one who has this disease I hate what it has done to me, but even more, I hate what it has done to those who love me. Its just wrong for a parent to have to watch their child go through something so horrible. I couldn't even begin to imagine watching my son going through anything like this, so I know how hard it has to be on my mother. (who is herself a 20 year breast cancer suvivor) For me that has been one of the hardest things to deal with through this whole ordeal, what it's doing to my family. I try to put on my "brave" face for them most of the time as I don't want it to be any harder on them as it already is. Thank you for being there with your care and support. Leslee has a wonderful mother.