A note to caregivers -- from your patient

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JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 6/26/2008 10:31 PM (GMT -7)   
Hi my Love,

It has been a while since you and I enjoyed each other as equal partners. I miss being there with you. You know that I love you and want desperately to be there with you -- stroking your hair and laughing about the silly things we did today.

But it's like I'm walking through the most dense fog, tied up with those heavy ropes they use on ships. I know you're there and I want to find you, but every time I think I'm close, your voice seems to slip away.

When the fog does thin a bit, I see you and all the trouble that I am to you. In those moments, all I want to do is thank you -- for your love, for caring for me, for not giving up on me, for being you -- then I feel the slide. Not enough time. The fog closes in and you start to disappear. Not long enough. If I can just focus a little harder, I can make it back long enough for us to share some time, like we used to.

Now what was that? Oh, the pills. No, not the Lactulose. What was I saying? I need to get to the toilet. No, I had something important to say, or do.

I love you. Thanks for caring for me. Thanks for watching out for me. Thanks for loving me. I can't wait until we're together again as a couple, and not as patient and caregiver. Not long now, I hope.

=======
I know there are many who wish they could say these things to you (or something similar) but just can't.
This is my feeble attempt at saying it for them.

Be well, John
(no replies necessary)
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/26/2008 10:44 PM (GMT -7)   
 
  I just wanted to say, "No thank yous are nessasary." 
 
That's what I would say to my husband, if he ever said these things to me. But, it's OK if he never does.
 
Carol 
     
 

Post Edited (Caregiverx3<1) : 6/27/2008 9:42:13 PM (GMT-6)


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 6/27/2008 2:01 PM (GMT -7)   

 johnCT, that was beautifull as perfect as could be said, i wish i knew more about this disease when my father had it i sure would have been more patience with him, to late now. it really is a horrible disease when you dont know much about it. my thoughts and prayers are with you johnCT and hope your dreames come true some day. have a wonderfull day.

 myfathers child


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 6/27/2008 3:02 PM (GMT -7)   
John, what I wouldn't give to hear those word's!  Thank you so much for sharing with us, I'm not real great as a caregiver and sometime's feel so un-appreciated so I hope your right and he really does still care. 
 
 
 
Judith

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 6/27/2008 5:15 PM (GMT -7)   

John

You ARE AWSOME.  I had to read that 3 times.  Everytime I get down I'm going to read that and just pretend for a moment>   I can't wait until you get your transplant.  I just know you will be back here on the Forum to help all of us who are still waiting.  Walking us through.  Thank you from the bottom of my heart.

 

JoAnn


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/27/2008 9:01 PM (GMT -7)   
Okay John I am still crying......
Sue
That was awesome
When I started counting my blessings my whole world turned around.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/27/2008 9:24 PM (GMT -7)   
Hello John,
You can't know what that letter has done for all of the caregivers and former caregivers. On second thought yes you did or you would not have wrote it. Thank you from the bottom of my heart. :-)

Lot's of thoughts and prayers for you John............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 6/27/2008 10:27 PM (GMT -7)   
Hi all,

God bless you caregivers. with your strength and patience. Please know that when we patients slip into that period when we become 'emotionally unavailable', our feelings don't change -- just our ability to share them.

Be well, John
(no replies necessary)
I have to get up the creek! Now where's that paddle?
Mind-fogged again.


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/28/2008 7:44 AM (GMT -7)   
Hi John,

I read your blog. Very interesting content and no one would ever know you get in a fog sometimes.

Carol
 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 6/28/2008 9:01 AM (GMT -7)   
John, Thanks so much for sharing that. I can't stop the tears from flowing. I will be praying for you.
Butterflythree
 
There is always hope!


pasey_1
Regular Member


Date Joined Aug 2007
Total Posts : 38
   Posted 6/29/2008 11:53 AM (GMT -7)   
John,
You have just said all the things that I know one day I will want to say to my sons, but worry if I will remember. Thank you in more wyas then you can know. You expressed all of my fear and gratitude and yes hope that I can only hope every caregiver could hear and feel.
Love, hope and prayers,
Pasey

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 6/29/2008 12:59 PM (GMT -7)   
John, I also wanted to add, that is how it appears to the caregiver. There are times I see my husband coming back to me, and I get my hopes up. Then I slowly see him disappearing again. I pray for the day that he comes back for good.

Thank you again.
Butterflythree
 
There is always hope!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 11/14/2008 7:58 PM (GMT -7)   
Just wanted to give this a bump. It really helps me when I read it. I love it so much.
Butterflythree
 
There is always hope!


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 11/14/2008 8:39 PM (GMT -7)   

Oh my gosh I hadn't read this before, thanks John, now I'm crying.

Helen


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 11/14/2008 9:14 PM (GMT -7)   
Butterfly,

Thank you for bumping this up. I think I really needed to read this today in particular (sniff, sniff). My hubby is back in the fog again, and we have some not so wonderful news hanging over us. The other day, at the hospital, he just looked at me and said, "I am so sorry I am putting you through all this"........

John, this was a beautiful letter. Thank you for writing it. I do hope and pray you are doing well and that your pain is not too bad......

Mary

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 11/15/2008 10:28 PM (GMT -7)   

Mary

Just hang in there.  I know its hard but we just have to.  My husband tells me "I am so sorry" quit often.  I just tell him when its all over he will owe me big time.  I know there are days when I just don't think I'm going to make it another hour let alone another day.  Then tomorrow comes and I keep going.  The people that write the success stories keep me going.  Just dig deep for that strength.  You will find it.

JoAnn

John, sure could use just a HOWDY!!!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/20/2009 12:23 AM (GMT -7)   
Bump for all the new caregivers...........and the old ones too.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/25/2009 11:50 PM (GMT -7)   
Time for another bump.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/26/2009 11:14 AM (GMT -7)   
Rick you are on the same caliber as John.......As a matter fact all of the members who are fighting this disease while helping others are........It is just so inspiring to me and probably all the other caregivers and former caregivers.....you guys have no idea........... So whether you know it are not.....you are keeping the spirits up for the rest of us.........thoughts and prayers..................
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 8/26/2009 11:35 AM (GMT -7)   

Wow, John you really woke me up. Thanks for the eye opener.

Love,Hugs and all my Prayers,

DeeDee


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/22/2009 8:47 AM (GMT -7)   
Just wanted to bump this up for all of our new caregivers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 12/25/2009 9:53 PM (GMT -7)   
Thank you, John and thank you Pink Grandma for re-posting this.

I love being a caregiver for my partner, but I never thought that we would have to be going through this as our age. I know it's difficult - very difficult - for him to tell me how much he appreciates my care and for him to understand that there is not one thing in the world that matters to me more than he does.

So, I also look forward to the day that we travel past the ends of the earth that we promised to do for eachother, and no longer be patient and caregiver.

CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 12/25/2009 10:02 PM (GMT -7)   
Also, Rick ... you certainly are timeless!

You are also a gift to this community, and an angel among us.

Sometimes we ask why God would allow something so horrible to happen to someone, but then we realize that we have work to do.

Rick, I don't know what some people would do without the care of you & Pink Grandma.

All I can say is Thanks be to God for the Grace that you bring.

Merry Christmas to you, sir, and all whom you hold near & dear.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/8/2010 5:46 AM (GMT -7)   
This post is from one of our dear members who doesn't post anymore. I thought it was appropriate to bump up. I goes with what Rick's been posting.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1766
   Posted 12/8/2010 9:49 AM (GMT -7)   
Thanks for the bump...now I gotta stop crying so I can get back to work!

Very spot on. Right when I needed it.
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