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The importance of Caregivers...

gwhite's picture
gwhite
Posts: 18
Joined: Jan 2012

Caregivers, I have written elsewhere that cancer is a family affair.
The role of the caregiver is that of the unsung hero in a war that kills
over a thousand people each day in America. The story is so sadly
repeatable - the patient dies and is buried and that is a finality. On
the other hand when the visitors leave, the flowers wilt and the
casseroles are all gone, the poor caregiver is left alone in what can be
a pit of grief. The deeper the love, the more the tendency to self
recrimination and wishing we could have done more. If not dealt with
this can in extreme cases be an uncalled for death spiral . The hope
that was stolen must be restored. Concern for the future outlook of the
erstwhile caregiver is what prompted me to write the EZINE article, "Who
Cares For the Caregivers?" that may be viewed at: http://ezinearticles.com/?Who-Cares-For-The-Care-Givers?&id=5922138

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

Thank you Gwhite. Your words ring so true. Sometimes, in my dark moments, I feel like I am dying, too.

gwhite's picture
gwhite
Posts: 18
Joined: Jan 2012

Shirley, i have looked at terminal cancer from both sides, that of patient as well as caregiver and survived both of them although I can truly say that the pain I felt as a caregiver watching my wife of 50 years die needlessly from what turned out to be a stupid medical mistake was far, far worse and came much closer to killing me than my cancer.
I have devoted my last 15 years to a pro bono mentoring program to help people get through to remission and we have been successful in many, many cases. I invite you to visit my webpage at wwww.cancerwarsmaarsjourney.com and check out some of the stories of remarkable patients. Where were you when the bus tour picture was taken?

LeeandShirley's picture
LeeandShirley
Posts: 122
Joined: Apr 2011

The photo was taken on Lee's dream of a lifetime trip to Alaska. It was aboard a scenic cruise train. Lee was stationed in Alaska during his stint in the Army, during the Vietnam era. He loved the wild nature of the land and the simple way of life he encountered there. He always yearned to return. He is an avid outdoorsman. It is a good lesson to me, too. I hate cold weather and I wanted to go to Hawaii, instead. But, Lee has a gentle way of making you want to do what he wants to do; so we wound up in Alaska for our 20th Anniversary trip. This was July 2009. In July 2010 a spot was discovered on Lee's liver and all that comes after has been a rollercoaster ride of both of us hanging on for dear life. I will never regret going to, (LEE'S) Alaska. As a matter of fact I am so happy I didn't get my way. What's the line of the Garth Brooks song about "Unanswered Prayers". Oh yes, "One of God's greatest gifts is unanswered prayers". I was given the gift of Lee seeing Alaska one more time. Just thought I'd share that with you since you asked.

JackieA
Posts: 150
Joined: Mar 2011

I agree with you. As a caregiver, I feel that some people do not understand my personal journal. I am so lonely. I can imagine what my husband feels since he was the life of the party, well known in the community, only to find no one shows up or comes by. but me I silently struggle. I hurs=t so much from the mental abuse of this disease, knowing that I personally can't make it go away. It has brought out the worse in me...I beat up on myself for the stupid things I do. I could just cry for daysl. I have cried so much until I don't know how to anymore. I scream inside but no one hears me. I can only imagine what my husband goes through. He hurts all the time. He spends the majority of his time in the bed and on the couch. We get no visitors. We are a young couple with an 11 year old. Family doesn't come around. We don't visit many because most of the time he can't climb stairs, and he can't walk far. I just dont know. I feel so bad.

cosmic_me
Posts: 35
Joined: Dec 2011

Jackie I would swear most of the things you write I've written myself. All I can keep saying is I know how you feel and I know what you are going through. It is complete hell. It's so low a feeling you feel like you've got to reach up just to touch bottom. I felt so alone while taking care of my mom and now that she is gone I feel just as alone because no one really gets this at all. In fact it's very odd what some people say to me. Their expectation is that now that mom is gone suddenly I'm suppose to have all this new found energy to embrace a super duper wonderful new life. It sickens me to be honest because I don't think any of them could have endured what I did. Many of them would have given up within 24 hours and sat at friends homes crying while someone else took care of their loved one. As for me? Even after a month and a half since moms been gone I probably could still go into a hospital for exhaustion but I've learned to fake it for so long no one knows really how I'm feeling as I just continue to always say ... I'm doing well. They just don't get it and they don't want to hear how you are really doing. They want to have a conversation of avoidance where they address your loss quickly but then move on to how lovely the day is.

Usually the words "care provider" include the ability to rehabilitate. However, when a loved one is terminal that isn't the case. Every hour, every minute it's about simply making them comfortable while they slip away in front of you in the most gruesome way. You get to the point where you are so desperate you are willing to sell your soul to the devil to make them all better. I have tried to explain this to a few people but I can tell from their eyes they just don't get how traumatic all of this is as the only care provider. For 9 months I felt like daily I was clinging to an edge watching my most precious gift on this earth die in front of me. Vomit, diarrea, diapers, bed changes, testing, medication rounds that could kill an elephant and moms mental confusion and fears were all things no one ever saw. Just me. No one I've encountered personally even remotely gets that. They don't allow themselves to go there in their minds. In fact the few that I know that have lost loved ones to diesease all put their loved ones in a facility or hired someone else to do the tasks. I walked through such dispair now that it's over I can't stand to do much intense recall because every time my mind goes back even just a few months ago it's too much to deal with. My heart continues to "re brake" every time I recall a conversation or moment. When people ask how I did it my answer will forever be the same. I don't know how. I was in a vortex where my focus was on my mother and nothing else. Testing, shots, turn her, clean her, change her, bathe her, dress her, undress her, comb her hair, communicate with her, read to her, sing to her, console her, feed her, hold her, listen to her, evaluate her, pray for her, laugh with her reach for her. Walk for her.. Laundry, cook, clean, shop, rinse and repeat repeatedly every day. My guts feel like they've been ripped out. I watched my mother die right in front of me. Say that again.. MY MOTHER. My best friend. My anchor. My role model. My confidant. My lifeline to life it'self. Hour after hour. Minute by minute. I was only allowed to keep her comfortable and medicate her but I wasn't allowed to fix it. My entire life prior to this I'd always been able to fix whatever challenges she had in life. If I could describe what I saw I'd say it was like watching my sweet little mother being chained to the back of a car and slowly dragged around town 24/7 while I was chained in a corner forced to watch it as my soul screamed out to God to please make it all stop. It didn't it continued up until Dec 14th. I still can't believe she's really gone.

I wish so much I could snap my fingers and take your pain and all your hurts away because I know them too well. I keep saying to people I'd never wish what I've been through on anyone. It's simply unbearable. I know it doesn't lessen the feelings but please know you really aren't alone in what you are dealing with. You have this place to vent and release. I didn't know of it's existance until after mom had passed. I would have liked to have had the outlet just to vent instead of those late nights feeling like I was going to pop with all the thoughts and feelings rushing through my body. So utilize this board to your needs. I'm going to ask my mom to send someone into your life that can help you out a bit :)

SlowRollin's picture
SlowRollin
Posts: 75
Joined: Nov 2011

Thank you Gerald for posting such a well written and insightful story. My wife and I are at the beginning of the this roller coaster and are still completely overwhelmed. I appreciate your sharing a little bit of your story.

Tony

gwhite's picture
gwhite
Posts: 18
Joined: Jan 2012

Your comments are so touching and so very well written. If you would ever like to contact me offline you are free to do so at my email maars@charter.net. There are some people in my mentoring program that I think you would benefit from knowing. I have been on both sides of this issue, one as a terminally ill cancer patient (15 years ago) and another as a frightened and hurting caregiver. The role of the patient was the easier by far!
Godspeed you as you make your way through the dark tunnel. There really is light out there.

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