Life after caregiving

Hello my fellow warriors,

I miss you all, In case some people dont remeber us, Im Linda, My husband Carmen was dx Sept 5th, 2008. I found this website, a year into dx, I wish I had found it sooner. Im 45 years old. we have 6 children. Carmen lived 2 years 10 months, actually 1,054 days to be exact!

it will be a year since he passed on July 25th, 2012.  I want to be totally honest here, please without judgement.

In the middle of the journey there were alot of days where i felt i was losing my mind, I thought my heart would just break in half for him... and our children.  I was just reading someones post about having a bad day as a caretaker. It brought all of the emotions flooding back. I also remeber saying to the doctors that i will take Carmen any way i could have him. very selfish of me.  However once hospice arrived they explained that this is not fair to him. he was no longer able to walk without assistance, was embarrassed because he coulnt make sence. all he wanted to do was sleep, he had zero energy to even shower.  our lives were on a complete hold. no one ever slept well because he might wonder around and fall.

After he passed, and I will only speak for myself not the kids, I was a mess. all i wanted to do was sleep, i lost 30 pounds. and i cried every night in my pillow, and about 100 times throughout the day. I felt like i was kicked in the chest, and fell apart medically also. I joined every group i could, and became super widow! I also saw a therapist and was on meds. i kept a journal faithfully and the only books i was interested in was books on tragedy or death. forget tv, pissed me off to see couples happy. hearing my son at 15 years old tell his friends, " let me ask my parents if i can sleep over"  oh, i mean my parent. my dad died.   OMG for some reason i felt like a failure. my kid doesnt have a dad anymore.  Im a single mother. UGHHHHH

Im here today at 10.5 months to say, Im alive again!!!! Im happy again, so many things that i cant even explain, that i know were signs from my husband to move on, and I did. So please, please, keep the faith, keep searching for the cure, but know, after you have loved him or her as much as you can, and do EVERYTHING you could do, trust in your spouce that they do NOT want you to sit around and mope, attempt to live again, my friends. Life will never be the same, but it does go on, believe it or not. I would have never thought id write these words, but here i am.

God Bless you all,

Linda/Wife of Carmen (forever)

Linda,

So glad you are "ALIVE" again. As for me there is no way I would never forget such a strong, wonderful, loving, caring, giving, devoted, and dedicated caregiver as you. As for judgin you, no way. The fact is each of us on the journey has a different experience with dealing with the big "C".  Linda you did the best to deal with what you new at that time. No judging from me just pure respect and admiration. You held a family together and that in its self is AWESOME! LIve your life as you know Carmen would want you to. Life is not measured by how many breaths you take but how many times life takes your breath away!! Keep on Living!!

HOPE

Damon

Dx NOv 07....No regrets

Very much looking forward to my "post" caregiving days....

GBM Caregiver: 2 years and 10 months

Dementia caregiver: 17 months (many regrets)

Good luck to both the caregivers who posted here. It is difficult - very difficult - to maintain composure and not react. Don't know how you managed. Kudos.

Hi Linda,

With "tears" of joy I write this post.  YOU my dear friend are too awesome for words.  In your struggles to hold onto Carmen you reached out to all of us.  I felt your pain and wanted so much to give you a real hug.  Where you got all your strength from I will never know.

As I continue to walk this walk with John, who received his 26th chemo treatment today and they talk about giving him low dose radiation for 13 sessions after his last chemo treatment next month, I get scared.  I know what you went through and it wasn't pretty and it was tough.  John said Sheila I don't have a choice, because what they learn from me.. It may help someone else in the future.  I know that was what Carmen would have wanted, he would have wanted people to learn from his experience. They were alot a like.  Very giving and very caring people.  That was why you loved Carmen so much and wanted to hold on to him.  In the end it wasn't Carmen anymore.  Don't ever have any regrets about your decisions, you always did the right thing!  

I am so glad that you are able to live again.  My life is on hold right now and either John is going to make it and we will live again together and I will post that John is doing great or I will one day find the strength to write a post like you have written.  I know that is what the real Carmen wants for you.  I am so happy for you my dear friend, even though we have never met we are sisters in spirit.  

Take care and May the Lord continue to watch over you and bless you!

Love,

Sheila

Linda, I am SO happy to see you post here again.  It's wonderful to read that you have found happiness again.  You were a marvellous wife and caregiver to your Carmen.  I only hope that I can be half as good a caregiver to my sick son.  I can never imagine reaching the place you're in now.  It's the time from now, when my son is not too ill until I get where  you are, that worries me.  I cannot let myself imagine the pain that will come eventually, when we will lose him.    Please stay happy - you most certainly deserve it.   God bless and love, Marian x x x x x

Linda, so good to hear from you!!  I cannot believe it has almost been a year.  I'm so happy to hear that you are now able to live again.  Josh has had a pretty rough go since January when his chemo's were switched.  I think we have lived in the hospital more than at home.  Our daughter is now 3 and doing well, but I see all of this impact her more and more every day.  Continued prayers for you and your kids!

Sheri (wife of Josh, dx 9/2010, "slight" regrowth at original site 12/2011, stable MRI's since, but been quite the journey since 1/2012.....  he's still fighting!)

CB: http://www.caringbridge.org/visit/joshslusser

Hi Linda,

I didn't know you back then, but I just wanted to say that I am so sorry and so very happy at the same time for you!  Thank you for your honesty, as it really means a lot.  In being honest myself, I've wondered what I will do when that time comes, tried to prepare, even though I know that it won't help.  We caregivers love sooooo deeply, sacrifice all we have, all we are, cease to exist in some point in time, because we want to give our all, and then some. 

I too journal, sporadically, but it helps, and it already pisses me off to see happy couples, or couples bickering, or old people chain smoking, or being a**holes to others.  It's so funny, someone cut my sister off as we were leaving one of my husbands infusions (he's on Avastin, the last straw) and my dear hubby FLIPPED THEM OFF!!!  He then said, what are they going to do to me?  I have a brain tumor!!  OMG....LOL!!

I'm so happy for you and yours, that you are happy, ALIVE.  You have lifted my spirits today, and having been through this with my mother, father, 1st hubby (who committed suicide when I was only 19 and we were separated), that I KNOW my Bill will want me to do the same, when that time comes.  To live, dream, lift up our children, grandchildren.  God Bless you Linda : )  Thank you!

Linda,

Such a loving and devoted wife to Carmen!!!  You DO deserve to be happy! I still have days that are almost unbearable and I have to fight against myself to let certain memories of what brain cancer did to my Eddie, our family and our lives. I am coming up on one year myself, June 29th.  The hardest day so far was our 20th wedding anniversary. It still feels like a bad dream to me.  Everything I knew, all our expectations of the future are no longer.  I would be lying if I said that I have adjusted to the unknown.  We have three daughters and it has impacted them very much.  I will admit that I am not the same person I used to be, but I am trying to be happy.  I had those days of selfishness too and I know now that it was wrong for me to want him to be here just because that is the way "I wanted it to be", but when you love someone you just can't help it and I think it is natural for all of us to feel that way. Just like the previous poster said, we DO love so deeply, sacrifice everything and exist only for the one we care for, but in the end it was ALL WORTH IT, because we know that we gave everything we had for our loved ones.  I look forward to day that I can make a post like yours, announcing my life as happy and full again! I am working on getting my relationship back with our girls, as they were neglected, in a sense, while I cared for my Eddie.  I am proud of you and Carmen would be so pleased to see that you are ALIVE INDEED! Thank you for keeping up with us!

Much love to you and your family!

Stacy/Wife of Eddie (GBM 07/10-06/11)

Together forever/Forever together

Hi Linda my friend and fellow warrior.

So good to hear that you can at last be happy again. You were  such a great caregiver and loved Carmen through his darkest hours. He would be pleased to know he gave you the strength to live again.  It must have been so hard with 6 children and all the cares of keeping them and Carmen and you together safely.  There is no way anyone can judge you as no person has ever walked in your shoes. 

It has been 6 months and ten days since Tony has been gone.  Oh the indignities he suffered and he was such a dignified man. I can still not talk (or type) without the tears streaming down my cheeks. I have reopened my store and my clients are coming back.  I actually went to a hospital fundraiser with freinds.  I have learned how to breath myself out of panic attacks and total breakdowns but I still have to be by myself to get it together (lots of wandering)  I am gradually learning how to live without him but can not see yet ever being really happy. 

This journey has made us all warriors and strengthened us and given us more compassion than we thought we had.  I will laugh again and occasionally do for real but right now I mostly just wear a smile and a perky attitude because that is what customers expect. But they better not ask how Tony is or I fall apart in a puddle. 

You have been a good and faithful warrior and friend and I wish you all the happiness that you can find.  Meanwhile you give me courage to know there will be sunshine again.

Thank you    Love you

Sandy