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what do i do now?

myst829's picture
myst829
Posts: 4
Joined: Jun 2009

Hi everyone,

My name's Melissa, I'm 28 and live on Long Island. I was searching for actual caregiver support groups when I came across this forum.. I lost my father 3 years ago this August to lung cancer. He was 56.

I just can't seem to get past all the memories I have good ones and ones of him sick. In these last three years I've made some major changes, had some great accomplishments in my life, and all I feel is that I wish he were here to see it. I know some people will say his spirit's watching and to some degree I know he's around but it doesn't comfort me at all.

The result of the pain I feel at losing him has caused me have some emotional detachment to those I love, all because I dont think i could bear to have to care for and lose my mother or my husband if when that ever happens.

When my dad was diagnosed i was 23, and the day they told me i think it shattered my heart. I knew were in for a fight, the fight for his life. He had his lung removed in may of 2005, I took a leave of absence from work for 3 months to help him recuperate so my mom could also work during the day. Towards the end of the summer he still wasnt able to eat even though they only did one round of chemo and stopped. He started to vomit some clear fluid, and we went back to the hospital. Shortly after that they decided to do a broncoscopy, during the procedure he had respiratory trouble and had to intubate. Me and my mother were told that they recommended my father be put in a medically induced coma. When they had done the original surgery they had grafted a piece of muscle onto the stub of the bronchial tube. The chemo lowered his immune system enough that he got a fungal infection in his empty chest cavity which ate away the muscle they grafted.

Over the next two weeks they did surgery repaired the open hole on the bronchial stub, only to have pressure from the respirator blow it off. The tube kept moving in his lung and we were told that when they pulled it out to reposition it, if the tissue swelled that was it for him. They changed it 6 times. They then had a trach tube put in and re did the surgery. This was September. They kept him in a coma for 24 days.

my mom, me and my fiance (now my husband) were at the hospital everyday. We would take different shifts (he was in ICU). There were nights i would just sit in the dark by his bed with everything beeping around him and just cry and cry.

After the 24 days they felt the surgery had enough time to heal that they would start reversing the effects of the coma. By the time he had really started to wake up and was aware, we had filled his room with letters and colored drawings- the wall of hope we called it-, decorated it for the fall. it makes me smile to remember when he woke and saw the decorations that he though it was Thanksgiving and told us to go home and have turkey.

Daily we'd have to explain what happened to him. as he healed at one point we received a phone call at night telling us he had a high fever and would probably become septic by morning. They said he had 36 hours. That next day my mom left very early to go to the hospital, i slept late because i almost couldnt bear to go. after she returned home i left to get gas and on the way i started crying so hard i couldnt see and just went right home to my mom and asked her to go with me. i couldnt face my dad, how could i go in there with a smile when i knew he was dying?

but when i walked in his room later he was sitting up in bed and gave us the most heartwarming smile, just a i'm-happy-your-here smile. i told my mom later in the cafeteria that ui couldnt believe he was dying, he looked so good. My mom told me later that in the waiting room she had prayed for a miracle. Her prayers were heard. The next day everything was gone the fever the sepsis the blood infection.. just gone..

they called him the miracle man, they never expected him to live. he walked out of the hospital in the beginning of December.

There's more to my story but i'm sure most of you are getting tired of reading this. I just..miss him.. i miss his smile and the way his hands felt and hearing him say i love ya honey. lately the depression has been bad i lost the thankfulness i felt, the relief that he was out of pain. i lost the bigger inspiration he gave me. i dont feel that i was lucky to have him for longer, i just feel like why sint he here? i see young people with both their parents and i'm jealous. i just dont know where to go anymore,i just want to let everything i've achieved fall by the wayside, i just want to hide in my garden, my house my apartment and be by myself..

help me save myself

~melissa

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

it isn't hard to see that you are in need of serious grief counseling. If you have tried professional counseling and it doesn't seem to be helping, then try another counselor. Talk to your medical professionals about meds for depression.
You obviously had a wonderful relationship with your father and the greatest mark of respect you could offer to his memory is to get the help you need to move to a more positive place in your life.
What you are thinking and feeling are entirely normal, but it has been long enough since your father's passing that the various stages of the grief process could have been resolved and you could now be spending your days in ways that honor your father's memory rather than hiding from the world.
It takes work but it is doable and worth it in the long run. God bless.

myst829's picture
myst829
Posts: 4
Joined: Jun 2009

you know.. i dont think i realized that it is abnormal .. the way i feel... i think maybe some place in side i've wanted to hang onto these feelings, because the pain is real and if it goes wouldnt that mean that my dad really is gone.. but i think you're right, and i found some info on here about "complicated grief" which is people not moving on refusing to accept the death etc, which is me to a 't'.. so i'm looking now for some groups.. but i'm curious as to how everyone else copes with losing somebody.. what they do or have done.. thanks again

Terry_s wife
Posts: 21
Joined: Mar 2009

You take a day at a time. I lost my husband June 30, 2008 and am approaching a year. I started seeing a therapist in March and he really helped (w/o meds). I knew at our last visit that when I didn't burst into tears I was going to be okay. He said the same thing and left it open that if I needed to come back I should. Another thing that he did that really helped was had me begin journaling. When I began, I cried as I wrote but the more I wrote the more I could put the good things down. I also found that by writing down things that happened during the day when I was at work and adding my feelings really did help. In the last couple of months I have begun doing things for me - I've had my yard cleaned up and shrubs planted; I brought in dumpsters and have been cleaning up the property. I figure that when I get the outside looking better and feel good about coming down the driveway then I will want to begin the inside. Working on that one - slowly but getting there :). Things that you can do now: buy yourself a nice journal and begin it with all the things you enjoyed doing with your dad; add things as you think of them. Gradually add your feelings today. Talk to others that knew your dad and share stories. One thing that really hurt me and to this day does is I have 2 stepchildren that I have not heard from since Christmas. I was with their dad for 26 years and married to him 21 when he died. I also found that I have a handful of people I can count on hearing from. I guess the bottom line of all this is to take it a day at a time. Cry when you want and find a support group or doctor, but whatever you do, DON'T shut your husband out. He's the one that will be there and support you. Okay I'm running on. If you happen to be in the Atlanta area, I can give your my dr.'s name. He is terrific. Keep the thought one day at a time, one thing at a time. paula

myst829's picture
myst829
Posts: 4
Joined: Jun 2009

when my dad died in august i began college the following january.. i had decided to switch careers.. i think i threw myself into school which isnt a bad thing but i remember driving to school -during finals- which was 25 mins away, and my dad use to work for ADT alarms, and on the expressway i saw an ADT truck i just started crying, but i kept telling myself i can't do this now i have a final to take.. that wasnt the only time that happened, but maybe i've buried the hardest part of the pain b/c i felt i couldnt get on with my life otherwise.. is that wrong? how crazy is it that i want to hold onto this pain b/c its real and connects me to him but at the same time i've tried to bury myself in other things so i wouldnt have to fully feel its effects?

i did find a website/place called cancercare, i'm waiting for a call from a social worker that just deals with people that have been affected with cancer.

i have to say even though i've only just joined here i'm glad i did, it helps to have people that can understand and sympthaize with what i'm going through..my mom is a great woman but she has a spiritual outlook on his death, and it comforts her enormously.. in some ways i think she cant understand why i'm still so upset over it..

AlwaysHaveHope
Posts: 29
Joined: Jan 2009

Hi,
How are you doing? I know, I hate that question, too, but I feel that it is appropriate to ask. I can relate to you and your situation. I am 24 years old and my mom passed away June 5, 2009; just a couple of weeks ago. Strangely, I have found that I am not reacting the horrible way I thought I would when that day came, which makes me feel somewhat like I am dishonoring her, somehow. But I guess the reason I am reacting differently than I expected I would, is partly because I feel like I've inherited my mom's strong will and determination and partly because I know that my dad and sister and the rest of my relatives need support and someone strong to be there for them. My mom was the most important person in my life and was always there for me, always listened, and we used to do everything together; there was a time when I used to think that she was the only one that really understood me and the only one that really loved me (of course I realize now, my dad and the rest of my family care a whole lot more than I ever thought). My mom suffered for more than a year from Papillary Renal Cell Carcinoma (a rare form of kidney cancer). I slowly watched as my mom suffered side effects from treatments that did nothing for her and never thought that I was going to loose her this early on. Her dying at age 60 and looking as good as she did (always putting on a good face), surprised a lot of people.

Some people ask whether it is better or easier for family to loose someone unexpectantly or to have time to deal with the fact they're going to loose someone they care so much about. My opinion...I think for me it would have been harder to have lost my mom unexpectantly out of the blue, so to speak. I'm not a very religious person or at least, I wasn't raised on religion, but I am thankful to God that I was given an extra year after her surgery to be with my mom and to help care for her; be there for her during her struggle.

It is early on in my grief right now, but like you, I am finding it hard to let myself have a good time, because when I do, I keep thinking about how my mom's not here to enjoy this moment with me. Also, like you, I am having a hard time with those moments when certain things remind you of the one you've lost or certain memories that you have a hard time dealing with still linger. Like, right now, I'm still trying to get past the memories of my mom being sick and the haunting memories of spending my mom's last night on earth watching my mom slowly die in a hospital bed in the livingroom and I'm hoping that soon those memories will slowly be less evasive and the good memories from before the cancer, will return. I also, can relate to the ADT truck moment you had...for me it was when I had to get rid of my mom's clothes within only a few days after loosing her and the moments I have when I'm cleaning up around the house and hear mom's voice in the back of my mind telling me things she used to say or had said at some point, like "pick up my shoes" or "try to remember your dad's going through a tough time, too".

And I let myself cry more now. I've noticed that I've become over the last year someone who's always tried to put on a strong face and not cry, so that I could be there for everyone, like as if not crying would really help the situation. But since mom's passing, I decided I can't do that anymore. When something like an item or a moment reminds me of my mom and I feel like crying about it, I cry, because I've realized that is a part of healing and letting your emotions out there.

I don't know if this will help, but I'm finding right now for my own situation, something that helps is to be surrounded by friends and family, but to also allow myself some "me time". And kind of like what you did in your situation, I went back to work. I found being busy at work, in a weird way helped. But, if I can give any sort of advice to you, it would be to not bury your feelings (it's kind of like locking up something in a trunk and setting it aside, what you locked away will still always be there, until you open the trunk one day); not addressing the problem just makes it worse over time. Something my dad told me after mom had died, which really sticks with me right now and I even cry about when I think of it, is that my mom on several occassions leading up to her final days, told my dad how she was worried about me. She was worried because she didn't know how I was going to be after she died and that she wanted me to have a life of my own, not continue to work, come home, & go to my bedroom as I do day after day; she didn't want me to miss out on life and all the great experiences it can bring. Knowing that me and my future was a major concern that my mom was thinking about in the last days of her life, I think is what keeps me going, and is what drives me to not swallow myself in grief and is what will motivate me to get out there and live life. Because if anything, mom's cancer taught me that life is short; too short.

But, anyways....I hope that you will continue to seek support, this website we're on right now, has been an incredible source of support and understanding that comes from people with similar situations, for myself, and I hope it will be for you. Feel free to take a look at the posting I created a few months ago on the discussion board under Kidney Cancer.....it's called "Papillary Renal Cell Carcinoma-Anyone Experiencing this or is a Survivor?" There are some incredible women there that I have been posting with and they offer some great support. I hope that my words here today have offered you some encouragement, some hope, and have helped you realize that you aren't alone in the way you are feeling and grieving, and that it is normal to feel the way you do.

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

some valuable wisdom in your post.
I think the key to overcoming such terrible losses as the ones you and myst have suffered is in your words about living and enjoying your life as your mother would have wanted you to do.
We can offer no greater mark of respect to those who love us than to strive to become the kind of people they see us as being. As a mother of two adult children, I know that I feel no greater joy than when I see them living fully the lives they have been allotted.
There is a process of grief that must be acknowledged and endured but it need not consume us.
God bless you both.

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