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Glioblastoma Multiforme grade IV perspective from a care giver

iamkyrieeleison's picture
iamkyrieeleison
Posts: 2
Joined: May 2012

I came to be by the side of a 47 year old man who was diagnosed with GBM in May of 2011. I thought, "I can go be by the side of a dying human and be his friend and happy strength...I got this." I moved 150 miles to the other side of the state, to a whole new climate that's how far I moved... to begin my promise to him. Completely ignorant to what caring for a brain cancer patient entails; I showed up and made my place by his side. He has no family that is able to care for him and he is absolutely indigent. In spite of all the character defects that I have, I would not change our experience as we battle the brain cancer together. I am sad alot and mad alot. I watch him suffer and decline from an athlete to someone who can barely walk. The tumor was on the speech side of his brain and the resectomy left him with a huge speech deficit. I try to remain upbeat and casual in this anything-but-casual situation. His tone of voice has changed and quite often he has the demeanor of a little boy. I watch him run the gammot of 'life ages' all in one day. He has so many doctors and so much medicine and he is so fragile. I try not to cry in front of him because it scares him. Almost a year to the date of the diagnosis we are engaging Palliative care. I am going crazy taking care of him all by myself. I am a fitness person by choice and I feel guilty leaving him to go for a run because he can't run anymore. I won't leave his side. He is dying and according to all the research and conversations I have had with several specialists that have been involved in his care death is inevitable. He has one of the most insidious, sinister brain cancers there is. How to give a dying person hope...when the neurosurgeon told him he has 18 months to live. When his immunity system is so suppressed that any sore he gets become ulcerated, and he suffers. All the pain medication and limited physical activity cannot remove his pain. He has good moments and he likes to eat still. He likes to fish and even though I consider myself a "girl" I take him fishing and get his lures unstuck for him even if I have to wade in to get it unstuck. I am not a sacrificing person by any means (I have never been pregnant even and I'm 46!!) No maternal instincts to speak of and I am the least likely candidate to care for a terminally ill person. But I didn't know any better and I showed up. I showed up because he was alone in the emergency room, didn't have anybody to come and get him and he had just been told he has a brain tumor. I could not turn my back on this human. He was all alone with a brain tumor in his head...that to me is a human travesty. Well, here comes the unfolding of a whole life process:that's what caring for someone who is battling brain cancer is doing. Well, it takes a BULLET PROOF SOUL to watch someone's life unfold to the death.To be 100% selflessy involved and invested in this person's life quality is heavy, but not a burden. His medication list is long, his side effects are heartbreaking, his office visits are many, MRIs, CT scans, bloodwork, hospital stays, the conversations are candid and futile with the doctors while they explain the remedies are life prolonging, but not life saving. We push on regardless of the mini-stroke he had from the Avastin, we push on even with the herpetic neuropathy, We push on in the face of financial devastation, we push on to push away from the end for as long as we can. How about you folks? How are you all handling this situation?

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

You are an incredible person. It lifts my soul to know that there are people like you, doing things like this, in this world. I hope that you can stand strong through this whole process. You will never ever regret the sacrifices you are making now. One day you will look back at this time and you will feel honored and privileged that you were able to help this man in such an incredible, self-sacrificing way. I'm going to be praying for you, that God will bless you and give you strength for what you are going through. Please keep posting on this site and let us know how you and your friend are doing.

My son is fighting a recurrence of an anaplastic oligodendroglioma. He was originally diagnosed in May 2009 and had the recurrence in July of 2011. He is in pain but not terrible pain. He is doing Avastin and carboplatin and not doing good…we did not get the favorable response to Avastin that we had hoped for.

My heart is broken and the grief is killing me. You asked how we handle this situation? I handle it one day at a time….one moment at a time. I give in to total dark despair and I weep in private during the bad moments and I walk on air during the good moments. A good moment is when he can say, "Can I have something to eat?" or "Can you help me up to use the bathroom?" A bad moment is when I ask him if he is thirsty, comfortable, whatever, and he looks blankly past my face into space with no sign of any comprehension . Or when he is thrashing around in a seizure…or when I go in the room and he is blankly staring off into space and I can smell that he has had a bm in his Depends. My son is 28 years old.

Having read what you are going through and reading posts on the caregivers boards have given me a little bit of perspective, and I realize my situation could be a lot worse. Most of my pain is from seeing my son slowly fade away right in front of my eyes. I have a lot of support people in my life, and a lot of help caring for my son. But no one can help me carry the grief and pain I feel. I just have to keep on going down this road. I'm doing everything I can to make sure my son has the best, the most tenderest, the most compassionate care that he could possibly have. When this nightmare is over, I will take comfort that David knew how much he is loved and that he was treated with respect, honor, and compassion all the days of his battle.

Stand strong!

Love and blessings,
Cindy

ncgrl84
Posts: 14
Joined: Apr 2012

I can completely relate to everything you just said. I'm 28 and I do not have children, nor do I want any. I find myself to be easily annoyed and bothered by other people. I think I'm incredibly selfish. I love my mom, I really do, but I've always been the type to do what I want, when I want.

When she was diagnosed with GBM4 last month, I too, stopped my life completely to care for her. I was a full time student majoring in Biotechnology finishing my third year. I'm all she has left. I knew it was the right thing to do, and I was going to do it even if I whined the whole way. Over the past month, I feel like a part of me has become more bitter, but another part of me has learned compassion for my mother. I watch her struggle daily trying to perform the most simple tasks and it breaks my heart. I'm learning patience as I go. The doctors always seem to tear her world apart at every visit, then I'm left trying to make everything okay again. I know deep down inside that it's not okay. This disease will eventually kill my mother and I will watch her suffer, cry, and lose her mind in the process. It's absolutely devastating for both her and me.

I struggle trying to juggle all her appointments, keeping her medications stocked, and getting her doctors to communicate with each other about her healthcare. My mom is a veteran so she's a patient at the VA Medical Center and she also sees private doctors outside the VA because they didn't have anymore room for her. The VA is a death trap and the private doctors are unable to get a hold of her VA doctors... it's a nightmare! They need to communicate because her treatments affect one another. I'm ready to rip my hair out with them.

Meanwhile, my mother's family all live out of state. Most of them I've never met in the 28 years I've been alive! Now suddenly, they are back in her life, and for nothing more than to try to mooch off her!!! I took over power of attorney and she had a will made out... They aren't getting a thing out of this! It makes me sick to watch how quickly people flock when someone is dying just to get a piece of the pie. It's pathetic, really.

I commend you for what you have done for a man that's not even your family. That says a lot about your character. Nobody is perfect, but the fact that you took it upon yourself to help a dying man in his last days is freaking incredible! I can't imagine doing this for someone else. You have a big heart... don't ever let anyone take that from you.

I'm curious... How did you meet him?

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Wow good for you. This isnt for the light hearted, weak, or the part time friends or family...Its the worst of the worst, its the nightmare that you dont wake up from. Its the roller coaster that makes you vomit and turn green. Its buckets and buckets of tears.
Its bleeding hearts and disappointments...
But when you love someone so much you give them your all. You buck up and do what you have to do. You do everything to give them anything they need. Thats love !!!
I would of give my sister the world, my arms, legs a kidney, a lung, blood anything to save her. But it was the little things that made her smile. It was root beer floats and hawaian punch, sound little but it was big to her. I made them into little popcycles because she couldnt swallow well and the end. She told me it was a good idea and smiled at me, that was all the thanks I needed.
I know most of you on here are on the roller coaster, that I know all to well.Im off the ride, but the recovery is slow....

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

"...heavy, but not a burden." Thank you for that. My husband was diagnosed with DIPG in January 2011 and I know it's killing him that I have to deal with his cancer. What you said- that is exactly what I need to say to him.

How am I handling this situation? Um...poorly? LOL. I feel like I'm going crazy every single day. But, like Cindy said, you take it day by day, moment by moment. I try not to think too far into the future, because it scares the hell out of me. I try to be present. I try to let him know every day how much he is loved and how wonderful he is, because I never want him to give up. I have no real-in person, day to day support. We live in Hawaii and all of our families are on the mainland. I come to boards like this for support. I have 2 people I have connected with through Imerman Angels. I really don't talk to my friends and family about it too much, because, honestly, it irritates me because I know they just do not get it. I cry in private. I probably hold, hug, cuddle and love on my daughter maybe a little more than I would if we weren't going through this.

You are an angel to this man. Thanks for doing what you do.

Leslie

Scottgri
Posts: 44
Joined: Mar 2012

Thank you for sharing this story. I was drawn to this topic because I wanted to try to understand the caregiver's perspective, I am 1 year past my initial GBM4 diagnosis. I had a lot of things going for me all considered and hope to prove it is in remission with a PET scan in July.

This is hardest thing i have ever had to deal with, knowing my ife was lying next to me when I woke up crying because I was afraid it was all over added the comfort I needed to push through it. It also felt good for me to be to do the same for her.

I am fighting and winning, but on the rare occasion i do have those dips into end of life thoughts and what will it be like??? I don't mean to be flippant, but I hope it's a heart attack 30'years from now....i don't want her to have to worry aout me and take care of everything should i get bad, I will feel Ike a burden and that's hard for me, how can all that work not be if I can't take care of myself? We've discussed it and she actively and without question wants me to stay home forever, but I don't know how I would be able to watch her have to work so hard for me. She's an awesome woman who has stood side by Side through the entire fight. This diagnosis sucks, for now I am going to right like mad until I win and hope I never have to worry about alll that stuff I just shared.

madisonmuzz
Posts: 13
Joined: Apr 2011

I am caring for my husband of 24 years. He was diagnosed with GBM grade IV in Dec 2010. Six weeks after he got home from his surgery, my dad dies very unexpectedly. Most days I feel like I am losing my mind. My dad was my rock! he could get me on a positive path of thinking with one hug and a single sentence.....

To all of you, thank you so much for sharing. My husband is still considered stable and doing quite well, but he has changed. Our relationship has changed. We are closer than ever, but sometimes that is so difficult. I have days all I do is cry and I hate to cry in front of him. I do not want him to have to deal with me and the sickness. he is still able to go to work 1 4 hour shift per week. He is still driving and helping out as much as he can around the house. I am working full time. I am health care worker. There are some days that is so hard for me. I go to work to take care of people then return home to take care of my husband. Like I said, he is still doing well, but the fatigue is unbearable at times.

I have family around, which are very supportive, but his family doesn't seem to get it. His mom calls maybe once a week. His sister is completely out of the picture. She doesn't call, she didn't even speak to us at Christmas this year. My brother-in-laws are trying but they don't know what to do and most of the time I am too tired to ask them to even help.

We have been down this road before. My husbands biological father passed away from a GBM in 1989. the year after we were married. It is such a tough disease.

I am so frighted at times about being alone. We had so many plans! We have a wonderful son who helps out as much as he can but he is a college student. My son's long time girlfriend helps as much as she can, but I worry about her. She lost her mom to breast cancer at age 8. So I am so worried it will bring back horrible memories for her.

I am always having people tell me, "oh, he looks great." "He is doing so well." You know, there are some days when I just want to scream out at the top of my lungs, trying living with this diease every single day.

On my positive side, I am so thankful, he has made it so long and is doing well. It could be so much worse. But I have to say, this is the hardest thing I have had to go through in my life. And to not have my dad beside me, makes it unbearable at times. I do cry alot......

I try to stay positive and live life in the moment, but that is hard at times. We are 45 and 47. We should be enjoying the best times of our lives. Looking forward to grandchildren. Then I begin thinking, will he meet his grandchildren? will he even get to see his only child graduate from college next May? this is so terrifying and it is just nice to have someone else share their fears and how they are handling it. So thanks to all of you for sharing your stories. It helps me more than you can begin to realize.

Leslie

PS The person taking a care of the gentleman, not even family, you truly are a saint......god bless you.....

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