One patient with glioblastoma still alive nine years later
by sum1sumwhere on Tue Oct 09, 2012 07:02 AM
So here is the deal, I acted as my best friends husbands caregiver, I love my friend and I did everything I could to try and help but I feel like I failed them both.
At best I'm socialy awkward, and from the moment my plane landed I bungled things up, I entered his hospital room and asked "How are you?" And things ended with me and her mother getting into a row because she is a rude snarky witch who cares nothing at all for my friend.
But that is neither here nor there, The whole thing lasted a month, from the time they found out he had cancer to the day she left my house after the funeral...
I provided the heft of his care since she is physicaly incapable of doing things like trasfers to and from a bed, her hubby was not a small guy, close to 330lbs at the end, a lot of it was water weight due to his kidneys shutting down after his chemo failed... Things started out fine, I got to know her husband and we would talk late at night when his meds wore off (They did not give him nearly enough meds through hospice.) But the day before he went unresponsive I was transfering him from the wheelchair to bed and he just collapsed on me. I swear I think I killed the man!
I know that is not true, but I feel like I did, and I find myself sitting in the dark sobbing that in trying my best to help I only helped in making him pass faster... It is illrational at best, I was told by the RN that he would have gone when he did regardless, however I can't stop myself from thinking "what if" Has anyone else had this type of experiance?
Hospice has someone for my friend to talk to but people like me we have to find someone on our own using our own money or insurance, neither of which I have.
I can't imagine what my friend is going through having lost her husband, but for me I'm having a hard time after watching him slip away a little at a time, and then dropping him and trying to be there to help his wife like I promised him I would after he passed.
I know my friend needs me, needs someone she trusts to talk to but I find myself praying that she does not call me... and that makes me feel even worse, here I am avoiding the person I care for and I am not sure why. I cared for her husband, I took care of making living arrangements for her after he passed, I delt with hospice, I made sure his body was treated with the best care because I did the cleaning and dressing because the RN was unwilling to do what my friend wanted in the way she wanted it done as these were his last wishes. I packed their apartment and moved it all so she would not have to and then brought her to my place so she could process without having a ton of people in her face.
Not once did I leave either of their sides, I stayed with his body until they took him away, and I stayed with her until she had to go home.
Yet I still feel as if I failed them in a profound way.
Am I crazy? I feel like the only one who has had to try and deal with these feelings, I'm not family so I don't count as a person who might need help in the eyes of hospice, and we are so young (30's) that noone I know has had to deal with something like this.
Even my husband can't understand why I have been in such a funk for the last few weeks. But he did not have to see any of it, he did not sit there fighting to make sure my friends were treated like people and not numbers, all while stopping up what any normal person should feel when faced with something like that.
Sorry to unload...
by mrsrcc on Tue Oct 09, 2012 12:06 PM
Please don't beat yourself up. It sounds like you have done everything in your power to help your friend and her husband - far more than most would have done. You have been the strong one and now the burden has been taken away you need some time to readjust. Take some time out for yourself if you can. Simple things like walking in the autumn leaves, having a massage, go on a 'date' with your husband or even a short break if you can.
Can you pluck up the courage to make the first move and call your friend? That way you are taking control and not stressing out waiting for her to call you.
Try to re-read your posting from the viewpoint of an outsider. You have been an angel!!!! Make peace with youself. You deserve it. Sorry I cannot do more to help.
by sum1sumwhere on Sun Oct 21, 2012 05:44 PM
Thanks for the replies everyone.
I took your advice and called her, I have a feeling that things are going to be a bit bumpy for everyone for a while to come but that first conversation seems to have got the ball rolling.
Good advice thanks.
We now have a weekly check in call set up, so that we can stay in touch and she knows she can call me sooner if she needs to talk/scream/cry. Which I am happy to report she has done. I have had more than one 1am call from her and we have made summer plans to get together.
I hope that everyone here find the strenght to pull through what ever it is that they are dealing with, and that they have someone they can count on to be strong for them if/when they need it.
Blessed be to all.
by claretea on Mon Oct 22, 2012 11:15 PM
i think alot of us feel as though we are to blame in some way, not fighting harder for more chemo or even a chance when my sister needed it, her falls, not being able to take any of her pain, not being able to do anything but sit and talk with her while it distroyed her, not realising how ill she had been, she was still going home from hospice daily to see the kids, out shopping, she only went in to get her meds sorted
not being ble to see her kids grow up, even my own life style, why her?
it continues daily, i see alot of posts from a lady in a PC group who lost her lad 4 weeks before my sister was taken from us and every day she ends her posts with sorry
i beleive we did everything we could but still get the nagging doubt that 4 weeks before she was taken she could only have my mum & her husband at the oncology appointment, they said chemo would make her bedridden, she would never get back up were as she was getting out daily her pain meds were under control to a certain extent, i waited outside and we cried as she said 'i am not going to be here in 4 weeks', what if i had argued it out and helped her fight it
she was taken 3 days before her scan and appointment, she did everything they said forced herself to eat, stayed positive, we prayed everything your told to do yet she was still taken too soon
think we will always be sorry she is missed so much xx
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