jmoneypenny

Hello Serena,
It’s so horrible to watch your loved one die and feel so helpless, I know! I think it’s wonderful that your grandmother is still alert – though nothing is positive in this situation, really, it’s just comforting that you have the extra time to spend with her and talk to her, knowing she can hear you and communicate. You’ve done so much for her and I’m sure she’s told you how proud she is and how much she loves you. I was in the same situation, holding my mother’s hand for hours while her body shut down, and it’s so traumatic but also so important that you’re there for her.

All I can ever say anymore is – “I wish you peace” – because that’s something I wish for myself and so hard to attain. I wish I had more comfort for you – and for myself. I’m sure I can speak for everyone on this board by saying that you and your family are all in our thoughts and we feel for you.
– Joyce

Dear Serena,
Try anything and everything you can, if it makes your grandmother feel better and makes YOU feel better. BUt only if your grandmother wants it. The doctors don’t know what’s going on, I’ve found, and you’re left to fend for yourself. We were told my mother’s liver was failing after the swelling went down in her ankles, too – and they were right, though at the time she seemed to be doing so well that we didn’t believe them (hospice told us that, and they were much more accurate than the doctors). She died a week later. BUT that does NOT necessarily mean that is what is happening with your grandmother, so just keep plugging away at finding ways to help her, because you never know what will help. As long as she’s comfortable and pain-free, I wouldn’t drag her out to see doctors, but the herbal remedies sound soothing and are definitely worth exploring. The decline can be sudden, so you have to be prepared, but it may also be a false alarm. I don’t know what CAAT is, but if it’s an alternative treatment that can be done at home, I’d look into it.

I guess I’m stressing both sides of the story here because I don’t want you to feel like you didn’t do enough for your grandmother, and have that guilt on top of everything else. None of us knows what is going on with this disease – it takes so many different forms. Just please keep in mind that anything you do will probably not change the outcome that much, and the most important thing is to be there for her and tell her you love her, whether she lives another week or another 10 years.

You’re not alone in your confusion – it’s horrible that we all wind up being doctors to our loved ones, looking ceaselessly for a cure, and we can’t just be there for them as family members as much. Don’t be too hard on yourself — you’re doing the best you can and you shouldn’t be expected to know the answers when even the doctors don’t agree.

Sorry this is sorta rambling – I wish you and your grandmother the best of luck.
– Joyce

All my heart goes out to you, Sarah, especially since I lost my mother, my best friend, on January 22nd. It’s a horrible disease and took my mother so quickly, as it did yours. Even the specialists in the disease don’t seem to know what course it will take. Please accept my condolences – there is no consolation for us right now, but it is somewhat heartening to know that we were truly blessed with having wonderful mothers, even though they were torn from us too soon.

Hello Carrie,
Sorry to hear about your mother’s situation – is she tolerating the Tarceva well, now that the others didn’t work? My own mother didn’t respond well to chemo so we put her in hospice care at home, which was a wonderful way to make her comfortable and happy in her last days. Everyone is different in how this disease treats them, as you’ll hear all of us on this forum say over and over again — so don’t lose hope because someone’s situation seems similar to yours. On the other hand, if you know the end is near and your mother doesn’t want to suffer through doctor’s visits and hospital visits anymore, and if she’s feeling tired and nauseous most of the time, and the chemo is making her quality of life WORSE instead of better, I believe palliative care is the best way to go – be with her as much as you can, make her comfortable and let her know that she is loved. As far as timing goes, I was desperately looking for signs, as you are, and there are no definite answers out there. My mother lasted only two months after being diagnosed – she was 64. And she was feeling okay and eating decent amounts of food up until 2 days before she died. The ascites in the abdomen were very bad and she was very weak, but we thought maybe she could go on for a while like that. She didn’t have very bad pain until the last two days, also.

I don’t know what you’re looking for so I don’t want to alarm you with my depressing story! You can email me direct if you have any specific questions. I might not be able to answer them, but I can give you my own experience and maybe that can help. My email is dotbaumann@yahoo.com

I am so sorry for what you’re going through right now – I know how lonely and devastated you must feel. I wish you strength and peace – for you and your mother. My heart goes out to you both. — Joyce

Dear Juanita,

I want so badly to give you some good advice on how to cope with grief, but I’m groping in the dark myself. Somehow, it’s getting worse now that all the paperwork and boring details are out of the way. It still hasn’t sunk in that my mother is gone and I keep saying “You’re not dead, you’re not dead.” I expect her to come back. I expect her to at least make a visit from beyond the grave to tell me to stop calling her back and bothering her. Days of numbness are the best, but they’re followed by days of obsessing over her, especially since I”ve had to clean out her house and get rid of almost everything pretty much by myself (my stepfather died four years ago and I had to clean out a lot of HIS stuff too, and that hurt too). That house was MY house for years and now it’s an empty crypt, a shell of itself, but I still want to go there to hold on to any piece of her that I can. Once that house is sold, I feel like she’ll be truly erased from this world, like she never existed. My 4 year old (Coco) keeps asking how to get to heaven to see Grandma, breaking my heart. My mother’s last email to my uncle, which I found recently, said “I’m not afraid of dying – I just feel bad for those I’ll leave behind. Especially Coco – I hope she remembers me.” So I try to keep her memory alive, without traumatizing my daughter by constantly bringing it up.

We all have our ways of coping, and I find I need to be with the people who loved her the most – her old friends who’ve known her since her teenage years, my friend Bobby who was like her adopted son. I get relief in reminiscing about her and talking about her, since no one else wants to talk about her – they think it would upset me, when right now it’s what I need most. Other than that, I need to be alone, since I’ve suddenly become a very angry person and everyone’s problems seem so trivial in comparison to mine. I read a few grief books and most of them were too clinical – but there’s one called “Companion Through the Darkness,” by a woman who lost her husband while she was 2 months pregnant – and she expresses all the anger and isolation and loneliness that I feel. She says that grief is a very selfish process, and that’s the way it should be – and I agree. When my husband complains that I’m not talking to him or being nice, I just think “It’s not about you – it’s about ME!” Right now it’s all about ME and about my mother and nothing else matters. I know it sounds terrible, but I think it’s healthy as long as it goes away eventually. People just have to understand that they should distract you as much as possible, talk about the departed, but don’t try to “snap us out of it.” That will come in its own time – everyone is different. It’s important to have someone to share the grief with you, just share it and cry with you and not give you platitudes about it being for the best. I thought my sister would be a great comfort to me, since she loved me mother as much as I do, though I spent more of my day-to-day life with her, but my sister is coping by keeping herself busy and avoiding thinking or talking about it. I find myself angry at her, though I know she’s hurting too, but she’s still in denial and doing things her own way, I know. Grief is not rational, I’ve learned. I have angry, petty, self-pitying thoughts that I know are not worthy of me. But that’s what happens when you’re in pain.

On top of all this, my biological father died the week after my mother. He had a rare form of brain cancer. Both were only 64 years old. Very strange, very surreal to go through this. And my 90 year old grandmother is still going strong and lives alone, though she can’t walk much anymore, so I’m trying to take care of her as my mother did. And my aunt is in the process of stealing my grandmother’s paltry savings into her name instead of my mother’s and there’s nothing I can do, though I promised my mother I would make sure my greedy aunt didn’t get her hands on it. Like you, there are some days when I just can’t do ANYTHING, I don’t answer the phone or pay my mother’s bills or call my grandmother, I just let it nag at my brain and do nothing. This too will pass, they say. I’m sure it will but right now it doesn’t seem like there’s a light at the end of the tunnel.

I know I”m not being very helpful and I hope I’m not depressing, but just know that you are not alone, though it may feel like it sometimes. And it does get better with time, as I know from my experience with my stepfather’s death (who was my real father to me). If we could just go to sleep and wake up 2 years from now, that would be the best solution. Grief support has been highly recommended too. I’m too immobilized to look into grief support right now, but I think I should soon.

I hope you’re coping better than I am and I’m truly sorry for your loss. No one can understand how devastating this is until they’ve gone through this themselves. My husband sometimes complains about his mother and I just think “Your mother is alive – be thankful!!” And I guess that’s the silver lining – this makes us realize just how much we take for granted and how much we should be thankful for. But still I feel like WH Auden in his poem, “Funeral Blues”:

Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.

The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.

Juanita – I am so very sorry. Your words made me cry, so similar to my own feelings about my mother and her struggle. We also burned the cancer out at the end. The times ahead are going to be a struggle but we will see them again. Peace to you. –
Joyce

Good for you! I hope it keeps working for you and they can resect and you can thumb your nose at this cancer! Keep up the good fight – you’re an inspiration!
– joyce

You brought tears to my eyes with your beautiful and poetic words. I am sure your mother would say that YOU were a miracle, too. I am so sorry for your loss, and so happy that you were lucky enough to know such an outstanding woman. Peace to you and your family.