jmoneypenny

Dear Lisa,
Your father sounds like such an amazing person – I’m glad to have kinda “met” him through this board. His dark sense of humor sounds just like the humor we have in my family – my mother retained it until about a week before she passed, it’s not something everyone understands! But you do, and you’re right to try to keep joking. But it’s also okay if you cry a little in front of him – he’ll understand. Just be yourself and he will be happy with you no matter what you do. He loves you unconditionally, after all.

I know you are treasuring every moment with him and my heart breaks with you. I hope you can keep your dad’s spirits up – and yours.

-Joyce

Oh Lisa, I am so sorry! I dearly hope you and your mom get the support you need in this nightmarish time, and that your dad is at peace because he’s with his loving family for the time he has left. The three of you are so lucky to have each other. I wish you peace – write anytime you feel the urge. So sorry.
Joyce

Hi cdr,
Forgot to say that your posts are great and thanks for sharing from the perspective of the patient – it’s really helpful and you have a great attitude! Hope you’re feeling somewhat better – go out there and blog some more!
-Joyce

Dear Lisa Ann,
I was away all weekend and just now catching up on your posts. I’m so sorry that the brief time of feeling better didn’t last longer for your dad. I guess you didn’t get to do anything for your parents’ anniversary, then – but I’m sure you all celebrated in your hearts that you still have each other – such a precious thing to be grateful for, and you only truly realize it when it’s all being threatened.

I know you’re feeling terrible right now but I know there’s also nowhere else you’d rather be than by your father’s side, even just watching him sleep. You’re a wonderful daughter and I’m a little envious of you, believe it or not, that you still have your dad in this world and can do little things for him. I’m not saying that to make you feel bad or that you’re lucky – it does sound horrible, doesn’t it? We never want our loved ones to suffer but there’s that glimmer of selfishness that wants to keep them here for us. I would never want to go through what you’re going through – again – but at the same time any memory of being with my mother is precious, even the end.

I know you will figure out a way to keep a little hope alive in your father, no matter what the results of the tests and what the doctors say. He may get depressed because he realizes the situation is bad, and you don’t have to lie to him, but just a little bit of hope to keep all of you afloat amidst all the pain. Your job right now is the hardest one of all: you’re bearing the burden of all the anguish and you feel like there’s nothing you can really do and you can’t show any of the helplessness, fear and sadness. It’s what you have to do for your beloved dad, but I know it’s hard, it’s heartbreaking. Just always remember that you are doing everything RIGHT and there’s no reason to feel guilty or like you’re not doing enough.

There may still be some real treatment they can offer – some way to alleviate the vomiting – so maybe it’s not as bad as it seems. We can never predict how this evil disease will progress. Here’s hoping they can do something.

Don’t give me too much credit for being a caring person – it’s partly selfish, because re-living my mother’s nightmare is actually therapeutic for me and it’s something I need to do. So you’re actually helping ME by letting me relive everything and vent a bit. If I can help you just a little bit, just by being there for you, it makes me feel I’m doing something for my mother. So you are not only caring for your dad, but for me, too!

Lisa, I hope there’s some good news coming your way soon. Thinking of you-

Joyce

Sorry I was bit confused in my last post – I meant to say I second everything Missing U said
Joyce

Hi Jules,
I relate so much to what you are saying — the anger at the cancer, at the world, at yourself for not doing enough. You must know in your head that you did everything possible and you could not have changed the ultimate outcome, but the guilt and the re-thinking still happens over and over. Your dad would NEVER think you let him down — you did so much for him!! but this grief is just not rational, not at all.

In the beginning my anger was so bad that I was mad at EVERYONE for being alive when my mother isn’t. I still have those moments, especially towards my in-laws, since they don’t seem to appreciate the fact that they’re still alive and able to see my daughter, when my mother isn’t. And I still have those moments and I still don’t want to socialize or talk about inane things with people – I blew up at my husband a few months after my mother died because NOBODY would mention my mother in front of me and that’s ALL I wanted to talk about, all I could think about. It’s as if the rest of the world has forgotten, as if no one is aware that the world stopped spinning on its axis on January 22nd, 2007. I could only be with my mother’s dear friends and my “adopted” brother, because they were the only ones who would cry and grieve with me and talk about her last days. It’s so necessary to do that – painful as it is, you can’t just go on as if nothing happened. Though I, too, spend hours at a time just pretending it never happened, but reality always intrudes somehow. I think the denial trick is a wonderful coping mechanism and I still won’t admit that she’s gone, because if I fully accept it, I’ll go insane. The anger is a better outlet to channel the extreme emotions you feel at this time – or it is for me, though it’s somewhat scary.

I’m sorry for rambling – just want you to know that your pain and anger, though unique and indescribable, is similar to mine and you should try to be easier on yourself – easier said than done! I don’t think there are any words to truly comfort at this time, but venting does release some of the emotions, so vent away. Pain like this can never be understood by people who haven’t gone through it themselves, which is why I always turn to this board for answers, affirmation and venting.

I wish you peace and eventual relief from at least some of your anguish-

Joyce

Hi Carolann,
I agree with you and with everyone else on this board – a celebration of your mother’s life is the right thing to do. You’ll also be mourning and missing her, but what else would you do on her birthday? Would it be better to sit around alone thinking of her and being sad, or getting together with others to remember how special she was? My mother’s 65th birthday was a month after she died, and a few special family members and friends got together at her house like we used to (it wasn’t cleared out yet), we made a big dinner, had a birthday cake with her name on it, sang happy birthday (okay, that part really choked me up), and let my daughter release a balloon in the sky as a message of love to Mom. Then we watched video clips of her and laughed and cried. It was sad but it was joyful because it was the closest thing to having her there with us.

I felt that if we didn’t acknowledge her birthday, it was like saying we didn’t remember her and didn’t care. It’s a wonderful way to spend the day thinking of her in a positive way without being told you should get over it – just a day to wallow in your grief, your wonderful memories and share them with others. It’s much better and more therapeutic than a funeral, which can be completely sad.

In the end, I always ask “What would Mom have wanted me to do?” and I know she would have wanted a big party for her loved ones, as Scragots said (happy birthday to you, Scragots!) So, what would your Mum have wanted? That’s all that matters – and what YOU want, too.

I miss my mum so much, too.
Joyce

Hi Lisa,
Oh, this is so tough for you! I know you have to respect his wishes, I agree with everything cdr said, but if he’s hallucinating he may have ammonia buildup or something that sounds like that that I”ve read about here, so he may not be really capable of making a rational decision. My biological father had brain cancer and became very cantankerous, wouldn’t let anyone change his bed, became verbally abusive – not because of the brain necessarily, they said it may have been the steroids or dehydration or the cancer, they couldn’t tell – but he wasn’t really lucid, it wasn’t really HIM, if you know what I mean. THey did manage to regulate it and get him back to his cranky but normal self.

I dearly hope you can ease this latest pain somehow – if you could just get someone to make house calls! I suppose there’s no way to call an ambulance to pick him up? He really should be seen to – that was the advantage of hospice, that the nurse could come right to you. Will you even be able to get him to go to the doctor tomorrow?

I’m thinking of you and worrying and I wish I had some way of helping.

Hang in there,
Joyce