jmoneypenny

Hi – sorry I don’t have much to offer, but other people’s experiences may help you a bit, may be more similar to your dad’s. Robynhar offered to share her experiences of the end of her husband’s life, and I shared emails with someone about that too, because I’m the kind of person who NEEDS to know these things. So if you think it would be too upsetting for everyone to read, ask people on this board to email you personally about the end-of-life experience with cc and what signs/symptoms there are. It’s tough to figure all this out alone, and the doctors are no help.

Best of luck,
Joyce

I’m so sorry you’re going through this, and I just wanted to chime in that the progression of this disease is very unpredictable, so don’t get discouraged by some of the stories of fast progression (like my mother’s) – everyone is different and the doctors really don’t have a clue sometimes, so don’t give up hope. What are your dad’s symptoms now, and why do you think he’s getting worse?

A second opinion may also be of help, if your dad is up for it. Many people on this board beat the odds – or at least prolong their lives substantially – after getting a 2nd opinion.

I’m not an expert on cc, so maybe someone can correct me on this, but it seems that Klatskins tumors have a better prognosis than most. Again, I could be wrong, but that’s the impression I’ve gotten.

Much luck and love to you and your dad,

Joyce

So sorry for your loss, Pam – he sounds like a truly remarkable man. This disease robs us of the best and brightest. Peace to you and your family
-Joyce

Dear Celoi and family,
I am so sorry to hear the news of your father’s passing. I hope you are able to find peace and solace in the days ahead, and treasure the love you had with him.

-Joyce

Dear Caroline’s Big Sister,
I’m a little sister myself, and I know how strong the bond is between sisters, and you must be hurting terribly – I couldn’t bear to think of anything happening to my sister.

Caroline was so inspiring to so many of us – even though we never even met her! That says so much about her and her indomitable spirit – and thank you for sharing her video (that I can’t yet watch because my connection keeps fizzing out). Because of this site, I feel like I knew Caroline, and we’re all a big family here, and you’re part of that family. I just hope Caroline and others like her will make the public more aware of this terrible disease. The victims aren’t just faceless statistics, but wonderful people with their whole lives ahead of them, and I grieve for them when they pass, as I grieve for Caroline.

I know right now there is nothing that can be said to ease your pain, but thank YOU for coming here in your time of grief and saying such kind words. You must be a lot like Caroline in some ways.

I wish you peace and some measure of comfort,
Joyce

Dear Lisa,

I just sent you an email. My heartfelt sympathy on the loss of your courageous dad. I’m also sorry that hospice made your burden heavier – please don’t eat yourself up with guilt over your dad’s last days, as you did EVERYTHING possible for him. You’re a wonderful daughter and he was proud of you.

I am so so sorry.

Joyce

Dear Katia and Silvia,
I am so sorry for your loss – all of us were rooting for your dad. There are no words to comfort you right now, so I will just wish you some peace and refuge from your own sorrow.
Joyce

Dear Richard,
I know how hard this time is for you and I see you’re a realist, like me, and you know that you will be punched in the gut when your father passes, even though you know it will happen. I am so sorry you’re going through this. But you’re absolutely right to plan ahead, and I wish I had done more of that with my mother. She wouldn’t discuss what she wanted, except cremation and a pastor to say something nice.

As far as the financial matters, if there is a will, then you should make sure you know where to find it. If there isn’t a will, it’s usually not too complicated as long as you don’t have any evil family members (most of us have at least one!) who will try to muscle in on even a small amount of inheritance. If it’s just you, your siblings and your mother, then I guess that your mother gets everything – maybe something for the children, but I’m not sure. My mother only had her 2 daughters, and we were adamant about splitting everything exactly in half, so it was fairly easy (though my mother’s sister did steal money my mother had in my grandmother’s name, the token evil family member -and it still burns me up to think about it – stealing from my 90 year old grandmother, who is still alive!) You have to get to a lawyer eventually and declare someone the administrator of the estate – your mother may want it to be you, so then you’d have to deal with disbursing the money. A lawyer can do everything for you and advise you on most stuff.

The one thing that I realize now is SO important is the actual funeral. I never liked funerals, never saw any sense in them, but when my mother died I wanted my mother’s funeral to be a TRIBUTE to a wonderful person, it was a very significant ceremony to me suddenly, and you just don’t have the time and/or energy to make it as beautiful as you would like. The night before the funeral, we were trying to pick out photos to display at a Powerpoint presentation and pick songs that my mother liked. I was so distraught that I just told my sister to pick out the photos because I just couldn’t bear to look at them. And I thought of some music, but to this day I kick myself that I didn’t think of “Morning Has Broken” or “Here Comes the Sun” – 2 songs that are so uplifting and that my mother loved so much. You just don’t think of these things when the person is alive, and when you’re blinded by grief, you can’t think clearly.

Also, if you will have a clergyperson saying anything at the funeral, find out if there’s someone your father would like or that he or you have a relationship with. My mother and I are not religious at all – she believed in God but not organized religion – so she wanted something nice and Godly but not too sectarian. I wanted the hospice clergy person, as my mother had talked to him and really felt inspired by him, but my sister got a recommendation for another guy and his eulogy was HORRIBLE! I felt like getting up and leaving in the middle of it – not for myself and my own beliefs, but because my mother would have HATED it. We even told him beforehand what my mother believed, and he just preached what HE believed, and he didn’t even know my mother beforehand, so it was like an insult to her memory.

So please think about what you would like said about your father and how you will want to honor him at the funeral – and maybe start writing something now, if you want to say a few words, too. I know it’s terrible to have to think of these things when he’s still alive and it’s very upsetting, but I wrote a quick eulogy for my mother 15 minutes before her cremation ceremony because I had no time to think before that and I didn’t even realize that I would want to say something. But I desperately NEEDED to say something in her honor and the result was fine, but could have been better if I had thought of it before.

Sorry I did my usual rambling – hopefully a teensy bit of it may be helpful to you. We’re all here for you in your time of need and I hope all your prayers about your father come true.

I wish you some peace and solace,
Joyce