My brother's story...long, apologizing in advance.

carlamarie7

Hi everyone:
I am new to this board and sometimes feel like I am going to lose my mind! In January, 2007, my brother (35 yrs old) was dx with colorectal cancer from FAP/Gardner's. He is now a Stage IV with mets to liver, ?lung (waiting for the CT results), and they have just found that at the original tumor site (rectal), he has a 6cm growth. He has had 3 surgeries over the past 4 years and as he also has desmoid tumors (don't metastasize but can grow large and crush arteries, structures) which are thought to grow from scar tissue, they do not want to do any further surgeries on him. He most recently was hospitalized for intractable pain near his rectum area. They have prescribed oxycontin round the clock and for now that is keeping his pain in check. He will be seeing his oncologist on Tuesday, but he has been receiving 5-FU and camptosar for the past 13 months for 48 hours every two weeks.

He is married with two children, (twins age 5). His wife has some psychological issues and she is not very high functioning (?autistic/mild MR). He is probably somewhere on the aspergers spectrum himself but not formally diagnosed. Anyway, although I have always been his main support, since he was diagnosed, I have been completely involved with doctor appts., etc. I am also his health care proxy. The whole situation is a big mess, and I feel like it is completely on me. If he isn't able to care for the children, it is doubtful that his wife will be able to take care of them by herself. And, I think we may be getting to that point sooner rather than later. We also have two other brothers, both of whom are married and live out of state. They visit maybe once a month but I could use a bit more help from them with everything and am starting to feel angry with them for them not doing more.

The other thing is my brother has become so angry. I know it is at the cancer, but he is yelling at his wife, the kids, and me and this, too, is taking its toll on everyone. He refuses to take an antidepressant or to allow services into the home. I am trying my best to be supportive of him, but even at this point, he won't speak about making any arrangements in the event that he is not around at some point. I am already getting so tired, and I know that the worse is still to come. He keeps making statements like, "I guess I am not important enough for them to do something....I know they can do something but they would rather let me die"......and so on........ I think that at this time, they may be able to do brachytherapy at the site of the main tumor but not sure because he already had lots of radiation to that area. If not, then maybe a different chemo, but realistically, I don't know how much longer chemo will hold off his cancer.

The other thing is that they live about 1 hour from me and have NO other support. The last time he had to go to the hospital, instead of calling rescue, he made his wife get the kids up at 7am and bring him to the hospital. They had to stay there until I was able to relieve them because he fears being in the hospital by himself. During his surgeries, I slept in the room at the hospital with him the whole time. Last night he was constipated and had me on the phone refusing to hang up for three hours until the mag citrate started working and he saw output in his colostomy. I don't mind, but at the same time, this is taking its toll on me and I somehow wish he would be able to find some peace and cherish his time with his family rather than being angry all the time.

Thanks for listening to me vent....I know this was long and kind of all over the place.....there is just so much going on.

Carla

DrMary

Prioritize
My favorite story is about a fellow who complained about having a million things to do and his wise old friend (the locale varies - the one I heard was in Vermont) said, "my advice is to do them one at a time."

Pick the one thing you think is most important or most critical (it has to be something you can actually act on, not "cure him of cancer") and chip away at that. While you love your brother, it sounds like your main concern is his kids. Rather than approaching him about "making arrangements" you might consider doing all the steps to make the arrangements for the kids and presenting him simply with the document to sign (with a witness) - if you are in a state that requires notarization, you might consider doing it when he is in the hospital, as they always have a notary handy. You can either talk to a lawyer or work with the on-line resources (like nolo.com) - I suggest the lawyer if you can possibly afford it.

Your approach: I love you and I want to help take care of you, but I can't do that while I'm worried about what could happen to your kids. Given the situation with his wife, he really should have done this anyway, even if he didn't have cancer. Folks do get hit by buses and such.

BTW, if you work with a lawyer, he will also suggest your brother pick an executor other than his wife. That person could be you as well (if so, you might want to have him designate a second person to oversee the finances, so you are not seen by your other brothers or his wife as "grabbing everything.") - this would help make sure his wife's financial future is secure.

Once you get that done, you can address the anger issue. That's a tough one - auspergers types are not good at self-delusion, which gets the rest of us by sometimes. He might not see the point in cherishing his last days and he might really not care if his anger makes you all uncomfortable - he's the one dying and you get to live. You might need to settle for doing as much as you can to shield his kids from it.

I'm not hopeful about getting more help from your other brothers, timewise. However, you might get them to kick in for a lawyer and go with you to support you when you get your brother to sign papers.

Good luck - and don't apologize for venting. That's what we are here for.

carlamarie7

DrMary said:

Prioritize
My favorite story is about a fellow who complained about having a million things to do and his wise old friend (the locale varies - the one I heard was in Vermont) said, "my advice is to do them one at a time."

Pick the one thing you think is most important or most critical (it has to be something you can actually act on, not "cure him of cancer") and chip away at that. While you love your brother, it sounds like your main concern is his kids. Rather than approaching him about "making arrangements" you might consider doing all the steps to make the arrangements for the kids and presenting him simply with the document to sign (with a witness) - if you are in a state that requires notarization, you might consider doing it when he is in the hospital, as they always have a notary handy. You can either talk to a lawyer or work with the on-line resources (like nolo.com) - I suggest the lawyer if you can possibly afford it.

Your approach: I love you and I want to help take care of you, but I can't do that while I'm worried about what could happen to your kids. Given the situation with his wife, he really should have done this anyway, even if he didn't have cancer. Folks do get hit by buses and such.

BTW, if you work with a lawyer, he will also suggest your brother pick an executor other than his wife. That person could be you as well (if so, you might want to have him designate a second person to oversee the finances, so you are not seen by your other brothers or his wife as "grabbing everything.") - this would help make sure his wife's financial future is secure.

Once you get that done, you can address the anger issue. That's a tough one - auspergers types are not good at self-delusion, which gets the rest of us by sometimes. He might not see the point in cherishing his last days and he might really not care if his anger makes you all uncomfortable - he's the one dying and you get to live. You might need to settle for doing as much as you can to shield his kids from it.

I'm not hopeful about getting more help from your other brothers, timewise. However, you might get them to kick in for a lawyer and go with you to support you when you get your brother to sign papers.

Good luck - and don't apologize for venting. That's what we are here for.

thanks
Hi DrMary:
Thanks for your thoughts and suggestions. I am feeling a bit better today. Hoping your week goes well.
Carla

Twins_4_Life

Hi Carla
I am very sorry to hear of your brothers dx, strength usually comes in numbers, but when it is only one some how you become stronger, Even though your brother is angry, he knows you love him or you would not be doing what you do for him, it's a sad situation when children are involved, and the mother may have some sort of mental impairment, you are a great sister and if you are in it for the long haul, I also suggest getting those documents signed and taken care of before thing go any further.
Wishing you the best
Kristen