PDA

View Full Version : What's On My Mind Lately


freemonkey
03-15-2006, 03:23 AM
I haven't been around much this last week because I'm just really sad about something that is happening in my family. Stop reading right now if you don't want to hear me cry.





I think I mentioned this once, when it first happened (here or at HH-can't remember now). I just have a hard time talking about it, and I'm not even sure why I'm bringing it up here and now, maybe I just need to get it off my chest now. No need to respond, I just want to say it....

Around the beginning of 2005 my younger brother was diagnosed with brain cancer - they called it inoperable because they could not remove all of it, although they did operate. They followed that up with a combination of radiation/chemo, which he had a horrendous reaction to.

The treatment almost killed him. It was about this time last year. I'm told he looked like a boiled and blistered lobster. His entire body was burned, and his pain so great they had to put him into a coma while he healed. I went to visit him shortly after he woke from it, before he was released from the hospital. It was good to see him, although I was pressured to go, because at the time my family told me "now's the time, he's in a coma, you need to see him before he dies". I put it off til I knew he would live and be conscious enough to know I was there. Did I mention? I'm near Seattle, they are near Chicago. In the end, I'm really glad I went to see him, even though my visit was so short, 2 days, I barely slept from here to there and back again.

My brother ran a very small business, which he had to give up. His wife works for a local newspaper chain, and has probably used up every bit of sick leave, vacation time and FMLA available to her for the next several years. They have 2 daughters, one about 11 or 12, the other was born only about 6 months ago. A trust was set up and they held some fundraisers and its done well, I guess.

Meantime, the treatments are not working.... the tumors grow, new ones form. He gets frustrated, he's been depressed and angry. And I'm sure completely unable to communicate what he really wants.

We've spoken several times over the months, but its hard, especially on the phone. I'm told his verbal center was one of the first things to go. They say what he's was thinking and what he's saying are two different things. So, yeah, hard to communicate, especially since he doesn't do email or write or anything.

A couple weeks ago they said there was one more surgery they could do, and they hoped it would buy him some more time. So they did it. And its not working. There is a new mass in his brain that is growing hourly.

He's near his end. My family is doing what they feel is right for him, I'm sure. But they are divided. My mom says she doesn't think that he and his wife talked about what he wanted at the end.

He's a very big man. 6'4"-ish and over 300 lbs (they gave him steroids and told him to eat). He's losing control of his bodily functions. He's losing control of his mind, doesn't know most people anymore. He can't walk more than a few steps. This was last week, its probably much worse now.

The last I heard, my sister is moving him into her home, and having friends and family pitch in to help out while he dies, rather than putting him in a nursing home or hospice. I don't know that that is what he would want, I don't think its what I would want. But my sister insists on doing it (although she'll probably rarely be there herself as she works a lot).

Again, I am being told, you have to come now so you can see him before he dies. I don't want to go. They'll say I'm being cold, but that's not it. My reasons are probably selfish, though, although I feel they are valid.

I just feel awful about all of it. I feel terrible for the suffering he's had to endure this last year.... the physical pain, the fear, the anger, all of it. He tried to tell me how he was trying to sort out the meaning of it all. I knew what he meant, but he had to tell it, and couldn't.

I feel terrible for his wife, and all that she's had to live with, the worry, his mood swings and whatever else. We barely know eachother, so I'm not someone she'd share with. And his older daughter, this is just not something a little girl should have to see. :(

I feel so helpless. I don't feel like I've done enough to help. I've done a few things, I've donated to the fund, got some of my friends to donate to the auction they had. I've offered to do more, but no one took me up (out of sight, out of mind, I guess).

This is all I can write for now. Thanks for listening.

livius drusus
03-15-2006, 03:37 AM
Oh freemonkey... :sad: :badday:

D. Scarlatti
03-15-2006, 03:46 AM
That's just terrible, freemonkey. Life is sometimes unbearably cruel and I'm sorry you and your family have to endure what must be, for all of you, heartbreaking circumstances.

Petra
03-15-2006, 03:50 AM
Oh, my god. I'm so sorry that you and your family are going through this. Cancer is a terrible, terrible, terrible thing. I'm so sorry, freemonkey. :sad: :badday:

Anastasia Beaverhausen
03-15-2006, 03:55 AM
:huggle: :cheerup: :cheerup: :comfort: :cheered:

viscousmemories
03-15-2006, 04:27 AM
I'm so sorry, freemonkey. :(

Adam
03-15-2006, 04:55 AM
Awww, man. I don't have the words to say how terrible that is, freemonkey. I've been there, sort of, and I know how awful it is. Hopefully, it helps a bit to know that some schmuck in Indiana read every word, and I cried.

Crumb
03-15-2006, 05:05 AM
:ffsad:

pescifish
03-15-2006, 05:24 AM
freemonkey, I'm so sorry you and your family are going through this.

We always hope the next surgery or treatment will make a difference, but when they don't, it is so easy to fall into the darkness. Regarding taking another trip out, please take care of yourself first and foremost.

Please do not force yourself to go if it is not something you need or want to do. It doesn't sound like it would help your brother at all, given his condition. I'm sure your company and presence would be a welcome addition for your other family members, but not if it is harmful to you. If you decide to go, please accept my best wishes and hopes that it goes smoothly and gives you some benefit during this heart wrenching time.

Thanks for sharing with us and please keep us posted.
:teddyhug:

/me pretends the teddy bear is really a freemonkey

freemonkey
03-15-2006, 06:09 AM
Thanks for your kind words and thoughts, everyone.

I am not normally a very sentimental person. I can even deal with the fact that people die. Its the long suffering that so many people do before the inevitable. It just feels so meaningless and cruel.

I probably won't go back, I don't want to. I don't know that my being there would help him at all, and may cause more stress within the family. I can't be in the same building with his father (my stepdad), and its more important for him to be there than me, anyway.

If anything, my mom may need the support, as she and my sister are not getting along (very long story - welcome to the dysfunctional family :( )

Plant Woman
03-15-2006, 06:43 AM
:wb:

Freemonkey, Please do not beat yourself up over this, be kind to yourself. And lots of hugs for you as you have given to me.

Why don't they have hospice come in? They will take a lot of pressure off the family, and will help your brother immensely. You don't have to answer that, I know how hard it is to deal with dysfunctional family and times like this can bring out the dysfunction a lot!

Hang in there and take it slow and easy on yourself. :badday:

Dragar
03-15-2006, 11:18 AM
Oh gosh, freemonkey. :badday:

Leesifer
03-15-2006, 11:29 AM
freemonkey. :huggle:

Ymir's blood
03-15-2006, 11:31 AM
:(

For what its worth, I agree that not going would be best. There is no need to put yourself through more pain.

livius drusus
03-15-2006, 12:18 PM
Would it be possible to have your mother come visit you, freemonkey? Maybe if not now then after he's gone?

One for Sorrow
03-15-2006, 04:20 PM
Oh freemonkey, I am so sorry. :(

My heart goes out to you, and your family.

freemonkey
03-15-2006, 04:26 PM
My mother had planned for years that she and her husband would move from the near Chicago suburbs to some rural area as soon as he retired. Initially she had wanted to go to Utah or Idaho, even took a trip out this way to look at properties in Idaho. Eventually she decided that her own health would not be served being so far from home, and they settled on an area in western Illinois, near Iowa, and 2+ hours from Chicago.

The thing is, she did not sell her house and put the offer on the new one until after my brother was diagnosed. Apparently, that did not sit well and has been a continuing knot this whole time. My sister says my mom has a narcisisstic personality disorder, is cold and selfish and "everyone in the family (think divorce/kids/remarriage/kids/divorce/etc to get a handle on all of them) thinks so."

I found out only a couple days ago that my brother has been feeling as though my mother does not love him since he was a young boy (according to sis). So very sad. Yeah, my mom can be selfish, but I also think she has a hard time showing her emotions.

As for my sister moving him into her home. I don't know all the details about "why not a hospice". If its the insurance, I get that. I'm told he has weeks, but maybe he'll linger. But beyond that, my sister is one to do things because its "good for the family" even when its not - which is usually the case. My personal feelings on the matter are that there is no way he wants his friends and family doing this, whether he's aware of it or not. It has got to be completely humiliating for him, and I'm sure he feels badly that his daughter has to see him this way.

One concession is that my mom will be moving into my brother's home temporarily so his daughter can go to school.

Julie
03-15-2006, 09:32 PM
Oh Freemonkey, I just can;t think of any words that could help.

I'm so sorry your family is going through this.

livius drusus
03-15-2006, 09:38 PM
I don't know all the details about "why not a hospice".
I think Debbie was referring to a hospice service that comes to the home. Even with your mom moving in to help, that kind of caretaking is such a huge burden. A professional might make things easier on everyone, especially your niece, poor thing.

I almost had a heart attack the first time I saw my dad cry, and I was probably 11 by then. Nevermind seeing him debilitated beyond all recognition. :(

godfry n. glad
03-15-2006, 10:09 PM
freemonkey...

My deepest condolences.

My brother had a stroke at 47. It left him partially disabled on the right side and he lost much of his ability to communicate. He lingered ten long years. He was on hospice thrice, but improved enough that he went back to home care.

My biggest guilt concerning my family is my reaction to my brother. At first, he spent a couple of months hospitalized and then was rather unceremoniously discharged upon a stay-at-home mother and their seven year old daughter. I went to visit them rarely, but regularly. To me, what was left was not my brother. I didn't recognize him as him. It was his tattered body, but that wasn't him looking out at me....He was gone.

Look to the living. Your poor sister-in-law is going to be devastated. Their children will be emotionally scarred for some time. Help them.

freemonkey
03-16-2006, 01:15 AM
Again, thank you, everybody. Your words mean a lot to me.

godfry, I've been thinking of you and your wife a lot lately. You're right about looking to the living. I will do that.

P.S. I'm going to try and be my regular fun self here again now.

Plant Woman
03-16-2006, 06:47 AM
Yes, I was meaning hospice that comes to the home, it's a great program and so helpful for the family.

Freemonkey, do whatever it takes to feel better, I am finding laughter at times helps relieve a lot of the stress. That's why this forum means so much, because I always end up with a silly grin on my face.

LadyShea
03-16-2006, 12:14 PM
:huggle: I am so sorry. I second Godfry's advice to look to the living. His wife and daughter are going to need someone strong and capable. Even if she hasn't turned to you in the past, she may now if everyone else is falling apart.

Puck
03-16-2006, 12:28 PM
Oh freemonkey, I'm so sorry.

You know yourself better than we do; if not going is right for you, then don't go. It doesn't sound like you can ease his going, so why torture yourself?

Hugs

lisarea
03-16-2006, 02:26 PM
I am so sorry.

I just don't know what else to say.

Shake
03-16-2006, 07:22 PM
So sorry, freemonkey. I can totally understand your not wanting to go. I mean, you say you're not even sure if he'd recognize you, and then of course, do you really want to see him like that? Maybe you could tell those family members that you'd rather have better final memories of him.

My maternal grandmother suffers from dementia and I haven't visited her in several years, even though she was only a few miles away. I feel a little guilty, but I can't stand seeing her that way, and I don't know that my visiting would do much good for her, either. So, if it's not doing her any good and it makes me uncomfortable, why go? Mom says she sleeps a lot lately anyway. The people at the home are actually surprised she's hung on this long.

Anyway, you have to do what you feel is right, of course. If the rest of the family doesn't get it, too bad. I mean, try to explain it, if you feel you have to, but don't let them judge you for that.

Again, my condolences.

HelenM
03-17-2006, 03:24 AM
Freemonkey, I'm so sorry. Your brother's illness is enough to deal with already - I wish you didn't have the family pressure on top of that. I'm sure it's hard for them and perhaps they don't have the emotional resources right now to respect that you need to make your own choices about how to get through this very difficult situation.

Blake
03-17-2006, 05:26 AM
P.S. I'm going to try and be my regular fun self here again now.Any way you need to be is fine!

What a terrible situation. I'm so sorry.

JoeP
03-18-2006, 09:07 PM
:sad: I'm sorry, freemonkey.

BracesForImpact
03-18-2006, 09:44 PM
Awww, man. I don't have the words to say how terrible that is, freemonkey. I've been there, sort of, and I know how awful it is. Hopefully, it helps a bit to know that some schmuck in Indiana read every word, and I cried.

Make that two schmucks in Indianapolis. My sincerest condolences freemonkey. I hope you find an amicable balance with your family and your brother finds peace.