Out of energy

illead said:

Hi dkatz

Sorry for my frustration in my last post.  If I am getting frustrated at your brother, I can imagine how much you are.  I wonder if there is someone of a professional nature that you can talk to.  I think you need to be reassured about limitations you need to make and not to be on a guilt trip about it.  We are not professionals though, so what seems sensible to any of us may not be the right counsel.  Maybe you can start with your brother's doctor or one of his nurses, they might start you in the right direction.  Please don't leave us though and you can vent anytime.  I think I can speak for all of us in saying that we understand your frustration and need to talk.  We have all been trying to help your brother, but you are the one who needs support.  Hang in there, Becky 

Becky.. thanks for the words of encouragement. I have been in therapy since 2008 for other issues but this has crept in as well. It helps a lot. Even though my therapist offers no magic answers, it helps me focus on what is nice and what is necessary. I always take the time before a session to walk around a small lake that's near his office and think about what I want to say in the 50 minutes I have. If my brother could do that without thinking in terms of expecting answers or arguing I think it would do a world of good. But, alas.. not going to happen. So.. I will not leave the site and I will continue to post my frustrations and hopefully victories. One of these days, I will start going through the other posts and see what else is going on out there besides my tale of woe. I'm hangin in.  I think Ben Franklin said.. 'either we hang together or we'll hang seperately'.

AILIDH: Your husband walked out.. that's horrible. I cannot even imagine contemplating something like that. I have been through so much stuff with my wife and kids and it never occurred to exit. But, that's me. I have to think that what my brother is going through could happen to me. My dad died of a blood cancer and my mom (who turned 90 in April) is a 4 time survivor starting back in 1976. Her mother died of breast cancer. My father's mother probably died of cancer. The chances are that I will get it too. So.. I keep thinking of what it would be like if it was me. The only thing I have to keep reminding myself is not to go too far with the empathy. We were not that close as kids.. then we shared an apartment when we started working and after I got married, drifted apart. My mom hung on a while longer but was also out of the picture for about 10 years.Most of that drift was my wife's doing. A long story. But..we were never angry with each other. I reconnected with both about a year before my brother was diagnosed. At this point, I resolved never to turn my back on either again. So.. I call, text and visit very often. But, like I said, I have to put a border around it and move on to other things as my day unfolds. Most recently,he has moved up a notch from exhausted to tired. I'll buy that! Wish you well. keep up the dialogue!

My brother made it to another Thansgiving but true to form he says he has nothing to be thankful for. About 10 days ago, he started to feel a little better meaning his energy level had gone from non-existant to one notch better. He managed to spend an entire day at the hospital the other day and, although he was tired, he said it was not so bad. But..today.. he promised to spend time at mom's but informed me over the phone that he's not going to eat anything because he can't digest chicken and he hates turkey. He'll watch mom eat and then leave. For various reasons, I can't spend Thanksgiving with mom and my brother although I saw mom yesterday and will see both tomorrow. But.. he's back to his comfort zone of feeling depressed  and spreading the joy (as it were)even though he admitted feeling less lousy. He has to go for a kidney biopsy in about 10 days and that's what he's thinking about. A small growth was spotted on one of his kidneys about 6 months ago and was scanned 2 or 3 times; no change in size. So.. in my mind, if there was any doubt, they would have had him in months ago. It may be cancer or maybe just a cyst but there does not seem to be an emergency to cut it out. But.. he's already thinking he's going to wake up from the biopsy and be missing a kidney. Always the worst possible scenerio. In the middle of all this, he wants to work again. Sounds like a positive but then he's already thinking about where he would work and how he would get there. It would have to be close by and there would have to be parking and on and on. PS.. he still has to deal with the kidney biopsy.  Anyway.. I'm thankful for a lot. This life I'm living is not easy but I'm still here. I still have my mom and my brother, my kids and my animals. I have a job and my boss kind of likes me or at least isn't looking to pitch me. I have my health and with the backdrop of the stories on this site and my brother's trials and tribulations (my mom's and my kid's), it takes center stage. Best to all.

Ailidh said:

That your brother could even

That your brother could even admit to feeling a bit better or at least a bit less awful is HUGE. It really is a hint of a glimmer of a spark of a light at the end of a very long tunnel. I'm sure your standing by him has played a big part in this, even if he doesn't recognize it or thank you for it.

 

If you can - and you have enough on your plate in all conscience but if you can - try not to be too mad at him for still spreading gloom, even although he feels a tiny bit better. My GP doctor hit the nail on the head a couple of weeks ago when she spoke about "daring to be better". Admitting to feeling even a tad better within depression is really scary because as soon as you admit it you think "What if it doesn't last?" Plus, as soon as you actually TELL people you're feeling a bit better, they're so relieved that they assume that you're 100% better and stop asking how you are, start having expectations of you that you can't meet and Argh...... In my limited experience, you've got to have quite a few "feeling a bit betters" followed by "here we go again"s before you can begin to see that there is a pattern of recovery, and that what goes down does come back up again.

 

with prayers and admiration,

A.

Roller coaster continues.. but for now in the upswing. My brother went for his pre-op on Monday. The day before he was so far down that he didn't want to see me. Forgive me, but I just showed up at his apartment anyway and spent some time with him. But he rallied the next day and as I pointed out and he somewhat concurred.. about a week after doing his Retuxin, he starts sliding down. I brought out the pattern. If he knows it's going to be better after a little while.. hang on to that. He seemed to take heart. Today, he signed up to volunteer at a library starting in January. He calls me and after a while, I said.. so this is all good. But.. true to form.. he replies.. 'I feel bad'.  That's his comfort zone and if that floats his boat. But.. at least he feels he has something to look forward to after the biopsy next week. Best to all.. and thanks so much for your thoughts and prayers. It makes my day to throw the message in the bottle intot he surf and have it come back.

NANCYL1 said:

AILIDH

Ailidh:

It is unfair.  One thing at a time, I say.   I have never heard of a "Morel Lavallee" injury.   Looked it up and it sounds as if it could be dreadful.  Good luck to you when you see the plastic surgeon.

Nancy

Nancy and Ailidh: I have to tell you this quick story. Both of my kids have Cystic Fibrosis which is an incurable lung disease. They are both young adults now. When my daughter was diagnosed about 20 years ago, there were no adult clinics. But..they are stable thanks to new treatments and drugs. My daughter is in love with horseback riding and she loves her 'boys'; 2 aged and lovable ponies. We own one but she takes care of both. One day last week, she wasn't feeling well. She said told me she was going to the barn in the morning. So I said..'are you sure that's a good idea?'.Without hesitation, she blurts out.. *&^% Cystic Fibrosis; I'm going to the barn.  She just plows ahead, treatments and feeling crappy and all. I hear a single-mindedness that somehow gets her to the barn, gets you guys to the hospital, gets my brother out of his apartment every day. There is something in the human spirit that is not fully explainable. None of this stuff is fair. So, as I tell my brother all the time.. keep on keeping on. As my daughter would say, &^%$ it, I'm going ... 

unknown said:

Man up

Your brother is a whiner and chronic complainer. Don't reward that behaviour by letting him get to you in such an awful way. Tell him to be strong and if he can't then go elsewhere. 

All men die but not all men live. - Thomas Jefferson

GKH: My brother has always been this way. I was out of touch with him for 15 years for reasons that would fill a book but decided to get in touch with him and he and I jumped back in. He is often very difficult to deal with because he has tunnel vision. He hates making decisions but I refuse to make them for him but I will brainstorm with him. He had laproscopic surgery yesterday on one of his kidneys to remove a small mass.. he went on for days about how he was not convinced that this was needed but couldn't decide what to do. He called me from the hospital yesterday after he checked in and finally and reluctantly said he would do it. His doc called me and said the mass was contained and if it was cancer it was low grade. My brother was more interested in the fact that he hates spending the night a hospital; he hates th efood, he'l never sleep and after all.. it probably wasn't cancer and it was a waste of his time. I drove him home today in a snowstorm, got his pain meds from the drugstore and made sure he got upstairs OK. I listened to complaining and moaning for 4 hours today. I wished him well and drove home. He's not going to become a different person just as I will not make his decisions for him as he would probably like me to do just so he doesn't have to think. He's who he is and I only have one brother. The quotation was appropro but he will never use that as his mantra. Your thoughts are well taken and I appreciate the fact that you recognize the role I seem to be playing as the enabler. I have other things going on in my life, fortunately, so I can contain his attitude and go on to other things. It gets to me but I move on and I can't help thinking about what I would be like if that was me sitting alone in an apartment in total silence.

unknown said:

Brother

he is very fortunate to have you. Just don't let him takes advantage - for your sake and his. All my best to you and your brother.

I'm going to meet my brother for coffee this afternoon instead of rushing home. My mom made the mistake of telling him that he looks much older than he is. She should have kept that to herself and it clearly bothered him. He's finally past the post surgical trauma from the kidney tumor and admitted the other day that maybe he did the right thing after all. He tells me every day without fail that the chemo shortened his life and who am I to say? I just keep drilling back that he's probably not going to die today and spending every minute of every day thinking about death is a huge waste of time. It's very hard for me to have that kind of conversation with him. He told me today that he was e-mailing his uncle and completely forgot how to spell a word. He thinks the chemo is affecting his mind. i told him I always get stuck on names..freeze up. So, he said maybe that's normal. Who's to say? Anyway.. to all readers.. best wishes for a happy and especially healthy New Year. Sorrows in the rear view mirror and only good things in front!