Hello everyone . . . I need somewhere to vent, this is really getting to me. I have just joined this site and introduced myself in the "Introduce Yourself" section of this forum. My name is Georgette and my husband is Michael.

Michael finished radiation three weeks ago and he is his own worst enemy. I know three weeks is not a long time, that probably new blisters are forming, he's still "cooking." I've been supportive, patient, loving, and I'm getting so fried. For part of Saturday he had been in a decent state of mind, but not any longer. Since last Saturday afternoon he has spent most of his time in bed. He's very depressed, basically saying he's not getting any better, that he's doing what they tell him to do, all to no avail, however, he is not. He takes his meds indiscriminately, does not follow directions, either takes too much or too little, will sit for an entire day with nausea and upset stomach, all of which we have lots of meds for and he'll say he didn't think to take the meds. He's being who he is, which at times is really a handful. Tomorrow I'll be home with him - his therapist is coming over and then we have an appointment at Sloan Kettering. I stayed home with him for a few weeks and I went back to work last Thursday. My job has been great, but I carry the benefits and in this economy no matter how nice and supportive they are to me, I do worry about my job.

Wish I had positive, upbeat news . . . not so for now. I'm finding it more and more difficult to come home and find him in bed - complaining. I love my quiet time in the morning before my day starts . . . I walk the dogs and water my flowers. I see a therapist every week, which has been a lifesaver and he doesn't sugar coat anything, yet he tells me that I am very strong and that I'm doing amazingly well under these extreme circumstances.
Thank you all for listening . . . aside from my therapist and sometimes my sister, I say none of this to anyone, not even my kids.
God bless you all and please send me some strength

Georgette

Georgette, this is a wonderful place for support not just for Michael, but for you also. So many caregivers are a part of OCF that we all understand how difficult your job is. I know I couldnt do it. Glad to hear you make time for yourself, thats very important.

Hang in there Michael should start to feel a little better soon.

Hey Georgette

it always amazes me how many carers come here in this post TX period.It seems that while the whirlwind of treatment is happening we all "cope" because things are happening and that carries us along.The month or so after it all stops is a real bummer.Nowhere to go,no support network,nothing to do and such high expectations when that last treatment is over.

Patients want to feel better quickly and carers just feel lost as they see their loved ones sleeping sometimes 18 hours a day,withdrawing into them selves as they have too much time to think about what has and is happening to them.The resentment at you because you are starting to pick up the thread of your life and they can't oh my god georgette its a mine field,and you are in the firing line.This medication thing is common too and seems to happen when you feel able to hand control back and stop dedicating 24/7 to being nurse/mother.Its a bit like any behaviour good or bad is getting your attention.Tough love can work sometimes although from my experience the confrontation this can cause is also very upsetting and negative to you both and in my case Robs bad behaviour regarding meds and stuff led to me walking away for ten days after a massive "fight".Its part of the journey sweetie,and in many respects its the hardest part,but you are not alone and it will pass i promise.

Any help or advice you need feel free to put down your worst feelings here,because i can assure you someone else will have had that experience and can talk you through it.

keep your chin up

love liz

Georgette,

I can tell you that even though I had a very compliant patient and one that had a pretty fast recovery, I was still fried after the fact and at times, secretly wanted to run away. It just takes a huge toll on you and none of us give ourselves credit for that. We keep trying to be strong and carry the load.

It will get better but just decide that to some degree, you both are changed by this diagnosis and it will always "sit in the room" somewhere with you. When you can muster it up just keep saying that your research shows things do improve but it takes time. Does your insurance cover Home Health??? Maybe someone other than you pushing the meds would make a difference.

I wish you the best...hang in there,

Deb

Can't thank you enough - I believe you hit the nail right on the head. I was tempted to do a tough love approach, but my therapist has reminded me that in getting frustrated, that I'm "cooperating" with Michael's behavior. I have offered to cook for him, eggs, whatever, and understandably, he's not ready. He does, however, now watch me like a hawk and has made comments like "you're eating well these days." That was an omelette that I was eating. I have all the canned supplement drinks, but have also made my own version for him, using whey protein, milk, ice cream, etc. to hopefully help him gain weight and also get protein. He used the peg to get these down and last night I had to bite my tongue after he took my bottle of water to flush his peg and then return the remaining water to me.

Anyway, God bless and thanks for taking time to respond.

Georgette

Yes, my insurance does cover home healthcare, and I did have two different visiting nurses come over. For the most part, and I hate to say this, but it's the truth, for the most part they were totally inept. I can also have an aide come over, but I'm sure he'd balk at that. I have arranged for friends to stop over intermittently, bring him to AA meetings, or have meetings here and that had worked for a while. I'm beginning to think that this is a reaction to me going back to work. I will tell him that research has shown that things will begin to improve. Meanthile, we see the radiation oncologist today and I'll have a few questions for her.
Thanks again.

I now have to give kudos to my wife, Linda, who stayed home and mother henned me through it all. At the time though, there were times when I just wished she'd leave me alone and let me sleep. I knew it was time for meds but I had finally gotten comfortable and didn't want to move. And there were times I really doubted that I was going to make it through and would get really down and snap at her. I know how hard it all was on her and she's an RN who has pretty much experienced it all. Hang on, things should start improving soon.

Hi Georgette,
I read your post and 6 months ago i was at my wits' end. I came home from work at 7pm and martin hadn't moved from bed or taken his medecine, or eaten. He was depressed too and quiet (quiet is bad for Martin, he is never quiet). So I nagged and nagged and bribed and cajoled... and eventually he got better. I think the better weather helped as well, the garden looks prettier and it's warmer.
you just need to keep strong and make sure he takes his meds and be there, but also make sure you have you time. Go for a coffee with a friend, vent out and make sure you get quiet time. I used to get the long "oh no not home again sigh" every time I got to the front door after work. It gets better, just stay stron.
This site helps, i had my rant here too.
Take care
Cecilia

Can't thank you all enough. Today has been a better day. This morning Michael melted down and did a lot of crying. We sat and talked and we talked more when his therapist came over. I don't usually have sessions with him and his counselor, but today was an exception to the rule and it worked out well. We also saw his radiation oncologist today and she scoped him and said that all looks good. She doesn't think the fungal infection is thrush and she gave him some different meds. I also asked her about HPV and was surprised to note that he had not been tested. She ordered the test today and she told me to call her next Friday. He's even put on 3-1/2 lbs in the past week. So, we start over again and I feel relief and I know he does as well. I also decided that next week I'll work three days instead of five.

What tops of this evening is that we just got a call from my 14 yr old grandson, who lives in Brooklyn, NY. We've always been close to CJ and because he and his dad (my son), have had some difficulty, we've not seen CJ for about 2 months. He called to tell us that he loves us and he wanted to speak with his Grandpa Michael. He's also going to come and see us, and that puts a BIG smile on each of us.

So, thanks again to all of you. Your support has been awesome.

Georgette


Private Reply Quote Reply to This Message
Records 1-7 of 7
Switch to Single View

Email a Friend



Sending... All fields are required.
User IgnoredHide all messages from this user
User is No longer IgnoredShow messages from this user
Report AbuseAnonymous Note to Administrator:

Reporting Post a New Message
Message Center
RSS Feeds
Latest Messages RE: Need to vent
Posted by CJs grandma

on 07/30 07:38:45 PM
RE: colon and liver cance
Posted by JayneT

on 07/30 07:36:52 PM
RE: anyone ever diagnosie
Posted by ENDMILL

on 07/30 07:34:02 PM
Odd ball question - priva
Posted by Paula777

on 07/30 07:33:02 PM
RE: Faslodex
Posted by Jeanine-1

on 07/30 07:30:22 PM
DX 12-06- Recurrence Gamm
Posted by Orlinda73

on 07/30 07:28:36 PM
RE: Need help with family
Posted by Cami0303

on 07/30 07:19:20 PM
RE: my one and only
Posted by donnany

on 07/30 07:02:29 PM
RE: pelvic exenteration
Posted by metoo3

on 07/30 06:57:35 PM
RE: RAI resistant, FDG-PE
Posted by milady

on 07/30 06:54:55 PM
81m white count
Posted by ENDMILL

on 07/30 06:49:33 PM
Discuss Email Print Save

Tell him to getit out of bed and quit feeling sorry for himself. We have all been there and done that. The nest thing he can do is enjoy what life he has and try to be happy. It's hard believe me, but he shouldn't make you suffer with him. Maybe after the shock wears off he will act better. This is a rough disease and we all get grouchy with the ones we love. Like the song says, you always hurt the one you love.