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CMMoore Offline OP
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That is likely Gabe. I was reading a recommended form for our state and it listed primary POA and secondary POA, he may accept it if both of us are listed.

I just don't know WHEN to talk to him. On the rare occasion that he isn't in a terrible mood, if I talk about anything to do with cancer/dying/doctors, it puts him in a bad mood.

He needs to face this stuff and get it settled NOW.

I will just have to put my foot down.

Thank you all!!! Wish me luck.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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Christine - It seems to me that rather than "not trusting you", it's more the idea of having to relinquish control to someone else. It can be very stressful to make changes and face something unknown. We all prefer making our own choices and it feels better if we can make those choices ourselves. Perhaps there is a way that Matt would be able to have a choice that would keep him comfortable. Since he does not want to consider hospice, what if he had a choice between hospice and going to a nursing home facility? - Perhaps as a trial to see how it works? Or maybe a third choice of a Professional Nurse that could come help with his care? (If it was one of those athletic looking no-nonsense-do-what-I say types, he might realize what a sweetie caregiver you are!)


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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CMMoore Offline OP
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I put on my armor and attitude last night and told him he was NOT going to determine what my opinions were, and I gave him the courtesy of listening to him, he can by God do the same for me.
I also told him he was not going to leave me wondering what the hell to do and to fill out an advanced directive.
(he of course says, he brought them home, I should have filled one out) - ugh
So, I said, fine, just make me POA and I'll handle it!!!!!

And, much to my joy, he said, okay, get the form.

FINALLY!

I just had to get demanding.

Happy Wednesday everyone. Hope it's a good one.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
Joined: Jul 2010
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woo hoo put that foot down woman!! You have to be strong for him, he is feeling weak and vulnerable so you have to be the stronger person, just exactly like you did! It's not giving you power to commit him or anything it's POA IF and WHEN you are needed to make a decision, I think cuz you are his wife legally you are allowed to know all about his health and care from docs or is it still protected by HIPPA? So if it is now you will be able to call the docs, tell them what is up and tell them what he needs and get thier opinion. Like I always call Ron's docs for him and I'm allowed to be told anything about him. Ron also had signed a DNR when he was sick with Non Hodgkins, when he went in this last time for surgery he said "now don't get to quick with that DNR" I wonder if we should take that out now...it was when his chances were bad. Now he's alive and kickin! Hmmm I best check on that.
Go shine your armour for the next time you'll need it and wear it proudly when you do, you have done great!!!
So proud of you!


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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CMMoore Offline OP
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HIPPA is a pain in the ... we had to fill out a form to allow me info via phone if he wasn't present.

Thanks Suez for the 'flowers' so to speak. I feel better. You make a good point, he's weak, he's got no control over what is happening to him, I NEED to be in control and let him see that I've got it covered.

I'm wondering if anyone has any info on spine mets. PM me? I'll also post in a more relevant thread to find out all I can.

Love to you all,
Christine


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
Joined: Oct 2011
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You, my dear,are a hero. I pray that you will be willing to share your journey with other care givers. You are truly an inspiration. Really, I was so blessed to read all this and see how you are working through it and handling everything. I can only hope, that if I need to be, I can do as good of a job.
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Hi Chris,

Morphine and brain mets do make for some really awful attitude problems. I'm sorry you are going through it. My heart is with you and Matt. You are such a loving caregiver. Matt is lucky to have you. I hope you are able to find some time to concentrate on something just for you.

I remember reading posts and steeling myself for the battle from hell. There are great gifts here. There is the immediate gift of loving family on the OCF forum who will help us through the process no matter the twists and turns. And, there's the legacy that remains from all the caregivers who have walked the path ahead of us. One of your hands receives the gift and one of your hand gives the gift. Thank you for helping me when I truly needed a sister, a confidant, a friend, and an OC tour guide.

I hope Matt agrees to allow hospice to come in and help. It really is a godsend. It does not mean that anyone is giving up on him. It just means that there is a need that should be filled. I'm sure it would help relieve a great deal of stress for you and for him.

Take care, dear girl.

Sending a hug your way.

Love,

Sandy
xoxox


Last edited by Sandy177; 02-15-2012 09:31 PM.

Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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CMMoore Offline OP
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I am still working on convincing him to call hospice . He's already fallen three times today. First was 330 this morning, he just fell out of bed and hit his head on the dresser. Then fell once on the way to the restroom, and again on the way back at 7.
I would think he'd get tired of falling down and seek help.
I told him that the spine mets can affect his ability to walk. Perhaps he will think about it differently.
They also seem to be radiating his sternum now?
I really dislike not making it to the doc meetings for now.
I will have to call this new doc and find out just what the hell she is doing.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
Joined: Jul 2011
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Hi, Christine,
I know that this is stating the obvious, but please make sure that the doctor knows about the multiple falls within a few - I think this may be an intervention red flag for them. Thoughts and prayers with you.
Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Jul 2009
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CMMoore Offline OP
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We had quite the amusing outing Friday night. Matt's first real experience with those motorized carts at the local warehouse club. He failed to follow me, and went all over the place, not listening to directions... it was at the time disheartening, but I can really laugh about it now.
Again at an office store, driving in circles around the desks set up, as if trying to find his way out of a maze.
He's out of it a lot. I have learned to just make some sound of acknowledgement when he says bizarre stuff anymore.
It's easier than trying to set him straight, which is usually an impossible feat.
Mobility is still an issue. I really can't tell if the radiation to the hip is helping, but the spinal met. could be causing problems moving his leg too.
It's just a guess at this point as to what area causes what.
His daughter that lives a few hours away has said she will be making trips to see him every other week, and his local daughter is still visiting frequently. I LOVE having some local support and they usually back me up when it's needed.

When the doc says that time is limited, it's hard to decide when to worry. Like tonight, he seems to have a fever. In the past, I'd be prodding with a thermometer, pushing tylenol, and grabbing a cold rag asap. I touched his face and mentioned the warmth, and he shrugged me off. The concern wasn't wanted.
Am I slacking on my duties if I don't sweat the 'small' stuff at this point?


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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