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CMMoore Offline OP
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what a rollercoaster this can all be...
tonight i am kept awake wondering how long i can put off either checking him into a facility for care, or hiring someone to sit with him when I cannot.
how do i possibly make that decision????

here's why i am considering it... three times today, I picked him up out of the floor where he had ended up after trying to use the urinal. last time, just a few moments ago, i got him back into bed, and he almost immediately rolled right back in the floor.
I am SO tired. So scared. I feel like if I wave the white flag of surrender that I will have failed miserably.
What is a wife to do? (rhetorical.... )


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 - Please, please don't EVER feel like you have failed! Asking for help is not a sign of weakness. You have already shown so much strength - physical, emotional as well as in every other area of your care and love for Matt! If you do wave that white flag, it should be for YOU - to get whatever assistance will help you to survive. Whether you check Matt into a facility or get someone to sit with him while you cannot, it will make it possible for you to replenish yourself and keep your strength up so that you can be available for any peaceful moments that come by for you and Matt. . . . moments to just sit by him, touch his hand, or whisper "I love you". Even if he does not acknowledge or hear you, he will know it somewhere deep inside. Caregivers need care, too.


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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I agree with Anne-Marie. The last thing you are is a failure lady. You are a warrior and perhaps the battle is coming to an end. I haven't been through it and pray I won't, but I'm thinking it is down to the final decisions and that might include a facility where they can keep him safe. You can still go there and be with him when you aren't working, and maybe you can get the work done faster and be with him on a more quality basis if you aren't always having to play catch up. He will be clean, hydrated and protected and maybe able to communicate more clearly. He will fight you on it, but you have to do what you know is right for both of you, but especially for him. It sounds like he is beyond making rational decisions...that's why you got the directives. Have him go by Ambulance if he's really angry about it. Call them after a fall.
Praying for you sister. So sorry. Please know we are all here.
Love ya',
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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Posts: 945
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Christine,
my sister in law had to make a similar decision with her dad, who has dementia and assorted physical issued, including falling. She felt like a failure at first, but is now coming to see that there is a limit to how much one person can do - and she went over that limit a while ago. I don't think you would call her a failure; I don't think you should call yourself a failure, either. Like my SIL, you are a wonderfully brave and caring person; but you are human, and we humans sometimes need some help. Best wishes for you both whatever your decision.
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.
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Christine being a caregiver is the hardest job their is. Having to wear so many hats all at the same time always with a smile on your face in front of the patient is no small feat. Its a hundred times more difficult when your patient is not co-operating all the time. Never EVER consider yourself anything less than an amazing, competent, loving caregiver with the patience of a saint. Im sure your task is much more than I would be able to handle. To me being the patient is the easy part. Caregivers are angels!!!

If you need help caring for Matt it certainly understandable. If the time has come for professionals to take over then know in your heart that you did every single thing possible to help him. Never look back and have any regrets. You have done an excellent job in a very difficult situation. Making this decision is not easy at all.

Please remember every single day to take some time for just you. Be good to yourself.

Always keeping you and Matt in my prayers.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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CMMoore Offline OP
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I had a great visit with Matt's daughter tonight. She's really in denial though and isn't able to really embrace her Dad's condition and say all that needs said. I wish I knew how to help her.
The hospice mentioned pre-bereavement counseling, and I'll check to see if they can visit on the weekend.
She asks me how she can help, what she can "do". I don't know what to say. I feel uncomfortable asking for help with housekeeping, but I sure could use it. I guess I will have to get over my own feelings and thank God for the help he is sending us.


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: Nov 2006
Posts: 2,671
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When Matt�s daughter asks how she can help, you could give her a list of several items, and let her pick what she is comfortable. This way, if she is not too keen on making breakfast, she might be happier doing laundry or taking the dog for a walk, etc. So when anyone asks how they can help, just show them your list and they will be happy they can do something, and know that it will really help.

Being in denial is very hard to let go of. It is difficult to recognize denial when you are in it. We want so much to hold on to even a shred of hope - for any sign of recovery. When a friend of mine died, I couldn�t believe that she would not survive and I was glad to see how thorough her daughter was in checking all the procedures and asking countless questions with the doctors about her mother�s care. Even when my friend � a nurse with extensive medical experience had comfortably accepted that she would soon be taking her relationship with God to the next level, and making her own final arrangements, the daughter was still holding on to hope and countermanding her mother�s wishes with the doctors.

I spent most of the time with my friend, just listening and talking about things we had in common (and hiding my own denial). And when she tearfully expressed her distress at how her daughter was resisting her mother's acceptance, I told her I thought she was just trying to make sure the doctors did everything they could to help her survive and had not forgotten anything and in her own way this was how she was expressing her love. After many conversations with doctors, one of them said to the daughter that - "Sometimes it is kinder to just let them go." That of course released a flood of tears and she ran out. But later, she began to accept and take care of all her Mother�s wishes and final arrangements. Everything went a lot smoother after that and my friend�s wishes were followed to the letter. She donated her body to Science � her family and many friends had a �celebration of life reunion� a few months later when it was Spring. Everyone came from near and far to gather and share the many experiences and remembrances. It was so very comforting to all of us.

Christine, I hope that you can find comfort for yourself and the help that you need. I�m sure that hospice will have some good helpful thoughts to share with you in the pre-bereavement counseling that you mentioned. Do keep us updated.


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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You know I will! (keep y'all updated) This outlet is a Godsend to me. Excellent idea with the "to do" list. I will definitely make one and allow her to make the choices of how to help that way.

Thanks!


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: May 2009
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Christine, I want you to know that I have been following your posts and have been praying for you. You are a strong woman and a great caregiver. I will continue to keep you and your family in my prayers.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Posts: 280
CMMoore Offline OP
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Thank you for those prayers. I know sometimes that they are all that keeps us going.
I spoke to the hospice counselor today and put her in touch with matt's daughter. I offered to go with her, but suggested one on one session to figure out what she needs to say before getting Matt together with them.

I had a involuntary few days off work. I have an external ear inflammation in both ears that has made working (taking phone calls) impossible. I worked through it on Sunday, but then called in Monday for a doc visit. Started antibiotic drops, then yesterday every little movement of my head hurt. So, home again. Today is my regularly scheduled day off. We'll be out running errands and getting him to what I think is the final radiation appointment. Still waiting for results on the brain MRI too.
Will let y'all know what I find out.

I went outside with Daisy(puppy) a little while ago, and the moon is so bright and the temp was just right, I just sat on the front porch absorbing the serenity.

Learning each day to take what moments I can and enjoy them to the fullest.

Love, Hope, and Prayers to all of you,
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.
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