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Wow, Stacy. Your HUSBAND has a rather serious issue, not you. You are doing all you can to encourage him to do something as basic as drink fluids. If he was declared dehydrated and sent home then he was not that dehydrated and if he does not drink enough fluid he will be dehydrated enough to where he is going to be in a hospital bed. Maybe that is the sort of wake up cal HE needs to start to take a bit more control, responsibility, and ownership of his illness, well being, and care.

I do not mean to sound harsh but you can only do so much. The doctors can not MAKE him live, he has to want to live. You can not MAKE him drink anything, he has to want to drink.

That said, he could very well be experiencing a depressive situation but you know his personality better than anyone so you are most qualified to know if this behavior and attitude is consistent when he has encountered other illnesses, difficult, and stressful situation. If this is out of character, then it could very well be a serious onset of depression which in that case it is an illness like any other and should get treatment right away. If this is what you suspect, then you are going to have to force him to the correct specialist to get help immediately.

Good luck,
Don.


Don
Male, 1955
Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
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Patient Advocate (old timer, 2000 posts)
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Wow, sorry to hear about all this Stacey. I struggle trying to understand the whole refusal to drink water that so many people have because they don't like the taste of it or other reasons. I was a water drinker decades ago and find that it is so beneficial for so many things. Try smoothies and use coconut water. It will help hydrate quicker, he may like all the things you can do in a smoothie like frozen fruit, add some protein powder, greens in powder like Greens and Whey or something. You can get hydration, fruit, fiber, nutrients and more plus make it however he might enjoy.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Stacey, Im very sorry to read about your husbands current condition. You have been the best caregiver he would allow. Its a shame he fights you with everything. Wish I knew of something to help you get him back on track. Ive been dehydrated and I felt awful, I actually thought I was dying I felt so bad. All it takes is for him to get properly hydrated and enough calories in and he will turn right around to feeling better.

After that doctor visit, I would have thought he would have begun to drink and eat. Ive always thought depression played a part is his stubbornness. To me it sounds like everything he has not been doing like he should have all along has finally caught up with him. If he chooses not to co-operate and refuses to eat and drink then his future includes a nice long hospital stay. They will probably send a hospital therapist in to see him while he is there.

His sense of taste wont be back to normal for quite some time. Its ups and downs for months after finishing rads. He is not the first one to struggle like this but it really is completely optional. If he can eat and refuses then its his choice. He could be feeling better today if he would drink and eat, its up to him as a grown man to stand up and take an active part in his recovery. It all comes down to hydration and nutrition, take in enough and you will go thru this easier.

So sorry that you are having such a hard time with him! Just remember as a caregiver you need to take time for yourself to catch your breath.

Good luck!!!!


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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Dear Stacey, having followed your journey from your very first post, I can imagine how very frustrated and tired you must feel, having to fight him over everything. Do you have access to a visiting nurse who can come into your home and monitor his vitals, and, in general, share your burden of care? I would keep an eye on him and get him to emergency if his condition deteriorates -- dehydration can strike swiftly and hard. Hang in there, we are holding your hand.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Stacy - I really like Gloria's idea about a visiting nurse (and PaulB's Water App). Sometimes, advice is more easily taken when it comes from someone other than the caregiver or close family. You know better how your husband would react to this, so you could give him a choice: either shape up and start eating/drinking or you will call the visiting nurse and make sure you request the "nurse from Hell, type" when you do. You could also give him the choice of hydrating himself or you will get someone to come help you get him in the car for a trip to the emergency room or maybe an ambulance could take him there. I can soooo emphathize with you. The memory is still fresh in my mind when my son was refusing to eat or drink. I convinced him I would get my daughter (police officer with a gun) to help me shove him into the car and to the hospital to have a feeding tube installed). That did it. He started eating/drinking. Drastic situations call for drastic measures. And soon. Please take care of you too, Stacey.


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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My mother in law refuses to drink and she is over 200 lbs with 8-20 oz/day. She is hospitalized just after nadir every 3 weeks like clockwork. "You don't understand me...I am like a camel and drink when I'm thirsty every 2-3 days."

I remember the Wall Street Journal full page article in 1983,"You can lead a horse to water...but you can't manage it to drink."

It makes no sense to water drinkers just like they don't understand how we can drink all the time.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Oct 2011
Posts: 805
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One thing I thought of Stacey...if he seems disoriented at all this weekend, don't TRY to get him to go to the hospital, just call 911. Let them deal with him. Maybe he will listen to them. Or, have a friend call if there is somebody close enough to you that understands what you are going through. Christine is right, severe hydration will make him think he's dying. Maybe, at that point, he'll cooperate.
So sorry you're going through this.
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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Tell him to drink ensure or boost (creamy things tend not to hurt or leave a bad taste (if its mild) Gatorade probably tastes gross! I don't drink pop, and have only limited amounts of juice - maybe green tea? It's mild, not bitter, and doesn't leave a terrible aftertaste. The alternative is eat whatever is tolerable taste wise then rinse right after. smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Posts: 58
Stacey Offline OP
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Posts: 58
Thanks for the advice and surggesions. I believe this is a depression issue. We go to the Dr again this week and I will speak to the Dr about it then. He hasn't been physically sick for a few days but he refuses to eat/drink enough.

The Dr's office can't give him fluids. It is very difficult to find an IV location when he is dehydrated and requires 'the best of the best' at the cancer center to administer the IV.


Stacey (Caregiver to Husband)
Lymph Node Removed 10/12
Dx SCC MET 10/12
No Primary Tumor Found
IMRT x 33 (Started RT late 11/12)
CT Scan and PET Scan Clear 4/13


Joined: Oct 2011
Posts: 805
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The ER can give him fluids. They do it all the time for c patients.


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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