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Thank you for your kind response. I am so sorry to hear about your husband. Yes, those attacks are very scary. When my husband was in the hospital on Dec. 15, due to his last attack, he was told he should wear a bi-pap but he refused. When we went for his second chemo treatment, his oncologist mentioned it again and Joe told him that he was not going to use it. He ties every ones hands. He is having some trouble with drinking liquids. He was having this trouble in the hospital and they thickened his food and then he would not eat it. But I have not noticed any choking after his eating or drinking; he told me he was taking tiny sips at a time. Food does not seem to bother him, yet. But he has lost more weight. He weighed in yesterday at 94 pounds. I truly worry about him. Today he said that he is going to make a plan to have a cooked meal once a day to help him gain weight and feel better. I told him he should try for 3 meals a day even if it is crackers and milk. One bigger meal and two smaller ones. But whenever he makes his mind up, he will not change it. So I will support him in this change. The problem is that he does not like most foods and always compains if it is something I cook. We will see how it goes. His oncologist also told him to talk to pallaitive care to see if they think there could be a problem with the opoids he takes along with all the other medications he takes. He now had them give him sleeping pills. He is to take 1 before bedtime, but he is taking 2. This is what he always does if he can get away with it. Then he complains when he runs out. Yes, caregivers had a long and hard road to travel. Hope you take care of yourself and hopefully your husband gets to getting better. Will he ever be able to talk again?
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Denise96 - I totally "get" it. My hubs and yours sound like they have same attitude- stubborness. Their way or no way in some things. My husband's been on oxy for over 37 years and xanax for prob 25 yrs so you can imagine when first time he became unresponsive the xanax was taken away because it surpresses the system as does the oxy which was lessened to 5mgs 4 x day which is nothing compared to his taking over 100 mgs a day (not prescribed that way and of course would run out but there' always acquaintenaces.) He was in ICU to be carefully watched even after the intubation was taken out. He still craves for xanax after 2 years not being prescribed and he finds other ways to get it. I have a PTSD over finding him that many times unresponsive and am driving myself crazy with fear that he'll die from doing something stupid before Cancer gets him. Your husband will probably say no to this, but he really should get a feeding tube. It's no big deal and they get the nutrition they need. My husband wasn't able to always eat the pureed food as he would choke. Even now his throat has narrowed so much from the radiation, he may eat Yoplait yogurt (nothing greek cuz too thick). He was drinking "Gutzy". It's an adult pouch thats loaded with juice and veggies but he now just sticks with IsoSource by Nestle's which he puts in his feeding tube. I think he's afraid to put anything down his throat after having a recent Barrium Swallow test I was allowed to watch and saw how some foods would be very slow getting down because of the narrowing of his throat and only would move down after drinking something. When he was having the laryngectomy the cancer was very invasive and they cut into a nerve and also some of his back left tongue which caused his left side of throat area without feeling. We are now in process of getting a Speech Thereapist specialized in tongue exercises to get his tongue to move more in order to be a candidate for a TEP which is a device they'd place in throat that when he goes to talk will vibrate his muscles and sound will come out. Unfortuneately, we are not even sure if this will come to fruition. It is so sad. I pray daily the cancer has not and will not come back. He's being scheduled for a PET Scan as of this past Friday; However, that scan was to already have been done, but someone at the Boston hospital dropped the ball and never set it up after 4 months. We just learned of this on Friday. I figured he'd find out tomorrow as we were scheduled to see his Oncologist in BOS but they canceled because there isn't a PET scan. I've decided to live one day at a time and think of only the positives. My husband has a sense of humor even without talking and it's also a gift to keep his spirits lifted. The best gift is our daughter gave birth this past July to a beautiful baby boy named Roman and he is definitely the Best Medicine for both of us. I'm happy to write and answer any questions as we both are going through some similar problems. My very best to you Denise and your hubs. - Betsy (Betsc)