Hello everyone! My name is Jemi and I'm caring for my 57 year old father that is suffering from BOT cancer since 2009. He is an alcoholic and cig smoker. After trying chemo and max radiation, he was finally forced to have a total glossectomy/total laryngectomy on September 4th. If he had not had this surgery the tumor would have surely closed all food and air ways in his throat. I have recently been informed that he has been dumping beer, and who knows what else, down his feeding tube. Has any other caregivers experienced this and what are the risks that go along with putting beer ito the feeding tube? the swelling has been acting weird as well. The dr said he would stay swollen for a long time, but the weird part is it will decrease then swell up again. Could the beer intake be causeing this?

Thanks for any advice

Hi Jemi - I'm so glad found this place. And what a great caregiver you are to be taking care of your father. I cannot relate directly to your question but I'm sure others will be along soon that can help. I know it can be a crazy-maker to care for an alcoholic even when not undergoing cancer treatment - I was married to an alcoholic for 20 years and there were some pretty difficult and gruesome days. I hope you are taking care of yourself, too. What helped me a lot was going to Al-Anon where i got some great support and it really helped me get through some tough times. An addiction, for some, can be ever so difficult to recover from. Have you talked with your Father's doctors to see if they have any ideas to help your Dad quit the alcohol and the smoking? I'm so sorry you are having these worries. Try to hang in there and I'm sure someone will be along to help and to answer your beer-in-the-tube question.

Thank you so much Anne-Marie! I lost my mom to melanoma cancer 5 years ago and his drinking got worse than ever after that. My brother was arrested for assault and possession of controlled substance less than 3 months after her death. The stress of all that caused him to drink more and more just to deal with everything. He's not currently smoking through the trachae, that I know of, but he can't quit the alcohol. I was actually more concerned about him getting hooked on the pain meds after his surgery than him picking up drinking again.
Both of their addictions prompted me to go seek my own help dealing with it. I started attending a yoga/meditation class which GREATLY reduced the stress in my life and I made some really good friends. I am currently putting the finishing touches on my application to grad school. I'm seeking my Ph.D. in clinical psychotherapy with emphasis on addiction and also on grief and stress releif

I can relate to what you are going through, yoga is a great way to deal!

Jim did have swelling that would come and go after he had the same surgery. Lymphadema caused a lot of that and massage helped get those excess fluids moving and reduced the swelling.

I didn't have the beer down feeding tube issue but I think if it helps him deal with all he is going through and doesn't replace the good calories he needs to take in what's the harm? I'm sure the docs won't agree with me on that point though.

Take care!

Hi Jemi,, your Dad is so lucky to have you. This operation is so huge and life changing. My Kris had this surgery in March '12 and it certainly is life changing. Your Dad has so much to deal with . Kris still has swelling around his throat / neck area. Somedays are worse than others. We were told that it would take at least 9 months for this to subside. At 2 months post surgery he was still hugely swollen. I wouldn't worry too much about this.
As for the alcohol. I guess all you can do is reiterate for love for your Dad and let him know that his drinking upsets you and is probably not good for him in excess. Really, if its going down the PEG it won't be detrimental to the surgical area and won't have an affect on those tissues. Your Dad Has to want this for himself. Do what you can to help yourself deal with this and it sounds like you are.
Honestly I can understand why your Dad is drinking, he is comforting himself the only way he knows how. Until he is ready to get help for his alcoholism there is nothing you can do. Just let him know that you are there for him.
This beer dumping won't be affecting the lymphoedema.
Take care and keep in touch.
Tammy

Jemi, welcome to OCF! Sorry to hear about your father. Being a caregiver is a very difficult job especially with a stubborn patient. The drinking thru the tube isnt something you will be able to change. If he is an alcoholic, then he must want to change himself (which it doesnt sound like he is ready). At least the alcohol isnt touching his delicate mouth areas. Im sure watching this is very frustrating to you.

Wishing you both all the very best with everything!

Thank you all SO much! I very much understand that I cannot change anything he is doing. I've dealt with this behavior for years. What my main concern over the beer down the tube is the risk of it taking away his calories. When he very first had the tube inserted and came home, he was putting 237ml of glucerna in his tube all at one time. This was causing his stomach to bloat and he was throwing everything up. Once he started putting the supplement in slower, he tolerated it better and started to gain weight. He was up to 126 pounds two weeks ago (121 has been the lowest he's weighed), and now he's back down to 122. I feel like the beer to his stomach is swelling his stomach and not allowing room for calories he desperately needs right now. Dr. said at 121, his body was close to a catabolic state.

There is also a quarter size knot that has popped up in the crease of his right arm, which is the same side he had his neck dissection and pectoralis flap done. Could this knot be from all that being pulled upwards or could it me a mass?

Just worried for him

Jemi

There is no doubt that the beer is swelling his stomach and does pose a caloric risk due to fullness. I tried beer down my feeding tube and it was a disaster.
My advice is to buy those 5 liter box wines for your dad and let him syringe WINE down his tube. The wine lacks the fermentation and swelling. The alcoholic content is higher and he will need a lot less to to get the same effect.
All of my doctors have said that since the alcohol goes directly to the stomach and does not touch the sensitive oral tissues at all, it did not worry them. From personal experience stick with WHITE WINE, as the red stains the tube and the leaks stain everything.
Of course it'd be better if he were not addicted to alcohol, but as the Sulpician Fathers taught me in the seminary
[quote]de duobus malis, minus est semper eligendum [/quote]
Charm

Hi all, please let me know if what I'm about to post needs to be moved to a different forum, like reoccurence or something

Yesterday, we saw the surgeon that did my dad's total gloss/laryn regarding the knot that had appeared in his arm near the armpit. Dr. said it absolutely was not a knotted up muscle. He wanted a needle biopsy done but the insurance would not pay for that until an ultrasound had been done. They did ultrasound yesterday and it is positive for an enlarged lymph node. Dr. said it could still be an infection or something inflamed from the neck dissection, etc. Needle biopsy is being done on Halloween. Please say a prayer for us!

This new development can't be helping your dad's stress levels. I got to the point where I treasured the time waiting for the next test or result just for the brief period of stability. I'll be praying that this is nothing of concern.

Sure hope it is nothing serious. Sending prayers your way for a good outcome.

Me too.l. Fer sorry about what you're going through..l it sounds to me like your dad wants to survive since he's going through with all his treatments so I wonder why he's sabotaging his health in the mean time.? I know it's an addiction and as many have said he will have to be the one to decide to stop, it's just sad you're caught up in the middle of the mess. I sincerely hope it's not cancer in his node, and it's just an infection. Take care. And good luck Wednesday!

OK let me tell you, I have dealt with Ron going thru 3 surgeries, and after his partial glossectomy on May 13 he was pouring coffee down his tube plus his formula for a couple weeks than that Memorial Day he tried Red Bull and Vodka...yep he was bonging them thru his feeding tube...than the beer...until the tube came out. BUT he didn't drink alot because it did fill him up quicker AND he was doing it because it curbed the hunger he was feeling because it was too hard for him to eat...he still says now that he hates to eat, because it is so hard to do and takes away the pleasure of eating. So he did this beer thru his tube with 2 surgeries. AND yes he even damn smoked with his trach in! Believe me I was NOT a happy caregiver I tried the nice approach, that didn't work I screamed I cried I threatened...and I gave up, as the saying goes that I heard "he is the Captain of his own vessel" and there is nothing you can do unless they want to do it you just have to learn how to cope with it. And it isn't easy.