Caregiver stressed to the max

Your story sounds really familiar. My wonderful wife said those words many times I'm sure. The stage your husband is in is what I call the "any calorie is a good calorie " stage. Nobody told me that the radiation really just started working on you when the treatments were finished. For your husband swallowing is extremely challenging and nothing tastes good enough to be worth the effort. If hes got the tube in use it. Alot. He needs that nutrition and your gonna have to pour it down him. I hated that damn feeding tube. I hated the power port for the chemo too. I couldnt wait to get them out. They made me feel like I had spare parts from "Radio Shack" installed because they couldnt find the real parts. The truth of the matter is he needs the peg until he starts eating on his own. Don't "ween him off" by trying to cut his intake down. I can also tell you that a real ice cream milkshake was my best friend when was trying to at least slow down the weight loss.

By the way. I tried them all.

Dairy Queen makes the best fast food milkshake.

Its not really even close.

This must be so difficult and I'm sorry you're going through all of this. Your husband is very lucky to have you by his side during this time, despite how challenges things are. As the previous poster mentioned, your wellbeing is important too and many caregivers benefit from finding support - whether that's from seeking counseling or finding a support group. The American Cancer Society has resources for cancer support groups and there may be some local groups in your area.

Your story sounds very familiar to me. My husband was also diagnosed with nasopharyngeal cancer and had a similar treatment plan. One of his doctors called him a "complication magnet". He had his PEG at week 2 and just had it removed 8 months after treatment was done. Lots of problems with swallowing , fear to eat, choking etc. But I will tell you that it does get better! I can't write you the long response I would like to - because 1 year after diagnosis we are on the cruise that we had to postpone because of the cancer being discovered. I'll send you a long message when I get home and have internet I don't have tp pay through the nose for. As far as caregiving goes....don't lose hope, it WILL get better, call in reinforcements and let your team know - they may be able to access some resources for you.

Barbara

My hubby is just getting started with his journey into cancer tx. I am not an expert yet on being a caregiver in this capacity, so I cannot speak from that difficult point of view. However, I am a mental health therapist and maybe I can give you some tips...for you. I agree with what is posted here and that you must take care of yourself. Caregivers tend to be "other-directed" and end up not focusing on themselves, and this affects their well being. If you really can't get out of the house, it is important to focus "here and now." WHen we have a foot in the past (depression) and one in the future (anxiety) we are not in the present. If you have not heard of mindfulness, a quick scan on the internet can get you in the right direction. THe short story here is that practicing being in the moment actually helps overactive frontal lobes take a break, so try coloring (Which I do while waiting in dr. offices), needlework, jigsaw puzzles, cross word puzzles, crochet, anything that lets your mind rest. If I may...gently suggest.....you may need to find a mental health person to talk to. You get a whole hour for someone to simply listen to YOU. There are two online things you might check out. One is called Breakthrough and provides online video counseling and the other is called Talkspace, which allows you to write and have a clincian respond to you in writing, with video options, but allows you a lot of anonymity. And this may sound harsh...and really I don't want it to, so please know that I am coming at this writing from a place of concern......your husband must take responsibility for his recovery.You can help, support, and love him, but he has to decide to get well. Our spouses didn't ask for this disease, it's true. And I never thought I would have to provide care for my husband, (who is, as I write this at the dentist having teeth pulled so he can begin radiation, with a visit to the chemo doc to get that tx plan inplace later today), but I am about to begin my journey doing so. IF you have not expressed your real feelings to him it might help him to know that you are tired, that you need him, tha you want to continue being there for him and that you want him to fight...like you are.
One of the things I really believe is "meaning precedes motivation." What that means is that until something MEANS something to or for us, we are not particularly motivated to do much about it. Your husband's recovery has to mean something to him, which is why a mental health counselor can help him. He might be interested in the two sites I mentioned earlier. I hope this helps you. It helps me to write it as a reminder that I, too, will need to practice my own preaching. Talking helps, and writing has been found to be even more helpful. I will be glad to offer what support I can

s

Welcome and also sorry you need to be here. So far you have had some great advice. Matt hit everything and then what the caregivers added was also great information. Sometimes there comes a point where you just have to tell him that his recovery is up to him. I will be a little blunt and sorry but this is affecting you. 

Most of the time this cancer can and is harder on the caregiver, You feel all his pain, even when he doesn't have any. It's called love. The treatment for head & Neck cancers is said to be the 2nd worse one can go through. Radiation and chemo does so much and even different in ways to everyone. Many have it so bad they think they just can't do it, but they can and do. It is a road to hell and back in many ways, and is life changing for everyone involved. You need to let him know what you feel and he has to do the same. He needs to know you need to set some time every day aside just for you. If you get run down, and you are, you will be no good for him or yourself.

I did not experience chemo or radiation. It was explained to me in great detail then he saw the x-rays of my lungs and things changed real quick. My surgeon that I chose and was the head doctor over all of them, came in and sat down and said, you will not survive radiation or surgery because of your COPD.  After a moment he said there is one way we will do this. [The anesthesiologist would not touch me and said he could not keep me breathing.] We will remove your larynx and you will breathe out your neck the rest of your life.  I did say it was life changing. Well, it was not a hard decision to really make, I am really fond of breathing so we'll do the surgery. People will say, I can imagine what that is like. No, they can't, not even come close. Now I can talk as I have a prosthesis in my neck, but it can be hard and if both hands are dirty or full, I can't talk. I have to block the air in my neck and it then diverts to my throat so I have a voice. Now it has been 30+ months and my family knows this but treats me the same as before which is good. Until my hands are full and they ask a question when I am trying to fix something and can't answer. That is when it feels like I just got slapped and made aware I am not the same as before. Now they don't mean to do that and they know I can't answer and they will wait for me. Most days I'm ok with this, but there is some that really get to me.  I think your husband just may feel the same sometimes. He knows he has changed and then add the kidneys? It can be a lot. If he could maybe talk with others it might help, but it could be hard to get him to go. I volunteer with two support groups and I have been able to help many, and even myself.  I will keep you both in my thoughts and prayers. He may be in denial and just won't really accept it. Once you accept this is when you can heal.

Bill.

DarcyS said:

Also a caregiver

I, also, was my husband's caretaker through his long and difficult treatment( stage lV piriform sinus cancer  T1N2M0) We are now 4 years clear and life is good.  Eating was difficult for my husband after about week 3 of radiation due to taste, pain and vomiting.  He would have 4 ensures a day and no solid food at all.  He knew how many he needed in a day and I would ask him througout the day when he planned the next one.  The questions seemed to help and put him in charge of it and I would remind him of the time if it passed. It was hard due to the coughing and vomiting but he knew these were like medicine and needed for recovery.  He did not have a peg and didn't want one.   He began eating some solid food about 6 weeks after treatment and everything just continued to get better.  

Visit this site often, it can be a lifeline and place filled with understanding, knowledge, and helpful people.

My hubby doesn't want the PEG either and I want to support him with his choices. I like that yours knew how many he had to drink daily and I we will suggest the idea of setting times for my husband when/if we get to that spot. His doctor told hi that while the ensures ad all the nutritional values needed for the day, it wasn't enough caloric intake for him, so I was wondering if your husband supplemented these drinks with anything else?

s

susanc1 said:

Inspired

My hubby doesn't want the PEG either and I want to support him with his choices. I like that yours knew how many he had to drink daily and I we will suggest the idea of setting times for my husband when/if we get to that spot. His doctor told hi that while the ensures ad all the nutritional values needed for the day, it wasn't enough caloric intake for him, so I was wondering if your husband supplemented these drinks with anything else?

 

s

He was told 3 ensures were not enough but 4 were.  This was a bit of a battle, but his PA was adamant  and he listened to her. He added a product called, Juven, into water for added protein once a day as well, though this didn't add many calories.  He began to slowly add solid food back into his diet about 6 weeks after treatment and is totally back to eating anything and everything he wants.