how do you handle feeling so helpless for your husband/wife

hi Terry
Only advice I can give is never let them know that you feel helpless, I always tried to be positive throughout Paul's illness, there were many times when I felt like throwing im the towel, but I took myself off for a few minutes and mentally kicked myself and went back with a brave face.I know how hard it is and I pray you have a more successful outcome than we did, but I really believe that Paul had at least 6 months extra because I refused to let him give up, I'm just not made to be a nurse and I sometimes felt like screaming, but when he was really down I gave him 5 minutes sympathy and then told him to pull himself together and stop feeling sorry for himself, sometimes you really do have to be cruel to be kind.
Jennie

Thank you jennie for the response, Yeah I am sometime to easy on Jerry I let him get by with the pity party. He makes me feel guilty for eating in from of him and he seems to resent that I have a job I have to go to. If I am not home right away after working (which I am ususally at the grocery store) he questions me. the weather here is not too cold but he will not go outside. He just sits here in this house and watches TV. When he was not ill he never watched TV. I get really mad at him at times but I know he is going through hell right now.
He is going to the Dr. again tomorrow I wish they would have another answer for us.

I read my notes and I see that I am being really negative. A little postive note. When our grandaughter comes to visit which is every other weekend. She is going to be 4 next month she does not let it bother her that her PaPa Jerry has a hole in his neck or can not talk to her like he used to. She comes in the door and gives him a big old hug and tells him she loves him. I think I need to be more like her,

Hi Terry,

It has been just over 2 months since my husbands diagnosis/ 3 weeks since his partial neck disection and removal of 30% of the base of his tongue and some off the side, and to tell you the truth I fell apart.
Cry? I think I refilled Niagra falls most nights! but....... I always did this in private.
I found this board and typed in my fears and woes, it helped to relieve some of the pressure and at the same time fantastic people came along and answered my questions.
The reality of it all has now dawned on Richard and he is angry........angry that he got "C" angry that he smoked (given up now), angry at his "it won't happen to me but it did" attitude angry for no apparent reason,(well it seemed that way) I could go on and on...
This past week I cannot do right for doing wrong, I have resorted to going to blockbuster and renting a couple of DVD's for him, it seems to relax him somewhat,and it gives me an excuse to get out the house. I don't know if I am doing the right thing but I try.
I have no doubt that you are doing a wonderful job looking after your spouse, but you must look after yourself too.
I am a complete and utter novice at this "carer" role but if I can be any help at all, (even to suggest a good movie!) just drop me a line.
Sammie
Sammie10066@aol.com

Hi Sammie thanks for writing. Jerry is doing some what better due to the change of weather he is going outside more and not sitting in the recliner all day. He is just so frustated tha t he is not able to do things that he used to do. The Dr. gave him some pills to help with the depression and anxiety but he will not take them. He is a very hard headed person who some times wears me out.

I do work and to tell you the truth it helps me keep my mind off of things. I lost my Mom in December due to cancer of the bronchial tube, the day before Jerry was having his voice box taken out. I really do not cry any more I do not take any antidepressants just my herbal St John Wort's I swear it seens to help me

Keep in contact

Terry

I don't know how you do it! reading your post made me very very humble ..... you are certainly a very strong person and I take my hat off to you! I have only just started out on this long road used to go to sleep wishing it was all a dream or a mistake I have since learned from this forum I should be grateful as there is always someone more worse off.
Good Luck, I am here to chat always!
Sammie

Terry, Sammie and any others out there.

I'm not a spouse in the way you meant it - I was the patient. When I told Sandra what was wrong with me she changed from being my wife and friend, and grew into the most wonderful support person you could imagine. I think that's what you are doing too.

I just got back from a consultation at ENT about my swallowing problems - seems that throat stretching won't help me because the problem is to do with the loathsome thrush. But I also heard the specialist say that usually a diagnisis like mine, submandibular T3 squamous carcinoma of the salivary gland, has a poor prognosis. Meaning that most people die from it.

Well I didn't, and I believe that alongside all the treatment from my team, one of the reasons I am still here to annoy people is Sandra's unflinching continuing support.

As a patient, I'm horrible. I hate being sick, I deal with it badly, I hate being disabled in any way, I get angry and frustrated about eating problems. I hated being fed through a tube, I loathed being feeble, and all the rest you know so well.

Every case is different, but I know from my experience that the strength of my partner was crucial in my continuing recovery.

I think this will be true for each of you - whatever happens, your support has helped your partner make it this far.

On August 28th this year, Sandra and I will celebrate our 40th wedding anniversary. I know I'll be there for it, and I know that I might not have made it without Sandra's support. I've given her the hardest time of our lives - she's repaid me with love, encouragement, affection, argument, provocation and all the pushing I needed to start to rebuild my life. It worked for me.

May it also work for you

Aroha, love and warmth,

Hi Sammie

It's funny cause when Jerry could talk he was always very vocal spoke his opinion on everything and I would tell him to just shut up I would give anything to hear his voice now. Want to hear him tell me he loves me. He show me but I miss hearing those 3 little words

Terry

Hi Philip
Jerry my husband can sometimes get on my last nerve, but he knows I am behind him in what ever he want's to do. Some time I do not totally agree with what he does, but he knows I am here for him. Even his ENT Doc told him that he was talking to a brick wall.
Thanks for writing
Terry

Terry
Its funny hearing you use to tell jerry to shut up, since i had voice box removed my wife Elaine says shut up to me all the time. It seems she can look at me and know what i am thinking its quite funny. The thing is she is usually right. Life goes on in its own funny ways.

Hi Labose, yeah Jerry will still yell at me sometimes he uses alot of finger gestures!

His dog was having a hard time with this also he has a blue healer who is his companion 24 hours a day and she really does not understand the clapping of the hands. I did get Jerry a horn when he first lost his voice box, but she thought that was a toy.

Hope all is well
Terry

Know the feeling I have 2 dogs an Airdale and a Lashsa and they are staring to understand hand signals. THe Servox I use the frequency is to low for them to hear. Life still goes on, in its own funny ways