Tamara
I am so sorry you are suffering so through this long terminal phase of Kyle's illness. It seems he wants to stay with you as long as he possibly can despite the disease marching forward continually. Try not to feel guilt for wanting to escape from it all at times, those are normal feelings. I am sure you are physically and emotinally exhausted with all you have been through thus far.
We are all here for you to vent as you need to, and emotionally support you. Wishing you strength and courage to face each day.

Tamara,
My heart goes out to you and your family. There was a trick we used in surgery to block out bad smells. You put a small amount of Vicks in your nose. Its smell is just about the only thing you can smell. If the odor is questioned, maybe you can tell a small white lie i.e. you're using it to keep your sinuses open. In a situation like this I'm sure it would be forgiven. In a situation where you are wearing a mask; Oil of Wintergreen or Clove can be used on the outside. God Bless

Tamara,
I wish there were something to say that will help you. I read your post several times and recalled what happened to my brother. Selfishly, I wish he were still here.... better, yes but anyway would be fine, for me. ME being the key word. He did suffer and it pained my very soul to see him. Don't know if they or we will know when its time to go but take the time to thank him and tell him you love him. It's been alomst a year since my Jorge is gone and it still feels as if it were yesterday. Take care Tamara. We walk with you.

Noemi

Thank you all for your kind words. Someone used the word "anguish" and that fits this feeling perfectly. It's not a feeling I'd ever experienced before. I don't like it! I'm trying to stay calm and let things play out as they will. The hospice nurse told me today I really should not be in there any longer when they change all the bandages. I guess the one tumor on his neck has opened completely to the point you can see into his throat. It's crazy what the human body can take. I worry about these awful images haunting me later. I also worry about the decision to stop feeding him. I knew his wishes to a point but it was still me telling them to stop. He's gone 21 days today. Unbelievable. They all told me he would go before he died of starvation. I do not think that will be the case. I think starvation will be the cause of death. The cancer has grown so much in three weeks that I am sort of glad he's closer to death from the lack of food. That sounds awful but how long could he go if I had been feeding him? My kids are yelling I better go. Thanks again for your replies.
Sincerely,
Tamara

Tamara- Try not to dwell on the cessation of the feedings. I too had to make that decision. It was the hardest thing I ever had to do and don't know if I could ever do it again but in my heart of hearts I know it was the right thing. He probably wasn't processing the feedings anyway. I just want to let you know that I feel your pain and wish you peace.

Sue

This would be the ideal forum to make our representatives in DC come and read at least for 1 hr a week. Maybe we could get the Federal help that is needed. This is the saddest place to vsit and read posts. But I just have to read them like most of us do.

Do not worry about the "not eating" thing. You are not starving him. His body, in the end stages of life, would not use the nutrition even if if was provided. He does not want - nor does his body want - the feedings. Let that guilt trip go. Not using nutrition is just part of the body's way of shutting down.

I agree - try NOT to be in the room during these dressing changes. I know if I was the patient I would not want people there to see this. I would not want these memories to haunt my family. We all want to be remembered as the vibrant, laughing, purposeful humans that we have been.

Try to hang in there.

Donna

Donna,
WOW. Thank you. Your post made "me" feel better and I hope that Tamara will one day understand. One never knows when peace will come and you just gave me some. Thank you.

Noemi

Dear Tamara -

I am so sorry you have to go through this. I just recently lost my husband (2 weeks ago) and those final weeks and days are absolutely heartrending, because you can't talk to him and you can't know how aware he is, and there's no one else who would understand what you've been through or what you feel except him. It's the most helpless I've ever felt. It's a double-edged sword...you can't stand to not be with him, and you can't stand to see him suffer, and you do have to leave for periods of time. And I understand about the odor...it's ghastly. My husband had open tumors all over the lower part of his face and neck, and the smell was there all the time.

On my husband's last day, I was there by his side all day, as were many of his friends and family members. Around 11:00, everyone else left, but still I was there. I dozed off somewhere around 2:00 a.m., and he left while I was sleeping. It's like he knew and didn't want to go while I was awake.

You're in my thoughts & prayers. Stay strong.......

Tamara

Im sorry for what you are going thru right now. It must be so difficult for you and your family. I will keep you in my prayers that your husband passes peacefully. Do not let guilt about feedings make you feel worse about this situation. You have done everything possible to help and he knows you are there with him.