Hello,
I've posted a number of times regarding my husband Kyle. He's 43 and has been on his death bed for a couple weeks now. I've dealt with everything fairly well until these past few days. The more time he hangs in there the more it breaks my heart. To see how strong he is and his will to survive in such a hopeless situation just breaks my heart. The hospice nurses told us for over a month it will be any day now, any day now. She finally apologized and said she isn't going to say anything anymore. He's breaking all the rules. He is on 24 hour nursing care. He has not had any Jevity feedings in 20 days (these were his wishes when he reached this point), he's been taking 5 breaths a minute for 4 days now, his heart is still going strong, etc.. He has 7 tumors on his neck and 1 on his chest. Who knows how many are inside his mouth. The odor gets overwhelming at times. I feel bad when I lean in to kiss his head or whisper in his ear and the smell gags me. I even feel bad writing this now. I love him and it's so unbearable to watch him suffer. I sit with him for awhile and then I have to come downstairs to see my kids or just get away. I know the odds are high he will pass away with me not in the room. I know it's selfish but I just can't stay in there all day any longer. His family has sort of checked out (they hardly checked in in the help department ever!)and only come by every 3-4 days now to visit for an hour or so. I wondered through the house yesterday looking for something, picking up my phone and putting it down. I finally figured out what I was doing. I was searching for Kyle so I could talk to him about how awful I was feeling. He's been my bestfriend for 18 years and he's who I always went to when I needed to talk. He's now the one I need to talk about and he's no longer there to talk to. This is going to be a terrible year missing him. Thank you for listening.
Tamara
Tamara,
My heart is breaking for you...I am so sorry this is so hard and you are alone. You did the right thing by coming here to vent and get some emotional support. I just can't imagine that your family has not been more supportive...I just don't understand that.
Please know that all of us here are thinking of you and Kyle and sending strength and hugs your way.
Deb
Tamara,
I am so sorry for what you are going through. Given what you've said, it really will be the last day soon. Kyle is obviously young and healthy in some ways (his heart) and the ability to hold on can be amazing. Have the hospice nurses talked to you about any ways that you might talk to him about it being ok to let go? My thoughts are with you.
Sophie
Tamara - Feel free to come in any time and talk to us - hopefully, we can offer you comfort in that you are not alone.
Warmly, JaneP
Tamara, my heart aches for you. I am so, so sorry you are going through this. My mom died at home from Pancreatic Cancer and was on hospice care for the last 2 weeks. She didn't eat anything for 21 days before she died and didn't drink anything for almost a week. The human will to survive is very, very strong. I used to sit with her, hold her hand, stroke her hair and tell her "it's o.k. to go, we will be o.k. and take care of dad". I read "somewhere" that telling your loved one it's o.k. to go helps them to pass on. I know once things get to this point you just want all the suffering for everyone involved to be over. If you just need to chat with someone, feel free to PM me. I am so, so sorry. Hugs, Wanda
Tamara,
My heart goes out to you. I'm so very sorry that you are going through this. I know talking via this forum is different than talking in person but we are here for you. We are all here to support to you. Please vent and talk to us whenever you need to.
Tamara,
I am praying for you and your family. I'm so sorry. I can't imagine how difficult this is for you. Please know that we are all here for you.
Lori
Tamara- I know exactly what you are going through and really can't offer too much advice other than to spend as much time as you can with Kyle, remembering the good times. It will be over soon and you will know that you did what you could to make his last days special. Unfortunately my husband passed after I had left for the evening. The aide that was with him told me that she thought he waited until I was gone. I had been there day and night just hoping i was there when the time came but he had his own agenda. I had only gone home becuase my 14 year old was home alone. Just know that his suffering WILL be over soon-that is the only thing you have right now. I will saying special prayers for you this evening.
Sue
Reading your post almost has me in tears, you are one strong lady and I feel so bad for you and Kyle. He must be a toughy for sure . I can't blame him for fighting death. I would and will do the same when it's time for me to be summoned. I have you both in my prayers .
Dear Tamara,
I do know wht you are going through. My 47 year old brother hung on as well, fully sedated for the last few weeks of his life. He did not want to leave us. We waited for his last breath as well, it was agonizing. Sometimes I could not sit in his hospice room, holding his hand and hoping for a miracle. Then night before he died, I and my whole family were in his room, somehow we all just gathered at once, it was almost like he mentally summoned us. We were standing by his bed in a semi circle, then all of sudden he was trying to open his eyes, up until that moment he just laid there. Each one of us went up to him to say goodnight and he tried desparately to open his eyes and try to say something. The next morning he passed away. He knew when the time was here and so will your husband. He will know when it is time to give up and rest. My heart goes out to you and your family.
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.
Dear Tamara,
I remember just last April when Eddie's father was dying I had some of the same concerns about zero nutrition, the hospice nurses said it doesn't cause pain and the feeding wasn't really necessary. it was a very long and difficult month. they did give morphine to help him along at the end, to slow his heart down I believe we were told. He appeard to die a peaceful death. His children were at peace too that he had finally passed on to be pain free. you are all in my prayers.
Donna
Dear Tamara,
I am so sorry you are going through this. You are now living what I fear the most, yet I know the day is coming. You are in my prayers.
Lori
Dear Tamara,
I too am so very sorry you have to endure this - it is indeed the worst anguish one can experience. My beautiful 43-yr old daughter left us on Sept 29, 2008 after 2-1/2 yrs of suffering, the last 6 months being absolute hell. We too had Hospice the last month & the nurses kept telling us "today will probably be the last day..." She hung on for 2 agonizing weeks. I suffered the same questions about withholding feedings & water (she was on a feeding tube). We pushed the meds with just enough water to get it thru the tube. On the morning she passed the nurse came to get me at 2:30am & said that Teri had just opened her eyes and lifted both her arms in the air (she had been in a coma for a week & hadn't moved a muscle in that time). I was able to hold her until 5:02 when she breathed her last breath. I will treasure the fact that I was able to be holding her - I consider it a gift. You will relive each of these last days of this horrible journey over and over but be assured that it does eventually get better. Know that we are all here to help you through this. You and your family are in our prayers. Come let us help you.
Bonnie
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CG to daughter Teri, age 43, tongue cancer (non-smoker, non-drinker, aerobics instructor); dx 4/06, partial glossectomy, 35 IMRT, 3 chemos, reoccurrance 5/09 (lung/kidney/bone), entered Heaven 9/29/08
Kyle passed away Wednesday night at 7:20. His blood pressure and body temp was low for most of the day. He had that rattling sound for a few hours and it stopped about 30 minutes before he passed. I was putting my kids to bed when the nurse came to tell me he had only taken 1 breath in the past minute. My sister and I went in and he let out 2 more small breaths and he was gone. It was a relief to know he's no longer suffering. I still have not really reacted. I can not thank you all enough for sharing your stories and heartaches with me. I will keep you all in my thoughts and prayers.
So sorry to hear that. I know it's good he is not suffering anymore but it is so hard for the family. I am thinking of you and your family.
Tamara, I am so sorry for your loss. I know you are probably feeling a range of emotions and also quite numb at the same time. At least the suffering is over. I will keep you and your family in my prayers. Take care of you.
So sorry for all of this Tamera. I am glad he and you are no longer suffering through this illness. I know this is a difficult time. My thoughts and prayers are with you.
KATE
My thoughts and prayers are with you during this difficult time.
I have you in my prayers and understand that no matter what happens you are never quite ready for it to be over. You have my sympathy . The best to you and your family.
My condolences to you and your family.
Tamara I'm so very sorry. Please take some time for yourself during these difficult days.
Sue
Tamara, Im very sorry for the loss of your husband. Its truly a sad day when oral cancer claims another young life. I will say a prayer for you and your family to have strength in this difficult time.
Tamara,
I will include you and your family in my prayers.
Tamara,
My condolences, I am so sorry for your loss.
I am so very sorry for your loss. My sincere condolences to you and your family.
Donna
Tamara,
I am so sorry for your loss and will keep you and your family in my prayers also.
Dear Tamara,
I am so sorry. I wish I could find the words to bring some comfort but I know no words can help. All I can bring is my thoughts and prayers. My deepest symapthy to you and your family.
love
C
Dear Tamara,
I am so sorry that you and your family had to endure this horrible journey. I know you are relieved that Kyle's suffering is done. I will keep you and your family in my prayers and please know that God is with you ALWAYS. This site may have a lot of sad stories but it also has a lot of wonderful, caring people who are there to listen. Please remember that you can come here any time and talk to us. Take care and God bless.
Nancy
I am so sorry. This is a difficult time and you and your family are in my thoughts and prayers.
Dear Tamara -
I am so sorry about your husband. I know how hard this must be for you. Bless your heart....I'll be thinking about you..
Judy
Tamara,
So sorry for your loss. My deepest sympathy to you and your family. He is now at peace.
Take care,
Eileen
Tamara,
Words can not express how you feel at this time and there are none that can comfort you. As many struggle please find comfort that many know where you have been, where you are and where you will be with your emotions. It is a struggle but one we must bear. I hope that you and your children heal well and continue the path that you and your beloved husband created when you took each others hand in marriage. I am not much of an expert on helping with feelings as I still struggle but if you ever need to chat or vent, I am here. Take Care
Noemi
Noemi, you are just so sweet, I hope you never leave the forums. That would be agreat loss to us. Take care and glad to see you posting.
Thanks Jim. Just trying to give Tamara the same support you all gave me at my dark hour.
Tamara,
My deepest condolences. I know there is some consolation in the knowledge that he is finally free of the pain and suffering (I hold on to that daily), but it doesn't lessen your grief and there are no words to take it all away. I'm now 8 months out and it still hurts like crazy. Let your family & friends comfort you and know that we are here sending you virtual hugs!
Bonnie
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Caregiver daughter Teri, age 43, SCC 4/06 SCC lateral tongue, partial glossectomy, mod rad neck dissection, 35 IMRT; metastatic return 4/08 to lung, bone, kidney. 10 radiation to lung, 3 Docetaxel + Carbo, lost her battle on 9/29