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He hasn't left yet but he will be going

Posted by EJP773 (My Page) on
Fri, Dec 17, 04 at 8:02

I found my way here last year when my sister died and have found some comfort just reading posts. Thank you.
Now I have to accept the fact that my beautiful 30yr old son is dying. He has cancer which has metastasised to his brain, lymph system, adrenals, lungs, liver and just about anywhere it can be. He had a melanoma removed five and a half years ago but it returned and caused seizures in September and tests in the last few weeks have shown that it is spreading rapidly.
He doesn't want to talk about it and I have to accept and respect the way he wants to deal with it, but my heart is breaking for him. He has a lovely wife, a seven year old son and a 17 year old step-daughter. We live about 50minutes away from them and I will see him this weekend.
I want so badly to be with him every minute of every day but I know that his little family need to be together as much as possible just now and they want to try and make Christmas as normal as possible for the little fellow. I guess that is what we are all aiming for as a family. He doesn't admit to much pain and is to start radiation next week.
Have any of you been in this position of watching your child die and the feeling of total helplessness? We are beyond pretending that he can beat this, even the doctor has written to his insurance company saying that the likelihood of a cure is negligible.
So many of you have shown that life does go on eventually, never the same and never the way we want it but it does go on. I guess I just needed to write this down and talk to people who understand. Elspeth


Follow-Up Postings:

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RE: He hasn't left yet but he will be going

Elspeth, so sorry to hear of your son's illness. I'm glad he has a loving family to surround him.

I watched my mother die, not knowing if she would live 5 more minutes or 5 more months. While I was grateful for every living minute with her, it was a sad and difficult time.

I'm glad you shared, and I know you will be in the thoughts and prayers of everyone here.


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RE: He hasn't left yet but he will be going

Dear Elspeth...it is truly a very sad situation. Both my parents had long declining illnesses and it was heart-wrenching. You do a lot of grieving while they are still with you.Every lost capability was grieved. You can only be with him as much as possible...by that I mean involved in the aspects of his life/illness that he will allow you to be a part of. The time will likely come when he will need physical care, and his young wife will need your help.
I am so sorry for you. You are on the saddest of journeys. Stay in touch. Shalom, Derry


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RE: He hasn't left yet but he will be going

I'm so, so, sorry, Elspeth. I watched my 19 year old daughter die for 15 hours. I knew it was inevitible. I watched my mom mentally deteriorate and knew that death was inevitible. She had Alzheimer's. It's a very hard thing to have to go through, and yes, you do feel so very helpless.
Life will go on for you, but we all know that it will never be the same, just as it wasn't the same after you lost your sister. We just have to try to use our sufferings and sadness to help other people when they need us. Put it to some good use.
Many blessings to you!
Lu


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RE: He hasn't left yet but he will be going

I just want to thank you for your responses. It is good to have somewhere to go when I need to talk to people who understand but are not directly involved. You have all shown such strength and I hope I can find some when I need it.
There was a response sent to my email from Suzy who has been in the same situation and I thank you so much for your honesty and I am so sorry for the grief you are feeling. If you wish, I would be happy to have you email me directly at Elspeth777@hotmail.com if it would help you to talk to me. I am in Australia, so responses may have to allow for time differences, although I don't sleep much and spend quite a bit of time on my computer. Please don't feel obligated to respond, whatever you feel comfortable with. Elspeth


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RE: He hasn't left yet but he will be going

Elspeth, I am so sorry. I have not lost a child so I won't even pretend to know how horrible that would be. I was with my Dad when he died (Alzheimers) and I was with my husband as he was dying but I was trying to save him and rather than holding him I was doing CPR. But a child - I can't even imagine. My heart goes out to you and my prayers just went up for you. I'm sure you must be torn because you are trying to do the noble thing and give his wife and their family the time they need but as a mother I know you want to be there and just cradle him again. I hope that you can find a way to get what you need, too. God bless you.


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RE: He hasn't left yet but he will be going

I'm so sorry, Elspeth. I'm impressed with your sensitivity toward his "other" family. They're lucky to have you. I hope you'll make your feelings clear to them. It's always possible that one or more of them would appreciate your presence, but don't want to ask. It's always good to eliminate the possibility of misunderstanding, especially in highly-charged emotional situations.

All I can advise you is to say everything to your son that you want to say. Although my daughter Gillian died suddenly, it was a comfort to me to know we had left nothing unsaid.

Susan


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RE: He hasn't left yet but he will be going

Leogirl, you are so right. That is all I want to do, just wrap my arms around him and not let him out of my sight. I have been a paid home respite carer for about 15 years, particularly with people with Alzheimer's, so I know the heartache some of you have had to deal with. I also know that my Glenn is suffering greatly emotionally and that he knows how devastating this is for all of us. He has put up his defences and won't even let his wife talk about his feelings yet. I have left messages on their phones today but so far have not received a reply and it is almost 11pm tonight. His father and I hope to be able to see him tomorrow. Glenn and I are so much alike and we have a deep understanding of each other. As much as I want him to talk to us, I also know that he needs to protect himself and distance himself for now. But as you all know, there is a difference in what we know with our heads and feel with our breaking hearts.
My younger son is taking it all very hard. He and his wife are expecting their first child in June and his emotions are so mixed up between happiness and deep,deep sadness. I know the baby will be a blessing to us all but I find it almost impossible to think that far ahead just now.
Glenn's wife Heidi and I are very close and she knows that she can call me at any time of the day or night. She has been strong but the truth is just sinking in for her.
I wrote Glenn a letter about two years ago, just felt like doing it one day and I know that whatever happens, he has always known how much I love him. He loved the letter and he loves his Mum.
Somehow, I feel that things are going to change this coming week and that is why I need to see him tomorrow. Thank you all for your caring words. Elspeth


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RE: He hasn't left yet but he will be going

I am so very sorry for you and your and his family. You sound like you are a very close family. I will say a special prayer for you all and send special thoughts for strength through this very difficult time. You are a strong shoulder for his family to lean on, yet this is your son you are losing. I am truly sorry. I am glad you are here in this forum to share what you are going through. I hope you find some comfort here.

deb


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RE: He hasn't left yet but he will be going

Elspeth, You both may find comfort in just talking about ordinary events from the past.
Sometimes small talk speaks more about how we feel than trying to make some valiant goodbye speech.

'Remember when...' is one of the best openings I know.
Hugs and hand-holding are the best gestures we have.
Sitting quietly together is a comfort beyond words.

Nell


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RE: He hasn't left yet but he will be going

I am so sorry that your son is dying. It must be so terrible to know you can do nothing to stop him from going. I only had a moment to know that feeling but I know it well. Aaron was also 30 and died suddenly so that when I saw him he was already in heaven. He had two slightly warm spots that I touched and that was a comfort to me. I had no time to say any goodbyes but I know that warmth was from life and am grateful for that moment. I am so sorry that you have so much grief to go through. My own is still so fresh that it has been hard for me to post any words to others.
Carol


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RE: He hasn't left yet but he will be going

My sincere sympthathies. I do not have children, so I can't even begin to imagine how you must feel. But I did watch my mother die from a brain tumor. She was diagnosed on December 23 of last year and died this past September 18. Nancy Reagan summed it up best when she referred to Alzheimers as a "long, slow goodbye." Although Mom did not have Alzheimers, she had a disease which robbed her of her memory, reasoning, motor skills, etc. -- very similar. It was a long series of losses and goodbyes, ending up with the biggest loss of all.

How best to cope? One day at a time. Sometime it is one hour at a time. Is he in hospice? I hope so -- they are a source of support to the family and it is extra care and comfort for the patient. He would surely qualify. The hospice nurse for my mother gave me her cell and home numbers, so whenever I had a question I did not have to go through the ridiculous rigamarole of trying to reach the doctor (who took her sweet time returning phone calls). I just went right to the nurse.

I won't tell you to "take time for yourself." People told me that and quite frankly, although they meant well, it irritated me. It was very hard to focus on anything else but my mother. When I was up to it, I did socialize. I did not need to hear people preaching at me to do it, though.

Come here any time and talk to us.


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RE: He hasn't left yet but he will be going

It has been good to hear from those of you who have emailed me and posted here. Glenn is determined that he does not want anyone "fussing" over him. He would not answer any calls on the weekend or yesterday but today, after talking to his wife, I went to see them. I had just had a computer done up for my grandson, so that was a good excuse. I can see a change in him from last time but he is still up and around, although tires easily and sleeps quite a bit. We are in for a very hot Christmas day, so they are organising an air-conditioner to be installed on Thursday which should make it more pleasant for him. I got a lovely cuddle which I have been needing, so that will have to content me for a while. I know I am very lucky to still have him but my chest and jaw get so tight keeping it all in, wondering how much longer. But I have promised to be as brave as he needs me to be and let him do things his way while he can. As foxesearth said, normal conversation and no dramatic goodbye speech are what he needs. He has no doubt of the love and support surrounding him. I am very impressed with several of his friends who keeping in contact with him and not giving up on him.
I wish all of you a peaceful Christmas and holiday season, family and friends to share it with and a new year of hope and wonderful memories. Elspeth


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RE: He hasn't left yet but he will be going

Hugs to you,Elspeth, from the state of Virginia, USA. Love perseveres. Derry


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RE: He hasn't left yet but he will be going

We had a lovely day yesterday with both boys and their families. Glenn was in good spirits and is still determined to beat this. He talked quite a bit last night about what is going on and he seems to have complete faith in his doctors. I think he was very relieved that we were all able to get together and enjoy each other's company. I am so impressed with his friends who treated him the same as always, joking around and talking about everyday life. They each came to me on the quiet and expressed their sadness and their willingness to be there for him. He has been friends with these young men since early teen years and it must be very hard and confronting for them.
It was lovely to hear him laugh and see him smile. He has shaved his head completely because of the radiation but still manages to keep his sunglasses parked permanently on his head. I am going to hope with everything in me that he can stay this way for as long as possible.
I am so fortunate to still have him and to know that he is strong enough to handle whatever comes to him with the love and support he will always have.
I hope you were all able to get through Christmas with all the memories and to find some hope for better days. Elspeth


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