The last stages

EJP773March 10, 2005

I posted just before Christmas about my 30yr old son, Glenn who has metastasised melanoma which will end his life. He has battled as hard as he can but after an overnight stay in hospital, he is going home this afternoon to be cared for by hospice nurses and doctor. They wanted to keep him in hospital for a few more days to rehydrate and stablise him after a bad week of vomiting and not being able to eat but he is adamant about going home which we know is the best place for him. The oncologist told him yesterday that there is nothing more they can do for him as the chemo and radiation have not worked at all, and the cancer has spread to all parts of his body. They are going to insert an IV line into his stomach or chest tomorrow for medications and whatever else he needs to make him as comfortable as possible. I will be going there tomorrow and staying as long as I need to. I have tried to stay as strong and supportive as I can but today I am letting myself fall apart for a while so that I can get it together again tomorrow. I found myself just wanting to curl up on the floor under my desk today it was so bad.

My daughter in law is wonderful, she is doing everything she possible can to help him and keep things together which is not easy with the mood swings and some difficult behaviours caused by the brain tumours as well as the everyday business of the house and my grandson. Do any of you understand me when I say that as difficult as it is for her, sometimes I am envious of the fact that she can be with him all the time and that he talks to her and she can comfort him. I have absolutely no doubt of his love for me and I know that in his mind, letting his Mum take care of him is like giving up. I stayed with him last Thursday while Heidi had to be away for several hours and he was not at all happy about what he called "babysitting". I was in the other room after he made this comment and he came in and asked if I wanted a cup of coffee, his way of apologising. When he made it he could only get partway to the room I was in when he had to call out for me to take the mug because of the tremours. My poor baby. You have no idea (or I am sure you do) how precious that cup of coffee was.

I am sorry for this ramble, but today I feel so alone and just needed to connect with people who can understand. It is beyond heartbreaking to watch this big strong independent man diminishing before our eyes. As hard as the next few days or weeks will be, I hope we can comfort him and allow him to keep his sense of himself.

Many of you were very kind to offer your best wishes when I first wrote and I have had lovely emails for some very special people over the last months which have really helped me. Please keep my Glenn in your thoughts and prayers for this last part of his journey. Elspeth

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My Dear Elspeth,
I have never had a family member pass from such a debilatating disease, but being a healthcare worker for 20+ years, I have had the honor of caring for people in the last stages of their disorders. I could well understand some of what you and your son are going through, and please know that these are all so-called normal feelings and emotions. There is no right or wrong to any of it. I feel simply awful that I couldn't just reach out and hug you, let you say whatever is on your mind, cry your eyes out, scream, or say nothing at all. Please know that we are all thinking of you, and wish that you didn't have to bear such heartache. You've all earned your "wings" for sure. Hugs.
Emma in PA

    Bookmark   March 10, 2005 at 8:15AM
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Elspeth - hugs to you. I can only imagine it with a parent which has it own strangeness - you never really imagine taking care of a parent in the way you have to when they have a debilitating disease and they can't care for themselves - I am sure it is much worse with a child. I do understand what you are saying about being envious. I am sure you have worked out whatever you can with being there as much as possible without being intrusive.

I will keep you both in my thoughts and prayers.

    Bookmark   March 10, 2005 at 4:38PM
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First of all let me tell you that I truly feel your pain. There is no pain that can match the pain of watching your child die. I've been exactly where you are now; however, I did get to spend everyday (24/7)with our son for three months before his death. That was a true gift from God that I will be thankful for forever.

I remember your first post and have thought of you so often.

I'm sure you already know this, but please, please do not take any of his negative actions or words to heart. He really can't help saying or doing those things. He has a terrible battle going on inside. He loves you and he knows you love him.

I can't tell you how very sorry I am that you and your son must go through this. Please remember that you will be in my thoughts daily. If I can help you in any way, please email me.

    Bookmark   March 10, 2005 at 9:41PM
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Elspeth, my heart hurts for you and Glenn right now. I am so sorry that this last stage has become a reality. I'm so sorry! All I can offer you is my prayers for all of you, for strength and faith.
I too watched my baby leave this world, but it was for only 15 hours and I don't think that she suffered. I can't imagine the pain of watching a child go through an illness like this with so many issues to deal with.
Please keep us posted and always feel free to share your feelings. There is always someone else who can relate to various issues dealing with death, illness, and grief, on this forum.
God bless you all. I will definitely keep you all in my prayers each day.

    Bookmark   March 11, 2005 at 9:24PM
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My heart aches for you and your family. I hope your son is comfortable. I've thought of you a number of times since your previous post and wondered how it was going.

Don't apologize for rambling. Come here to ramble often.


    Bookmark   March 13, 2005 at 1:06AM
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