Barbara, My 32 year old son is dying. He is waning slowly. It is hard watching him be miserable and having no quality or enjoyment of life. I do not want my son to die, but I do not want him to suffer. I feel so guilty because I know what the only alternative is (other than an absolute miracle which is always a possibility). Some days I am ok, others I just cry on off all day. I am at a loss of how I should feel or think. I didn’t really realize how a person could grieve before the imminent death. Any words of wisdom or reading that might help my heavy, sad, fearful heart.
I am so sorry to hear of the challenge you and your son are facing. Our children are not suppose to die before we do. I can not think of any grief more intense than watching your child deteriorate before your eyes. You are grieving his dying and his eventual death. This is oh so normal, but that doesn't make it any easier.
From the moment of a diagnosis of a life threatening illness we begin grieving. We grieve not just the eventual losses that come with serious illness but the approaching death itself. We grieve our losses before they ever happen and while we are doing this pre-grieving (for lack of a better word) we are looking for the miracle.
There are no words that can really make anyone feel better when life seems out of control and we are faced with an inevitable and unacceptable future. I can only suggest you love your son, be there for him. Spend time with him, talk to him about everything - good and difficult. Make some memories. Use this gift of time with him wisely. Treasure what you have together now. Although you would like life to be different for the two of you, it isn’t. Right now is probably the best it is going to be so live through it, make it special.
You might find The Eleventh Hour helpful as his condition continues to deteriorate. From what you described in your email it doesn't seem like your son is actively dying (weeks) so you might find A Time To Live helpful. Even though I wrote it for the patient, I think it can give family members direction also.
Something More about... Our Children Aren't Supposed To Die Before Us
My booklet, Gone From My Sight is necessary for families who have a loved one who is dying. It makes clear to the family what the normal natural dying process looks like, therefore reducing fear. The Eleventh Hour gives suggestions to the family about what they can do for the loved one during the dying process and helps to make the dying process sacred for all.