The following is Jean's very touching response to a mother who has asked for advice on how to cope with the emotional strain of caring for a child in the late stages of JHD.
This is not so much as a difficult subject for me any more, as it is for someone who is going through this with their child as you are. First, you DO HAVE the most important thing to give.....LOVE. This does not come freely and not all people have it to give!!!
My heart and soul died several times every day in the last few years of Kelly's care and especially the last 6 months of her life since she went downhill so very quickly. To have to tell your child that it is okay to let go, if they want to....that you'll be with them again one day...is THE hardest thing any parent has to do. And yet, we must when the time seems near. We have to let them know how brave they are/have been, how much they have contributed to your life and your joy & love. How very very special they are and will NEVER be forgotten but remembered always with respect and love. It is so important for them to hear these things and to know that you will miss them but you understand when they get too tired to fight any longer. The first time I told this to Kelly, when she was burning up with unexplained fevers and delirious seeing Angels and talking to her Grandpa who had died a few months before, I wanted to die with her. I seriously had thought if my child goes, she is going with peace and I will travel with her. That had been in the back of my mind for years. I would NOT let my child suffer.
How did I survive before she died? One day, when I once again had to tell Kelly it was okay to let go, that God would not let her suffer and both of our lives were in His hands, a great sense of peace came over me. Then I realized what so many had said before.....we cannot be superhuman and "fix" everything. There comes a time when we all must give our lives over to a greater being and trust His judgment that what happens was meant to for a good reason. When I explained this great sense of relief to Kelly and told her that from that day forward we were going to put our lives in God's hands, as He knew what was best for us, she too smiled and shook her head "yes".
The last week of her life I think I "knew" she was dying, and did not want to accept this but in my heart did. I prayed, especially to the Virgin Mary, that as one mother to another, I begged her to give my child peace. To not let her suffer if she must be taken. This prayer was said once again when sitting by Kelly's bedside a few minutes before she died. When she stopped breathing, I had just stepped out of the room for a second. Kelly knew if I was there I would have done everything in my power to revive her, and this time she did not want this. If you could have seen the biggest smile that had come on her face in the moment she left, you would know the serene sense of peace I felt knowing she had not struggled one second and actually looked as if she had seen something or someone so beautiful, she went gladly.
I wanted to die right then. I chastised myself so often for so many months not being there in that second. I also knew in my heart Kelly's quality of life had severely been compromised those past few months. When I looked at pictures taken of her the month before, I was shocked at what my heart and mind would not allow my eyes to "see". One sense of peace through her death and afterwards was the fact that we had planned what we wanted upon our death, together, two years before. This let us have a warm and beautiful memorial service for Kelly the week after she died.
Let me say I'm not a deeply religious person. I quit going to church a hundred years ago but have always believed that there is a supreme being (God?) and I also believe there is a different form of "life" after death. I was raised Catholic, therefore had always felt a sense of connection with the Virgin Mary. Now I didn't believe she was a virgin, but a beautiful person at heart/a good soul who suffered watching her son be tortured. Kelly and both had several experiences during the last few years of her illness which gave us both strength in the confidence she was being looked after. One night, even, when she was hallucinating and thought evil spirits were trying to take her, with my own eyes I saw this vision of a beautiful male angel come into her room and give assurance she was safe. Upon describing what he looked like to my Mom, she said it was definitely Michael, the Archangel.
After Kelly's death I think I was numb and in shock for many many months. I functioned every day. Went to work, made critical decisions which affected many people, went out periodically with friends and tried to accept their needs for me to "get on with my life as Kelly would want" and only found true understanding in other parents who had lost a child. The first few months I still heard Kelly cry out to me at night and would run into her room. Sometimes I felt her come to me, when I would be crying, assuring me she was really okay and that she loved me so much. Those times were very real. The first time even her bedside companion/cat Cuddles suddenly looked alert and went running into Kelly's room crying and looking around.
I had lost my Dad two years before Kelly, my Mom 3 months before Kelly and then my only child. My soul was tired. I found myself daydreaming and unable to concentrate ...frequently. I cried to myself in solitude....slowly I got on with life without Kelly. Since I took early retirement last November, on the anniversary of Kelly's death, I have slowly come back to being the person I was before Kelly needed constant caregiving. Sometimes I feel very guilty, feeling "normal" again because I know this freedom has come at a great loss. To keep my sanity, I constantly reassure myself that Kelly IS at peace and we WILL be together again one day. My life is now in "God's hands" and until such time as it is my time, to try to find joy in each day. To always look for the good and beautiful that IS surrounding us, when we are not too blind to see them.
I don't know if what I've been through offers you any consolation. It is, unfortunately, a very great pain that you are facing. No one, not even others who have gone through this pain, will feel the same as you will. The only advice I can offer is to continue loving and caring for your son as you do. Then when the time comes you will know that you gave him everything you were capable of doing....and that he loves/loved you for doing so. You will feel regrets over something you thought you could or should have done, I think that's natural. At first we think that we were at fault, in some small sense, in why our loved one had to die at that second. The only salvation there is knowing, in your heart, you gave everything you had to give.