my son is terminally ill

[karen]

My son who is now 19 years old was diagnosed with kidney failure 2 years ago, David was born prematurely and was diagnosed with a very rare chromeasome disorder at a very young age. David has had his share of problems all of his life because of this having severe learning disabilities and physical disabilities,because of this david cannot dialise or undergo kidney transplant. Davids renal failure is now at stage 5 and only has a few months to Live. I have decided that i want to loOk after my son at home with the help of district nurses and hospice help. I am told from my councillor that i  suffering from anticipatory grief , i hve two other children to care for and aam finding it hard to function on a normal level somedays not getting dressed or even oPening the blinds i dont sleep properly and suffer panic attacks i feel like im in limbo not able to seE any future or know if i will ever be happy again.

[kayc]

Welcome, Karen.  I am so sorry for all David has been through, and you, his family, with him.  Anticipatory grief is very real and every bit as hard to go through as when you lose someone to death...it's like dying a slow death, a piece at a time.  It is LIVING IN DEATH.  Year ago my MIL died a slow agonizing death from cancer, over a period of three years, she was non-ambulatory and bedridden during this time.  I was extremely close to my MIL, she was the mother I'd always wanted, and my best friend.  I didn't see how I could live without her, or how the world could even go on spinning with her gone.  We lived in death, day after day, my husband, myself, the siblings, and our babies.  People can't begin to know how hard it is.  I was her caregiver, running two households, taking care of her and my FIL, as well as my own family, and never had respite from my responsibilities to go to a support group.  Between changing bedding, cleaning the homes, cooking for everyone, doing laundry, paying bills, administering medicine, while raising my own babies, I was overwhelmed.  Always was the underlying thought that I was losing her...I didn't know when, but I knew it was coming.  The hardest part was watching her suffer, I couldn't bear that.

My best advice was if anyone offers help, accept it.  And try to live in the present.  Try not to focus on death, but on what you have TODAY.  That has helped me so much.

I hope you'll continue to come here, it does help to express yourself.  We didn't have computers back then, I would have welcomed that outlet.

[LadyCarrie]

Dear Karen,

I am so, so sorry.  I cannot say that I know how you feel, but "somewhat" perhaps, because I live with anticipatory grief also.  Kay is right, it is living with death.  My heart goes out to you.  We here on the forum will be here with and for you.   You won't have to go through this alone.   Losing a child seems beyond what a parent can endure.   

Carrie

 

[MartyT]

Karen, my dear, my heart hurts for you as I read your story. I simply cannot imagine the sorrow you must be feeling and the courage it must take for you even to get out of bed in the morning and face whatever the day will bring. Please know that we are here for you, and if you want us to do so, we will walk with you in the days and weeks ahead, wherever your path may lead.

I invite you to read these articles, in hopes that they will offer you some useful information:

Anticipatory Grief and Mourning

Anticipatory Grief and Mourning: Suggested Resources