Gransnet forums


Coping with terminally ill grandchild

(50 Posts)
nanacindi Tue 05-Aug-14 01:20:31

Good evening all,
I am brand new to the website and am 4 weeks into the horrible world of having a grandchild diagnosed with an incurable and rare genetic disease. She is only 16 months old. The most precious baby to me. I am fraught with despair over losing her and also trying to help my daughter cope. I know this is a terrible subject, and wish I was on any other forum than this. But I need help and I need someone who has been in this position who can relate.

Thank you in advance to anyone who can offer advice.

ffinnochio Tue 05-Aug-14 06:47:18

Good morning, nanacindi.

I read your post with sadness. I have no experience of this, but send you flowers.

NfkDumpling Tue 05-Aug-14 06:55:54

Like ffin I can only send flowers and welcome you to GN. This is one place where you don't have to put on a brave face.

Aka Tue 05-Aug-14 07:15:40

nanacindi I've PMd you (((hugs)))

kittylester Tue 05-Aug-14 07:21:29

Welcome nanacindi! I too read your post with sadness! It must be one of the worst things a grandparent can experience.

I have no experience of this situation either but please keep talking to us flowers

whenim64 Tue 05-Aug-14 07:25:02

nanacindi I'm so sorry to learn about your beloved grandaughter's illness. Having seen the effect of losing a child this way - my auntie and uncle - I know how important the support of close family and friends can be as you go through this distressing experience. Best wishes flowers

Lilygran Tue 05-Aug-14 07:30:01

There will surely be someone on Gransnet who will be able to help. All I can do is say how sorry I am. Love and prayers, nanacindi

janeainsworth Tue 05-Aug-14 07:33:16

nanacindi I am so sorry. I think in this situation that the sympathy and support tends to be focused on the parents, but you as the grandmother have to cope with not only your own grief, but seeing your own child grieve too.
You don't say how ill your little granddaughter is at the present but I hope you are still able to enjoy some happy times with her, in the midst of your sorrow flowers

Cretin Tue 05-Aug-14 07:55:42


I too am grandmother to a terminally ill grandchild, it's been six long years of not knowing what is around the corner ... The doctors at first said she would not survive infancy then as each winter comes prognosis is bad and she somehow has managed to get to six ... Each year we thank god ( and I wasn't his friend for a very long time ) she is still with us ... But we know lurking around is the grim reaper ... Waiting to take our brave , brave girl away from us . This is something we can't control and we as mothers have always made things better for our children , we have to simply accept ....

I liken it to the process of grief having a bereavement having a child whos life is limited and as grandparent you go through the disbelief that it's happening , and will get better in time whilst knowing in your heart it won't ... Then anger at everyone and everything ... Guilt not being there and stopping the bad things happening to not only your grandchild but your child , finally, finally, you reach after lots of sleepless nights and worrying a state of acceptance is somehow found .you can begin to ' enjoy' things other grandparents take for granted ... Such as a millisecond smile ... Or eyes turning your way when you speak to her ... It truly fills my heart with bittersweet joy ... As for my daughter she has changed sadly from the bubbly person we once knew into a sad , tired, and unpredictable young woman who won't let her daughter out of her sight ... She has gone on to have another child who has brought such happiness into her life , it's made her life harder but definitely she is much happier ....

All I can really say to you is to support her in the best way you can ,by being in the background to be called upon when needed ,and make the best of everyday with your grandchild , make lots of happy memories , and look forwards to acceptance of the situation it will happen one day ...

Much love and hugs ( cos we grannies need them too ) xxx

This was written from my heart so please excuse the rambling nature of it !

hespian Tue 05-Aug-14 07:59:10

I cannot begin to imagine your pain. I hope and pray that you get the support you and your family need, from here and other places. You are in my thoughts. x

MrsPickle Tue 05-Aug-14 08:02:35

And mine x

glassortwo Tue 05-Aug-14 08:32:30

nanacindi I am unable to offer any advice but send you a {{{hug}}} from one Grandparent to another flowers welcome to GN.

ninathenana Tue 05-Aug-14 08:39:38

I read your post with great sadness. Thinking of you and your family flowers

ginny Tue 05-Aug-14 08:57:49

I am so sorry to hear this. Luckily we have not been in this situation but have very good friends who have. Like others have said, the grief is double edged, your own and watching your child dealing with the situation too. I really don't have any way of helping but hope it helps you to know that others feel for you.

hummingbird Tue 05-Aug-14 09:00:54

nanacindi and Cretin, there are no words, just kind thoughts from another gran flowers

Nelliemoser Tue 05-Aug-14 09:05:34

cretin that is put very eloquently. Nanacindi ((((hugs))))

dorsetpennt Tue 05-Aug-14 09:26:19

nanacindi like everyone else on this thread, I send you hugs and flowers etc. Adoring my two little GDs as I do, I can only imagine what you and your family are going through. This is a lovely website, you'll find lots of other grandparents who are very supportive. So stick with us you are most welcome. flowers

Lona Tue 05-Aug-14 09:41:38

nanacindi and cretin I wish you both the strength to support your family and yourselves ((hugs))

henetha Tue 05-Aug-14 09:46:20

I can't imagine how you cope with the heartbreak of this, and wish I could wave a magic wand. Life is so hard at times, and I send you my very best wishes and sympathy.

Marmight Tue 05-Aug-14 10:01:14

I send flowers to you both. May you and your families have the strength and fortitude to bear this horrible, sad situation and for what is to come in the future.

merlotgran Tue 05-Aug-14 10:06:06

I can't add anything to what has already been said sending you my best wishes and sympathy.

Grannyknot Tue 05-Aug-14 10:09:26

nanacindi big hug.

Thank you for choosing to come to this welcoming and supportive forum, there are some lovely people on here. I can't say anything to ease your pain, so I feel helpless.

18 years ago we lost our niece at age 2 years and 8 months, who struggled with ill health since birth and who spent a lot of time in my house, so I got to know her very well. Whilst the pain of remembering her is less piercing with each passing year, I still ache when I think of her. But often it is 'a smile with a tear', when I think of her amusing little ways.

flowers flowers flowers

Crow Tue 05-Aug-14 10:49:55

I send flowers to you both and I can only repeat what Marmight has said.

shysal Tue 05-Aug-14 11:47:25

I am in tears reading this thread. It seems that parents and grandparents in your situation find the necessary strength from somewhere, because you have to! Do keep posting, there are some wonderful caring people on here. flowers (((hugs)))

newist Tue 05-Aug-14 12:36:13

I too am in tears, I pray for both the posters who have told us of their very sad situation. I don't know what else to say that hasn't already been said. flowers