Anticipatory Grief

[Staff_MND]

We’ve seen this theme touched on by some people on this forum so thought we would create a specific post on anticipatory grief and hope that this will encourage people to share their experiences.

Anticipatory grief happens when feelings of loss occur before a death, but this is often not acknowledged, talked about or even understood. Being given a diagnosis of MND can trigger anticipatory grief in both the person with MND and their family and friends. MND can bring a range of losses during the progression of the disease as well as ultimately death and so anticipatory grief can be a significant part of being affected by MND.

A wide range of emotions can be felt including anger, love, depression, anxiety, guilt, mourning, fear, and loneliness. Anticipatory grief can be confusing, and it doesn’t mean you have given up on yourself or your loved one but it does allow you to prepare for losses and death and provides opportunities to spend meaningful time with loved ones.

Here are some links we think might help:

https://www.thegoodgrieftrust.org/ne...vement-advice/

https://www.hrrv.org/blog/anticipato...efore-a-death/

https://samaritannj.org/hospice-blog...ipatory-grief/

https://www.bacp.co.uk/bacp-journals...-young-people/

https://www.mndassociation.org/suppo...ement-support/

[Banned]

Carpe diem.

[Suefromwakey]

I myself have experienced this, many times I have said I am grieving for a husband that's not dead, in fact when we were first told to expect a diagnosis of MND (still not given) he could be sat at the side of me while such thoughts were in my head. I now suffer true grief as my son died 20 weeks ago and that is all consuming but I think I also suffer guilt as my thoughts are now with my son rather than my husband.

[denise]

I think this is something we have all touched on but it takes so many forms.
fear of losing someone. Fear of being alone. Fear of death.
some things creep into our thoughts when we least expect it to. Something might just trigger an emotion, totally unconnected, but an outpouring of grief, takes us by surprise. Perhaps it is preparation.
when my brother died I didn't cry. In a way it was a relief because he was going through hell. When I returned home from an extended stay with my mother my husband thought he would surprise me with a new kitchen. I think I should have been pleased but I went ballistic. I don't know how he survived. All my grief came out in the loss of my old kitchen.
I don't know how it all works and I'm not sure if we can totally prepare for things.
I suppose we should try and spend meaningful time with everyone. Who knows what is lurking around the corner for any of us. Yes seize the day. (Actually I translated it to dead fish 😃)
xxx

[shrew]

I cried the day Mick was diagnosed, and every day until he died, and everyday since. I felt our life was over when he was diagnosed, he struggled so much, we couldnt really do the things that we used to. I cry from loneliness now, I just miss him so much

[Puddy]

Oh Shrew, I could have written that myself. I think of how Nigel used to be and still can't believe he's gone. I lost him in August, just over a year from being diagnosed. xx

[shrew]

Puddy, so sad for you. we got just under a year (11 n half months) so cruel. Together since I was 16. I feel lost

[Jeanette Pearce]

Bless all of those who suffer and help us try to remember the good times - make our tears “happy tears”

[Jane northwales]

I feel this loss although I sit next to my husband, we have had seven years since diagnosis but the ongoing grief as I loose another part of him is destroying me. My husband was born to save the world, such a gentle caring man, now he is dependent on the world to save him and it isn’t happening. I wish the same diligence could have been given to cure MND as it has for more Hugh profile illnesses.
love and strength to you all xx

[Jeanette Pearce]

I agree with you. I send you strength and energy to get you through xx Best Wishes xx

[shrew]

I can relate to you Jane, I felt the same. I check in on here regular. You dont feel part of anything anymore when you are alone. I lost my Parents, I am no longer a Daugther, I lost Mick, I am no longer a Wife. Everywhere you go its couples. I wish you all strength as you face this terrible illness. My prayer is that one day there will be a cure.

[Bowler]

shrew I feel a bit the same. I lost Ann to this evil thing ( my wife ) on 23rd October. I spent 5 years caring for Ann 24/7 365. Then at 4.30 am on that morning it suddenly all stopped. Since then I have lost my purpose in life. For the preceding year we never went further than the garden. Once lockdown kicked in we didn’t see anyone. Now people say that the current lockdown must be easy for me because I spent a year in a lockdown situation caring for Ann. It’s absolutely not the same. The silence is deafening.
I tell myself things will get easier but until if and when that happens the good people on this forum are my life line.

[shrew]

so sad for you Bowler. I know what you mean by your purpose. I find it so hard when I see couples together. I feel cheated out of our future. I am lucky, I have 2 daughters, a grandson, son in law, siblings, a job that I love. I try to stay positive but life will never ever be the same again

[richard]

Bowler I know it’s the wrong forum but I just want to give you a big hug. Man to man, often needed but seldom received.

Richard

[Bowler]

richard that means so much. Thank you