Grief

[SewBears]

I found this to be very helpful today. I didn’t know that “anticipatory grief” is actually a thing. Until now...

whatsyourgrief.com/anticipa...

[Hidden]

Thank you so much... this is a very informative article. For the past 25 years (since my son suffered head injuries - motorcycle crash) I have known this has been a major part of my life... but never had a word to explain it. I actually emailed to myself to read again when l feel the need... Sending Hugs... Granni B

[AliBee1]

Thank you. That explains it very well so thanks for sharing.

I wrote the attached about the same sort of thing. Love AliBee x

Dementia and Bereavement

:

Dementia changes a life which becomes an ordeal.

Bereavement leaves a wound which cannot be healed.

But Love leaves a memory which no one can steal.

Dementia results in life change that becomes surreal.

Bereavement results in a hole which cannot be sealed.

But Love results in a memory which no one can steal.

Dementia steals your loved one and there is no repeal.

Bereavement takes a loved one and you have no appeal.

But Love holds your memories which no one can steal.

[SewBears in reply to AliBee1]

Beautifully said AliBee! Thank you

[Hidden]

It’s like waiting for the other shoe to drop. I know it will, don’t know when. Today I am thinking sooner then later. I’ve been here before only to find I was wrong. I swing back and forth daily. It is exhausting.

[SewBears in reply to Hidden]

So true! Some days I can deal, some days not so much. “Waiting for the shoe to drop” and having the rug pulled out from under me are two phrases I find myself repeating a lot.

I quit my job last summer to spend more time with my husband thinking it was the end. I was wrong about it being the end (thank goodness!). Since I’ve been home with him he has improved. Thanks to some medication changes and taking him to Swallow therapy, OT and PT regularly. He’s doing much better, for now anyway. I try not to get my hopes up because everyday is different. Keeps me on my toes.

Keep on keeping on.

Xoxo from I SewBears

[raincitygirl in reply to Hidden]

❤️

[HilsandR]

Hi SewBears, oh yes, how well I know anticipatory grief. I grieved for the 4 years following R's diagnosis until his death October '18 and for the 4 years prior to diagnosis, when I knew I was losing the man I once knew to 'something' that went undiagnosed for that period. You would think during that 8 years I would be prepared for the inevitable but when the day came I was shocked to the core, almost as if I had no idea it was coming at all!

Anticipatory grief for me has not lessened the post death grief, there are good days, really good but the bad days are awful. I think I have referred to it on this site before as getting a 'double whammy' of grief, so whilst they are still with us and again when they have gone. The only difference now is that I don't have the anxiety, fear and sheer exhaustion that accompanied the anticipatory grief. I am functioning, albeit getting sideswiped out of the blue, and I do look forward to happy times ahead. Life has to go on and I made a promise to R before he died that I would be OK and I like to think that gave him some peace.

Today I spent a really happy day with my children and little granddaughter, there was a lot of laughter and stories remembering R, so maybe the anticipatory grief has, in some ways, eased the way for me. Who knows? Today was good, tomorrow - well - that might depend on which way the wind is blowing. Best wishes as you and your hubby soldier on. Hils.x

[raincitygirl in reply to HilsandR]

You explain it so well Hils...😏

Anne G.

[HilsandR in reply to raincitygirl]

Sometimes I sit here, Anne, wondering how on earth I go through those years, though my deep love for R undoubtedly gave me strength. I think about what PSP did to R and how it did its best to take me down as well and although I know the road of grief will be long and winding I am determined to get through cos I won't let the legacy of PSP claim me as well. Hopefully that won't be famous last words but I'm giving it my best shot. Hope you are doing ok. Hils. X

[SewBears in reply to HilsandR]

I hope that you are both doing okay. We put one foot in front of the other and somehow we keep on going. Thank you for helping me to get on with it. Whatever that may be.

❤️

[SewBears in reply to HilsandR]

My Dearest Hils,

Sometimes I wonder if I have a heart of stone because often I cannot cry. Even when I want to. Your reply is heartfelt and you brought a “good” set of tears to my eyes, for which I am grateful.

Soldier on, I love that! Honestly, I’m certain I have been grieving since 2005, after hubby’s neck injury and long before CBD entered the picture.

I can see how you would be shocked to the core when R passed away. Even though we anticipate it for years. I fear the same will happen to me, the shock and devastation. I’m not ready.

I’m so glad that you are with your children and granddaughter. We do the best we can with the cards we are dealt. I hope the wind is blowing the right direction for you as you too soldier on.

Thank you for responding. I needed to hear it ❤️

[Cuttercat in reply to HilsandR]

Yes. Me too. Good and bad days. Anticipatory grief is just a word. I don’t believe it. It’s hardest when they are gone

Thanks for posting such a good example

Cuttercat

[raincitygirl]

Thank you for this SewBears. Even tho I'm now in "post" grief it was interesting to read about what I had intuited was anticipatory grief. It certainly explains the hyper-alertness, panic, exhaustion, fear and isolation! The more we read and understand what we're going through, the better it is for us....Even after the fact!!

Anne G.

[SewBears in reply to raincitygirl]

I don’t know why but it’s nice to put a name to it. Wow, right?

[HilsandR]

Let me reassure you SewBears that you most certainly do not have a heart of stone. On the contrary, you have a heart of gold caring for your lovely man against the odds in a situation that would challenge the bravest and strongest and indeed the most hard hearted. You know, sometimes I was just too darned tired to cry, other times my heart wanted to break but because R was still with me it was often easier to go into denial mode and go down the 'everything will be OK' route. Also, I was terrified that if I started to cry I might not stop. Of course there were tears along the way, plenty of them but in the main, there just wasn't time for them - I think you will understand what I am saying. Don't question yourself if tears don't come readily. Tears didn't come for me at R's funeral but I've done my fair share of sobbing since. You are right, we have to play with the cards we are dealt and we do it as best we can, if not better! Hilsx

[AnneandChris]

Dear sewbears

I think I grieve every day as I see my beloved slip slowly away from me. I know he is still in there, but he is a shadow of who he was. A shell which is slowly deteriorating and which will inevitably disintegrate.

To a certain extent this also happened with my Mother who died in February last year having been put on end of life the previous September. She hung on for five months, barely existing but still determined not to let go. I grieved for her daily during that time.

Life is strange and how we cope even stranger

Hugs

Anne

[SewBears in reply to AnneandChris]

Dear Anne,

I’m so sorry to hear about your mom. I guess it’s nice in a way to be able to say our goodbyes but 5 months of watching her suffer must have been so heart wrenching! And then after she’s gone there’s an empty hole to fill. At least this is the information that I’m gathering from reading others experiences.

I was hoping that anticipatory grief would help ease the burden a bit when hubby’s time comes, but now I’m not certain of anything. We will take it one day at a time and not worry about tomorrow. HilsandR’s post mentions a feeling of “everything will be okay” mode; that’s where I think I am right now and that’s okay. It just doesn’t do any good to worry about things we have no control over. I try to take a short video everyday for memories down the road.

Xoxo ❤️SewBears

[Sam_S]

Thank you so much for sharing your story and the article on anticipatory grief.

Sam

[dollydott]

Thank you for sharing SewBears

Love Lynda 💜

[Gadgetgeek]

I wish I had read this before G died in November 2017. My counsellor told me I was experiencing anticipatory grief but I didn’t understand what it was. Since she died I foolishly thought I would feel better, because I thought I had already been through the grieving process. How wrong I have been!

It’s hard to explain how I feel now. Very sad for one thing, alone but not lonely. I function and do the daily things. I keep busy so I don’t have too much time in my own my mind to think too much, but G is always on my mind.

Like you, I don’t “do” crying. I have a a few (very few) tears with the counsellor, but mostly keep everything bottled up inside - bad I know, but it’s the Stiff Upper Lip that we British seem to suffer from.

I felt the anger before she died as I was fighting every agency to get what G was entitled to, I haven’t felt anger since she died, just a disappointment that there was too much to fight for when I should have been spending the last precious months having quality time.

It’s been a learning curve .......

[JantheNana in reply to Gadgetgeek]

I appreciate your putting into words the disappointment for not having the quality time with your loved one. Whether from having to spend time fighting for their rights, or just having to spend so much time taking of everyday needs,I feel robbed of having the time to spend just enjoying his company.He is gone now and I will forever regret that!❤️

[Cuttercat in reply to JantheNana]

Me too!

Cuttercat

[SewBears in reply to Cuttercat]

Regrets? It’s impossible to be in two places at once.

I’m not sure how to define “quality time” when communication is minimal, if at all. There are times when I don’t want to be in the same room with my love because he is distant with his stone face and blank stares and grunts. Oh, I know he’s in there “sometimes”, but I don’t always have the patience that it takes to find him. If that make sense? Will I come to regret not spending more time with him? Probably, I don’t know. He knows that I’m doing everything that I can for him and for that I am grateful. I just have limits and at the end of the day I’ve sometimes reached mine. Could I be doing more for him? Probably, I don’t know what that would be though. It’s hard to not second guess myself and I’m not sure that I should be “second guessing myself”?

Regrets? I really hope that I will be able to forgive myself for the struggles that I face during this horrific time. I want to remember all of the good times that we shared, before, during and even after CBD. 😢 Please forgive yourself if you have regrets and I will try to do the same. A learning curve indeed!

Xoxo from I SewBears ❤️

[Cuttercat]

You said it exactly. You are very much aware and that is a gift. I felt the same way too.

Please take care. Thank you!

Cuttercat

[Boobe]

Thanks. I saw me.

[bazooka111]

A year later and this post has hit home for me - Thank you all for being so willing to share.