PSP Association
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My Darling Man is Gone

My Darling Man is Gone

Dear Community: I still cannot believe this: I am in shock and heartbreak: My beautiful, intelligent, independent, industrious, hilarious man - my Garth - died Wednesday night.

I had thought we were approximately "half way through". He had become much weaker and slower this spring, but I didn't realize he was so close to his end. He had a massive seizure late Wednesday night, and although I did chest compressions until the paramedics came, I'm pretty certain he was dead before they arrived.

I realize we were blessed with this fast death - at home - and I am grateful for that. But now I know what the widows and widowers of our group mean when they say that even in the most miserable moments, looking after our loved ones is "Life" and the terrible emptiness of death is no better.

I want to stay on, and I thank this community from the bottom of my heart: you kept me sane when I had just about lost it. Your advice, support and caring made me a better carer and reached my husband, giving him a better life to the end. Bless you all.

XXX Anne G.

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Oh Anne! I can't believe it either! No warning, no signs! How absolutely devastating for you! You will be in limbo!

I am so sorry your beautiful Garth has gone.

You were together, at home, and you were there for him when it mattered!

You have both been saved from the later demoralising and debilitating stages. I think he would be pleased he was saved from that, and you from watching him change.

It just goes to show we can none of us pick 'Our Time', or second guess the Beast that is PSP/CBD.

My thoughts and love are with you at this terrible time. I know you will be surrounded in an aura of love in the next 24 hours as news gets through.

My arms are outstretched to hug you, and join with the rest of this community who know what it is like to lose their loved one.

Stay strong in His Love! May He fill you with Peace. Amen

((BIG HUG))

Love

Jen XXX

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Thank you so much Jen - your post is lovely and fills me with warmth. In fact, it reminds me of something more I wanted to say to the group to thank them...I will try to edit.

I remember you were one of the very first to respond to me when I first posted: you've always been special to me for that :-)

Hugs

Anne G.

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That also has something to do with the time difference I think! It is about 5.00pm here on a dreary wet day. News of floods and slips on Coromandel again, and they have just got the roads fixed again.

Incredibly, time marches on!

Take care!

Jen xxx

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Dear Anne,

How very shocking to read your news. I am so sorry. Although a newbie, I have learnt so much from your compassion and insight, and it is so evident how very committed you were to Garth. You fought so hard for him.

May the courage that has grown within you continue now as you adjust. May Garth's strength be an inspiration to you and may you be surrounded by love and honour in the coming days and years.

Don't desert us!

Much love

Juliet xx

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Thank you so much Juliet :-) I am staying on. This feels like family now. XX AG

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Dear Anne,

I'm so sorry for your loss and reading this makes me sad.

Your compassion, appetite for life and embracing what you and Garth shared, despite and possibly through adversity, is an example of warmth and true connection.

The commitment to each other, the desire to share a journey and treasure each moment you have, and now have had, is an encouragement to others. It certainly is for me.

When I came here, only very recently, you were one of the first people to reach out. I can't thank you enough.

Hopefully, you'll be surrounded by those closest to you and will find some relief in those beautiful memories.

Best wishes,

Bo

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Thank you Bo; I will follow your path with interest and care. The support from this group is so great for all of us. Hugs XX AG

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Dear Anne

So very sorry for your loss. The photo is lovely so natural - I can feel Garth”s charisma.

Thank you for sharing your experience - gave me a little jolt, most people describe a protracted death of their loved ones - Garth’s being so sudden adds an extra burden. It may sound cold and hard ( don’t mean too) but maybe he was spared the further decline of PSP, the further indignities.

Sending love and hugs to you at this painful time, be gentle on yourself as you adapt to this new and very different life

Love Tippy

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Thank you Tippy and you are so right! It is not cold - that swift death was a mercy, a gift from God. I am so relieved he didn't have to experience the worst of the end of the disease.

That helps me now. Hugs to you XX AG

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Oh darling Anne, I am so so sorry to wake up and read that your dear Garth has gone, what a terrible shock for you! My heart goes out to you my darling x 💕

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Thanks dear Amanda :-) I feel the love. xx AG

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Dear Anne, I'm so sorry to hear this news. Your posts and replies to those going through difficult times have always been so supportive and beautifully phrased. Loosing my husband day by day and inch by inch was hard to bear but Garth's sudden death must be such a shock for you.

With love, Vicki

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Vicki, I believe you had the much harder burden to bear. Thank you for the kindness. XX AG

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I'm really sorry to hear this. May the good Lord give you strength to go forward. Wish you all goodness.

With love

Sangeetha

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Oh my goodness Anne

I'm so sorry.

What a shock, so sudden.

It must have been horrible.

I'm struggling for words, sorry.

My heart goes out to you.

Warmly

Kevin

xx

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Dear Kevin, I can honestly say I thought it would be me giving you condolences first. It's still unreal. Even typing on this site is a "normal" activity and something I did while Garth was here, so feels like the "old life"...I guess I'm moving back and forth between denial and acceptance of the new reality.

PS: I'm staying on - I couldn't bear to miss you and all of this group. XXX Anne

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Hi Anne

I sat for a full hour this morning after reading your post. I was simply stunned. So many thoughts ran through my head. Garth looks so confident and warm in that 'Chowk'. A man of substance within himself.

Then the suddenness. Yes, I too expected Liz to be the one to go first.

My thoughts are still all over the place, sorry. You don't need me to tell you about the denial, disbelief and anger stages and the rest. Trust yourself, your brain knows what it is doing. Trust the love he held for you and you for him. Passing does not extinguish that.

Hold him in your heart for ever Anne and he will be with you.

As others have said, he has been spared much suffering and you were with him at his leaving.

With much sadness for you both and a firm belief in spirits clinging together.

Hugs

Kevin

xxx

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Your words are wise and lovely, Kevin :-) They mean a lot.

XXX

Anne

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Oh, Anne, I am so very sorry.. Shocked and Saddened. Prayers and hugs until I have recovered a little.

Ann xxxxx

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Dear Anne,

I am so sorry that he has gone but with that image and his love in your heart he will be with you forever...............

XXX

Patrick.

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Thanks dear Patrick :-) One of the beautiful images in my mind that sustains me, is that of the flying dove in the Russian opera singer video you posted. So wonderful.....AG

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I think the hawk at the end could represent the disease that is PSP and CBD

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Well...it was a pretty mean looking hawk...But it didn't "get" the dove, did it? I always thought the beautiful dove flew free...! Did it escape the claws of the hawk? That would be SUCH a great interpretation for a death by PSP/CBD!!!

;-)

AG

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I am sure the dove escaped it's claws..................

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Oh Anne I am so sorry, couldn’t believe it when i read your post, heartbreaking, but at least your were there with your amazing gorgeous husband, may he rest in peace away from this horrible illness. Sending you a big hug. Yvonne xxxxx

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I was blessed to be home and with him, and have time alone with him once the big machine of paramedics, police, coroner etc had withdrawn. That was a very deeply satisfying time.

Thank you for your caring Yvonne XXX AG

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Anne I am deeply sorry and sad to read your post. You weren't prepared but you know I don't think any of us are. We might like to think we are but the reality is this huge void in our lives comes along when we least expect it. Garth looked so nice in that photo. I am sure you loved him very much.

You have been a wonderful carer to him. I am sure he realised that too.

I am so glad you were with him at the end. It would have been so easy for you not to have there. Just a much needed break and he would have been gone.

He wouldn't have known he was going to die when he did, so I am very glad that he went without suffering further. However I know you must be shocked. Please stay with us as you have been so kind to everyone. Perhaps we can help you through this very sad time.

My condolences to you and family Anne. You will come through this one day but you will never forget Garth.

A great big hug to you Anne.

Marie x

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Thank you for the kind words Marie. You are so right: I was blessed to be here with him and see him out the door, so to speak. It was frightening but ultimately I got to be with him through every moment of it. That is giving me comfort.

I always appreciate your posts and insights Marie: You have stayed on and are such a great help to all of us. I will stay on too, as I need your experience in a whole new way now :-)

Love and Hugs XX Anne

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Dear Anne, like the rest, I am saddened and shocked by the sudden death of Garth. Sorry, but words are failing me. All I can say is, May Garth rest in peace, finally free from this evil disease.

I know you will be in deep shock for sometime, treasure that numbness, it will help get you through this terrible time.

We are still here for you to rant and rave, a big shoulder to cry on, most of all, understand what you are feeling.

Sending big hug and much love

Lots of love

Anne

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Anne; I am most definitely staying with this community. You all got me through the care taking part, out of the darkness of depression and into the light of "yes it's a damn difficult job and we're here to help you get it done!" The community as an entity is an amazing thing!

To mix a bunch of metaphors: In a funny way it feels like a graduation: I've "launched" my bird out of the nest, seen him through his struggle and now he is flying free...and I am consequently graduated into the group of widows and widowers who have a new task and struggle to master through.

Love you all XX Anne

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Oh, Anne. Such a shock. I am so very sorry.

You have been such an active contributor and I'm sure you will stay with us so we can support you.

Chris went quite quickly for PSP but it was a shock. The panic you describe is devastating. There is no " good " way to go but for him it was quick and I hope will be some comfort.

Big, big hug, Anne.

love from Jean xx

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Thank you Jean - Yes, although frightening it was ultimately a blessedly swift and easy release. I only wish other members could be spared the gruelling drawn out death.

I will stay here, with gratitude.

XXX AG

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Anne,

My heart breaks for you. You have been such an encourager on this forum especially to me, which is where I find the most benefit from this site. I wish I could give you words of comfort, but I realize that there are none. I am 4 weeks since my beloved passed and know how hard it is. My only solace is that she is no longer suffering from the cruel effects of this disease, but I selfishly want to be caring for her.

Please know that my thoughts and prayers are with you, for strength, comfort, and peace in this difficult time.

Bobby

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Your words are perfect Bobby, and I feel exactly the way you do :-)

Thank you for the support XX AG

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Anne, I too am shocked to read your sad news. My heartfelt sympathies to you and all of Garth’s loved ones.

xoDorie

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Thank you Dorie. XX AG

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Sorry you have lost your husband my thoughts are with you, and your family. ...Brenda xxx

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This must be why I'm feeling OK in the midst of heartbreak Brenda...I feel very much all the support of our wonderful community :-)

A.G.

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O Anne I have only just woken up as I am on a respite break. I overslept and missed church. I will reserve my prayers for you and your loved ones.

Ken.

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That is a lovely thought Ken - Thank you kindly :-)

anne

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I am so sorry to hear of your husband's passing. Take comfort in you knowing you did everything you could to help ease his journey through this terrible disease.

Ron

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That truly is a help at this time Ron - I have no regrets.

Thank you AG

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So sorry to hear. On one hand a relief it is “over” on the other the grief of loss. It is a shock. It takes a lot of time to get use to the new world you now live in. Please stay active on the site. We are all here for you.

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Yes J, you've got it: relief for him, relief for me, grief, heartbreak all mixed up together...But relief for him is huge: it is the balm that we have that widows of cardiac victims or victims of other tragic losses don't have. Thank you.

XX AG

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Dear Anne, So sorry for your loss, I know Garth is at peace and no longer having to suffer from this terrible disease. It is the only thing that keeps me going. We all miss our loved one, but knowing they are not suffering anymore helps. Take good care of yourself and get some much needed rest.

Hugs, Donna

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It is the biggest thing, Donna, for sure. It hasn't been long for you - how are you doing? Yes, I had 2 nights of good sleep. I'm so grateful though what a price to pay! Hugs to you...XX Anne

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Dearest Anne

I am so so sorry to read your sad news.

I like everyone else am in shock that your dear Garth has passed so suddenly.

I send you love and will be thinking of you xx

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Thank you Dolly; It sure isn't the typical death we read about on this site! That was part of the "unreality" I've been experiencing. Thank you for the love, and love back to you :-) AG

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I am so very sorry to hear such sad news.

My thoughts are with you.

Sending big hugs ❤️

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Thank you Ellie. XX AG

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I almost could not believe my eyes when I read your post . What an awful shock. Your commitment to Garth has shown in your wonderful and thoughtful posts and your continued involvement in this sight . I am truly sorry.

💜

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I know Karen, it's just unreal right? It's not what anyone reading the experiences on this site would expect! Please give your hubby an extra hug for me tonight: so great to have a living, breathing hubby - even with all the anxiety and difficulty of their care. XXX AG

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Oh Anne, what a shock. My heart breaks for you. I always figured we were about the same time line disease wise. One just never knows. Perhaps the silver lining is bypassing a truely horrible drawn out ending.

Please know how much you are loved. Keeping you in my thoughts and prayers.

❤Love, Alice

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Thank you Alice, I feel the same. I keep feeling this unreality - that "but he was just 60% through - how can he be finished??" In fact, I'll never know for sure if there was some other underlying neurological fault other than the disease. Neither the coroner nor my doctor wanted an autopsy and I was too stunned to fight it (I actually did think about fighting for it, then thought oh what the heck, do I really need more technical info right now?)

I am definitely staying on and will follow your path with interest :-)

Hugs XX AG

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My condolences, Anne. Your posts and comments are always so thoughtful and compassionate and informative. I am glad you have decided to stay connected with this community.

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Oh Anne!!!!! I couldn't believe it when I saw the title of your post!!!!! I think my husband may be at the same stage as was your Garth. I am so sorry for your loss and I hope you can take some comfort in knowing that he does not now have to live years with this debilitating disease. My thoughts and prayers are with you and your family. Big Hugs , Take care of yourself and hang in there lovely lady

xxxxxxxxxxx

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Thank you daffodil: our husbands may have indeed been at the same stage: Garth may have had a neurological compromise over and above the disease. At one point during the early testing stage, several docs said there "may" have been some signs of a silent stroke but it just wasn't clear enough to call. I never paid attention to that later, but now I wonder if he wasn't already weakened before the disease...

Either way, I'm still here and will read your posts with interest :-) Thanks for the kind words. XX AG

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Dear Anne, I havent posted much on this site recently, but I read many of the posts on this website, almost daily. Why? Because they speak to my heart and it is comforting to know that other people are going through the strange, tormenting journey of parkinson plus syndromes. For some reason I read almost all of your posts and could connect with your journey. I, like many others today, were in shock when I read your post about your husband's passing. I can't imagine thinking that you had more time, only to find that you didnt. I'm so sorry for the shock and suddenness of his death. Many on this site were moved, and helped by your postings. And even today, your post causes me to pause and realize that every day with our loved one is a gift, and not to take things for granted. I know that you are traumatized right now, but somehow I hope that you will realize that on some level, you were blessed, as Garth's sufferings were cut short. We are all with you in spirit as you heal from this trauma. I hope that you can reflect back on the wonderful memories that you shared and you will find comfort in those. Please continue to post as I believe it will help you heal as you share your feelings in the days/months to come.

Love, Lisa

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Thank you Lisa for your lovely post. I am grateful for Garth's quick passing and release from the grip of the disease. I know I can get over the shock and will heal from the grief, because I had a wonderful marriage - something many people are never blessed with. Thank you for welcoming me to continue on the site, as I do want to continue being part of the community. It has helped me so immensely and it was good to hear that you felt helped by my posts. That is very cheering :-)

Hugs to you in your path - I will think of you. XXX AG

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Oh Anne.... I am so sorry to hear this. My heart is breaking for you. Take care sweetheart. He is no longer suffering and at peace. 💔💔

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Yes Careen and that is the very best part of this whole shocking experience.

Hugs XX AG

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Oh Anne, what a shock. I am so sorry. My thoughts and prayers are with you.

XxxX

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Thank you for the prayers Bev. I appreciate all the support here and truly feel it :-) xx AG

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Dear Anne, Please accept my hearfelt sympathy. Surround yourself with loved ones and accept all the help offered. It is hard to accept not being 'in charge' as that has been your role for so long but step back and let those who love you help you. Life for you has now changed completely and I can't tell you that the change is easy but the days pass and eventually you will realise that you are doing much better than you ever thought possible. There will inevitably be sad times but, like me, you had a husband with a sense of humour and those are the memories that will keep you going. You are in my thoughts and prayers.

Margaret

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I appreciate your wisdom in this matter Margaret. It's funny, I recall thinking Garth and your hubby were on the same timeline - maybe diagnosed at the same time - and that I was shocked when your man died in February. Now here Garth is, gone the same year. It seems they were on the same timeline after all. But I do appreciate you sharing the experience of grief with me. I'm going to need those lessons..... Thank you so much. XXX Anne

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Hi Anne

So sorry to hear your sad news. You must be devasted.

Please take comfort that he is now at peace and not suffering from this horrible cruel disease.

Take time for yourself and dwell on all the happiness and love you both have for each other. He is still with you, he is still part of you.

Thinking of you at this sad time

Brenda

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Thank you Brenda: I am grateful he is at peace - truly.

Thanks for your kind words. XX AG

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Oh Anne so sudden and unexpected, thought I would post this before you, I think I have been in shock all day thinking about your post.

As others have said least it was not too long and drawn out.

Love and hugs to you and your family, hoping you will stay with us through our journeys while your take on your next chapterxxx

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Thank you Helen - I appreciate and feel the hugs and love. I'm grateful to be continued to be welcomed here, as this site is family to me now :-) Thank you for you kindness. XX AG

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Dear Anne G . Like so many here I was shocked to read this. From your posts I reckoned W was at a similar stage as your lovely Gareth and we both had a long journey ahead of us going by others posts here. Now he is at peace but it has come so suddenly for you. I'm so thankful you were with him and very grateful you are staying with us. Praying you will find strength for the days ahead. Take care my friend. Lots of love Nanny857xx

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Thank you Nanny! I know what you mean - sort of like there was a 'cohort' of us who were diagnosed or started symptoms at the same time and were about the "same time in". I definitely thought I had years more with him! But always, the relief that he was given "early release" outweighs everything. I'm so grateful for him.

Chat soon and Hugs XX AG

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I am so sorry. What a terrible shock for you. What a devastating loss.

My heart goes out to you.

Thinking of you.

Erica

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Thank you Erica :-) AG

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I am so sorry for his passing. What a wonderful wife you were. There definitely are blessings to count. Breathe and know that you did all ..and more than you could. He is looking out for you now, from above. I truly believe that.

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Oh Boyce, I so, so, so hope that is true!!

Yes, I have no regrets - I know I did all I could.

I'm going to hold on to that image of him looking out for me from above.

Thank you. AG

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I just read your post and am so sorry to hear of your loss. What a shock to hear dear lady. Words can not express how I feel. Sending love and hugs at this sad time. Nancyxxx

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Thank you Nancy: the hugs and love and words of support from this "family" have been wonderful and so sustaining. Hugs back to you. XX AG

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dear anne

i just read this --i am so sorry :(

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What a beautiful photo.

Sending you much love & strength.

What a traumatic shock for you but a painless quick release for your beloved Garth. Seizures aren't nice to witness (Mum has them since last year).

Along with everyone else couldn't believe it when I saw your post on my emails.

We are all here for you when you need us.

May Garth now be flying high and doesn't have to suffer the pain of more decline.

X

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Dear Spiralsparkle - (my favourite "handle" on this website!) Thank you!

I love the image of a soul flying free - yes, please let that be what is happening!!

I hope the struggle with your mum ends with as much mercy as I received.

Hugs and love to you XX AG

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Oh Anne, I'm shocked! My heart goes out to you. I guess we never know what tomorrow will bring. You are in my prayers.

A huge hug to you,

Pat

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Thank you Pat: Those words are so true...Thanks for the hug :-)

XX AG

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Oh Anne

My heart goes out to you. You have the consolation that the end was sudden and that your darling Garth was spared the debilitating effects of this devastating illness.

Take care of yourself and may God go with you.

Anne

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Thank you Anne - I am so grateful for so much. I appreciate the blessing. It is good to receive right now :-)

XXX AG

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Dear Anne, I always struggle to find the right words for these occasions because I just don't think there are any. May the journey you now find yourself taking be kind to you and the joy that you found in life with Garth be waiting around the corner for you to embrace again when you are ready. HilsandR

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Well I think you're pretty darn good at the words Hils :-) That was lovely, thank you XXX AG

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Dear Anne, I'm so sorry your darling gone . My thoughts are with you and your family. Take care of yourself. Love Jeanette xx

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Thank you Jeanette - I hope things go well and slow and not difficult for you XXX Anne

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Just woken up to read your sad news, what a shock, I am so sorry. At least you had him at home and was able to look after him and he is now free from this devastating disease. You do not have to watch him deteriorate every day. Just look after yourself and take one day at a time. Hugs Pauline x

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Thank you Pauline - Yes, a great comfort that his needs were such that I could care for him at home, and he died at home. That was actually one of my wishes (though not so soon!) Hugs XXX Anne

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Oh I so feel for you. Even when we are prepared it is still a shock. Sincere thoughts and hugs are with you. This site is invaluable, both before and after our loved ones go to a better world. xxxxooo

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Oh so true about this site! It is a life saver! :-) xx AG

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Just opened up your post. My heart goes out to you but at least he is free of this horror. Take care of yourself and let yourself grieve.

Jayne xx plus hugs.

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Dear Jayne, I felt a special kinship with you because of the timeline much like Garth's, and because I admire your courage in participating on this site and contributing when you have enough to deal with as a patient. I have huge respect for you and all CBD, in your case, and PSP patients here.

I hope things are going as well as possible for you. BIG hugs to YOU!! XXXX

Anne

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Thank you , Anne such kind thoughts when you must be feeling the pain of loss. I now have to use a cane to get around and a rollator for any distance. At least I can stilll maintain my dignity regards the toilet but fear I may soon need help washing and showering. Seeing neurologist next week as things have progressed since our return from holiday about 8 weeks ago, too rapidly for my liking!

Hope you soon find some peace, hugs to you too!

Jayne xx

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Dear Anne!

In the time that I have been in this chat, I have learned to appreciate your generosity, collaboration and positive way of analyzing the problems.

I am shocked by your message that I thank you for sharing.

Although as Kevin says "we are all doing the queue" the outcome always surprises and leaves the great void. Within the painful situation the positive part is that the end was fast and in the house that the couple has built and where the family members recognize each other. Garth has stopped suffering. Now we have to manage grief, loneliness and silence. I have seen in others that family and friends are essential and that the common house always keeps absences.

A big hug and courage.

Luis

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Thank you Luis; I appreciate your words and insights. You understand exactly.

I feel the hug :-)

XXX Anne

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Dear Anne, I am so sorry to read of your loss. Your support to me and others has helped us overcome our "bad" times and now I hope we can be of support to you. Take care of yourself and grieve in your own time. Rob

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Thank you Rob - you are indeed giving me great solace and help with your postings. I am so fortunate to be part of this wonderful family.

Take care, XX Anne G.

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I am so sorry Anne. I am pretty new to the community but you made an impression on me straight away with your strength and compassion. Take time & look after yourself, there must be such a tumult of emotions going on, such sadness, relief, it must be exhausting.

My thoughts are with you

Alison

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Dear Anne, it was with much sadness that I read your post this morning that Garth has passed, what a shock for it to be so sudden. If it's any consolation it's what Ben always wanted, he often said he wished he could have a heart attack and leave this world quickly, the alternative of a slow lingering death was not what he wished, but we have no control over that. It's a very very strange feeling being left alone after nursing someone you love, I'm only in the infancy of that process and it's difficult, the memories of Ben with PSP are still in the forefront of my mind and I am hoping the real Ben starts to reappear in my mind very soon.

I'm sending you a big virtual hug and will be thinking of you over the next few days. It's hard Sorting all the 'stuff' that you really don't want to be doing, it doesn't allow you time to try to make sense of all that has gone on.

Lots of love

Kate xxx

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Yes, I'm new in this and go from emotion to emotion. I hope the memories come back for you and me.

CC

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Thank you so much Kate. ..Yes it is a very odd feeling. I'm doing normal things with no problem (things that Garth wasn't with me when they happened, like grocery shopping, helping my brother, etc) but when I come across something of Garth's in the house like his hoodie, his half-drunk bottle of juice, his sunglasses in the car, I crack up! How can that thing still be here, when he isn't? How can I wash his towell in the bathroom when the last time it was touched he was alive? How can.....and on and on!

We have to listen to Heady and Jean and Nanna Bev and Marie..and too many others who tell us how it is and how to get through it. Trust them and do it day by day.

So glad you've stayed on here :-)

XXX Anne

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I am so sorry for your loss...love from Barry and Kim xxx

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Thank you Kim. I appreciate it.

I hope you are feeling connected here? I know you said you felt sort of isolated where you are in Australia, and it seemed your Barry was progressing through PSP rather quickly. How are you now?

XX Anne G.

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I am so, so sorry. Thinking of you - take care. Clare & Neil xxx

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Thank you Clare :-) I will and you stay well too .

Anne G.

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Dear Anne

Sorry to hear of Garth passing, you know he is now in a better place,no more pain .we all as carers know this is such a hard time looking after our love one and when the end comes it's so painful to bear.you must be strong in the coming days and gather love from friends and family.all our love Peter & Kathy

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Thank you Peter. I know your Kathy was either diagosed or symptoms around the same time as my Garth. Truly, you never know when it can happen, but my relief for him is helping hugely.

Hugs XXX Anne G.

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Sincere condolences for your loss. Peace always has a price. His peace from PSP is eternal. You, sadly, pay the price of life without him by your side. Prayers for strength are sent your way. God Bless.

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Perfectly expressed george: It is indeed, and thank you for your prayers. I feel them already, truly,

Anne G.

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Anne although I have not posted for a long time, I read the posts every day. You are one of the people who have inspired and encouraged me to stay strong as a carer for my husband. I was so shocked to read of your loss of Garth but also happy for you that you were with him and he did not have to suffer anymore. You are in my thoughts and prayers. Please take care of yourself now.

Ladyalone

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Thank you kind Lady :-) That is the greatest compliment I could receive.

If there is one thing I'm grateful for ( that I did, as opposed to what God gave us,) it is that I received so much support and enlightenment from this site, I was able to rise above frustration and resentment OFTEN (not always!!) and give love instead of frustration to my husband. I don't think I could have found the perspective and patience to do that (even though I loved him immensely) without this site.

Hugs to you XXX Anne G.

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Anne,

I am so sorry to hear about the loss of your husband. I will be thinking and praying for you and your family.

Karen

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Thank you Karen :-)

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So sorry for your loss Anne, may you take comfort in the fact that he is now in a happier place, saved from the indignity and pain of PSP’s late stage symptoms.

I wonder what brought about the seizures, I’ll be interested to know for future reference, as my B does get shaking (mostly atms) in his sleep. I wonder if they are mini seizures?

Love and light.

Mx

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Thank you Mega. It is interesting about the seizure. Neither the coroner, nor the on-call doctor the paramedics were liaising with, nor our own family doctor later, wanted to have an autopsy. Could I have forced it? Perhaps. I'm going to guess that it was his age (pretty much at the average life expectancy for males in British Columbia) and the "no foul play" aspect... I briefly thought about forcing it in the middle of that horrible night, then thought, "Oh what the ___"

Do I really need to know whether it was stroke, aneurism, neuro-failing due to CBD or even a coronary?? I did not pursue. (We were not on time for brain donation...without going into all the details, I hadn't got G around to that idea last time we saw the Neuro, and while I think he was coming around, we never got the process done.) I AM convinced it was CBD-prompted: he just didn't have any other health compromises that would have sparked the seizure.

There has been some discussion on site about seizures with PSP and CBD. Never shows up in the literature, but some members have experience of it. No wonder really: it IS the brain that's being attacked...!

Good to be chatting with you...Feels like 'normal' life :-)

Anne G.

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Thanks Anne, for taking the time to answer my queries. Rest assured you’ve done your best given the circumstances.

I was just curious as yes, I’ve never come across this symptom in the many information leaflets on PSP.

It’s worth noting though so, I can stay vigilant when my B starts shaking at night. I’ve always thought he was just yawning albeit vigorously.

Hope you’re finding some normality after the recent events,

Hugs

Mx

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Oh my gosh I’m so sorry to hear. Hugs to you.

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Thank you Etta. AG

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I am so sorry. What can I say?

You are so wise in your comment about even the most miserable moments being full of life and the fact that he died at home with you so suddenly is shocking but also comforting in some way. You have been and will continue to be a great support to others. Thinking about you.

Love and hugs x

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Thank you for your kind words Rowan.

If I recall correctly, your husband has been many years in the disease and may be near the end (at least time-wise) himself? I hope you receive mercies as I did, when the end comes to your home.

Hugs to you XXX Anne

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I understand your shock and pain as my husband too slipped away unexpectedly before going through all the last stages of PSP that I hear described by others. I wish he could have been at home,he was in a rehab facility getting physical therapy daily in order to gain strength to come home after an aspiration episode.I still don’t understand it because he had no heart problems.But I, like you, am glad he was spared those end stage experiences.

You now have gone from a place you never wanted to be to a new place you never wanted to be. My best advice is to take one day at a time- we got good at that didn’t we? Love and blessings to you,stay strong! Janet.❤️

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Thank you Janet, wise words and I am paying attention.

Garth's death at home was another gift. Though startling and painful to witness and be with him and not be able to revive him - still, I was with him every second of the end, and it was a mercy. That is giving me huge relief to balance the grief right now. I wish that every caregiver here could have the same peace, and every patient here have the same speed and ease when the time comes for them.

Hugs to you XXX Anne G.

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Oh Anne, I am so shocked and sorry to read this. It seemed like you had much more time with your love. We just never know, do we? Not in our time, but His time. Your Garth looks like a wonderful, handsome man. Aren't we fortunate to have been with such fantastic men? What a gift. Just never enough time.

What a blessing that he was home with you. What better way to go is there? You did a great job being with him till the end. Garth cheated CBD as he didn't let it take him through all the suffering it wanted to. Thank goodness. He beat the disease!

You must be totally crushed. We can not prepare. My heart breaks for you.

Anne, you have been here for all of us and I'm sure all will be here for you. My prayers will continue to be with you at this difficult time.

Love and prayers,

Liz

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Thank you Liz: I do feel like the community is here for me: and you always have been! Thank God for this group. And yes...Garth's death felt like a gift from God. I am humble and grateful.

So right too: we WERE fortunate to have great men and great marriages. Another thing, a huge thing, to be grateful for!

It's only been a couple months for you? How are you now?

I will keep in touch here...you couldn't kick me off ;-)

XXX Anne

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So good to hear from you. You are doing amazingly well after only 5 days! I am still struggling after 7 1/2 weeks, not only emotionally but also with time management. I have not been on this site nearly as much as I would like. I don't seem to have any free time. It will improve. I keep remembering...if God takes you to it, He will take you through it!

I will continue to pray for you for strength, peace and acceptance. I keep being told to cry when it starts and feel the pain so it doesn't come out sideways later. I pass that on to you.

Love & hugs,

Liz

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No doubt it's the right advice about crying...but what do you do when you have two little dogs who are so concerned when I start crying? They hop on me with alarm and then I stop! They already feel clingy because "Dad" disappeared..... I need advice from our Grief Gurus who have dogs!

XX AG

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Good question.

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Anne

Are they grieving too?

Group, strokes and licks seems good?

Cry away. I'm sure they understand, or will do in time.

I never said by the way... but I keep a candle burning each night for all of us and our loved and lost ones these days. So many times at sea a single light has led me on through the dark to a safe anchorage. I hope you can find such a light for Garth and yourself.

So many partings here these days.

So many losses.

xx

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Thank you dear Kevin :-) Your image of candles lit has always comforted me. I'm sure there are so many these days they make the room seem like daylight... When the emergency road show had withdrawn and I had a few hours to myself before the undertaker came, I had Garth on the floor all tucked in with a warm flannel sheet (c/o the paramedics, nicely done) and one of my home-made quilts and a pillow under his head, and I lit candles and the dogs and I just hung out with him and told him we loved him. It was a very peaceful time and gave me the right quiet sense of finality I needed. The dogs understand he is gone, I'm sure of it.

Love and Hugs XXX Anne

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Oh, Anne what a beautiful sharing with Garth.

Dogs do so grief and grieving. It's so good they could share those moments with you.

I do hope I can do something like that with Liz.

Hugs to you

I wish you healing and that he stays closely by you every day.

xxxx

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I love HU with all my heart but AAARRRGGGHHH! sometimes the programming p____s me off SO MUCH...I just typed a long response to you, then hit a wrong key, trying to correct a typo and Poof! GONE...I'll message you separately.

AG

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LOL

I have just done that now!

But it was a short post at leasrt and I haven't had myt morning tea yet!

😖😖😖😖

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So very sorry for your loss Anne xx

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Thank you Tim. XX AG

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Anne

Truly sorry to hear of your husband death,so fast, but not any less painful for you.

Take your time and don't let anyone rush you.

Death leaves a heartache no one can heal, love leaves a memory no one can steal.💔

Dee

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Wow Dee. That's beautiful and so true!!

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I like that Dee :-) Thank you.

I hope your love for your man right now is what sustains you...I know it's been a long hard haul..and my experience shows how suddenly it can all disappear.

Hugs XXX

Anne

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Really sorry for your loss. Sending you a big hug. xx

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I am so sorry and so shocked to hear that your darling Garth has gone.

How utterly devistating for you.

My husband also has CBD and in the later stages but I find myself wondering what each day will bring.

I will cherish him even more each day from now on.

Love and peace to you Anne

Denise xx

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Denise, I recall your husband has been in CBD for 8-9 years: that is a long time, and even if he is an outlier you are right: the end time is probably pretty close for you. I'm glad my experience will give you even more motivation for that extra hug, hand hold, hair stroke or whatever touch communicates your total love and commitment to him. It's all that matters, ultimately.

Thank you for your words.

Love, Anne G.

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Dear Anne,

Receive my support at this difficult time. Garth is now in peace enjoying the freedom from PSP. You did an extraordinary job supporting him on the PSP journey. Thanks for all your post. Now it is time for yourself. Receive my admiration and love. Patty

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Thank you Patty, for your very kind words :-) Anne G.

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I am very sorry...!

You know. English is not my mother language but my heart is with you.

I am a widow also.

After near 8 years I still miss him.

Please, stay with us. We need your optimistic mood.

Warm regards

Elena F.

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Hi Elena! I was thinking of you when I posted my survey: I thought "Elena will probably tell me it's not scientific!! (BIG WINK!) Thank you for your comment. I'm sure I will miss my Garth all my life in one way or another as you do your man. You and others here are examples of spouses moving on and living full lives. I will do that.

Hugs XX AG

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You are so wise!

Please, take your time to grieve for your husband.

Life is going on also, out of your home, catch it!

After a few month, try to change some furniture, buy new paintings, prepare a corner to read books, or develop new hobbies or knowledges.

Look for other human beings, to refurnish fraternity and love links. Everyone of us needs the pleasure to see the sky, the sun, a pet, young couple walking, next morning.

A lot of hugs

Elena F

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I am so very sorry for your loss. Your husband looks like he was a wonderful man. You are in my thoughts and prayers.

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Thank you connie. XX AG

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Dearest Anne,

I know, I know. Having only three weeks behind me it's incredible. Charles went fast as well and though we were together the heartbreak afterwards is horrendous.

I'll keep you in my prayers and please keep on posting, I'm going to when the interment is completed. Then life will be the empty shell it looks like it will be. So sad.

Garth and Charles had that sense of humor that will be missed. RIght now humor doesn't help. Let me know how you're doing.

Blessings,

Cuttercat

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Thank you Cutter - you are so right about the sense of humour: Garth sure had it! I know enough from the wisdom of this site that I need to let the grief take its own course and time. The emptiness is awful. I long to have a wet washcloth and wash his face the way he liked me to do (He always said Home Support just didn't get it right - I know he just loved my care and my touch :-)

I am definitely staying on this site, as I would be grieving all over again if I lost it!!! So there you go: that's grief my way...:-) Hope you are doing good things to care for yourself.

Hugs and love XXX Anne

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Yes the emptiness is awful. I wish I could rectify what I did wrong and right them but PSP was such a terrible disease it made me a person I didn't know. Charles always was happy to see me and we still had happy times together. Alas.

CC

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Cutter, I don't know: I can't know,...but I have to trust that our husbands were perceptive beings - especially once they were more house-bound and their world shrunk: they would be so "attuned" to our moods and our true feelings and motivations as sometimes the only person they would see some days - or at least the only they communed with, that they would understand the frustrations and know that we loved them! The very fact that you were there looking after him non-stop year after year without any abandonment! No amount of snarky comments or frustration would make up for the fact that you were there CONSTANTLY for him! He would know that in his heart, perceive it in the fibre of his being, Cutter, I truly believe that.

Much love and loads of Hugs XXXX Anne G.

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I believe that too. We did the right thing and that is a comfort. I just hated what PSP did and does for our loved ones and what it leaves us with.

Love and thank you's dear one.

Cuttercat

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I echo those feelings !

Its not easy coming to terms with it. Like you I hang on to the fact that Chris always wanted to be near me and was sweet and loving.

Hold the happy memories.

love, Jean xxx

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Love with you my fellow cunnuck... lost my Bob Friday 😢

Hugs and understanding

Joan from Taber Alberta

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Oh Joan!....You and I are truly twins in this time of grief :-(

I will look for your post and respond there.

Bless you, compatriot

Anne

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Dear Anne,

I am so sorry to read of Garth's death and it must have been, and continue to be, so hard for you. While one part of you may appreciate a fast death at home, you must miss him terribly and long for more time together. My thoughts are with you, and I wish I could offer more than long distance support.

My best wishes,

Christine xx

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Thank you dear Christine; You understand it exactly. I miss him so much!

How is your dear sister B? I think of her quite often.

Hugs to you XXX A.G.

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Anne, it so like you to ask about my sister in the midst of your grief - thank you. I have not been able to see her since the last days of May, as I had a knee replacement after that, and have still not been cleared to fly. She understood that and the manager of the nursing home has been great in getting messages to her from me (in that absence of any help at all from my BIL!), and in ensuring that she understand she only has to ask for me to come at any time, and I will get there.

My knee surgery has been good and I see the surgeon next week, so I am hoping I can visit Bronwen again in August.

I do know that she is sleeping a lot more, and probably most of the time in fact. However, she still remains as comfortable as can be expected thanks to a massive dose of drugs and a morphine patch.

Hugs back to you my friend.

Cxx

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Oh Anne! What a shock to read this! I am so very sorry for your sudden, heartbreaking loss of Garth. After all the long, slow progression, and then to have such a sudden end. My heart goes out to you!

Garth looks so charming in the photo. What a loss.

My thoughts and prayers are with you, I'm only just seeing this now as we're traveling with spotty cell coverage. I just can't believe what you must be going through right now. You have been there for everyone. I hope you can receive all the help you need. Hugs.

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Thank you so much C: I'm doing pretty good all considering - and I'm still good for the 24th! Keep in touch and let me know as you get closer :-)

Hugs XXX AG

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I'm just in shock, it seemed like you two had years left together. Let me know how to be there for you, any support you need.

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So sorry Anne. Always enjoy your posts and kind words of encouragement. You have been a real help in this frightening world Ruth and I find ourselves in. But hey ho, I guess it is the circle of life and we should accept the experience of death no less than the birth of our babes. (That's going to take more than two lifetimes to get our heads around!)

Richard x

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That is true Richard :-) Thank you. A.G.

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Hi Anne, I have been gone to Portland, Oregon for about a week with no access to the internet. I use to have a computer in the room I use, but my daughter dismantled it and gave it away. Just as well.

I am so sorry about your loved one, Garth (the loss not the suffering both on his part and your part). I am grateful that you posted his photo. If you have before, I think I missed it. He was one GORGEOUS man, a warm expression. I like having an image of him when he was well. Thank you!

I have read your response to others and see you have made a decision to remain on this site......at least until you have no need. I have shared with you and with others how much this site helped me with my grief. I also think that if new breakthroughs on PSP surface (both the origins and "helps" with the symptoms) I will probably first learn about it here.

It has been 14 months since my son died. I did not think it would ever be possible, but I am taking joy in the things he loved/enjoyed rather than the pain of him not being here to partake or enjoy it.

For me, grief is an individual path, a journey, that we all experience differently..............I find the one thing that we all seem to share (on this journey) is missing our loved one....their laugh, their comments/perceptions, their hugs....especially when they were health.

I find, after 14 months, that I am commenting less on this site, but still reading/skimming.

Prayers and blessings.................Margarita (Los Angeles, CA, USA)

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Dear Margarita,

It's good to hear from you - thank you :-) I appreciate hearing from survivors - as I have ever since joining - to understand that life goes on once we've lost our loved ones, and it isn't a betrayal - we just experience our ongoing love in a different way.

It makes sense to me that as your love for Jeff finds new perspective, you would move out into life more widely, and need this site less. I hope you will check in now and then and say hi! I loved reading your posts :-)

At last I can say it is as warm as LA up here in RainCity: We are having a heatwave (mid 80's ;-)

XXX Anne G.

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Dear Anne, I am

Very sorry to hear. about your loss, especially since it came so suddenly . Luckily you were there and that should be some consolation. It just goes to show that we are never sure about our ending this. Life. I wish you well in the near future. And I hope you’ll be staying on this forum for a while yet

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Thank you, Anne, for your warm reply....If you ever have plans to come to Los Angeles, please let me know. I would love to meet you face to face. Had visit with Christine47 at UCLA today. I cherish those face to face visits.

I just checked your posting and found out that you had responded to me. I did not receive an email message to that effect, and all day yesterday there were NO POSTINGS. In the past I have heard grumblings from others, so I was not too concerned. Today only one PSP posting came in.

You sound like you are doing well. I am glad. I was so pleased to see that you had responded in french to another. How marvelous is that? I am a strong supporter of those who can speak and write more than one language. Was Garth also multi-lingual?

Though I am responding less, I do check in and read/skim the postings.

Blessings, Margarita

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Thanks Margarita - I'm certainly taking it one day at a time. I think I'm doing as well as anyone could. Feels like I'm swimming through molasses some days. I am sure you know all about that!

I'm not truly multi-lingual: as a Canadian our country is officially bilingual but most of us in the west don't have a lot of occasion to use French even though we took it all through school. It will come back to me if I try, but I'm pretty rusty! Garth was the same as me: from the west.

If I ever am near LA, I will definitely let you know. It is a very special thing to meet a member from this community. I'm hoping to do so Tuesday when a member is going to be at our airport for a brief time. (I'll let her decide if she wants to say who she is;-)

I loved that picture of you and Christie47 from the last time you met - that was great! I hope you get lots of those in the future.

Keep in touch XXX

Anne G.

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I am sorry, but the rest of my text seemed to have disappeared. So I’ll continue from here:

I was saying that we need all the help we can get. Thank you for having been such a great correspondent .stay strong et que Dieu vous garde-love from Anne baer

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Merci beaucoup, ma chère Anne :-) Je vais rester ici.

Excusez mon français insuffisant , s'il vous plait! J'espère que vous êtes bien?

XXX Anne G.

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Merci pour votre réponse, votre français me semble assez bon!.for the rest i’ll Write in English, seems to be better understood by most of us!, i’m Doing ok , although I have great difficulty in walking. Tomorrow i’ll Be going for a MRI SCAN of my hip. Let us hope I don’t needs hip operation, that would have really put me back......you keep your head up high in these difficult times for you, i’ll Be burning a candle for you and the memory of your husband.

Love, Anne Baer.

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Dear Anne, I just saw your message, my heartfelt thoughts go out to you. Nothing more to be said. 🤗

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Thank you Caro 💜. AG

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Anne, what is there to say...your commitment and devotion to him, and his own vitality and courage, are the most powerful words that come to me right now. I am so deeply sorry for your loss, and for Garth's suffering. You are in my prayers.

Marilyn

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Marilyn, isn't it wonderful to have this site to help us cope with all this?

Thank you for your words. I am so grateful for the friends here... :-)

XXX Anne G.

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Hi Anne,

I'm so sorry that I'm coming into this nearly ten days late. I had taken a break away from things whilst I deallt with my mums death and organised the funeral. And dreaded logging back in tonight because I knew there would be at least one bad news thread. I am so sorry for the loss of your Garth.

It's very sudden and it rips you apart, similar to the way my David just suddenly decided to go. All I can offer you at the moment is to stay strong, you need to be strong to get everything organised. Once that's done, please let go just as much as you need to, no one will think bad of you, and if they do send them my way!

Feel free to cry, scream, shout and throw things. I still cry regularly and it's getting close to a year on for me.

You did everything that you could, and you were an excellent carer, never ever doubt yourself for that. Garth was proud of you, I am sure of that.

If you need to chat, just message me...

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Derek, thank you so much for the encouraging words. Yes it was a shock (timing wise, at least) but the blessing of release for him helps me get through.

I love the idea of sending silly people your way so you can (metaphorically) beat them up! Good to have muscle behind me at a time like this, lol!

I know it will get harder before it gets easier: the "harder" is where you are, it seems. But I know I'll have support here and a different life will emerge. And you're right: the knowledge I did all I possibly could, helps a lot right now.

Hugs, Hope things went well with your Mum's arrangements, and you can get some equilibrium back. XXX

Anne G.

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Oh, Anne. How awful. I am so sorry for your news. Even as prepared as I was, when my love died it was still a shock. I can only imagine what you are feeling - or not feeling. The numbness that struck me was so strange - protective, of course, but it leaves you feeling completely unmoored.

Your husband looks so very charming in that picture. A terrible loss.

Hugs, love and peace,

Sarah

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Thank you so much, Sarah; the love and support is gratefully accepted and is sustaining me as it did during the "journey". The numb period is odd indeed.unmoored is a perfect word. It is sort of feeling detached from the hard life before (which is relief) but detached from all normal life too (which is odd.) I know it will change - I'm listening to the experience others have shared and I see that people do move on, though things are never the same.

It's only been slightly more than a year for you...do you ever feel better? even a bit?

Hugs and love back to you XXX

Anne

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Feel better? Not really. Letting go has never been a strong suit of mine.

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So sorry Sarah... I've been an optimist all my life, and always believed there was SOMEthing I could do to make a thing better. Death though is not something that can be fixed.... Ugh...

XXX. AG

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