Dear Friends: Dear friends it will soon be... - PSP Association

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Dear Friends

Georgepa profile image
46 Replies

Dear friends it will soon be time for me to leave this site , not just yet but soon . I am finding bereavement very difficult to deal with and I feel I must try to rejoin the outside world again . Before I go I would like to offer my heartfelt thanks for all the love , support and advice that Veronica and I received over the three years we have been here . Without you all I would really have struggled to manage . I hope in some small way I have been able to reciprocate and return some of the comfort you have given me .

Can I offer just a few thoughts . Love your partner like you have never loved them before . Kiss them goodnight , kiss them good morning . Give them a hug at every available opportunity , hold their hands , stroke their faces . Make them feel they are the most precious person to you in the world . Give them the best quality of life that is in your power to do - you wont regret it . When you are tired and exhausted and your patience is stretched to its limits and you have been a bit sharp , take a breath and think where would I rather be , standing here or sitting in that chair day in day out unable to do anything for myself and probably not understanding what is happening to me . There is only one answer and it stood me in good stead when things got really tough as they do for all carers .

It is often difficult to feel loving to ones partner when their personality has changed and they are not the person you have known and loved be it husband ,wife father or mother . But its not their fault and that's not always easy to remember when you are under so much pressure .

I don't mind admitting that there were times when I wished it was all over but when it was , all I can think is that I would do it all over again just to have a little more time.

Some of you were kind enough to encourage my scribblings and so I have set up a blog on Google where I am going to try to chronicle how I have to deal with a fresh start , a new life as a widower with all that entails .I think if you Google " blog or blogger Georgepa "you will find me, that's if you want to ( there might even be a bit of the Georgepa at large in the Devon countryside when I feel I can face it again ). This is my e-mail address for anyone who wants to contact just for a chat and stay in touch georgecybermills@gmail.com

Finally ,even though I may not be here ,my thoughts will be with you , the magnificent carers and those who bravely suffer this awful illness. . Be strong , be brave and above all be loving .

yours with thanks and love

Georgepa

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Georgepa profile image
Georgepa
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46 Replies
Pentland profile image
Pentland

I am glad you now feel that it is time to move on. I have no idea how you will do this other than finding lots of activities to fill the time you would normally have spent caring for Veronica. I am sure you have friends who will love to have you back in their company. We have maintained our membership of our local U3A which we attended before CBD took over our lives. It is a great organisation for getting to know people and joining in on an endless variety of activities. I can't recommend it highly enough. Whatever you do, George, know that our thoughts and prayers go with you and above all we wish you peace.

Keep blogging!

Margaret

NannaB profile image
NannaB in reply toPentland

I echo your thoughts on the U3A Margaret. Tonight I returned from a 5 day walking holiday with 24 members of our village U3A. We went to the Gower Peninsula in South Wales. Our legs ached from walking and our ribs from laughing at our evening get togethers after dinner. I'm joining the woodcarving group this week...another first.

Best wishes

Bev aka Nanna B

easterncedar profile image
easterncedar in reply toNannaB

That sounds just lovely, Bev. I just had a few days hiking with one of my sisters. She lost her husband suddenly this spring to undiagnosed cancer, so we find ourselves oddly in the same place. Anyway, we went up three mountains, the most challenging peak through a rather scary chimney-like passage called "the fat man's misery". We are very proud of ourselves, being the oldest and stoutest climbers that day!

So glad you are having such good times. Thanks for staying in touch. Love, ec/ Sarah

NannaB profile image
NannaB in reply toeasterncedar

Wow Sarah! Well done you. Makes the hills I walked in South Wales seem very small. Not sure I would have survived the fat man's misery. I would probably have got stuck and have to be rescued. So pleased you are getting out doing exciting things. Just such a shame we can only do them because of our circumstances.

Here's to more adventures.

Lots of love

Bev XxxX

Brenive profile image
Brenive

Sorry your leaving , I have enjoyed your post, good luck for the future, and I wiil be following your blogs . Happy rambling round Devon , lovley county . Mind how you go at the skate park. Thats if you should get a skate board this christmas....ha ha.xxx Brenda.

Kevin_1 profile image
Kevin_1

Georgepa - I will follow you.

Your post was beautiful and saddening.

Forgive me, its late, and I want to reply to you properly - tomorrow.

Warnly

Kevin

Such a lovely post, I wish you luck for the future. I cannot find your blog, can you post the address please if possible?

Sue x

Bargiepat profile image
Bargiepat in reply to

This should take you to it.........

georgepablogger.blogspot.co...

in reply toBargiepat

Thankyou!

Marie_14 profile image
Marie_14 in reply toBargiepat

Patrick

Thank you so much for finding George! I had no success. Clever you!

Marie x

Kevin_1 profile image
Kevin_1 in reply toBargiepat

Thanks Bargie

I've got the tracker set so I won't miss the posts.

Oh and I wandered into the members list area in error and saw your fantastic rooftop photo.

You realy know how to use a camera!

Kevin

Satt2015 profile image
Satt2015 in reply toBargiepat

Thanks Pat!! X

easterncedar profile image
easterncedar in reply toBargiepat

Bless you, Pat! And how are you doing?

Bargiepat profile image
Bargiepat in reply toeasterncedar

Yesterday I ordered a shopping stroller with a seat to sit down on..... I feel very wobbly when standing still so this will help at the supermarket check out.

I have also booked another holiday in Portugal. I hope I have not 'bitten of more than I can chew' because it is in the Alfama area of Lisbon which has narrow hilly streets. There is however tram 28 that is only a short walk from the hotel .

easterncedar profile image
easterncedar in reply toBargiepat

Good for you! I hope to see more of your splendid photographs. Good luck on your travels. (I almost said "trip". but avoided that misstep...kind of.)

doglington profile image
doglington in reply toBargiepat

Good luck. You have to go for it.

Chris had a stroller with seat. It was great, unless he got over-enthusiastic and raced off, with me in tow - especially down-hill !!

xx

Bargiepat profile image
Bargiepat in reply todoglington

I did try a stroller that had 2 handles but with my rigid left arm I found it difficult to steer. I have now ordered one with a bar handle that may work by being able to steer it with my right hand only.

CBP1 profile image
CBP1

Thank you for your wise and honest advice. I have not contributed much to this site, but I have benefited from reading your inspirational and sometimes entertaining posts.

As my husband continues to suffer with this terrible disease, I will remember your words. I look forward to following you as you blog. You are a gifted writer.

I hope that you continue to heal and are able to join the outside world once again. From what I have read about Veronica, I have no doubt that is what she would want for you.

God Bless,

Carolyn

Fer39wer47da profile image
Fer39wer47da

Georges, even though I haven't been verq active on this site, I have always admired and read with great interest your Posts. I can understand you feel the need to go on, and I will miss your wise words.

Good luck, et 'bon courage ' with the bereavement process.

Warmlopen yours, Anne Baer

NannaB profile image
NannaB

Hello Georgepa,

I'm so sorry you are having a hard time going through bereavement and although you miss V terribly, I do hope that you will very soon get through this sad time and start living again. I echo Margaret's thoughts on the U3A. Two hours ago I returned from South Wales when 25 of us U3A members had fun together on a walking holiday. We were widows, widowers divorcees and couples and ached laughing some evenings as we gathered for after dinner drinks.. Those of us who had lost our loved ones could speak about them, not with sadness but grateful that we had found love that will last forever. These five days were the first I had ever spent in a hotel room on my own, another first. One of my sons commented that it is a relief to him to know I am making a new life for myself and he can't keep up with what I am doing. Colin would have loved to have come with me to Wales, who knows, maybe he did. I'll definitely look up your blog but don't spend too much time looking at a screen, get out and enjoy that wonderful county you live in.

Very best wishes

Bev aka Nanna B

abirke profile image
abirke in reply toNannaB

Good for you Bev....I( always feel a jealousy when I read your posts...you are doing the things I would love to do. I may have some things in my future and I am happy......stay happy Bev

Do Well,

AVB

NannaB profile image
NannaB in reply toabirke

Thanks AVB, I'm so pleased you are happy and pray you will get to do all things you have longed to do.

Lots of love

Bev

XxxX

Yvonneandgeorge profile image
Yvonneandgeorge

George you will be sadly missed, you have helped me a lot of times. I understand you need to move on, I wish you well, I wish you joy, to be able to move on, it is early days, but do what V would want you to do. You can only take one day at a time, and when you are ready you will be able to enjoy you life, V will always be the love of your life, and the best mum in the world to Kate. Thank you George for all your help, I will definitely be looking at your blog, when I was sad you made me smile. Love to you and Kate. Yvonne xxxx

enjoysalud profile image
enjoysalud

Georgepa, I have been comforted by your sharing's. I will miss them. I appreciate greatly what you posted today.

I am a 77 year old mom. I lost my son to PSP on May 4, 2017, almost 5 months ago. He was 55 years old and 5 weeks (born 1962). Even now I remember the early evening in New Haven, conn, when he was born. Moms don't forget...maybe like spouses remember the first time they met.

My son's first symptoms appeared March 2014, double vision and slurred speech. They were DX Jan of 2015 as Parkinson's. That's when I joined the Parkinson's site. Jan of 2017 he was re-DX with PSP. I then switched to this PSP site.

I spoke to my son almost each day of his entire life....except during his college years and his year in Guadalajara. 2015. After his PD DX, I saw him every day (he bought a house close by), except when I was visiting his sister in Portland, Oregon. My last trip away from him was August 2016. We were very close. I have lost not only a son, but my very best friend. This was not suppose to happen.

After my son's death, and attending an 8 week Grief group sponsored by Kaiser Permanente (we reside in Los Angeles, CA, USA) I decided I too needed to move on. I kept away from this site....for a short time. I found that I was NOT ready. That there was still much comfort to be gained from reading the postings, and perhaps when I did contribute, was of some help to others. I know that Ketchupman's pragmatic suggestions, way after his wife died, were very helpful.

Sometimes my needs are spiritual, sometimes I thirst for factual information, other times to read that others have also lost their tempers with their loved one, sometimes just commiseration at the unjustness of the health care system in the USA. I have found that all on this site.

I think there will come a time when I won't need this site.....perhaps when that time comes I will just slowly fade away.

I wish you the best, and hope that you will come back, if only once a year, and share how you are doing.

jzygirl profile image
jzygirl

Dear George I will miss your words of wisdom on this site... but I can fully understand where you are coming from.

It is now a year since Brian passed away and I still miss him everyday. Most days I have a quick look on this site but it's not the same. It used to be my lifeline to sanity but now I get sad to see so many new people joining and upset to read of the progression of others.

What ever you decide we will still be here somewhere in cyberspace. Jane xx

Spiralsparkle profile image
Spiralsparkle

What a beautiful post as ever. You are such a gifted writer.

Your advice is something I will hold in my memory to keep me going when it gets tough.

I hope by stepping away from the forum you will be able to make a step along your grief path and a step towards finding George and living for you and V. You will be thought of by us all here and I will follow your blog.

Stay well and enjoy the wonderful memories of good times with V and how you were her guiding light in her darkest time.

Much love xxx

Tippyleaf profile image
Tippyleaf

Thank you for all your wonderful words both in this post and previously. You have a gift with words and your descriptions of Devon have often carried me away from the reality of London and PSP for a few minutes lightening my load for the day.

Grief is so unpredictable, catching us out when we least expect it and another challenge to face.

I wish you well in your new journey - so many good suggestions from previous posts. I will follow your blog and hope sincerely you will find peace in your new life and be able to remember V and all the happy memories.

Look after yourself

Love Tippy

doglington profile image
doglington

Dear George, As always your posts touch me. A beautiful tribute to V and a reminder to me to make the most of the time I have with Chris, even though he can respond so little now. I went and gave him an extra kiss and cuddle in your honour.

You have brought so much compassion and humour to this site and I will really miss you but I so hope you are able to learn to enjoy life with V in your heart. I remember you fell for her when you were very young !

I will follow your blog.

Thanks, Love and a big hug from Jean x

Katiebow profile image
Katiebow

Dear George, such a touching and profound post and a lovely reminder to touch, kiss and hug our loved ones, I know Ben loves when I make a fuss of him, it must be frightening for a sufferer if they don't feel loved. I will try to follow your advice and also try not to be sharp or irritated when things aren't going smoothly, it's not their fault and you would hope they would have done the same for you.

I will be following your blog as your writings are so lovely to read, you never know you may have a biography in there George. I fully understand why you are having to leave us all on this site but it's time to move on and concentrate on trying to reclaim yourself and prepare yourself for your new life. I hope that you are understanding yourself and your thoughts as you grieve for your lovely wife. I wish both you and Kate well as both forge ahead, best of luck George.

Much love

Kate Xxx

NanBabs profile image
NanBabs

Dear Georgepa,

You will be greatly missed but you are right to try to move on. I looked forward to your wit and wisdom, even shedding a tear occasionally.

Very best wishes.

xx

daddyt profile image
daddyt

Thank you so much for sharing all that you have... I know that it was difficult. God Bless.

Tim

ketchupman profile image
ketchupman

Well said Georgepa! I pretty much followed that same advice. I recall only 2 meltdowns I had where I was totally exhausted at the time and my wife just pushed me to the limit by still trying to do things on her own, only to make bigger messes and often injuring herself. Those 2 times, I recall scolding her like a small child. Oh how I wish I could take those words back. But I always walked out of the room, calmed down for about 2 minutes, and came back and gave her a big hug and told her how much I loved her. I knew it was this cruel disease and nothing she had control over. It's coming up on 16 months since I lost my bride of 35 short years. I have good days and bad days. I'm in the process of selling my house and moving in with my dad on a part-time basis and also buying a condo on the Florida/Alabama panhandle. As I pack up everything, I constantly weep as I come across so many memories of Kim with our family. So many wonderful memories. Our wedding. The birth of our 2 kids. Our first home. Our first station wagon. Our first mini van. Our first SUV. When each of our kids accepted Christ and were baptized. Those are the memories I strive to keep in forefront of my mind and less of those from the last couple of years. Although those last couple of years were still in some ways special in that I had an opportunity to serve and love her like never before. Something I'd give anything to do for just one more hour.

Peace and Love to you,

Ketchupman

Kevin_1 profile image
Kevin_1

Hi Georgpa

Just so you know my last post was not a 'blackmail' to keep you here. I do understand there are times when it is better to move on.

Whilst I was looking for your blog the search engine came up with your HU post "Georgepa on the rampage." And I chuckled, a little more sadly all over again. Your blog is not coming up yet. Do tell us when it is.

You both have been a great strength and guide for Liz and I. Thank you from the bottom of our hearts.

With great warmth and admiration

Kevin and Liz

Marie_14 profile image
Marie_14 in reply toKevin_1

Kevin if you scroll up to Bargiepat's post there is a link to George's blog! Patrick is clever on this site I have noticed! I haven't figured out how to post a link yet or I would send it to you.

Marie x

Kevin_1 profile image
Kevin_1 in reply toMarie_14

Thanks

Waiving

xx

Cuttercat profile image
Cuttercat

Dear Georgepa,

I do understand you not posting because of the pain. The pain we, who are still posting, feel now and will for many years to come. I'm coming apart at the seams. Hospice trying to help with anticiapatory grief. So many friends are gone and so many don't understand.

But do stay in touch and post what gets you through if you're inclined.

You helped everyone with each and every post. A big compliment for someone we all admire, I sure do.

Take care dear one.

Cuttercat

Satt2015 profile image
Satt2015

Darling Georgepa itis with much sadness that your leaving us, but I absolutely understand why!! I'll certainly google your trials and tribulations and will email you from time to time. Much love x

Nanny857 profile image
Nanny857

Dear Georgepa, I'm sorry you are having a difficult time and I can appreciate you wanting to move on.

Your post is just what I needed to read today. I have been so angry and frustrated with W these last few days as I still keep thinking he is the capable man I married, but as you point out its not his fault it's PSP's. So from now on I'm taking your advice and there will be more loving kisses and hugs.

Thank you for your colourful writings and sharing your journey with V. I look forward to following your blog.

Best wishes for the future.

Lots of love Nanny857 (Marion) x

lindaD_ profile image
lindaD_

Thank you georgepa will remember all your wise words ,every day and every night

PUTLAND profile image
PUTLAND

George I wish you the very best for the future. Take care of yourself xxx

Thank you!

You have helped me to reserect old feelings that I let lapse due to frustration.

I wish you all good things and if you are ever in NYC Look us up.

Rcalvo5263@gmail.com

God Bless you and yours.

Rita & Joe

easterncedar profile image
easterncedar in reply to

Hi, Rita. It's been a while since we've heard from you. How are you? Ec

abirke profile image
abirke

Wherever you go, I will be there. But Like NannaB said , don't stay too long at the screen, the life outside the screen is quite lovely....however you are moving forward. That is good.....step by step my friend, or should I say blog by blog....

Do Well,

AVB aka Andrea

easterncedar profile image
easterncedar

Dear George, I just saw this. I hope I am not too late to thank you for all the love and beauty and humor and inspiration you have brought to us all this long, too-short time. I wish you all the comfort and peace there may be. Be happy. Love, Sarah

Robbo1 profile image
Robbo1

Dear George, Sending you best wishes for the future and thanks for your wise words and expressive writing.

Please consider writing about PSP at some point in the future. People need to know! With your talent, you can get the story over to the non- initiated in a charming, funny and yet serious way too.

Best wishes and may God bless your future. Rx

AmandaF profile image
AmandaF

You have spoken for all of us. Wishing you strength and peace in coming weeks and months. Amanda.

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