Another year over: Do not know whether to... - PSP Association

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Another year over

Amilazy profile image
31 Replies

Do not know whether to celebrate or crawl under a rock.

Today I am officially classed as an old age pensioner (65), besides the many birthday cards this milestone confirmed in a plain blunt letter this morning from DWP. I do not feel like it, mentally still think I am 30/40's, body well maybe 50's aches and pains getting better as no longer having to lift M countless times a day. I usually enjoy birthdays but this will be first without M with me since my RN days, and I feel empty, even though we have a great little family.

Then on Friday, M and I will celebrate 38 yr married do not know how much longer we will be together but I still ache for her and hate to watch this plague of PSP ravage her body and lock her inside her head unable to communicate other than with a smile. Her nursing home do what they can but it is not the same as home.

In someways I want her to stay with me for many more anniversaries but the more PSP removes from her the more I realise I must let her go. The constant question why her not me, why am I relatively fit and she is more locked in and has less quality of life, each day.

So this week which for many would be a week of celebration feels more dark and bleak than usual. I better get out of this hole sorry to sound depressed will go for a walk on the beach (oh where has the sun gone the drizzle and gales seem to want to match my mood)

Sorry to sound off but need to get it out of my system, and you dear friends are the only ones who may understand.

Thanks for letting me get some frustrations off my chest.

Best wishes to you all,. Tim

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Amilazy profile image
Amilazy
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31 Replies
NannaB profile image
NannaB

1951 must have been a good year. Apart from The Archers starting daily, you and I were both born then. Your post reflects how I feel, physically ( the aches are spreading) and emotionally, it's hard seeing our darlings in the state they are in now, knowing it will only get worse.

I thought I'd be depressed on our anniversary but I had a really good day having two celebratory meals and laughing a lot with friends, after a little tear as I read our cards to C. I hope you manage to find something to do that will make you feel good.

I love the photo. It does cheer you when family are around, especially little children.

So Tim, HAVE A VERY HAPPY BIRTHDAY

🎂 🍷

X

Patriciapmr profile image
Patriciapmr

Happy Birthday Tim,

My heart goes out to you, I know exactly how you feel, I'm at the point of I can't do this any more and am thinking about nursing homes. Not what any of us want but unfortunately we have to be realistic, we can only cope with so much.

Please try and enjoy your day as best you can, thinking of you.....

Love and big hugs....Pat xx

Kevin_1 profile image
Kevin_1

Happy birthday Tim

Yes, this losing people slowly is a tough one.

Is that M with the Baby? She looks so contented.

Lovely family photo.

I'm just a few years behind you, but the government has been kind they won't be retiring me until I am 67. Chuckles.

Happy Birthday.

And I wish you all the very best for the coming year.

Kevin

easterncedar profile image
easterncedar

Happy birthday, Tim. Forget the DWP and go walk in the gale. I bet having the weather match your mood will help, and then it will blow the blues off you! Be well, love and peace, Easterncedar

Satt2015 profile image
Satt2015

Many happy returns Tim 🍰🎶🎂🎁🎶

65 is only an age and in fact the new 50! 😊

Walk along that beach, blow those cob webs away and have a glass or two of 🍷 or 🍺

Equally I understand your feelings and how difficult Psp makes everything but we have to try and keep a little bit of 'positives' amongst us!

Big hugs to you and 65 💋

jillannf6 profile image
jillannf6 in reply to Satt2015

i agree ti,m

ol jill

xxx

LynnO profile image
LynnO

Happy Birthday Tim,

I hope you find a bright spot with your birthday and your anniversary. One thing good about turning 65 in the states, is you get "old people" (as we call it in our house) discounts on things. : )

This PSP is a cruel disease indeed. We're here for you.

LynnO

nanonthenet1 profile image
nanonthenet1

Happy Birthday Tim, I do feel for you, my hubby is about to become permanent at the nursing home he has respite in, a heartbreaking time but it has to be.

It's a beautiful place and close by so visits are every day.

I hope the sea air clears your mind and you feel better soon, I really miss the walks hubby and I had on that beach and I do miss the sea.

Take care x

Heady profile image
Heady

Oh Tim, of course we all understand where you are coming from. Getting "old" not only brings home our own morality, that time has marched on, leaving us behind, wondering what happened, still feeling that young person, but not recognising ourselves in the mirror!

We have the added insult, that PSP has taken away our future and we aren't the ones suffering its evil clutches.

Birthdays and anniversaries ought to be banned, what are they to us, but reminders of what was, what is and what life should be.

Right, moan over!!! Many happy returns of the day Tim, officially in "old git" terrority! There are a few benefits, so they tell me. I have a few years before I find out, if I ever do, they keep moving the goal posts!

Please try and treat yourself to something nice, even if it's that sticky cake, that you have been trying to resist! On Friday, you must make it the best day possible for M.

So grab hold of the ladder, that we have all thrown you, pull yourself out of the hole. Most of all remember, tomorrow it will be 365 days before the next nasty reminder of your age!!!

Sending very big birthday (((hug))) and lots of love

Heady

DoreenC profile image
DoreenC

I always have so much respect for you Tim. It is so clear how much you adore your lovely wife. You are so brave and loving. This illness has us all living a nightmare . We too have been forced into putting our mum into care and are at the moment having to transfer her to nursing. Every step of the way is a battle and it is destroying our 84 year old dad. I often think of you and that you are somehow coping. Try and enjoy your birthday. Sending lots of love to you and M xxxx

Bouganvillia profile image
Bouganvillia

Don't be sorry. It's better to get it out. Take care.

Hi Tim

My heart goes out to you both.

PSP is hard and it steals from us.

There is no answer - just hang on to what love can still be shared.

Liz

xx

jzygirl profile image
jzygirl

Happy birthday Tim you are now classed as an old fart. Enjoy your day as best as you can. Janexx

nanonthenet1 profile image
nanonthenet1 in reply to jzygirl

😊 made me laugh x

Debbieann profile image
Debbieann

Oh Tim, I know how you feel, I don't even feel like I can share how 'down' I'm feeling at the moment, anyway many happy returns, 65, a milestone, make M feel special on Friday, which i'm sure you do most days anyway. shall we have a race out of the hole?

Sending you a birthday hug

Debbie

Yvonneandgeorge profile image
Yvonneandgeorge

Happy birthday Tim, I also have huge respect for you, you looked after M so well, you could always see the live you feel for her, she is a lucky lady to have you by her side, hope you had a lovely birthday with your family, and have a lovely day with M on Friday for your wedding anniversary. Sending you a massive birthday hug. Yvonne xxxx

Yertle profile image
Yertle

Happy birthday Tim, wish I could unburden you, know that we share your pain. Hope the sun shines through for you soon x

MaddyS profile image
MaddyS

Happy birthday Tim. Even joy a sweet slice of cake. Maddy x

MaddyS profile image
MaddyS in reply to MaddyS

Sorry should read enjoy.....

Doglinton profile image
Doglinton

Happy Birthday and anniversary, Tim.

I have a tear as I read your post. You are well aware of your blessings of family but it is so hard to be reminded of what PSP has cheated you of, sharing your declining years as you expected.

I really admire the way you have looked after M and know how much you have helped me with your posts.

I know you will manage this and make the best of things.

Love and a big hug, Jean x

ketchupman profile image
ketchupman

Happy Birthday Tim! And hope you have a happy anniversary too! I made a special effort for Kim on our 35th anniversary in June by taking her to our little Baptist church were we first met and where we were married. So glad I did, as I never dreamed she would pass only a month later. Oh how I miss her. And how I miss caring for someone that I deeply loved.

Make every day count. Be with those that you love and tell them so. I'm sure that will make the day brighter, if not in the skies, in your heart and soul.

Ketchupman

Heady profile image
Heady in reply to ketchupman

Sending love Ketchupman, hope today is better the yesterday and tomorrow better than today!

Big (((hugs)))

Lots of love

Heady

ketchupman profile image
ketchupman in reply to Heady

Thanks Heady! I thought after a month it would be easier, but I actually think it's a bit harder. It still doesn't seem real that she's gone.

Love you!

Ketchupman

Heady profile image
Heady in reply to ketchupman

Sorry Dan, but it's going to take a little bit longer than this! Of course it seems to be getting worse, the numbness is starting to wear off and you are starting to really miss her now. Try to direct your pain into something positive, the garden, decorating, anything that will keep you busy. Long walks, or if you are fit enough, take up that sport you always wanted to do. Use your body, make it exhausted, that might keep the brain quiet for a bit. Long enough for you to fall asleep. Then tomorrow, do exactly the same!

Shame you are so far away, I am desperately looking for something to do, on my next respite week. I'd come and buy you lunch! So sorry, you will have to make do with a cyber one🏑🍕🌭🍟🍔🍷🍷🍷🍷🍷🍷

Lots of love

Heady

Amilazy profile image
Amilazy in reply to ketchupman

Thanks Dan, I understand the need to do today because you never know what tomorrow will be PSP's new surprise. Nice to hear the anniversary story, a nice day to remember with Kim being taken so soon. Hope your grief eases it will never completely go but will fade to a new normality. I will try to take Margaret for a special trip on Friday if she is well.

You look after yourself best wishes Tim

Dear Tim,

Happy Birthday and Happy Anniversary to you and your bride!

You are so loving and caring and I pray you find peace. We are struggling here in NY. I have to get Joe started for the day and he woke up loving me and saying he knew me and after breakfast it all changed back to what it was. So confusing. It must be so hard for him.

I am living with a stranger. On Sept. 3 we will be married 55 years. Tomorrow we will be in our home here 50 years. He knows and remembers none of this. He was always so kind and sweet and now he curses and is angry most of the day.

Each journey is unique.

God Bless,

Rita

Amilazy profile image
Amilazy

Thanks to everyone for their best wishes yesterday. Your comments and the improved weather lifted the depression for a while.

Thanks again Tim

Cuttercat profile image
Cuttercat

Dear Tim,

Hope your birthday was happy.

I get the guilts as well as the resentment and the sadness that goes with it.

The photo is one that I will return to you when Charles holds his new niece and nephew next week.

My heart aches for you and for all of us. Stay strong.

Cuttercat

Nanny857 profile image
Nanny857

Apologies Tim, I'm a bit late wishing you happy birthday, hope things brightened up for you BT the end if the day.

Happy anniversary to you and M for Friday. Hope the weather is kind for you and you get to take M out and have a nice time.

Take care,

Lots of love, Nanny857 xx

Robmatlol profile image
Robmatlol

Happy birthday Tim. You have a lovely family, celebrate and enjoy even if only for a couple of hours. It's my mums birthday today but she doesn't really understand. Still, we are going to make a fuss with big broad smiles because the alternative doesn't help us. Pep talk over.

I do enjoy your posts Tim, above all your honesty is admirable.

Lots of love Michele xx

GonnaMissDaddy profile image
GonnaMissDaddy

Happy birthday a little belated Tim. I'm glad the weather and depression got better. When Daddy was first diagnosed early last year, 2015, I could read only small bits and pieces in researching the evil psp because emotionally, I'd come undone and drown in a river of tears. I've grown much stronger (necessary) and have forced myself to learn about psp and all its unforgiving possibilities. It's been awhile since reading about psp has made me cry, but this thread here, did, for all of you and for Daddy, too, and me. With every word I read about it, I hate psp more and more, as we all do. Your love for your wife Tim, is admirable, and the others of you contributing to this thread, are beautiful souls, every one of you, and you're all in my prayers.

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