Feeling 😪 no card, present or celebration, not even any point in cooking a nice meal. 🍷in the garden alone as I can't cope with watching another repeat of the repeat of... The suns not even out to cheer things up!
Love
Debbie
12 years ago today: Feeling 😪 no card... - PSP Association
12 years ago today
Written by
Debbieann
To view profiles and participate in discussions please or .
71 Replies
•
You both look great!
Oh, Debbie... All Liz and I can do is offer virtual hugs... loads of them.
PSP is cruel.
So hugs and a tear shed for you both form here.
Love
Liz and Kevin
XXXXXXXXXXXX
I am so sorry. The anniversarys and birthdays are the toughest. Noone to share them with and it brings home how much has changed in our lives. I can only hope tomorrow is a better day for you. I can't do the icons that others can so a virtual hug is my offering to you. I know its not much but sent with all my love. Pauline xx
I would try and say something to cheer you up, but nothing will hit the spot! You need your man and he can't be there for you, but YOU can still go and give him a kiss and a cuddle and wish him happy anniversary, after all, he was there as well! Do try and make an effort tonight, for your sake as much as his!!!
Happy anniversary to you both🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🍷🍷🍷🍷🍷🍷🍷
Lots of love
Heady
I know I should make an effort, but ....
It's so lonely
Love
Debbie xx
Life is very lonely these days. Nothing we can do about it. Had a totally £&@& day. Well, week really, but this afternoon, took the biscuit! Out doing some much needed gardening, actually planting some of the pots, two months later than they should, but hey ho, mowed the grass, then the little rat I call a dog, went missing. Got into next doors, they were out, so couldn't get him back, spent ages crawling under the hedge trying to get the sweet creature back. Got up to get a bigger treat and found S had got out of his wheelchair and was sitting in another seat!!! Oh boy did I hit the roof, actually I didn't, I just burst into tears. He was on the patio, which has a four foot drop onto another paved area, so if he had taken a tumble, well they would still be scraping him up now!!! The thought of it, I really thought I was going to be sick! Why? Why? Why? He knew I was stressed out trying to get the dog back, yet he couldn't sit still for me. That really was the last straw, tonight I just feel like saying sod it all, I am giving up. on top of that, the Carers that were meant to be here at 9.30 have only just turned up, 1, 1/4 hours late. I put him to bed 1/2 hour ago. I had too, as I am so tired, knew I wouldn't be capable if I left it any longer. No phone call to say they were running late. The fight I had to get this time, as they finish work at 10.00. Now they have just said he was down for a 10.00 call!!! That's the first phone call in the morning. I don't need this constant fighting, so after my wonderful day, I go to bed, knowing that tomorrow, has already got a fight booked.
And people have the cheek to say, how wonderful we are, "I couldn't do what you do!" Well I've got for news for the world NEITHER CAN I!!!!!!!!!!!!
Oh I so much wish we could have just sat down and shared these bottles of wine, that I know you have opened and I have as well. To have a laugh, be carefree, forget the world for five minutes, to never have heard of PSP.......................
Lots of love
Heady
Hi, Heady
Had similar day and share your feelings. Then Chris said, when I put him to bed , that he loves me. I asked why he can't talk to me and show me during the day. He just says " I don't know " I don't understand it !!
Second glass of wine !!!
love, Jean x
Hope you are feeling better this morning Jean!
Lots of love
Heady
He's right... I don't know and I don't understand it. My wife is my forever love. I want to hold and kiss her for as long as I can... in my mind at least. I don't know what is stopping me and it saddens me. The neuropsychiatrist says it's a disconnect... Apathy.
Thank you for that. Its so hard for us to accept. Its exactly how Chris describes his difficulty. What a dreadful disease.
Love to you,
from Jean x
It's so sad isn't it Jean, my birthday card last year had the message 'Sorry Kate' written in it, I knew exactly what it meant. This year I doubt there will be a card and certainly no message as he can no longer write and his emotions seem blunted. Sometimes you just long for a hug and a few tender words, PSP you should be ashamed of the suffering you cause.
Enjoy the wine
Love Kate xx
God yes I wish PSP had not come along to destroy my life! And yes somebody said they admired my dedication, it's not dedication, I've not got a choice! There's not many days when I don't think(rant) I can't do this much longer!! I'm not a nurse/carer, I want to be a wife!
And there's not many days where there's not phone calls to make or something to fight for, I do think it would help if everything you need to make the caring role easier wasn't a constant battle
Hope today is better for everyone who had a bad day yesterday
Lots of love
Debbie xxx
I so agree !!!
Jean xxx
Yeah, the role of wife went out the window, when PSP barged through the front door! Why is that? Most professionals, don't even acknowledge that S & I are married! I'm treated like something the dog dragged in and then discarded, by some! Well I suppose to be fair, I feel it like most days!!!
Three fights already this morning and it's only 10.00am, the next one is already brewing, if the Carer is not here in 5 minutes!!!!
Then I off to take the dog for a walk. Not fit for human company today!!!
Hope you are feeling better this morning. Least it's only 364 days until the next anniversary, apart from birthdays, Christmas, Easter and Uncle Tom Cobley and all!!!
(Fight 4 adverted!!!)
Lots of love
Heady
Oh Heady, I felt awful on Sat. night. We had been babysitting, it was late, I left B cleaning his teeth while I popped upstairs to the toilet. CRASH! He had tried to get out of the wetroom and fallen off the chair. The problem is with me because I cannot accept that he forgets that he is unable to do things any more. I guess your hubby is the same. Thank goodness he didn't fall further.. We do all this caring for them and they seem to ignore this and take risks. Bl--dy PSP!
Big hug.X
Dear Heady,
Your comment "And people have the cheek to say, how wonderful we are, "I couldn't do what you do!" says it all. I get that all the time but no offer for help from any of them. Even a quick sit down or visit.
As for S, my husband Charles does this type of thing all the time. I say stay and he just won't, he's like a jack-rabbit and moves so quickly. I'm worried about our upcoming vacation but have to put my trust in God, the only place.
Hugs for you.
Cuttercat
I expact he's like me wishing either that is all a dream or that the nightmare was over love and hugs xx
Had to double take there Heady as read that as 'already had flight booked' thought you were flying off into the sunset! Only in you dreams. Joking apart all seems a bit sh-----try are yours, all I can do is send you a big cuddly hug.
Love Kate xxx
Oh Heady, I can hardly see through the tears as I read your post. ( at 4.00am ) How many times have I been there, like you I dont want praise . Just a wee chance at normality again. I dont post very often but find all yours very supportive thank you. lots of love May
Awe Debbie, I feel very sad for you, what a load of s***!
Hugest hugs
Everyone on here is here for you!! X
Oh Debbie I feel for you so acutely. I think I posted a lament very similar to yours last December when it was our anniversary. It is sooooo lonely isn't it.
What a lovely photo of the two of you! I know it's not much consolation but you do have the memories and no one can take those away from you.
I wish you many congratulations on your anniversary and will raise a toast with my glass of wine. 🍷💐💞
Oh Debbie, it gets harder doesn't it? What a lovely photo of both of you. It's strange because I had just finished doing something when I opened your post. I've been going through a pile of greetings cards, birthday, Mother's Day etc, looking for the last anniversary card Colin ever sent me on his own as it's our 44 th anniversary on 5th August. I found it eventually, and one I sent him and I will put them up like I have for the last 5 years. There will be a tinge of sadness on the day but I we have had such happy years in the past and I feel blessed that we found each other, soul mates, lovers, companions and have felt a special love that some have never experienced.
If you don't feel like cooking, don't, send out for a takeaway. I've decided I'm going to order a curry and finish a bottle of wine already opened and talk to C about our wedding day and the disastrous/ now funny things that happened. He will have his memories but can't talk about them so I'll rabbit on as usual to my darling captive audience.
I hope the sun shines on you tomorrow and you feel better Debbie.
Sending you a great big hug.
X
You mean you have some wine left in the bottle!! I did cook one of his favourites, salmon, his veg and potatoes looked like bubble and squeak before it's cooked! He had a toileting 'accident' while I was cooking,which didn't help the 'ambiance' of the meal! but he did eat all his small meal. I think I will have to find old cards to put out in future it may cheer me up!!
Enjoy your curry
Lots of love
Debbie
And I made his favourite dessert, jelly and custard, only I just found it in the fridge!! Will have to keep till tomorrow now! Haha
Xx
Ha ha! I have wine left in a bottle because I had a couple of friends round for a meal last night ( they bought minced beef stuffed marrow with them as they have a glut of marrows on their allotment) and they opened three bottles of red and a bottle of white. I wasn't drinking much as I don't get a carer Saturday night and as they didn't leave until 11.30, knew it would be a late one. So I've actually got 2 bottles with about a glass in each.
You can guarantee C will have an "accident" just as I sit down to eat. The sound of cutlery on my plate seems to act as a trigger.
Salmon with veg is one of my favourites as well and C's. It's a shame he can't eat it any more and I often wonder what he thinks when he smells mine cooking.
Sleep well tonight.
X
Yes as soon I do something...I don't care how quiet....Usually eating or going to this site... the request for my presence is always made known....
I would be wishing I could still eat as I used to
Oh, yes. Hugs to you, myjual.
Dear Debbie,
I so wish I could make things better for you, the anniversaries, birthdays etc are so hard on your own. I also feel very lonely and on my own these days, a couple of years ago I wouldn't have done the things I do on my own now, I hadn't got the confidence but goodness how I've changed now!
Sending you both my love and a big hug....Pat xx
Thank you xx
Oh Debbie, I'm so sorry for your sadness. That is a lovely photo of two beautiful people becoming as one. I hope tomorrow the sun shines for you. Sending you Lots of love, Nanny857 xx
When you wake in the morning we are still all here.
You and your man are part of this community... and you are both loved.
I get up in the morning while my sweet is still sleeping... the house is quiet and I think of the loneliness to come. It's so empty.
I go and give her a hug and a coffee as soon as its time to wake her.
So, I guess I may know where you are coming from a little.
It's a hell!
Good morning, and you are not alone... You and I have friends here.
Hugs
K
Debbie it is very lonely, this horrible illness is the worse thing ever, you both look so lovely and happy, PSP can't take those memories away. Hope tommorow is a better day for you both xxxxx
Like the others I know exactly how it feels. I think the idea of putting up the old cards is a good one. Chris always got me cards.
Its so lonely, isn't it ? But, as nanna B said we are lucky to have known a loving relationship and have memories to treasure.
Big hug, Debbie, from Jean xxx
. I agree with Showdaddy. there's little consolation. And the special days are even more painful...That's why it's good to be here.....We are or have been and most definitely will suffer what you are going through now...Just know we feel, have your pain. Like Heady said, give him a kiss and a cuddle...and a cry somewhere by yourself.....then when tomorrow comes around things will get a little bit of their color back...and youll pick up where you left off before the wave of sorrow....You're probably asleep by now so let me just conclude with, have a great day maybe the sun will be a little more bold today...
With many empathetic hugs,
AVB
DItto Debbie our 49th last Friday .I signed cards for both of us and bought flowers but I guess it was mostly for my benefit .Doesn't get any easier does it .
Georgepa
Lovely photo. Happy Anniversary. Sending a big hug. X
I make cards as I hobby, maybe I should make one for me and give it to him to give to me!!! I could make sure the sentiments were just what I want to read ha!ha
Debbie x
Love to you Debbie on this Anniversary day and wishing that you had so much more today!
Denise xx
Hang on to this memory. The photo says it all to me and to others. Please take care of yourself. I know, I know.
Cuttercat
Noella21
Oh Debbie I hear you. You look like such a lovely couple and so young compared to R and I. We celebrated our 50 th last August. R was not interested when I tried to arrange a celebration with our three children and 15 grandchildren. Some times it feels like we live In parallel world's not being able to connect yet living side by side. I arranged a train excursion in an old steam train complete with a train robbery by masked bandits and live entertainment on the train. Our destination was a little town straight out of the old west where a lovely buffet was sered. My husband sat in his wheelchair no emotion showing on his face through the whole thing.I felt that I might have taken a couple of sacks of potatoes in his chair instead . The grandchildren however are still talking about it and will always remember it. And so will I. The pictures we took are a nice memories I will take those out this week on our 51st. And make us a nice supper if I can bring myself around to it. This PD sure try to suck the joy out of everything. I refuse to let it. Yesterday my husband laughed! We were watching British sit coms. He kept looking at me to make sure I was laughing too. For a whole hour my life felt normal.I made up for all the times I want to scream. I know will continue try and find these moments for both of us. Blessings to you and hope you also will have many such moments to remember .
hi deb
if it is any help to you what i do now is at birthdays anniversaries and christmas is say to rog we are going together to choose our respective cards to each other. ok not ideal but stops this torture we have all put ourselves through.
like you we are the younger end of the spectrum so have had no real retirement straight into caring.
i promise you will learn to accept it is the illness they can't help it, call it a calmness.
the hospice have been invaluable in this having very difficult conversations in a professional manner.
much love
julie
Maybe going shopping together for cards/pressies would be marginally better than 'buy yourself something'!!!
Yes I feel 'sorry' for us, as robbed of the retirement we'd worked hard for, but I guess it wouldn't be any easier whether he was 45 55 65 or 75, it would still be the same cruel illness, well that's how I try to look at it when I'm feeling sorry for myself, which is at least once a day
Thank you Julie
Love Debbie
Xx
Oh Debbie, wish I had some fairy dust to help what should be a special day be a reality, so tough isn't it? I think that loneliness you feel is so awful when the person you have shared the good times with is actually there sharing your home and you feel as if they have gone. My councellor called it anticipatory grieving, when she said it I thought that is exactly sums it up. Sort out the cards as nannaB suggests it might help to remember the good times rather than focus on the present.
Love Kate 🍷🍸💐🍷🍸💐🍷🍸💐 and maybe🍫🍫
xxx
Thank you Katie, I was looking at our wedding photos, one of us with my mum and dad, and one of us with our best man and his wife, (our best friends) all 4 of those people have died in the last 3 years, and F is so ill, it's all so sad
How's Ben?
If you find some fairy dust sprinkle it on all of us
Lots of love
Debbie xx
Dear Debbie, such a lovely couple you two are. I guess all one can do is look back at the best times and be thankful we had them, as some are not to fortunate. Wishing you both the best, take care and many hugs. Nettie
Oh I feel for you. It has been so long since my husband remembered our anniversary day or my birthday etc. He goes to Day Care where they celebrate special days and they have a little store where you can buy cards. He totally missed our 59th anniversary in June. Last Valentine he brought home a card for me "Happy Valentine Day to my MOTHER!" and last week I got a birthday card "Happy Birthday to my MOTHER"! My birthday is in September! I'll take whatever I can get. In his subconscious he remembers but I guess he is off on the date and who I am (not his mother) but it is so lonely on THE day. This horrible disease takes away the affection in a marriage. It is so sad. I do hug HIM on his birthday and on our anniversary, however. Keep loving him. He is there!
Heady• in reply to
It's alright, S once bought me a birthday card, " Happy Birthday Father" that was before diagnoses!!! Liked the picture, didn't bother to read the words.
Lots of love
Heady
And my heart melts when he has a little cry because I'm upset and not coping,and he can't help, but CRYING IS MY JOB!!
Xx
Debbie what a lovely couple you make, I know its not easy , but try to remember the good times. Its the lonlieness that makes this so hard. Thank you for sharing your special day. Its our 7th next week and 4 of these years spent fighting this . love May
Great photo of the two of you! We are all drinking wine with you Debbie. Here is to you my friend--Cheers!
It is strange but now that my guy is ill with PSP, the words that always cross my mind are the traditional wedding vows..."in sickness and in health, to love and to cherish, till death do us part." They sure do make sense when there is an illness. This is the test of TRUE LOVE!
Hang in there Deb.
XOXOXO
Nikkie
Not what you're looking for?
You may also like...
29 Years ago today ...
Today my husband and I celebrate 29 years of marriage, and I found this beautiful picture of sweet...
5 years ago
It was five years ago today that I lost my Steve not a day goes by without me thinking of you Steve...
Daddy, my daughter and me just 3 little years ago 9-13
Daddy had not been correctly diagnosed at the time this pic was taken in Sept of 2013, although...
12 months
A year ago yesterday I officially retired to become a professional caregiver. Not sure how...
Four Months Today
We were married in the 14th of March and my hubby passed away on the 14th of December, his funeral...
Routine visit with neurologist today - different diagnosis?
5 years later...
1 year today
