Saturday night..........: I am here about to... - PSP Association

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Saturday night..........

Heady profile image
56 Replies

I am here about to explode! Don't know what know what to do, except talk to people who understand!!!

I have just cooked one of S's favourite meals and he is just ignoring it, like he seems to do with most meals these days. Still has lunch times drink by him, this afternoon's hot drink and special treat, a cake!

The dog has not stopped barking since dusk, ######## firework night!!! Can't shut him for love nor money, believe me I have tried!!! Bar wringing his neck, Don't think he will shut up, until his throat gives in!!!

Wine is barely touching the sides and I am trying very hard at that!!!!

This life is SOOOOOOO lonely! Firework night use to be fun! Even after I grew up, and the kids, I have always enjoyed seeing the night sky light up, but tonight, if someone else lights one up, I will not be responsible for my actions!

What can I do? Apart from pour another glass of wine, which I am going to do now!!!

Thanks for listening!!!

Lots of love

Heady

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Heady profile image
Heady
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56 Replies
nanonthenet1 profile image
nanonthenet1

Hi Heady, I'm here too feeling the same, no animals anymore but remembering the fun of it all oh, so long ago. but, we will stay strong and I say cheers with my glass of wine whilst listening alone to the noise, keep strong , do you have chocolate.....xxx

Heady profile image
Heady in reply to nanonthenet1

Oh yes!!!

Lots of love

Heady

jzygirl profile image
jzygirl

Oh heady a few deap breaths while you pour another glass of wine.

My Brian goes through stages where he doesn't want to eat (normal) food and when he gets like that i give him curry flavoured stuff. 2nd plan of action is puddings.

I do know that the taste buds do get a bit screwed up with the psp also it doesn't help if they have excess saliva that does affect the taste of food as well. A friend of ours had cancer of the larynx and had a major op and he said it affected his taste so he started haveing extra salt on his food to jazz up the taste.

As for the dog get some bach rescue remedy that will calm him down either that or give him a glass of wine (just a thought). Janexx

nanonthenet1 profile image
nanonthenet1 in reply to jzygirl

I made a Thai curry tonight....it brought a smile....xx

jzygirl profile image
jzygirl in reply to nanonthenet1

We have come to a compromise now he can have a curry every other day and if he is lucky he can have chilli on a non curry day. Its suprising what you can add curry powder to (i hate curry).

Janexx

Heady profile image
Heady in reply to jzygirl

Hi Jane, I forgot, Ollie is partial to the odd glass, knocked a few over and cleaned the carpet!!!

I don't know what it is with S, he can eat fine, have to chop his food up now, has finished what I put in front of him now and has ate his cake,

but I can't remember the last time he ate hot food!!! Use to love curry, but is not bothered anymore!

Thankfully, fireworks seem to have stopped, so dog quiet at long last. Gee, this has been a long evening!!!

Lots of love

Heady

easterncedar profile image
easterncedar in reply to Heady

Hi, heady! I'm with you! No fireworks, but you can't imagine, ha of course you can, the messes I've cleaned up this week. Meant to come to the farm last night, I came home from work to find him on the floor under a kitchen shelf unit and all its contents, including the phone ripped from the wall. So I hauled him up, cleared up the mess, gave us both a scotch, one much stronger than the other, guess which, and ordered Thai takeout. I said we'd get a fast start this morning. I was ready at 10, when he went into the bathroom. He would Not let me help. Two hours later, after many attempts to get in, him insisting I leave him alone, I found him fallen over the doorway. In the middle of an amazing horrible mess. Dragging him out, getting him clean enough to move at all, then upstairs to the shower, reclothing him, getting back to a chair so I could tackle the mess, do the laundry, disinfect everything, change my own clothes. Finally on the road in the early afternoon, with just time enough before dark to build a fire and empty mousetraps. And bake him some cookies, because sweets he will always eat. Ale for me!

And there's no one outside this community I would share that with, so here's to us all (raises glass). Nice not to be truly alone. love and hugs, ec

Heady profile image
Heady in reply to easterncedar

Thank EC! Tonight has been the pits!!! I knew I could rely on on all of you to understand.

But what do we do? How do we cope? When is enough, enough? There is only soooooo much wine I can drink!!! I know the saying, "tomorrow is another day". But what is that going to bring, except more of the same!

God, I feel sorry for myself tonight!!!

Lots of love

Heady

peterjones profile image
peterjones in reply to easterncedar

hieastern cedar well mate i have no troubles compared with yours mate I am sorry that mrc gave you so much trouble matey he didnt mean to, he was just trying to be independent which i know can be very frustrating my wife just goes off to bed now with the last warning for the night'' well mate your on your own now so if you fall over you will have to stay there until the morning''thats very comforting i can tell you '' pride cometh before a fall '' so they say matey well I was just going out the front door yesterday andi turned around to lock it and over I went she literally shook me and said why dont you look at what you are doing i just grinned at her

which did not help matters at all but mr c you will

have to get your act together or else you will end up in he dog house LIKE ME MATE I hope that you all have a very nice day take care peter jones queensland Australia very nearly lost it again

but its up and running now matey so see yer matey

asndf anybody that missed the fireworks should have come to my house yesterday with my wife there was plenty going on here I can tell you!!!!!!!!!!!!!!!!

Heady profile image
Heady in reply to peterjones

Oh Peter, what would we do without you!!! Your poor wife, if S smiled at me, while flat on the floor, because he had done something stupid, well, he would still be there,!!!! Perhaps you still are????

Lots of love

Heady

in reply to Heady

Good one, Heady! LOL

easterncedar profile image
easterncedar in reply to peterjones

Mr ec smiles, too, to reassure me, and I appreciate it. I know he's trying hard as he can, and the loss of privacy is so hard for this proud man, bless him!

easterncedar profile image
easterncedar in reply to peterjones

You are right as always, Mr. Jones! I know how hard he works just to stay upright and put one foot more or less in front of the other. Heroic, I think. But the psp really wrecks the impulse control and makes it impossible to count on him avoiding trouble, and I AM tired of my own voice, saying do this don't do that. He is, too, of course!

abirke profile image
abirke in reply to peterjones

Oh boy Peter You really know how to light things up! I was just thinking of you and Mrs. Jones, yesterday. I was looking at train rides B and I could take. I told him about you taking your ride ( Months ago, I read him your post about you falling on the lady etc! [that was too funny]]) He said NO to all of them making me more lonely and stuck than usual . But he finally said yes to a day trip! It's on the Arkansas /Missouri line that takes us through Boston Mts. (a small range in in north Arkansas breaching Oklahoma and Missouri as well.)

So yay maybe dad will find some nice old lady to plunk down on as we wield along the tracks to Fort Smith....Surely somebody needs funny story like that to entertain the family on Thanksgiving or Christmas!

Next time let the wife lock the door!!hahaha

AVB

easterncedar profile image
easterncedar in reply to abirke

I hope you have fun on the train, with or without extra escapades. We did a day trip along the coast a couple of years back and loved it.

in reply to easterncedar

It sounded like I was reading a terribly familiar story...and then I realized why. It is my greatest fear to come home from work and find him on the floor. Bless you and I am glad he was all right. And I tip my wine glass to your fortitude. I would have said forget the cabin and cried, to myself, through the clean up.:)

easterncedar profile image
easterncedar in reply to

Oh, I know! It scares me to death, or used to. It's becoming commonplace now, although last night's damage was rather shocking. I try to steel myself as I come up the walk, wondering what disaster awaits, and I'm so happy when he calls out "Hi!" I've found him on the floor six times this week, as I've come in the door. (I come home at noon, too.). He always tells me he is fine, hasn't been down long. And I try not to fret too much about the smashed things. Just clearing out the clutter for me!

(I did weep over the flooding after the toilets cracked, the second and third times. That makes me feel so hopeless.)

It's hard to work and do this, isn't it? I just can't see how I can quit, but I may have to yet. You are retiring at the end of this school year? I admire your fortitude, too, jmhk. Hang on! Love, Easterncedar

abirke profile image
abirke in reply to easterncedar

HUGS TO YOU {{{{~}}}}, God bless us all!

easterncedar profile image
easterncedar in reply to abirke

Thanks! The hugs really help!

in reply to Heady

Ds tastes are changing too. He goes up and down. Won't want anything homemade for weeks and will eat one serving of something he used to love and refuse to eat any leftovers.

But will sit and eat a bag of chips at one time.

Hang in there, Heady!

abirke profile image
abirke in reply to Heady

Good night, Heady

gypsywoman1947 profile image
gypsywoman1947

Oh bless you , sending hugs and sympathy x

nanonthenet1 profile image
nanonthenet1

seems to be getting quiet here too....ahhhh, ...oh no....big bangs again....earplugs needed, goodnight , xx

Doglinton profile image
Doglinton

Oh, Heady. I know that feeling !!

At present C is eating well but with lots of salt.

But I just said to him that if he can't acknowledge he has heard me speak I will stop talking to him !! Of course I won't but it is so hard being always understanding.

I am on my 3rd G & T watching the remembrance service, tears streaming as we listen to Amazing Grace.

It gives us both permission to cry without feeling self indulgent !!

No dog . so fireworks not a problem.

I wish I could make it better for you and us. Its a b***** !

love, Jean x

vlh4444 profile image
vlh4444 in reply to Doglinton

I agree Jean it is soooooo hard to remain understanding. Youngest daughter came unexpectedly tonight so have actually had a nice evening - drinking wine, watching X Factor!!!! and having a reasonable conversation, all quite a novelty (except for the wine). Cat traumatised by the fireworks though.

Vicki x

Heady profile image
Heady in reply to vlh4444

Lucky you! My daughter does that occasionally, it's just what you need isn't it!!!

Lots of love

Heady

Doglinton profile image
Doglinton in reply to vlh4444

Our youngest has been staying with us. Great. But now he is away and we are alone together and it hits hard. Like Heady says we know its all still there tomorrow.

Jean x

Heady profile image
Heady in reply to Doglinton

Why do they not even acknowledge that they have heard us? that bit I don't get! I undestand that he struggles to talk, if at all, but to not even show ANY sign of hearing, is so soul destroying, when you know they can hear!!!

Hopefully, S and dog are asleep now, To be perfectly honest, I don't care, as long as they are quiet!!!

I am going to sit here, enjoy the peace and quiet!!!

Lots of love

Heady

easterncedar profile image
easterncedar in reply to Heady

My sweetheart asked me the other day if I thought he was "fading out." Heartbreaking. He knows sometimes he isn't responsive. Other times he's there giving me all kinds of argument, so we are okay so far...

abirke profile image
abirke in reply to Doglinton

I forgot to ask, What is Fireworks Day...Night?

AVB

Heady profile image
Heady in reply to abirke

Firework night is to commemorate Guy Fawkes being burnt at the Stake on the 5th November, after trying to burn down the Houses of Parliament, many of hundreds of years ago. We now let off fireworks as well!!! All jolly good fun, potatoes cooked on the fire, with sausages or marshmallows. Mostly now, we have big public displays of fireworks. When I was a kid, every household use have their own party!

Lots of love

Heady

abirke profile image
abirke in reply to Heady

Oh I will have to Google Guy Fawkes...I take it this man was an enemy of the King/Queen , but a friend to the people of England.....Hey I don't even know htat much about my own gov't....but thanks for giving me something to do .....and maybe even talk to my hubby about !

And the family celebration sounds warm and happy and yummy....minus the little scared yappers that is!

AVB

abirke profile image
abirke in reply to Heady

Just looked up this man! So he was an enemy to the King AND the people...who were protestants, that is!

Just think If he and his fellow Gun Powder plotters had succeeded, we may not have the KJV Bible today!

AVB

Amilazy profile image
Amilazy

Oh Heady it's days like this when we need each other to listen to.

Fireworks not a problem here must have been set off earlier though rain could be helping. Hope S has some grub soon.

Enjoy your wine have one for me, I'm remaining sober in case I have a hospital trip.

Best wishes Tim

nanonthenet1 profile image
nanonthenet1

Sending my love to you all, goodnight, hope tomorrow will be better xxx

Nanny857 profile image
Nanny857

Hi Heady, of course we are listening, hope you get to enjoy that 2nd glass of wine and the fireworks have ceased. Maybe tomorrow S will feel like eating your lovely meals. Nanny xx

NannaB profile image
NannaB

Oh Heady. It's times like this I wish we all lived in a commune where we could give each other a hug and find something to laugh about. I hope, by now, the dog has calmed down. We live near a recreation ground and the council pay for a firework display every year. For 12 years we had a rescue dog. She was gorgeous and would sit at C's feet while he worked from home. Fireworks terrified her. She didn't bark but squashed against our legs trembling violently and foaming at the mouth. We tried lots of different remedies but she was the same every time she heard a bang. She died in May 2010. C was diagnosed in September 2010 and we went to the display in November, the first one for over 12 years. We both cried all the way through the rousing music and loud bangs. We were both thinking of our lovely Rosie who we missed so much. That was the last time we went as by the following year C was too unstable and it's too muddy for a wheelchair.

There isn't really much you can do if they refuse to eat unless they want a PEG. It's hard Heady but you are doing your best for S and you can't do better than that. I hope by the morning both of you will be feeling more positive and that the dog has worn himself out.

Sending you a big hug.

💐 xx

Heady profile image
Heady in reply to NannaB

Thanks NannaB, we had two dogs, some years ago now. One was terrified of fireworks, shaking, frothing etc., but my "sweet little baby" has just barked non stop!!!! I can cope with fear, but this noise is unbearable!

S Is still eating normally, just refuses to eat it, when I put it in front if him! Takes so long, to even pick up his fork, but will eat it eventually, I have asked if he wants me to feed him, but No! I just don't know what is going on. Because he can't/ won't talk anymore, I am at a loss.

You are right about the commune, wouldnt it be great! Though rather messy, as I am sure somebody would be volunteering to open another bottle of wine, to cheer me up!!!

Lots of love

Heady

Doglinton profile image
Doglinton in reply to Heady

The commune sounds great but we'd all be roaring drunk !

We could have a rota and take it in turns to be sober !!

love, Jean x

NannaB profile image
NannaB in reply to Heady

I don't think you would be the only one drinking it. C went for a few days eating little some time ago, trying to feed himself and giving up. He wouldn't let me feed him but one day he said yes to my question and can't get enough food now. He is probably realising he is getting worse and trying to figure it out. Does he have it cut very small and mashed? Chewing gets very difficult and it's just all too much. If he can tell you it would be easier but it's hard when they don't speak. I've said before somewhere, when I asked C if he had answered me in his head, he said yes. It must be so confusing for them. I hope S starts to eat soon.

Multi tasking at mo. 5&8 year old grandsons stayed over night. Croissants warming in oven, C in shower with carer. I'm the second carer so help with transferring and dressing and putting convene on( they come off when carers do it). Timer for oven peeping.

Have a good Sunday.

X

Auddonz profile image
Auddonz

I know how you feel Heady. D spends the day sleeping most of the time and I am beginning to wonder of the med is doing him any good. We don't talk. I feel very lonely to. Think I will call the Doc on Monday again and talk to her about the med or is it the progression. His walking is very slow and shaky. His speech is changing. I am with you.

Lots of love back,

Auddonz (aka Audrey)

Folliott profile image
Folliott

JIm cannot feed himself any longer and conversation is non existent as he cannot speak except to mumble. It is as if his tongue is swollen and he can't form the words. He also doesn't acknowledge me most of the time and oh how frustrating and lonely. I long for the days that my best friend was at my side and we could laugh and talk. I was able to make him smile at least up until about a 2 weeks ago. He can no longer even do that. Have another beer! No think I will change to whiskey now. Too late for wine. Have a good evening one and all.

abirke profile image
abirke

I know how you feel. And too weird, B is not interested in eating much either. In fact, he has reduced his breakfast by half the amount. , lunches are small and dinner was relatively small....He used to eat alot.

Was never over wt. but could always eat seconds....Now he hardly eats firsts. And as for the libation. It was my only friend till I realized it was my enemy.....but enough on that let me find some words of cheer, Oh I know , You don't have to worry about your lil pets singin' voice, if he's anything like the dog down the street, it can bark full on all day without any seeming diminishment from pain of over usage or the full on screaming to "shut the ######## up" by the neighbor lady down the street!!

In 3 to 5 years your dog will be used to Fireworks...or You can go to your local doggie dr. and get a sedative for the little four legged basket of nerves, tell doc to throw one in the bag for you!hahaha! And I to am lonely But at least you have a clean house...I sit here in my hovel each day wondering how to make this the living space I want! I wish I could just take a blind fold to it and throw it ALL OUT! Oh It's 10:47 PM and dog is barking at something......One thing I do appreciate about my dog, it's not much of a barker....a few "hey you there's " and she's done yapping.....Though Fourth of July is still menace Has'nt hit that 5 year mark yet!

Well hopin Your day is not Ruff tomorrow,

AVB

peterjones profile image
peterjones

well heady I have just written u a fairly long em mate but I got to the end and i lost it this seems to be the story of my life have you heard that song the story of my life Michael Crawford sings it mate a probable tear jerker mate but I like it now down to business would you know how to retrieve these letters I keep losing and have to type again with my one finger or anyone with puter savy if anyone could help me solve this problem I would be much obliged but no puter jargon please mates

just straightforward plain English will do fine thanks peter jones queensland Australia psp bloke

Heady profile image
Heady in reply to peterjones

Sorry Peter, got no idea! I think the cancel button, is too close to the submit reply one, so be VERY, VERY, careful pressing the buttons!!! Although, I must admit, when I lose stuff, it's because I have being scrolling down at the side! There must be a delete button hidden!!!

Lots of love

Heady

peterjones profile image
peterjones in reply to Heady

ok thanks anyway heady but its got me confused not that it takes a lot to do that now a days\\ mate have a goodone \\

day i mean not a glasss of wine peterjones queensland australia psp bloke

easterncedar profile image
easterncedar in reply to peterjones

Dear Mr. Jones, If you can type it in Word or whatever document program your computer has, you should be able to copy and paste it into a reply box here. I've done that when I have time and really care that my message makes it. is that something you can do? I agree with Heady, it may be that the cancel button is too close to "submit reply". Perhaps I can suggest that the site administrator look at the problem. Peace, ec

DenB profile image
DenB

Oh Heady,

I was only thinking last night about our life before CBD and feeling lonely too.

As I sat watching some beautiful fireworks over the back somewhere, from my patio Windows, (R was already in bed)and I was thinking that only a few years ago we would have been entertaining at our annual fireworks party.

There would have been our good neighbours, family and friends, drinking mulled cider and wine and eating curry, chilli, jacket potatoes,sausages,butternut squash soup, gingerbread and more , all of which I would have spent a couple of days preparing.

There would have been tealights in jam jars, lining and lighting the path up to the top of our garden and then after food and drink and a display of fireworks, we would all settle down around the glowing embers either singing campfire songs or taking it in turns telling ghost stories.

R would have spent a couple of days preparing for the bonfire and making sure there was shelter in case of rain on the night and placing lights around the garden so that once it got dark it looked spectacular and spooky!

We would have been there last night,in that huge perfect garden for bonfire night parties and enjoying and sharing all of it, if it wasn't for CBD!

Instead,I was sitting on my own,looking over my now tiny garden, with misty eyes and watching someone else's fireworks in the background..........but with a glass of mulled wine In my hand and remembering...........

Dx

Heady profile image
Heady in reply to DenB

Life sucks, doesn't it!!!!

Lots of love

Heady

easterncedar profile image
easterncedar in reply to DenB

Oh, DenB, What lovely parties you have had. Just imagine all the happiness you created for yourselves and your friends. Nice. Very nice. I enjoyed imagining the scene as I read your post. Thanks for that. Peace, Easterncedar

peterjones profile image
peterjones

well denb at least you have those memories to;look back on matey some people are, if only people\\ if only I had done this or if only I never had psp

well i say just live your life however long it may be to the full and enjoy

what you have left and your memories will stay with you for the rest of your life maybe a little bit dimmer but they are there for good so cheer up denb we are all in the same boat matey peter jones queensland Australia psp sufferer take care mate

easterncedar profile image
easterncedar in reply to peterjones

Well and wisely said, Mr. J!

Kelly55 profile image
Kelly55

I'd like to join this commune that's being mentioned ! I also think carers should get discounts on wine and other such essential items! Perhaps we should start a petition to remove VAT from alcohol and chocolate and tissues ! Haha

Hope you're having a better day heady, my mum slept the most settled night last night of any I can remember ! and today has been declared a pyjama day (by me) so I intend to slouch around doing little and ordering takeaway later. Hope today is a more relaxing one for everyone ! Nearly Christmas so can legitimately drink mulled wine all day ;) x

Heady profile image
Heady in reply to Kelly55

Where do I sign!!!! Pyjama day, that sounds good. I have spent part of my day in Counselling!!! Spent most of it blubbing, so no VAT, on tissues would have helped!!!

Lots of love

Heady

Kelly55 profile image
Kelly55 in reply to Heady

Always good to have a proper cry I think, need to let that emotion out! Counsellors can be valuable tools if you find the right one. I started crying the other day because I found one of mums old fountain pens! She used to love her writing and calligraphy, funny how it caused so much emotion to well up. Wine, takeaway and a good weepy movie usually does the trick!

Hope your feeling bit better now. Love & hugs x

Chrism2 profile image
Chrism2

Love and big hugs heady let it all out

Chris 😘😘😘😘😘

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