It is what it is.

[Kevin_1]

Forget "Keep Calm and Carry on."

For me:

"It is what it is."

And this might get annoying... I am trying to convince myself!

Get up early - tree felling today... second toileting of the morning and Liz is struggling so much just to move... Heart breaking.

"It is what it is."

Get some breakfast... and a large pot of black tea... My great treat... good Chinese Keemun from an importer...

"It is what it is."

New neighbours lying and trying to pass property development costs onto me... Deal with it... They are now paying.

"It is what it is."

Tree to come down on the border between us because of their foundations... set it up and supervise the felling of a lovely tree... make sure the bird box with blue tit chicks is located close by and the parents did return to the nest...

"It is what it is."

Another neighbour lost his job after a takeover at age 59... too specialist and lost his pension in the deal... He lost his wife to cancer two years ago... Sit in the sun in the former neighbours garden (they have not moved in yet) trying to support him and gently suggesting that spraying their garden with glyphosphate is not one of his better ideas.

"It is what it is."

Tell Liz to hit the door bell if she needs me I have a portable unit and she can always get me like that... carry a load of tools to the now gaping fence (tree now down) and start to make repairs for securities sake... Door bell goes after thirty seconds... walk back to the house... Liz says, "Good, just checking its working." Go back to the fence, door bell goes... Walk back to the house, "I want the loo."

"It is what it is."

The upset, glyphosphate wielding neighbour sits with me while I make repairs to the fence. He goes very quiet... after a while I look round. He's watering their garden with glyphosphate again.

He seems happy.

"It is what it is."

I go back to the fence. They really were nasty to him and well he's a lovely guy...

Fence nearly done.

Plant a fig tree in the gap too... They have a new baby and I like the idea he will toddle up and eat figs on a sunny day.

"It is what it is."

Knock out a quick turkey veg rice dish for Liz and cook all of the broken rhubarb the tree fellers demolished.

More toileting.

"It is what it is."

Carer arrives to put Liz to bed... She is almost hysterical. Another PSP patient almost choked to death on her this evening. Sit her down and feed her chocolate whilst she feeds Liz the rest of her meal.

We both get Liz to bed, they are the second carer short tonight, again.

"It is what it is."

Come down stairs and sit with a beer.

Three minutes go by... doorbell goes... "Can I have some cream and pads please?" says a smiling Lizzy!

I'm sitting here thinking:

"It is what it is."

You know I have had a glorious twenty minutes sitting here in the quiet of the night.

Lovely, but,

"It is what it is."

G'night all... bet you get the same.

XX

[Hidden]

How very very strange, just this past week I was out making some fence repairs. Dad has a wireless doorbell too and he hit it more then a few times for various needs, more water, bathroom, etc. I do like the short "down time" after he is in bed and I can just do nothing for a bit.

Ron

[Kevin_1 in reply to Hidden]

Hi Ron

Yes, this short down time is magic!

We generally have really great neighbours... These folk are young inexperienced and think they are being smart... They'll grow up in time, or not.

I'm sure you've seen it!

Best

Kevin

[abirke in reply to Kevin_1]

Forgot to tell you K1 that my daughter fought and won for the tree that was growing smack between the border of the newly bought field next to her home. A beautiful tree; around when the civil war was! I don't knwo how she does it but she wins her cases...she not a lawyer...but she is a ballbreaker....sorry .....you know what I mean, don't get her mad she will fell you like that tree......

I;m sorry yours came down and as old as hers it I pray that hers dowsn't come down on her house...big and beautiful and old

AVB

[Kevin_1 in reply to abirke]

Hi AVB

Gosh a tree from the Civil War period. That's something to be sad about. This was just a Lawson's Cyprus about sixty feet high. Nothing too special, but it gave the garden height. The garden will get more light now though.

Chuckles - Its good to be a fighter sometimes. Good for her.

Hugs

Kevin

xx

[Amilazy]

Good on you Kevin well done dealing with the variety of tasks in a day. I had similar days but lucky with my neighbours have a good night Tim

[Kevin_1 in reply to Amilazy]

Thanks Tim

I did skip the bits where I just wanted to scream... Chuckles... but that is what that was, eh?

One day I might have a modicum of sagacity... But in this turbulent world I will settle for a little less.

So glad to hear from you.

Warmly

Kevin

[Tillyhugs]

You have a fantastic way with words Kevin

Take care Tillyhugs x

[abirke]

It is what is my friend.....

And I know he's living there he loves me to this day, I still can't remember when or how I lost my way

( a verse from Cortez the Killer, Neil Young) If you like good rock ........it's good....I'm going to have my kids throw me over the bridge to that song (and several others ) when my time comes

It really is what it is.....but don't give up my friend

Love AVB

[Kevin_1 in reply to abirke]

Yes, I had to look it up, Cortez the Killer is very good.

I'm thinking of having ,"Fool on the Hill, and Hotel California"

Thanks AVB - I'm hanging in here.

Love

Kevin

[abirke in reply to Kevin_1]

Cortez mostly for the instrumental...the words don't apply but boy does Neil know how to play a mean guitar

I love your selections the words DO have meaning we just sit perfectly still till our world starts swirling around .....Welcome indeed to Our Hotel....PSP!

AVB

[jillannf6 in reply to Kevin_1]

RR E IWTH AVBZ, K

LOL JILLXXXXX

[Yvonneandgeorge]

Kevin you do have a way with words you made me smile, horrible when your neighbours and not very nice, look the bit about the fig tree, we have got one in our garden, don't know how long it take to have figs? Love a bit of quiet time when George has gone to bed, so relaxing. Well sweet dreams Kevin and hopefully Liz, if you don't sleep Kevin, it is what it is xxxx Yvonne xxx

[Birdman34265]

Nice words Kevin,it is what it is,i too have a pager off ebay which kath calls me,she still uses the walker,but for her it like trying to stand on a bowling ball, for me its like a avalanche of emotion, but you have a job to do and you go into auto mode and do it ,all the best Peter

[Kevin_1 in reply to Birdman34265]

Hi Peter

Doing it like a job. That's a very good way of looking at it.

Thankfully we are past the scary days of falling of the walker.

Wishing you both the best

Kevin

[Stevewithpsp]

Will respond tomorrow if I can get my hand to relax from a twenty hour spasm. You arry hero, bro!

Steve

[honjen43 in reply to Stevewithpsp]

Sorry about your cramped hand, Steve. I had a cramped muscle in my back and found that to loosen it, I needed to tighten it a bit more. Then it miraculously and blissfully relaxed. Physio said this was the way to go!

So try. I hope it then will let go and give you release.

Hugs

Jen xxx

[Kevin_1 in reply to Stevewithpsp]

Oh, Steve

That sounds horrid.

Hope it's eased.

Best

Kevin

[Satt2015]

Aww Kevin!! Wow I think you my darling had somewhat of a stressful day! And I know I shouldn't but I did laugh when Liz buzzed just to check it was working! So very typical don't you think? I hope you managed to finish that beer and equally hope you get a jolly good sleep tonight!!

Here's to a better day tomorrow but you know what, if by any chance it isn't a better day, it is what it is!

❤️ X

[jzygirl]

Just to let you know I always quoted doris day.. que sera sera. As much as we send ourselves potty trying to change things we can't.

I am sad about your tree and perhaps there could of been a compromise instead of losing it completely. There is a massive tree in my neighbours garden (on the boundaries and it does block the early sun) I would really like them to do something with it.... but my suggestion would be to top it by 15-20 foot not loose it because it is a place for the birds etc. Jane xx

[Kevin_1 in reply to jzygirl]

Hi Jane

When I was a child that song was on the radio all of the time. I pondered it so much. I also let Spanish Garden fill my head with roses and trellises. No, it had to go, they were putting in trench foundations to within 15cm of the trunk.

But now I have a chance to put a Fig Tree in.

It was a Lawson's, so not much use to wildlife excepting for shelter. A wooded track runs behind our garden. It was a Roman way. So lots of old stuff and teaming with life. Including local adolescents learning how to court in the summer.

Life goes on

Hugs

Kevin

XX

[Marie_14 in reply to Kevin_1]

Kevin

You can't be that old?!! Sorry couldn't resist. 😀

Hope you had a good night and are having a good day today. Love to Liz.

Marie x

[Hidden]

Hello Kevin.

You have dealt with so much .You are so strong and must rest sometimes which I know in your case almost impossible.

Your doing great hold on to the great man you are and all your care .

Take care and sending many warm kind wishes and hugs your way xxxxxx Miriam xxxxxxx

[Kevin_1 in reply to Hidden]

Hi Miriam

Thanks, but I do rant and rave too and sometimes my heart is just a pool of tears and I come to a stand still.

This year I am making an especial effort with the garden. I want Liz's flower border awash with colour and insects.

Thanks for you warm wishes and hugs... They mean a lot.

Sending you both the same.

Kevin

XXX

[Julieandrog]

Ooooh yes!

I have a weeks respite from next Monday and I am awaiting the dramas that might fall before, generally from the system not my end!

Suns shining, the frost did get my spuds!

Have a good one

Julie

[Robbo1]

PityB wants to stay up all hours, so I don't get a down time. As you said, it is what it is.

We've got a date for CHC assessment, early May. Any good ideas to add to the ones already given will be much appreciated.

B has lost over a stone since just before Christmas. Almost begging him to eat. We've got someone coming to discuss a PEG too..What a life! X

[Kevin_1 in reply to Robbo1]

No especial ideas.

Complete the DST score sheet over a few days adding to it as you remember things. Don' forget monitoring meds and getting them adjusted. Monitoring fluid intake, urine and keeping an eye out for UTIs'. Also constipation monitoring. Support with eating including the risk of choking. Lay it on about impulsive behaviour and risk of harm. If that's appropriate.

They will ask you when did something last happen. So be ready with an answer. They don't need dates.

Night toileting and pad changes?

Remember you are trying to make a case for Health Care as oppose to Social Care.

Finally discuss the scores and if possible agree on them, but make notes where you disagree.

We're up for review on Wednesday - I am dreading it.

Good luck.

XXX

[Robbo1 in reply to Kevin_1]

Thanks Kevin, all good stuff. I hope your review goes well. We have had a hyper day today, ending with a fall. Fortuitous? I think it may be the Hyacine patch that B has just started using. His eyes are much worse too, he was trying to eat tissue, thinking it was bread! X

[Kevin_1 in reply to Robbo1]

Oh, paper for bread, that must have been heartbreaking to see.

Sorry to be slow answering - I've been in a pressure cooker swotting for the DST.

I hope you got the Hyacine thing sorted. None of us can take too many days like that.

The DST turned out to be a review - the same as a DST (took three hours), we got the scores... a DST to follow at the end of the month. Same assessor so should be OK.

Hugs to you both

A very exhausted

Kevin

[Robbo1 in reply to Kevin_1]

So glad to hear, Kevin. I have been given cover for three nights to relieve my exhaustion. I am very grateful for it after only 4 and a half hours sleep in 48 hrs. B was totally off the wall and then went into a coma like state. He can't even remember the doc. coming to examine him. Eating and drinking now as if it never happened! X

[Kevin_1 in reply to Robbo1]

Gosh that is some roller coaster.

I do hope you get some decent sleep.

xx

[Kevin_1]

Sorry about the spuds

Still time to replant first and second earlies?

I just have half a dozen potato bags dotted about.

My big discovery last year was San Marzano Tomatoes. Italian plum. I'm packing the greenhouse with them this year.

Yes, the system. There should be adverts with a picture of sick junky type figure and the text. "I used to have a good life. Don't do caring. CHC can f' you up."

I hope it goes well for you both Julie

Kevin

XX

[daddyt]

It is what it is. When you can't win... you can at least grin (:

[Flemingc]

" It is what it is" has been my mantra since Mike's hospital stay in Feb. Kevin, you write so beautifully ... have you thought about a collection of your posts, a journal or diary of sorts of this journey with Liz and PSP? I think it would be meaningful to so many people. Just a thought. XO

Chris

[enzo501]

Kevin,

I'm in basically in the same boat.... I'm 67 wife 65...shes had it at least 5-6 yrs...(PSP) YOU my friend are a bad.ass carry on and always remember "it is what it is " No one ever told me life is fair ....jeff...head up!!!

[Hidden]

Hi Kevin.

I rant and rave all the time and cry all the time too so your not alone i promise you .

Gardening and all what's you are doing for Liz is magical for her and so sweet and kind and theraputic for you too at peace with nature and the wonderfulness of seeing nature flourish and so rewarding and positive and keeping a little sane for yourself which you so deserve with all your care love and energy to Liz you give .

This is beautiful for both of you .

Hold on to that .

Sincerly warmest hugs to you both Miriam xx

[gypsywoman1947]

Too right we get the same, but you've managed to make me smile for a bit. Xx

[doglington]

Just watching the bluetits outside the window.

Wish I was disciplined enough to grow veg. Chris used to grow lettuce, I'm sure I could.

It is what it is . True but I do rage !!!

love from Jean xx

[JantheNana]

Makes me laugh and cry at the same time!

It is what it is!

[Katiebow]

Ben safely put to bed by the carer at 9pm, he is almost asleep as his head hits the pillow. I sat with a glass of wine and watched Line of Duty and now am tucked up in bed, check video monitor before the light goes out. Hoping Ben doesn't wake in the middle of the night and call me but you never can tell. As you say Kevin 'it is what it is' and you just have to go with it. Sorry to hear you are having your peace disrupted by new neighbours, I'm sure that fig tree will delight the little ones.

Love to you and Liz

Kate xxx