Bother another angry day: Not such a good... - PSP Association

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Bother another angry day

Kevin_1 profile image
107 Replies

Not such a good day the other day, or today.

When I get upset I make myself go into the kitchen and cook...

So the other day I decided to start working through some Rye bread recipes. I love rye bread!

The results were not quite like Elven bread, or even some delicate French offering.

But it tasted damned good... Just need a flute, or something, to make it come up a bit more out of it's snake basket!!

Oh, I do hope we can turn my lovely Lizzie away from her anger.

Very sad today.

Humour will keep me from crashing.

What do you do when the going gets tough?

Kevin

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Kevin_1 profile image
Kevin_1
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107 Replies
JCRy profile image
JCRy

Pray!

Play my guitar and sing.

Take the dogs out over the hills.

Go and sit on a rock somewhere.

Look at old photos.

Snack!

Sudoku or Scrabble

The list goes on.....!

Satt2015 profile image
Satt2015

Bless you Kevin!

Only one answer = 🍷 or for you 🥃 or 🍺 or 🍹

Also scream, cry, ring a friend that understands fully (that’s be me lol) or sleep

I’m saddened to read this and sending you a big fat hug filled with love x

doglington profile image
doglington

What else can she do with her anger ?

Chris was 82 and I think that changes so much. I know I would feel so angry if I was Liz !!!

Sorry for you, Kevin. I hope I don't sound unsympathetic but the price we pay for being loved is that we are the safe bet to dump on. She knows you really know her.

Big hug for you both. Its so hard I know.

Jean xxx

PS. I do suduku

Kevin_1 profile image
Kevin_1 in reply to doglington

Hi Jean

You are right, for three years she worked me over, in between being so very loving too. Yes, I was safe person on which to vent it.

I can deal with her anger, but she has taken to trying to hurt the staff...

I'm so frightened the home will terminate the placement or increase the fees, for extra staffing, again, to those levels which we cannot really afford.

doglington profile image
doglington in reply to Kevin_1

I'm so sorry, Kevin. I didn't have any of this with Chris. I hope they are able to cope. It must be so distressing to see her being consumed by these behaviours, so alien to the person you know and love.

Surely this most challenging behaviour is funded by CHC ?

xxx

Kevin_1 profile image
Kevin_1 in reply to doglington

Yes, we get CHC, but the home is an expensive one and we top it up. They don't really do dementia and behaviour issues. So she is jeopardising the placement.

At least she's upped her scores for the forthcoming review!

It's miserable to see her so unhappy.

Thanks for being there.

One day at a time eh?

xxx

I do my 15 minute workout which gets me my endorphin fix mellowing me out for a while. Most of the time that works. I can feel my craziness growing. Friday will be week since I last did the workout. I can go a week without one now. After a week it has to be done.

Kevin_1 profile image
Kevin_1 in reply to

I think I should adopt a work out.

Cheers Jeff.

Marie_14 profile image
Marie_14

Listen to sad music and cry! It's very therapeutic. You can do it while you eat your Rye bread? Unless you want to sing along in which case best avoid the bread!

So sorry that Liz is giving the staff a hard time. I suppose it's the only way she can vent her anger? She must wish it was all over Kevin? A clever woman locked in her own body. Hard to think of anything worse? Everyone suffers like hell but some just give in and die. Others try to fight back. Usually against the one they love. As you are not there 24/7 then she takes it out on those who are? I am sure I am stating the obvious Kevin? All I can say is how sorry I am.

Hugs to you.

Marie x

Kevin_1 profile image
Kevin_1 in reply to Marie_14

Thank Marie - You are so right.

:(

raincitygirl profile image
raincitygirl

Dear Kevin,

Oh, that emotional rollercoaster...😔. You love your wife, you would do anything to reverse the disease for her - you cant - you know that, she knows that, you understand her anger - but all that doesnt stop the anger - aaauuggghhh!!

I went looking for something on the internet dealing with "locked-in" patients' anger: good luck finding anything...😳. But I did find a blog I thought Liz might appreciate: "I'm an angry disabled girl and sometimes that's ok" its well written and not too long. (Sorry I dont know how to copy t he link on my phone)

As to how do we cope? Removing ourselves when we can..long walks...wine...baking bread...praying for strength for those who believe in prayer...

I wish I could think of something constructive to do with my spouse's anger - the way the young woman above has started a blog - but he can't communicate.

Now where's that wine?? Some rye toast would go great with it ...😉

Hugs XXX

Anne G.

raincitygirl profile image
raincitygirl

PS: Remember that time you were out with Liz and she directed you here there and everywhere? Is she better when she gets out? Does she get enough physical stimulation to tire her out? It sounds like she may have energy to burn? Any other way for to get (positive) physical challenge in the nursing home?

A.G.

Kevin_1 profile image
Kevin_1 in reply to raincitygirl

She has very little energy these days. I plan to bring her home more often. That will be a physical challenge for her.

Good thoughts - thanks

Khartt profile image
Khartt

Pray, cry, eat chocolate, call my mother, sew.... even if it's only a momentary escape ... oh, and blog with you all !! So sorry Kevin..

Zeberdee profile image
Zeberdee

I am sure you are a better chef than you give credit for so....Open a bottle And eat wherever And whatever takes your fancy. It hurts like hell when your loved one gives you a hard time but being unable to put into words exactly how they feel must be equally distressing. Thinking of you and Liz. Love Jxx

A big hug Kevin.

Luis

Sarah1972 profile image
Sarah1972

Oh Kevin I really feel for you. When sad I can’t/won’t drink as I know it just makes me few worse. I’ve started going for drives and dog walking as don’t really have anyone to talk to but I do find ranting on here and knowing that people are upfront honest caring and most of all understand the anger and sadness, I find it really helpful just reading the reassurance that others give.

I’m back at work now after getting the CHC funding and it’s great to feel like me again however I know that I will crash again and when I do, you will all be hearing from me 😳

Xx

raincitygirl profile image
raincitygirl in reply to Sarah1972

...and we'll be here for you ❣

A.G.

Kevin_1 profile image
Kevin_1 in reply to Sarah1972

Yes, I too don't really have anyone to talk to, excepting this forum. Most other folk don't know what to say.

Great that you got the CHC and are back at work :)

We're here for you :)

Limping a bit... but still standing :)

wear1947 profile image
wear1947 in reply to Sarah1972

Thanks Sara for your advice.

I will go back to work, too.

Elena

Kevin. I understand you perfectly.

I'm going through something similar.

At the moment we are trying CBD Oil but the results, for now, are not conclusive.

I try to distract myself but I feel very tired.

Hug.

Luis

doglington profile image
doglington in reply to LuisRodicioRodicio

I'm sorry to hear that, Luis. You are always so positive.

Hope things improve. Hug from Jean x

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to doglington

Thank you Jean.

Today a litlle better.

Hugs.

Luis

raincitygirl profile image
raincitygirl in reply to LuisRodicioRodicio

Luis, I'm sorry to hear this too. I echo Jean - you are always positive and practical, offering solutions and support. You clearly work very hard at it! It must be very discouraging to not get a positive result for your wife.

Hugs to you Luis, XXX

Anne G.

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to raincitygirl

Thanks a lot.

Hugs.

Luis

Kevin_1 profile image
Kevin_1 in reply to LuisRodicioRodicio

Hi Luis

I'm sorry your are faced with this too. I'm fairly certain that this symptom is PSP driven for Liz. She is relaxed after taking CBD oil, but still angry.

I feel a tiredness which comes from being emotionally wrung out after a Liz bad day. Is that how it is for you? (On top of the daily care demands).

I'm hoping the Citalopram is going to help a bit.

Microsoft keeps me pretty distracted... :(

Nothing like a PC issue to take my mind off things!

Wishing you the best Luis

Hugs

Kevin

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to Kevin_1

I believe that tiredness becomes more evident when the patient acts unjustly against their caregivers and does not cooperate.

Swim and swim watching the shore farther and farther and more unstable waters end up hurting.

I try to have outside life with friends and other caregivers (today we have a meal at the end of the course) but there is a low intensity but chronic fatigue that I do not know how to balance. Maybe taking CBD Oil too?

A big hug, thanks for your words and luck.

Luis

Megabrew88 profile image
Megabrew88 in reply to LuisRodicioRodicio

Luis,

I know exactly where you are, it’s fatigue and feeling unjustly treated when they become violent and hurt you physically that really get me down.

I have found out (by accident) that if my B doesn’t take his 4pm Co-careldopa tablet he is less prone to violence, as it normally occurs in the evening.

I’ve consulted the Parkinson’s nurse about it and she said it was ok.

Just a thought.

Mx

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to Megabrew88

A big hug.

Luis

wear1947 profile image
wear1947 in reply to LuisRodicioRodicio

Dear Luis, you have helped me a lot. How can I help you if I only have words?..

Try to work out, get up!

I know this little sadness working every day to sink our good mood.

Big hug!

LuisRodicioRodicio profile image
LuisRodicioRodicio in reply to wear1947

Thank you. Your words are wise and balsamic.

Big Hug.

Willow_rob profile image
Willow_rob

Ditto Kevin, I had a major meltdown just now when Mary failed to make the commode (again) and soaked the carpet, I wished her dead and now feel devastated. All she said was "you don't mean it" which compounded my shame! Rob

raincitygirl profile image
raincitygirl in reply to Willow_rob

Dear Rob - You need a big hug XXX I will bet there isn't one of us caregivers who haven't felt exactly the same at some point!

When I get exasperated and hubby says "I wish I were dead" - he isn't saying it because he hates HIS situation - it's because he feels life is frustrating and bad for ME and I'd be better off if he were dead!! (..or if he doesn't really feel that, he is darned good at using it as a technique to get me to quit being frustrated with him..!..) so I have to be careful about showing frustration. In Canada we have MAID legislation (legal assisted suicide) You better believe I don't ever want to be the one who prompts him asking for that!!

Ugh!! The crap we are forced to deal with because of this foul disease!!

PS: I'm pretty impressed with your wife ;-)

Anne G.

Kevin_1 profile image
Kevin_1 in reply to Willow_rob

Hi Rob

Yup, I've got the T-Shirt for that one.

PSP care can really push buttons!

Yes, the remorse and shame. Horrible.

Hang in there.

Best to you

Kevin

Yvonneandgeorge profile image
Yvonneandgeorge

Oh Kevin my heart breaks for you, I wish you get the lovely Liz back soon, I am feeling exactly the same George fell off the toilet today, then he was horrible to me telling me I didn’t care about him or his care, it really hurts, so I feel exactly where you are coming from. I hope the love of your life surfaces very soon, so you can feel loved like you love your Liz. Bread sounds delicious. Xxxxx

raincitygirl profile image
raincitygirl in reply to Yvonneandgeorge

Oh Yvonne...how maddening, eh?

Hugs to you too XXX

Anne G.

Satt2015 profile image
Satt2015 in reply to Yvonneandgeorge

Bloody hell yvonne! My heart goes out to you both! George won’t have meant what he said!! X 💋

doglington profile image
doglington in reply to Yvonneandgeorge

Oh, Yvonne. I remember Chris once saying I didn't love him. I said. I dedicate my life to keeping you as good as it can be. This is love !!!

You are living love and he knows it !

Jean xxx

Kevin_1 profile image
Kevin_1 in reply to Yvonneandgeorge

Oh, Yvonne

The falls are terrifying and gutting aren't they?

We had a few safeguarding interviews because of the bruises too. They came to nought of course. Too many clinicians just could not get the idea of impulsive behaviour and falling. They were further emotional roller coasters on top of roller coasters.

She has good and bad days... Sometimes she goes to extreme efforts and reaches out and takes my hand to kiss it. It takes her so much effort. Makes me tearful.

I hope you both have a better day today. I guess that's all we can ask for.

XXXX

Yvonneandgeorge profile image
Yvonneandgeorge in reply to Kevin_1

Big hugs back to you Kevin xxxx

Beads0122 profile image
Beads0122

Enjoy even the bad days with Lizzy. They are better than no days.

I cook also to brighten my spirits, but I’m with the others, a pint with a friend is probably the best medicine.

Wishing you brighter days,

Bobby

raincitygirl profile image
raincitygirl in reply to Beads0122

I've heard this from the other survivors, Bobby. It's good to be reminded of it now and then...XX

Anne G.

JCRy profile image
JCRy in reply to raincitygirl

There is always a rummage in a charity shop! Or is that just me?

Kevin_1 profile image
Kevin_1 in reply to JCRy

No - It's just you ;) LOL

honjen43 profile image
honjen43 in reply to JCRy

Me too!

Hugs

Jen xxx

Kevin_1 profile image
Kevin_1 in reply to Beads0122

Thanks Bobby - You are so right.

S'funny thing - I've got a slight hang over today... Can't have been the wine... ;)

I hope you are finding your way a little, but such early days.

Best to you

Kevin

honjen43 profile image
honjen43

I scream, crash pots and pans around in the kitchen and clean! Sometimes I walk and that is calming.

Liz can't do any of this! All she can do is rage at her Love!

You know this - but it still hurts.

I wonder if writing another post here would help her? That is, if she does not wring your hand to shreds with her anger!

Loud, wild, classical music too, helps me focus. Something wild - Symphonia Antarctica, Vaughan Williams comes to mind.

Big Hugs to you both

Jen XXX XXX XXX XXX

PS. Hope that party goes OK this weekend. Am going to try and gatecrash!

Kevin_1 profile image
Kevin_1 in reply to honjen43

Jen!

There is an ancient saying in Chinese literature. (Circa 400 years BCE) "And the old will bang and bash their pots and the village is happy." So true!

I've not heard of the Antartic Symphony - So I am playing it now... it's powerful! - Thanks for that. :)

Hugs to you Jen

We will get through this...

XXX

daddyt profile image
daddyt

I garden or paint... don't think I could bake bread anymore.

Kevin_1 profile image
Kevin_1 in reply to daddyt

Hi Tim

( Reminder to self) I must read your latest Chronicle.

Oh, I wish I had the aptitude for painting.

Hope things are going well for you.

Best

Kevin

Tippyleaf profile image
Tippyleaf

Dear Kevin

So sorry to hear what a painful time you are both having. I hate PSP . Some good suggestions from others wish I had pearls of wisdom to offer you but I am. sadly lacking.

When I think I can’t bear it anymore I go feed my sourdough starter, eat, make bread, play with the cat. What I want to do is run away screaming that life is so unfair!! But love just about keeps me here .

In between the storms I try to keep up with daily meditations , yoga, walking, listening to audiobooks. I really notice I am more screaming banshee without these. I hope that Liz can find a little peace and calm In this horrible storm that is PSP!

Sending you both a Big hug and lots of love

Tippy xxx

Kevin_1 profile image
Kevin_1 in reply to Tippyleaf

Hi Tippy

You are so lucky - my cats idea of play is sitting on top of me at 5.00 am quietly meowing and if that doesn't wake me up she walks up ad down on top of me until I give up pretending to be asleep.

Yoga and meditation sound great... I do mindfulness and active dreaming.

I've got a rye starter on the go at the moment... It packs a punch! :)

Banshee is such a good description of the states I could get into... It's horrible after isn't it... At times I just couldn't recognise my self.

Hugs to you both

Kevin

xxx

NannaB profile image
NannaB

Pray and eat, and eat and eat.....although I don’t have tough days now; which means I should have lost weight, but I haven’t. How I remember the tough days though and really feel for all here who are suffering, those living with PSP and those like you Kevin, whose lives have changed because of loved ones with PSP. My darling was never angry so my tough days were for other reasons. I had the results of my darling’s brain examination post-mortem which showed he had the very beginnings of Alzheimer’s. My mum lived with that for 15 years and went through a very angry stage peppered with moments of affection. She would lash out, scratch, kick etc and after threatening to stab me, thumped me in the back so hard I thought she had done it. From then on I was her cousin and her daughter was dead. Thankfully this period did eventually pass although it took a long time and she became a gentle old lady, although I was still dead to her.

When I read of folk with PSP being uncharacteristicly angry or violent, I do wonder if they may have Alzheimer’s as well or the same part of the brain is being damaged by PSP. I hope and pray that your dear Lizzy is going through a period of time that will soon change and her anger will subside.

Sending you a big hug.

XxxX

raincitygirl profile image
raincitygirl in reply to NannaB

Bev, there just is no end to the cruelty of neurodegenerative diseases is there?? I was so close to my mum...I can't imagine how awful that Alz experience would have been....bloody rampant tau proteins!!

Anne G.

NannaB profile image
NannaB in reply to raincitygirl

That’s why I’m doing what I’m doing now....what I want to do. 15 years of mum, followed by another 7 years of frail dad who was 90 when mum died and during those 7 years my darling was diagnosed. Dad died at 97 and my darling 3 years later. I survived so am making the most of what’s left.

XxxX

Kevin_1 profile image
Kevin_1 in reply to NannaB

Hi Bev

Gosh, you had it tough.

I'm so glad that phase passed.

This is a symptom of PSP for Liz, I'm pretty sure of that. Before PSP I only saw her angry once.

All I can do is hug her and love her and hope it abates.

Hugs to you

Kevin

XXX

aliciamq profile image
aliciamq in reply to NannaB

My husband couldn't remember what his mother died of recently - 😬She died of Alzheimers😕

raincitygirl profile image
raincitygirl in reply to aliciamq

uh-oh...... :-(

DeDeDickson profile image
DeDeDickson

“What do you do when the going gets tough?” Oftimes, I come here and find encouraging words from Kevin_1! 😉

I have so often thought about this when I react to Bob’s nasty words... telling myself to shut it out, pretend he just didn’t even say that. Occasionally, I can. Most times, I can’t help feeling the sting ... and the anger back at him when I know it should be at PSP.

I agree with all the 🍷🍻🍸 ... and also to keep coming here to let it out!

xoDorie

raincitygirl profile image
raincitygirl in reply to DeDeDickson

Absolutely Dorie!!

Cheers!

A.G.

Kevin_1 profile image
Kevin_1 in reply to DeDeDickson

Hi Dorie

Yes, it does sting. I'm better at not reacting now and throw love back to her instead.

Waiving warmly

Kevin

xxx

enjoysalud profile image
enjoysalud

Kevin, I'm sorry. This disease does not decide "when and how" it will act out.

I do know for myself that it is difficult for me to separate a person's behavior from the illness. I may know it cognitively, but emotionally I see the "person I love" intentionally attacking me. I think that's normal. With PSP we have to take a step back. Separate the person we love from the illness.

You and the staff are the people physically there. Her brain is causing her aggression and where else can she let it out? She is NOT intentionally trying or making a decision to lash out.

Remember, that you placed Liz because you felt a more "emotionally removed staff" would better serve her needs. PSP being what it is. I support you in that decision.

Try and put a new spin on the situation.......the staff is getting first hand experience in shifting moods. They are getting valuable experience. Liz is NOT their sister, daughter, wife, mom, family, but a patient under their care whose symptoms are being expressed.

If Liz were healthy she would be mortified to be told of her behavior.

I know you know all that I have shared. I am just reminding you. Keeping you in my prayers.

Margarita

Kevin_1 profile image
Kevin_1 in reply to enjoysalud

Hi Margarita - Reminding is good.

Thanks :)

Yes, she would be mortified. In fact she regularly is when she stops and thinks. That just makes her more miserable.

Y'know you have given me an idea. I wonder to what degree this is coming from fear as well. I shall talk with her and give her hugs on those lines today.

Thank you for the prayers

Warmly

Kevin

enjoysalud profile image
enjoysalud in reply to Kevin_1

i'M GLAD I did not annoy you with my share.

I agree that hugs as a FIRST, MIDDLE, LAST and INBETWEEN measure is brilliant.

Big hug to you.

Kevin_1 profile image
Kevin_1 in reply to enjoysalud

No Margarita - You have a good mind and a lot of insight... I do listen :)

And argue a little too... But you handle that soo well ;)

Warmly

Kevin

enjoysalud profile image
enjoysalud in reply to Kevin_1

Thank you for the hug back......it's gladly accepted.

LostinHeadSpace profile image
LostinHeadSpace

There's nothing like being out in nature during a day like that.

Praying.

Calling a person and saying, "May I just rant?" and then doing that.

Eating all the foods.

Animals--moggies and otherwise

Poetry

We are all rooting for you, Kevin and Liz. I still think that the birthday might be bringing up lots of emotion. The dates we set aside as happy times, which still need to be celebrated!--can often remind us of what we're missing. This isn't at all what you and Liz hoped for at this birthday. You wanted to enjoy together, and you're doing a 'bang-up' job of creating things for her to enjoy. But the marker of the birthday might be creating grief at realizing what she's lost. Maybe things might settle a bit later?

We're all thinking about you, Kevin.

Kevin_1 profile image
Kevin_1 in reply to LostinHeadSpace

Thanks Lost

Thanks too for reminding me about poetry... I love poetry, but forget to read! I shall try that.

Wishing you and yours a good day.

:)

JCRy profile image
JCRy in reply to Kevin_1

Have you ever thought of writing it?

Just an idea. You seem to have a richness in your care and experience.. x

Careenh profile image
Careenh

Hi Kevin. It's such a rollercoaster of emotions isn't it? I've found my release is to play my music really loud in my car and sing like no one's watching.... it's the simple things. Much love to you and Lizzie ❤❤

doglington profile image
doglington in reply to Careenh

So do I !!

You should hear my Bob Dylan - - -

x

JCRy profile image
JCRy in reply to doglington

Love Bobby D. Any Joan Baez?

doglington profile image
doglington in reply to JCRy

Yeah ! I'm just an ageing hippy really !

HilsandR profile image
HilsandR

The weather is lovely at the moment Kevin. If you are able to get Liz out in the wheelchair each day that may help. I have found with my husband, whose behavior can get quite challenging to say the least, that a walk in the wheelchair makes a big difference and I think it makes life seem so much more normal for him. The challenges don't go away but those trips out make him feel more a part of things. We spent some time in the Isabella Plantation in Richmond Park on Monday and actually had him laughing, a rarity these days. Those are precious moments. Best wishes. hilsandR

Tillyhugs profile image
Tillyhugs

I know how you feel. It can be so hard but I just keep remembering how much I love him. Stay strong Kevin hugs

Kevin_1 profile image
Kevin_1

Hi

Richmond Park is the most wonderful place. Good work out for you too pushing a wheelchair around it, I imagine!

Yes, good point. She has too much time sitting and she does say she gets bored.

We plan for her to come home more often.

Yes, I miss her laugh...

Best to you both

Kevin

HilsandR profile image
HilsandR in reply to Kevin_1

Yes, what a workout pushing the wheelchair, Kevin. I have muscles springing up all over the place - gonna change my forum name to Popeye!

Kevin_1 profile image
Kevin_1 in reply to HilsandR

Thanks for the chuckle.

You will have to do the whole cycling clothes bit - the purple shiny dark glasses, black lycra clothing and brightly coloured water bottles strapped to the wheelchair... R will have to dress the same. Footpath rage is totally acceptable too.

Best to you both!

Kevin

HilsandR profile image
HilsandR in reply to Kevin_1

........ and just to add to that rather attractive ensemble, Kevin, I will attach an enormous hooter to the chair handlebars to kick start a bit of footpath rage, especially with the aim of scattering those folks who seem to think I am able to manoeuvre the wheelchair on a sixpence. Thanks for a cheery start to the day - wishing you a peaceful one. HilsandR

Richard33 profile image
Richard33

Kevin,

My heart goes out to you, man. It is so unfair when you do so much.

I guess the citalopram is for you. I am doing my best to keep Ruth on sufficient anti-depressants to keep her on a reasonably even keel - 25mg of Sertraline and 30mg of mirtazapine a day . Selfishly I know that part of it is to make my life easier. She does not want anything that is going to make her feel even more dizzy, but I am hoping this clever generations of drugs is not to blame.

Richard

Kevin_1 profile image
Kevin_1

Hi Richard

I don't think its selfish. I came to seeing caring as being a sort of ecosystem. One part cannot thrive without the other part being good too.

No, the citalopram is for Liz we are hoping it will take the edge off things for her. She asked for it. That's not at all like her.

Yes, sertraline and mirtazapine are very good. They most often don't cause dizziness.

Thanks and best to you both

Kevin

raincitygirl profile image
raincitygirl in reply to Kevin_1

Brilliant analogy - an ecosystem - I'm going to use it in my thoughts.

Thanks Kevin!

Xx

A.G.

Megabrew88 profile image
Megabrew88

Oh Kevin, bless you!

I normally have good rant or cry.... I know it’s counterintuitive BUT I find crying helps. BUT men don’t cut noh😍

I normally pray and cry! It helps keep things in perspective and clear my head not to mention my vision and sinuses!!!!!!

Hugs,

Mx

Kevin_1 profile image
Kevin_1 in reply to Megabrew88

Hi M

Whatever works. :)

I hung on for a few years. Each morning I would wake with a feeling of dread, make myself get up and then make myself set too with what needed to be done. Tears in my heart most of the time and then Liz would smile and give me a hug and then it was tears for what the illness was doing to her. She could never see how horrid she was being and when I explained something she had just done she looked genuinely surprised. Most often she thought I was having issues, not her.

I don't have a personalised god to pray to. So I would just sit and breath and try to re-centre. In the end I couldn't find a centre at all! I kept thinking a stronger person would cope better and I am sure they would. However like the Oak and the Willow in a storm my way has always to be to bend and recover not stand until I break. Like water is to a stone, I quietly penetrate the matter and not smash it open. So I accepted my vulnerability and tried to work with it.

I lived for those moments when Liz would smile and tell me she loved me.

Yesterday she did just that. She is in there, frightened and living away from all that she cares for.

I will persevere and stand with her and like many here say... It's the illness not the person.

Sorry this post turned into more than I meant.

I wish you whatever you need to make everything good for you both.

Hugs to you too.

Kevin

xx

Megabrew88 profile image
Megabrew88 in reply to Kevin_1

Hear hear Kevin..... and no need for apologies.

We all appreciate your wisdom and sentiments iand echo it in so many ways.

Mx

margh2468 profile image
margh2468

Oh Kevin, I so so feel for you both. I remember when Leon got angry with me. I would just go and cry. His re-action was you are only crying for sympathy. That of course made it worse. I felt so hopeless and helpless. I would have loved nothing better than go for a walk, but wasn't game, as I was afraid he would fall. In the beginning it was horrid, he would acuse me of having affairs with all and sundry, where I got the time I'll never know, as I was with him 24/7. Ugghhhhh. Sending massive hugs and thoughts Marg H

Kaylewis profile image
Kaylewis

Hi Kevin thinking of you today I hope it’s a better day for you both. X

Kevin_1 profile image
Kevin_1 in reply to Kaylewis

Thanks

Yes, today was much better.

:)

Kevin_1 profile image
Kevin_1

Thank you all for your advice, support and sharing.

Today was a good day.

Hugs and kisses and she said she was feeling much better in herself.

Roll on party Sunday.

Except I drank all the wine... oops... Best get down the shops on Sunday morning.

Thanks for being there.

Kevin

Cuttercat profile image
Cuttercat

I know the feeling but it doesn't help much when it happens. Just know that it's the disease not Liz. I have to remember this each and every day!!! I relate to Charles like I'm used to doing and keep forgetting that it's not all him anymore. So we go on, Kevin, with your love for her there always.

Cuttercat

crab2093 profile image
crab2093

I thought I would share my angry moment and give you all a laugh. We had only been moved into the house in town for a couple of weeks and I had help Ch out to his nursery where he wanted to build a rail. He wanted to use a particular saw but could not so was directing me - doing the best I could. He was getting mad because I did not know one end of the tools from the other and began to treat me like a stupid slave . All of a sudden I snapped and yelled very bad verbal abuse at the top of my voice. It was like all of the months of patience had turned into a whirlwind and spewed out of my mouth... Then as I walked away I heard the silence from the new neighbours on all sides. .... I have never cone that again, now I take to deep breathing and walk away. ... 5 months later the neighbours still avoid me. I smile and wave and think how lonely it all is but how much more lonely it will be after the awful days (months? years?) I see ahead. ... cheers ...V (I reckon the wine is a good plan)

Kevin_1 profile image
Kevin_1 in reply to crab2093

Oh, Crab

That is such a PSP care moment!

Frustration for both.

I wasn't very good at the walking away bit and if I did do it Liz would find an excuse to call me back for another go!

Hang in there!

Stevewithpsp profile image
Stevewithpsp

Wish I had more profound advice for you bro. When the going gets tough I feel sorry for myself and cry like a little girl. On the inside. Rather, I remember I am a warrior, suck it up, and keep on fighting. Don't really know any other way. Try to remember why you are here and what you mean to Liz, myself, and so many others you help every day. This is no small thing mate. Look the devil in the eye and spit...

Of course, I am clinically insane.

Keep on trucking bro...

Your crazy Cajun bro,

Steve

Kevin_1 profile image
Kevin_1

Thanks Steve

I don't think there is any great wisdom. As you say, we have to endure.

We had a good day yesterday love crept into the room :)

Hugs to you

Kevin

doglington profile image
doglington in reply to Kevin_1

I'm sure loves always there - but sometimes hiding in the corner !!!

xx

Kevin_1 profile image
Kevin_1 in reply to doglington

It is.

I hang on to that.

There are tender glimpses.

I will stand with my lovely - despite all.

Thanks

xxx

LostinHeadSpace profile image
LostinHeadSpace

Please post for us all what happens with the party tomorrow. We're all rooting for a good day for you.

Kevin_1 profile image
Kevin_1 in reply to LostinHeadSpace

Hi Lost

It's a girlie do... they let me step into the room a little... But believe me it's a little scary... They go back a long way... But I'm determined to get the photos and a hug from my Sweetie...

Tomorrow, I promise, it will be a 'News of the World' expose...

Thanks for being there for us too :)

It really does make a difference.

:)

wear1947 profile image
wear1947

when I can leave the bed I excercise. Get up!

A big hug

Elena

Motts profile image
Motts

Kevin I like that creating bread works for you . . . There is nothing better than the smell of baking bread UNLESS it is baking cookies. I make wonderful cookies and share them with everyone. The new neighbors really like me but they love my chocolate chip cookies (my son's favorite). My car mechanics love when I make an appointment in hopes of getting some oatmeal raisin cookies. (I try not to disappoint because these are my favorite - I call them my nutritional supplements.) Once they returned the empty cookie jar with a note inside that someone robbed the shop but the only things they stole were the cookies. I love their humor.

Kevin_1 profile image
Kevin_1 in reply to Motts

Hi Ribbie

Thanks for the chuckle - lovely - you must be rather good at baking.

I only allow myself to bake those sorts of things v e r y occasionally. Which is good, because I'm not such a good cookie baker and my cakes are even worse!

Yes, I'm with you on the smell of baking cookies... My neighbour bakes them quite a bit... The smell is enough to make me whimper!

:)

Motts profile image
Motts in reply to Kevin_1

I have been known to burn more than a few cookies. Once my daughter in law stopped me as I was getting ready to toss some really burnt snickerdoodles in the trash. She said she loved burnt cookies so for 25 years she has helped hide my mistakes. The smell of baked goods in my home is what I enjoy the best . . . it reminds me of better times. When my son crashed his motorcycle I wanted to bake cookies. . . after my introduction to Hospice for my mom I wanted to bake cookies. Gee - sounds like baking is my productive therapy - Thank God I share with family & friends or I would weigh a trillion pounds. Maybe baking bread is a very good stress reliever for you. I also found that using a sledge hammer on the old car my sons used for parts is a great activity on my really bad days. LOL

Kevin_1 profile image
Kevin_1 in reply to Motts

Hi Ribbie

I had Liz home today and a couple of her girlfriends came over... another 'Girlie do' No men. (They're all on the feminist spectrum as am I so it's great to welcome them a to a girlie do without being decimated :) )

I mainly stayed in the kitchen doing a German rye bread recipe I'm trying to get "perfekt".

The two friends are pretty good cookie/cake bakers, so I told them your way of baking and sharing. The were delighted and much was said about it as a way of quietly sharing love and care. You might be starting a movement here!

I do hope your son recovered. That must have been a terrible experience for you.

I love the bit about taking a sledgehammer to the old car! Damned therapeutic. And, it probably entertains you neighbours :)

Do you give them cookies afterwards? Chuckles. ;)

Would you mind if I call my current Rye recipe "Sledge Hammer Brot" It seems to fit fairly well. Tomorrow I will try to work out how to fit the handle. But the taste is great!

I come from a family where cooking good food for others is a core sharing theme. I make myself cook these days... It seems so weird to cook for myself now Liz can nologer eat solids. So I make myself cook and I make myself bake bread... It's so grounding.

I shall forever think of you sledge hammering a car before baking cookies and the sweetly offering them to others... Such a great image. You must have a great heart.

Strength to you...Your great!

:)

raincitygirl profile image
raincitygirl in reply to Kevin_1

Perfekt Sledge Hammer Roggen Brot von Kevin und Robbie....Sign me up for some!!!

;-)

Anne G.

Kevin_1 profile image
Kevin_1 in reply to raincitygirl

I like that :)

Motts profile image
Motts

What a wonderful day you created for your wife and friend and of course yourself too. . . Kevin you did good. I love the new name for your bread. Now I am wondering if I can find a sledge hammer cookie cuter. . . I will ask my granddaughter to do a search on line. Thank you for the smile Kevin and Anne G. My son is ok... making the best he can after the trauma to his body. I live in the country so the sledge hammer events were hidden behind the trees.

Kevin_1 profile image
Kevin_1

Hi Ribbie

Thank you for the smile.

Yes, a good bread knife is essential in our house.

amazon.co.uk/dp/B01I08Z8ZU/...

😀😀😀

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