Seizures and holding hands.

[Kevin_1]

Hi folks

Liz had a seizure of some kind this morning. Brain/dopamine deficiencies come to mind, but I don't know.

She was given Medazolan, which controls seizures, relaxes muscles and a lot more. From memory it is a powerful benzodiazepine.

Tremendous thing is that it was already in Liz's palliative care pack. Someone really did their homework.

I sat with her in three two hour stints today. (Carer's look after yourselves too please.. A fried carer is no good to anyone. )

Her mouth has locked down and her bottom lip is in her teeth, So there is no way of getting fluids into her.

PSP is such a bugger of an illness.

This evening I persuaded the nurses to give he an additional dose in the hope of unlocking her jaw. No luck.

So I spent most of the day talking quietly to her and she hand squeezed answers.

I left her sleeping.

She has suffered enough and wants to move on... All I can do is keep care on the bal and give her reassurance and love. It's the best I can do.

Waving warmly to all.

Kevin

[Dadshelper]

I am so sorry to hear of yours and Liz's recent struggles. Sit with her, talk to her and hold her hand. If it's her time these actions will be of great comfort to you both.

Ron

[Kevin_1 in reply to Dadshelper]

Thanks Ron

I'm doing fairly good at holding the tears back until I get home.

She's strong, so must I be.

[Willow_rob]

Hey Kevin I know that all on this site are thinking of you. This dreadful disease has many tricks but no single pathway to follow. It is probably down to your instinct in the end. Just do what you think is right. No one here will judge your love and commitment. You have been a star to Liz. Take care of yourself. Rob

[Kevin_1 in reply to Willow_rob]

Thanks Rob

Good words.

[Brenive]

Sorry to hear about Liz , I will be thinking about you and Liz ,...take care...Brenda xxx

[Marie_14]

Sorry to hear this Kevin. Take good care of yourself because you will need some energy in the days to come. I hope she doesn't linger. She must surely be worn out by now? God bless you both.

Marie x x

[doglington]

Thinking of you both, Kevin. Its so much more difficult than we imagine, isn't it ?

Big hugs and lots of love from Jean xxx

[Suebatt]

Hi Kevin

Hope that your ok and as you know I know it’s really hard as this crap goes on

Take care Kevin everybody on here is routing for you cause you are good at what you do in both caring and solving our problems for whoever asks

I think Liz always knows your there for you and your love for each other is very strong

I’m sending you both lots of love hugs and kisses

Take care

Sue xx

[Tippyleaf]

Dear Kevin

So sorry to hear this but impressed the care home had the medication in Liz”s careplan . Do you have a local palliative care team they may be able to prescribe something to help a Liz relax her mouth for comfort.

Sending you both lots of love and s big hug

Love Tippy

Xxx

[Kevin_1 in reply to Tippyleaf]

Hi Tippy

Spot on!

Yes, it was the local palliative care team who planned the meds. in advance.

The Nursing Home staff are also trained in palliative care.

They are superbly caring. When I got back from a break there was a carer sitting with Liz, holding her hand. She had clearly been there a long time.

Sad days.

xxx

[Tippyleaf in reply to Kevin_1]

That is reassuring to hear and so sad at the same time. Please take care of yourself too.

Love to you both Tippy

[dollydott]

Such a difficult time Kevin

Thinking of you both

Please take care and try and get some rest you must be exhausted.

Love and hugs to you and Liz

Lynda x

[Helen119]

Love and hugs to you both xxx

[Abrecheisen53]

Kevin, I know we have all have been and/ or will be where you are. I wish you both peace.

Hugs to you both

Alice

[Spiralsparkle]

Sending you both enormous love and peace. There are no words that seem adequate.

We are all here to listen when you need us.

Hugs to you both & may your darling Liz now be free from anymore battles and just showered with comfort and peace x

[Ratcliffe]

Kevin, I’m thinking of you and Liz. I’ve never managed to meet either of you, but I really hope you can both get through this episode and fight on.

Big hugs for you both.

[Heady]

Sending big hug and much love

Lots of love

Anne

[Yvonneandgeorge]

Kevin thinking off you both Kevin, sad times, sending you a big hug. Yvonne xxxxx

[Cuttercat]

Dearest Kevin

Unfortunately Charles had one of these seizures and it was a matter of days. My thoughts are with both of you. Love each other well just like you always have and kiss her.

We will be here for you. Blessings

Cuttercat

[Bargiepat]

XXX to youu both..........

Patrick.

[Pavaga in reply to Bargiepat]

How are you Patrick? I missed your pics and adventures. 💌

[honjen43]

Oh Kevin! How devastating, even tho it has been hovering on the horizon for so long!

There is a ring of hugs right around the world for Liz and for you!

So pleased she knows you are there. And that the care home is coming up trumps with their palliative care package. Hope they can find something to unlock her jaw, and let her relax.

You have both given PSP one h*ll of a ride!!

Will be thinking especially of you both!

Big, big hug!

Jen xxx

[LostinHeadSpace]

Kevin, You must be worn down to a nub. Hope you get some rest in this intense time.

Our thoughts are with you both.

Hugs.

[Birdman34265]

It must be so tough on you Kevin, you are doing all the right things,as you say look after yourself,be close to Liz,we are thinking of you.xx

Peter and Kathy

[Zeberdee]

There are no words Kevin ..... love and hugs to you both. Jxx

[Hidden]

Hang in there Kevin .... I think you are both amazing and your love for each other shines through.

Sending you both big hugs.

Sue x

[Dickenson2]

So sorry to hear your news Kevin. Sending you a big hug and take care of yourself xxPauline

[AJK2001]

Kevin so sorry to hear this, thinking of you both.

xxx

[LuisRodicioRodicio]

A big hug Kevin.

Thank you for sharing it.

Luis

[1941mary]

Kevin I’m thinking of both you and your lovely Liz,... sending you both love and peace . We are here for you .

Warmly

Jude x

[Katiebow]

My heart goes out to you both, such a delicate situation full of conflicting emotions. Keep holding her hand Kevin, I know in my heart that Ben was aware that we were all there for him, it must be such a comfort as life slips away.

Big hugs

Kate xx

[georgeg25]

I am so sorry to hear this news Kevin. No words needed. Just know that as you have been here for everyone, then so we are here for you. Your love for Liz comes through in your posts. Sending big hugs and prayers for you both. 💖💖

[Teeker]

Hi Kevin, my heart goes out to you and Liz. She knows how much you love and care for her. I am sending you huge hugs and prayers that you will have the strength to cope. Liz has fought a very aggressive and nasty enemy and now is her time to rest. Thinking of you both. Esther xxxx

[Hidden]

Dearest Kevin,

Please whisper to my lovely friend LIZ that l too love her.

As you hold her hand...please know... all here are with you both in our thoughts & hearts.

Sending gentle hugs... Granni B

[easterncedar]

Thinking of you and Liz, Kevin. You have been important to everyone here for so many years, always caring for us as well as Liz. Love to you both. Sarah/ec

[Satt2015]

So so sorry Kevin for you both! This illness stinks! Beyond cruel! Praying the end comes soon and that it is peaceful for you both. Huge hugs x

[NanBabs]

Distressing for you both Kevin, yet another evil side to PSP. My thoughts are with you both.

xx

[JantheNana]

Dear Kevin my heart is with you. I know what you are going through.This difference in my beloved Don’s case was that he went suddenly,unexpectedly,while he was in a rehab facility and we expected him to come home.So I did not experience that lingering period that so many on here report. I don’t know if you are a believer but it is my conviction that we go when it is God’s time for us- no sooner- no later.My prayers are with you and Liz.

[Kevin_1 in reply to JantheNana]

Hi Jan

I am of the Daoist persuasion and yes the same, everything happens when the time is right.

Thank you for the prayers they mean a lot.

Warmly

Kevin

[Aprilfool20]

Thinking of you. Sending hugs,Jayne x

[Pavaga]

So sorry Kevin. 💕

[Mikey12345]

Kevin, so very sad to read this update. I have been away from the site for quite a while and didn't realize the progression.

My heart aches for you both but what a gift you have been for your precious Liz during her journey. You have been right on it whether it was her physical care or emotional well being.

My prayers are with you as this trail of the journey is exhausting. Huge hugs.

Liz

[Kevin_1 in reply to Mikey12345]

Hi Liz

Thanks

I do hope all is going 'OK' for you. Good to see you here again.

Warmly

Hugs

Kevin

[DeDeDickson]

I, too, have been absent for a while. But I’m couldn’t let this post go by without letting you know what a truly wonderful carer you are ... to Liz and all of us! Prayers for you and Liz.

xoDorie

[Kevin_1 in reply to DeDeDickson]

Good to see you back

Thanks for being there for us.

How are things going at your end?

Waving and smiling

xx

[DeDeDickson in reply to Kevin_1]

Thanks for asking, Kevin. Bob is still up and about, although he’s on the ground at least once a day, walking hunched over as his back has taken so many hits. He is obsessive and stubborn and often childlike in wanting his own way. I struggle daily with anger and frustration. Other than that, we’re fine. 😉

xoDorie

[Hidden]

Kevin, I'm sorry to read that you and your love are on yet another road that may well be the end.

Thinking of you both

(((((Hugs )))))

[Northstar1]

So so sad makes me cry x God bless

[AnneandChris]

Oh Kevin

Thinking of both you and Liz at this difficult time. PSP is so cruel.

Sending love n hugs from Gloucestershire

Anne

[Kaylewis]

Thinking of you Kevin.x

[Mtorres9235]

Hi Kevin.

This happened to my husband as well. When I was on a respite. We are giving Keppra 6.5 mg 3 times per day now for maintainance. There is a a cbd nasal spray called Cannatol that helps as well. Good luck and God bless

[raincitygirl]

Oh Kevin, we knew this was coming: it's still horrible and even shocking when it actually does come 💔

Hugs to you as you navigate this final phase, and hugs to your dear Liz.

Anne G.

[Hidden]

Sorry to hear. Hope you are holding up.

[Megabrew88]

Thinking and praying for you and Liz.

Love and light.

Mx

[Nanny857]

Hi Kevin, keeping you both in my thoughts and prayers as you go through this difficult time. Love Nanny857xx

[teresa1988]

Kevin,

I'm so sorry that Liz and you are having to go through this most difficult time.

Prayers for both of you,

Teresa

[Rowan8831]

Tough times Kevin but so great you can be with her and it sounds like the care home are doing all they can. Thinking of you both - and all the help you have given us over the years xxx

[PSomani]

Sad to hear Kevin. Each such episode just lowers the baseline of our loved one which none of us want.

Take care and prayers for you and Liz.

Anshuman

[NannaB]

❤️ XxxX

[kandk]

Blessings to you both Kevin, so sorry to hear about Liz. I have learned so much reading your posts. Hugs. Kathy

[Greens]

Kevin so hear both Liz’s and your pain its awful watching your loved one suffer love and sincere thoughts to both of you x x

[Dickwin]

Kevin,

It is so nice to see you and Liz back on the board and you leaving your always informative and insightful comments. You were sorely missed. I am sorry to hear of Liz's current predicament, but I know she is in good hands with you at her side. You and Liz are an inspiration to me and my wife and I can only hope I handle my duties as a caregiver half as well as you have. I will keep you and Liz in my prayers. You have helped me more than you know.

Waving from Chicago.