End-of-life

[Baileyboo]

Hi everyone

I always look on here to see how everyone is coping. I am sorry I haven't posted any interesting things.

My husband Les is at end-of-liife care now thanks to this vile PSP and I am struggling to cope. Les was diagnosed about 3 years ago and this progressive disease shows no mercy.

This is the man I have spent the last 44 years with and love endlessly. We have been married for 41 years and now he is leaving me. I try not to cry when I am with him but it is incredibly hard. I know I will eventually find some way of coping when he has gone. I dread losing him but hate the way he is suffering. If there is a god why does he let adults and children suffer so much.

Pat

[BandT]

Oh Pat, I am so very sorry for you. Cherish the time you have left together. I have no other answers x

[Heady]

Hi Pat, try to let others do all the caring now. You concentrate on the most important thing, being Les's wife again. It's 11 months since Steve left me, I will treasure those last few days for ever. All I did was cuddle into him, telling him I loved him. He died with his wife beside him, not an over worked, exhausated, desparate carer. For all its evil, PSP is kind, in death. Most pass peacefully, with their loved ones beside them. Who could ask for more.

Worry about the future later. For now just love your husband.

Sending very large hug and much love

Lots of love

Anne

[Baileyboo in reply to Heady]

Thank you so much xc

[abirke]

I am so sorry that you; that any of us have to go through this horrid disease. To watch our loved ones slow demise does not seem fair. What did we do to deserve this. Nothing...Just like those folks who seem to live lavish lives Some may have worked hard but many were born into that life...did they deserve it? Did God look down on them with greater favor? I say no!...we are all loved with the same love...the rich, the poor, the healthy, the sick. But this is the world, and through the choices of the few came the suffering of all. All suffering is the result of sin in the world (not necessarily personal sin, but the fact that sin is in the world). Scripture promises we will suffer. When we suffer, let’s not believe the Satanic lie that God somehow enjoys making us suffer. Nothing could be further from the truth. He ordains, orchestrates, and uses suffering. But he never, ever delights in causing suffering. So what do we do...we get on our knees and ask for His love and guidance comfort and joy....Nothing in this world is easy, but it can be of good use in time. Please find and or keep faith that your new journey may help someone else along the way. May God bless you in your time of need. Know God is there and so are we, friend.....

(Some of these comments were taken from Stephen Altrogge, preacher Grace church)

Much Love and hugs to you and yours,

Andrea

A prayer:

Lord, lift our sister up in her time of need. Please show her that You love her and are there for her. We, in this world, suffer. But the stronger our grasp into Your hand, the more comfort we feel. Let our sister grasp Your hand at this time and feel your comfort for all time. Amen...

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go. Joshua 1:9

THEREFORE REMEMBER:

Blessed are those who mourn, for they will be comforted. Matthew 5:4

And we know that in all things God works for the good of those who love him, who have been called according to his purpose Romans 8:28

[aliciamq]

There is Life and all that comes with it ~

[humphers]

I am so sorry for what you are having to go through.........PSP must be the worst condition anyone has to endure.........and nobody ....even medics do not understand how cruel it is. x

[Baileyboo]

Hi Humphers

How right you are when it comes to medics. The walk past Les in his bed or chair and glance at him.

It seems that Les is somehow locked in this horrendous illness. He has lost his voice and his writing is too small to read but he has so much he tries to say. His lips move but there is no sound. I can only imagine how frustrated he must be. I would love to hear him as these last hours/days are punishing us both so much.

PSP sucks and I hate it.

Thank you for your reply I feel the people on here are the only ones who understand as they all have or have had someone very close to them succumb to this.

I have to put my brave face on again today and hope I can control the tears but they are virtually uncontrollable and I don't want Les to worry for me.

Love & hugs

Pat xx

[Heady in reply to Baileyboo]

Steve's handwriting went right at the very beginning. Wasn't until near the end, I got him a magnetic board. At first I wrote huge capital letters, that he could copy, to communicate, then we used the letters for the board, eventually, he just pointed at the letters and I wrote the sentence. It proved Steve was still completely there, right up until the end.

Lots of love

Anne

[abirke in reply to Heady]

Same thing happened with Bruce...He used to write his parents monthly checks. Their bank asked if someone new was endorsing said checks. This too was way before diagnosis....

[doglington]

So sorry, Pat.

We went through the same 5 weeks ago and your post reminds me of the despair. Seeing him locked in and unable to communicate was so painful.

Big hug from Jean xx

[Baileyboo]

Thank you Jean. No matter how we try to cope there is nothing to help. We try to soldier on struggle with this vile disease.

Pat x

[Cuttercat]

I'm right with you and all the emotions that go with it. I've had 25 years and it's not enough when you love with all your heart. I cry everyday and know my life will change and perhaps not for the better.

Don't lose your faith it's all we really have to lean on. Les sounds like a terrific guy, I get that through you.

Cuttercat

[Baileyboo]

Thanks Cuttercat. Les is an amazing person and doing his best to carry on. We both had a 2 hour nap on his hospital bed yesterday as he indicated he wanted a hug. Hospital protocol goes out of the window regarding cross contamination. The staff are really good but I still wish Les didn't have this damned disease. I don't think I'm alone wishing that as everyone on this site feels this. I watch Les sleeping and wonder what is going through his mind. Silly, I know pretty much that he is frightened and I need to be with him to try to comfort him. I want this rollercoaster of emotions to end but don't want to lose Les. I just want to shout "stop the world we want to get off". Loving someone so deeply hurts when you see them in pain or discomfort. Les was very relaxed yesterday which was better as he gets so tense and becomes exhausted. We will see what today brings.

Pat x

[Kevin_1]

Dear Pat

My heart goes out to you.

Would it be callous to say he is coming toward his release?

I'm sure he won't want to leave you either, but at least he will be at peace.

The final, dreadful thing about PSP/CBD, is that after years of incremental loss and watching our loved one suffer, after years of having to dedicate our every waking moment to them, we have to step into a void. A void where we often have little personal life usually rather isolated and without the person we most love.

PSP and CBD are both cruel to carer and the one who suffers.

Warmly and with immense empathy

Kevin

[Kevin_1]

Hello Pat

I'm sorry to hear this.

I hope his passing is easy and your pain bearable.

We're all still here for you.

Warmly to you both

Kevin

[Baileyboo]

Hi Kevin

This man refuses to give in. I can't bear losing him but hate the way PSP has taken everything from him.

I love him so much but hate this waiting. I hope he passes peacefully today. I sound so harsh saying that but he has had enough.

Pat