Since V has returned from the hospice where she stayed whilst I got myself sorted after breaking my leg , there has been a steady decline . Even whilst in the hospice her desire to eat diminished to next to nothing and she has been home for over a week and is living on ice-cream , even jelly is now impossible to swallow .We shall no more be wandering down our Devon lanes or sitting in the afternoon sun listening to the sounds of the birds coming across the water of the estuary . Instead , I sit next to her bed in our front room , V's bedroom as it is . In the morning I read to her bits from my newspaper , I don't know if she hears or understands and we listen to Smooth radio which plays many old favourites which occasionally I hum along to . The carers are all gone by one so in the afternoon we read poetry together and sometimes there is a whispered "that's nice " . I have rediscovered many old favourites from Wordsworth to Spike Milligan - an eclectic selection . V rests in bed with her eyes half closed and so we pass the hot summer afternoon away . Occasionally just still and silent listening to the summer buzz of a fly , or the chatter of sparrows under the eaves or the distant sound of a mowing in a neighbour's garden .How much longer we have together I have no idea - last Friday night at 4am the carer who was sitting with her called me to tell me that V had passed away - I came downstairs crutches and all only to discover she had started breathing again - and so we go on day by day never quite sure what the next hour will bring . In fact on that rather frightening night as the carer and I sat on opposite sides of the bed as the dawn chorus broke, she whispered across " would you like a cup of tea ?" V was motionless and seemingly asleep but loud and clear came a voice "I want a cup of tea " .
Today having not eaten for nearly ten days she suddenly said "I am hungry , I want a boiled egg " Well I gave her one all mashed up and some of it went down and some of it didn't , and some produced fearful choking but what was I to do ? Say "no" - I don't think so .
At the moment life seems like an everlasting nightmare-the end is in sight but not in sight - does that make sense ? I don't know any more .
Written by
Georgepa
To view profiles and participate in discussions please or .
Oh George, I really feel for you both, you feel so helpless don't you, just sitting, watching and waiting for the end which you know is inevitable, I'm sending you both my love at this awful time, I can't think of anything to say except stay by her side, it's all you can do now, I'm thinking of you both, stay as strong as you can....
Dear Georgepa I'm so utterly saddened to read your post and can only send you much love and strength! In the meantime please try and look after yourself x
Dearest George - this is how it was with my dad... slowly slowly... with a couple of waking up moments, still clinging on.... it could have lasted like that for weeks or months, who is to say. And then one morning, he had taken his first meds of the day still, the nurse had washed and dressed him, but too tired to get out of bed... and gone. Still unexpected and too soon. For US. But longed for by HIM. Hold her hand, be with her, soft music, icecream if she can eat it... My thoughts are with you both - sending a big virtual hug from across the pond.
I have been following your posts on this site. Sad about V's condition and you having to suffer as a carer & now with the crutches. Sorry about it. just hang in there and take care of yourself as well.
Oh George, how beautifully written. So poignant, so very, very sad. There is nothing that any of us can say to you, that would help. Although, I will never forget the love and support I got from everyone on here, when Steve was lying in his bed, waiting to go. Thankfully, that was only for a very short time. So yes, know that each and every one of us is thinking of you both, sending love and strength across the ether.
Yes it does make sense Georgepa and my thoughts are with both of you. Many times C stopped breathing, (Cheyne Stokes?) only to start again. I got used to it and knew one day he wouldn't start breathing again. It is a nightmare but is not everlasting Georgepa. You are doing all you can to make Vs days as good as they can be, that's all you can do.
Oh George and V what a heart rending situation you find yourselves in, my heart goes out to you both as I know how very devoted to each other you both are. I guess we won't be hearing any of your beautiful descriptions of your beautiful county. I'm sending all of my love to the both of you.
Lots of love and affection to you and V. This really is a dreadful time. When your darling V passes you will know that you did the absolute best you could for her. You have been amazing xx
Not the best time to have your leg in plaster during a heatwave! All very hot and itchy and still three weeks to go ..But I am managing to get about and a man in the village has lent me a mobility scooter so I can get up to our local store ..Hopefully the leg is mending under the plaster ,,,how do you tell?.Thanks for asking. By the way I have become quite adept at handling crutches.I use them a bit like chopsticks for picking thins up and loading the washing machine .I can turn lights on and off at a distance and even open windows .
When Mum and I were at a similar stage I was making her liquidised soups and smoothies. It is surprising how many healthy things can be incorporated into a smoothie. Raw (very fresh) egg and banana can be blended with just about anything.
I am so sorry to hear you have a broken leg. It probably isn't a good idea for me to suggest a knitting needle as a scratcher (!) in case you break the skin, but perhaps if it was covered in something soft, or some anti-itch cream?
You are one of the best Georgepa. When we marry, none of us really know whether our partner will have the inclination or the ability to step up when times are tough. V is blessed to have you. As are we all.
Wow I could really feel your emotions in those written words of what you are both dealing with hour by hour.
Sending you much love & strength at this time. My heart goes out to you both. When it is time for V to pass I hope it is as peaceful as the days you are experiencing now together.
George, I was going to say that I wish I could send a big warm cloud that could envelope you and V in an enormous hug. But then I realised that you have it already, because you and V are enveloped in your love for each other. It sings out from the page. Devastating as this time is , especially for you, as you sit and wait, it sounds as if you are still making memories together, especially with the poetry readings. Keeping you both in my thoughts and prayers. Hoping that the leg gets better quickly. X
I know what you're going through George. Lost the love of my life 11 months ago and I re-live those final days all the time. They're just precious sweet angels lying there waiting to be called up to heaven. We're the ones actually being tortured.
Dear George, been following you and V for some time now and sympathise with the broken leg, what more can life throw at you but you are coping so well, though you probably don't think so, you and V are so in love and that is just wonderful, keep telling her you love her, read poetry and all the things you love and have done together. Lieve and Heady's posts have some good words of wisdom in them, treasure them all. Take great care of yourselves, look after yourself George and next time I see a fly, I will listen closely and think of you ! ! ! Jingles x
Hi George. When I read your post yesterday I couldn't bring myself to respond as I just couldn't find the words. I just want you to know that you have been in my thoughts the entire day today. I have no idea how human beings survive coping with such an enormous amount of sadness but if it helps knowing that everyone on this forum has you in their thoughts then thank goodness we are all here to support one another.
For the last three years, I wake up every morning, cup of coffee in hand, and check into the site, hoping to see a post from GeorgePa. Your wonderful writing has made me laugh, enjoy the beautiful photos you post, be angry as PSP and health care systems. And, most of all, admire the depth of your devotion to V. Today was different. I am misty-eyed and very sad. For you, for V, for all of us. I can only offer prayers, sympathy, strength, and may you find some peace somewhere in this transition...and may God hold you in the palm of His hand.
Dearest George I have just read your oh so sad post. It seems so strange but I feel like I know you and V so well. She is happy George because she has you beside her. Know that George because it is true. You have been so good and caring towards V. I love the idea of you reading poetry to her. I am sure she hears it and feels glad you are there.
God Bless you and V. I will be thinking of you and praying she goes peacefully.
Your missive is so poignant. It mirrors my days as well. I read to him in the morning from the paper, we listen to jazz, we listen to books while we bathe.
But the eating comes and goes. All pureed but an ice cream malt every day that he loves. The only difference is we are going to try steroids, our last ditch effort. They arrived today.
Charles' jaw pain and choking is terrible so we will see.
Yesterday someone said "the long goodbye" and yes it's been 6 years and he's still fighting but comfort is my motto. I hate to see him in any pain.
He didn't eat for two days and today hungry as a horse. PSP is the strangest and worst disease ever in my opinion.
"and so we go on day by day never quite sure what the next hour will bring . At the moment life seems like an everlasting nightmare-the end is in sight but not in sight - does that make sense ?" YES!! End in sight but not. Pray that God's Will will bring them home.
Oh George - such vivid images. Thank you for sharing. You're a good man caring for her with such intimacy & thoughtfulness. Im sure that in her heart & mind she is still wandering down your Devon lanes holding your hand X
Dear George, my heart goes out to you and V. What an awful situation. You have been doing wonders with V and it sounds as tho she does hear you when you read to her. Don't stop now........keep going dear friend. Sending love and hugs to you both, Michele xxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Can anyone offer me advice on how to do my bit when I live a long way away from my mum?
Is it ok to ask how long?
After a long battle with PSP...
