PSP Association
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George

Well after George got a chest infection, about 3-4 days later he has a urine infection, it has really knocked him out, his temperature has been 39-40 really hot really getting agitated, he has had a high dose of his medication, into his syringe driver and a separate injection, been a very hard day, not sure what tomorrow will bring!!!!!!!! George is asleep but wheezing quite badly drinking a lot but not loads of urine in the catheter bad, but he is so hot. Sad time just want it to end and stop the suffering been a hard week. Yvonne xxxx

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Hi Yvonne

Sorry to read George isn’t having a good time with the infections he has had .i feel for you as I know what your going through

And you can get rest while he is sleeping

You do a great job with the care you give George I’m thinking of you wholeheartedly

Please take care and sending hugs and kisses to you both

Sue xx

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Thank you xxxx

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Hi Yvonne

My thoughts are with you Yvonne and your family

Sending his hugs kisses and love to you

Sue xx

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Oh sue thank you we could all do with big hugs at the moment xxxx

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Dear Yvonne, It is not easy, I know that. Any kind of urine infection always makes everything worse. My heart hurts for both of you. Try and be strong. Love from Audrey xoxo

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Audrey thank you sad time, how are you? Xxxx

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So sorry to hear of George's setback. We can relate all too well. Since July, my husband has UTIs with four different bacterial infections, numerous antibiotics...from a convene to an indwelling catheter, and now a suprapubic. It has been draining physically and emotionally. (The pun was not intended!) It affects every part of the body. He had been doing so well up until all this. It is very demoralizing

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Thank you not looking good xxxx

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Dear Yvonne

Sending lots of love and a big hug

Tippy xxxxx

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Thank you tippy hugs much needed xxxx

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Feel all your going through ,keep holding his hand and tell him you love him,and try and keep strong , so so very hard ,and so very unfair Linda x

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Been sitting with him all day, when I leave the room he calls out for me x

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So sorry Yvonne, so incredibly unfair on George whilst killing you in the process!

Sending hugest hugs with bundles of love. My heart goes out to you both x 💕

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Amanda so horrible feeling so sad, his breathing is not good, so much medication, children been here all day xxxx

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Aww honey, heartbreaking for you all

Love ya honey, so very much x ❤️

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Amanda love you as well one good things has come from Psp I have met so many amazing people, love you all. Amanda thank you for your kind thoughts xxx

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Yvonne, I am sorry to hear that you have been having such a tough time. I hope you at least got a good night's sleep last night. Prayers and love for you both while you fight on. Julie

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Thank you Julie xxxx

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Oh Yvonne

Thinking of you both, love n hugs

Anne x

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Thank you cxxx

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Sending you massive hugs and strength.

Being a carer is such a thankless lonely place at times. We are all here for you.

Watching your loved one suffer and have to endure more pain and infections is torture. It destroys the carer.

I hope you have good support around you.

Xx

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You are so right destroys you seeing him suffer xxxx

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I know Yvonne. Charles had a terrible one but after it cleared he was better for months. Keep cool wash cloths on his head. What else can we do. I pray for you. Let us know the progress

Love

Cuttercat

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They are saying he hasn’t a chest infection nor a urine infection, bloods are all clear xxxxx

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Big hug for you Yvonne

Lots of love from Jean x xx

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Thank you jean big hug back to you xxxx

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Big hugs Yvonne. Nigel also has an infection again so going through similar problems. It is so hard when one cannot do anything to help. I hope it will resolve soon and that George will be back to a more stable place. Lots of live AliBee xx

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Thank you but apparently no infections xxx

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Dear lovely lady, my heart goes out to you both it's so so hard and painful to witness your loved one suffering so much. I totally understand what you are saying, it is not a life, just an unbelievably difficult and painful existence for poor George. PSP sucks.

Sending a big hug

Kate xxx

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Katie thank you for the hug, Psp stinks cxxx

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Sounds like things are escalating Yvonne, all I can do is send you a virtual hug and hope that George is being kept as comfortable and painfree as is possible, it's all you can ask for dear lady. Glad that you are both surrounded by your family.

Lots of love

Kate xxx

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Oh Kate thank you for the hug, laying here crying thinking this is not happening xxxx

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Let the tears flow Yvonne, I find it hard to cry, wish I could as it's a great release of stress and sadness. Your present situation has taken me straight back to when Ben died, I look back and find that it was a privilege to have been there with him, surrounded by family and Ben slipping peacefully away, it was a blessing for him but so sad for all of us.

Big arm around your shoulder

K xxx

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Thank you Katie hug much appreciated xxxxx

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Interesting Katie...I find the tears hard to bring often... Grief is a deep, dark, cold, dry place. A really good cry followed by an exhausted sleep has been a good but too rare thing....

XX A.G.

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I completely agree Anne, I often feel like I'm in 'No Mans Land' a very strange feeling, I'm desperate to have a really good sob but it just doesn't happen. I think it would be a massive relief to help get it out of my system and want to let all of my feelings go.

Love Kate xxx

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Dear Yvonne,

Sorry to hear about George. It`s so hard to fight all these extra complications when life is so tough every day, for you both. It all feels like a nightmare that you can`t wake up from, doesn`t it ?

Hugs xx

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Yes well said feels like everything is going on but I am not there xxxx

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You're doing the best anyone could do. Keep him comfortable and make sure you get rest for yourself. The meds may take a bit to kick in so the fever can drop.

Ron

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Thank you xxxx

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Sorry that he and you are having such a difficult time. Hugs and prayers for you both.

Tim

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Thank you xxx

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Yvonne I wish I could come up with something that could make it better but when it comes to this dam disease its just relentless,l truly understand where you are at.Try to take care of youself as well.

((((Hugs))))

Dee

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See need so many hugs xxxx

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Oh Yvonne, my darling, my heart goes out to you. I know exactly how you feel. PSP goes well beyond what any normal person can cope with, yet you are still managing day after day and will carry on doing so, until the end. Just cuddle George, hold his hand, have physical contact with him. Tell him you love him. The end will come, all of a sudden. The only thing I regret, is not telling Steve how I felt enough.

Sending big hug and much love

Lots of love

Anne

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Anne didn’t realise that it would be so hard, feel like I am in a daze it’s horrible never thought this time would come , said to the children he will pull through this, but when the nurses come and start giving him the morphine it’s frightening xxxxx. Thank you for the hugs badly needed xxxx

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Thank you everyone not looking good his breathing is very bad, feeling really sad all the children here today, nurses in and out, he has been given morphine sad time horrible to see him trying to breath xxxx

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I hope the morphing will help a little. You have been incredible - an inspiration to many of us. Thinking of you both and

Sending lots of love

Tippy

Xxxxx

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Thank you xxxx

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I remember that feeling of disbelief - wanting him to be at peace but not feeling ready to let go. Glad your family are with you.

So sorry, Yvonne.

xxxx

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Jean it’s a horrible feeling isn’t it xxx

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I've just seen your comment from yesterday.

Sending you both much love, strength and peace for this part of the journey.

It sounds like the nurses are being attentive and keeping George peaceful and comfortable. May that support continue.

Much love

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Thank you sleeping a lot also think we are going to stop medication and just use syringe driver xxx

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Hi Yvonne

How are you hard times but your a brilliant lady who’s looking after her man

Thinking of you George and family

Hugs

Sue xx

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Thank you Sue he is sleeping a lot managed to eat a bit and drink xxxx

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Yvonne, I am coping. There isn't any other option. Audrey xoxo

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Oh Audrey I think about you a lot sending you a massive hug xxxx

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Yvonne, you are a great lady and a great carer, I know,you have got this.

It doesn’t sound great at the moment, but whatever happens, I inow'you can and will deal with it.

Make sure you talk to him, tell him how many ch you love him, just be there, to,hold his hand and the like. It what you both need right now. Just be together.

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Oh thank you trying to just sit with him all the time he wants me next to him, I said to him today are you going to leave me he said never so sad xxxx

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Dear Yvonne,

I am so sympathetic to you and your exhausting struggle. And I didn't have it as bad as you do - but I know what you're going through.

One of the most cruel things about this disease, is that the final year(s) and months of care are so heartbreakingly exhausting and stressful that we caregivers are just begging for it to end - for them and for us! - yet when it does.....and it will end, Yvonne, and even you will be surprised.... you are so shocked and heartbroken and bereft! It is the most cruel set-up ever. We go from seemingly unending torture to total loss and grief.

Hugs for strength to you, my dear.

Anne G.,

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Exactly right, Anne.

Jean xxx

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Anne didn’t realise how bad it feels, I wanted it to be over but now I want it just to be alright, but I know it has to come. Yvonne xxxx

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Dear Yvonne,

Thinking of you being alright. The best to your family at this tough as heck time.

Alicia💜

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Thank you sad time xxx

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Hi Yvonne, gosh sorry George is so sick, I know what you mean, so much suffering with this evil dreaded disease, the Doctor put my brother on DNR comfort care now, he has really rapidly progressed the last three months, a lot of weight loss, all we can do is hang in there as it is not easy, take care many hugs. Nettie

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Thank you Nettie you also look after yourself xxxx

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Yvonne and George you are in my prayers

Love to you both

Lynda xx

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Yvonne I'm so sorry for you, I hope the medication is keeping George at peace. You are one very marvellous lady, you have been an inspiration to me and have helped me and others so much. Glad you have your family beside you. Praying for you, George and your family 🙏 and sending a big hug. Nanny857xx

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Prayers for both of you . It’s a tough fight - an understatement. My mum also had a bout of pneumonia followed by a UTI and blood transfusion. Apparently the bacteria strain in the lungs and UTI was the same.

I hope n pray for George that it goes not go worse from here - something that I keep praying and wishing for my mom.

Anshuman

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