PSP Association
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George

Well I hate this PSP so much, George is so poorly, nurses coming in to try and dry the phelm up, injections and today patches, he won't eat, because he is frightened of chocking, our drink, if had to keep the tears a bay, when he said to me, I just want to die, I am so fed up with all this now. Nurse said she would get doctor to come in tomorrow, doctor came in on Monday, she said his chest is clear, a bit quiet on the right side, not to worried about that, but he seems to be worst today. Yesterday he was on form talking a bit, he has had three lots of antibiotics so I think it was from the antibiotics, made he stronger, to good to be true. Nurse brought us a suction machine, they have to come and show us how to use it, feel like a robot, all these new things we have to learn to do, wish me luck for tomorrow, that George start to pick up. Yvonne xxxxx

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I do hope so Yvonne, you're having such a tough time at the moment, my heart goes out to you.....

I'm thinking of you both, sending you another great big hug......❤️️❤️️

Love....Pat xx

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Thank you Pat and thank you for the hug. Xxxxx hope things are ok with you, always thinking about you Pat xxxxx

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I've just written another post Yvonne, things aren't great at the moment, I think about you a lot too Yvonne, hugs and more hugs....xx❤️️❤️️

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Just replied to you Pat xxxxx

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Sending you a big hug, Yvonne. Its just so awful. I hope things improve for you.

Love, Jean x

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Thank you jean, sleeping in with him, it is quite so hopefully he will have a good night xxxxx

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Sweet dreams to you both. Thinking of you across the sea. Hugs, ec

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Yvonne, Don can't walk, choking on his food, which he really doesn't want to eat, so he eats very little, and coughing as well. Dtr said to buy Boost for him at the grocery store if he is not eating. Not talking either, Guess we are in the same fuxxxk boat unfortunately. Maybe things will change tomorrow for both of us. Wishing you luck.

Love and hugs,

Audrey

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Isn't the being unable to talk horrible? And so lonely and frustrating on both sides. Hoping you have a better day tomorrow. Love, ec

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Thank you what a terrible night George has been awake for the last 2 hours, feeling so tired, up and down for the last 2 hours, just feel like giving up, don't think I can carry on, he has just undone his catheter bag again, I feel so bad xxxxx

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Well an update on my sleepless night George has opened his leg bag 3 times all over the floor, keeps asking for water, telling me he is cold, I have covered him over don't know how many times, I have been up and down all night, oh the joys of PSP, I felt like running away, just want some nice time, be able to laugh and be happy, not be constantly upset over everything, just feel like sitting down and crying, my life is just passing me by, I feel like I am being selfish, but just so fed up with PSP. I want to go to bed a sleep, I want to be able to just walk the dog, I want to be able to not get upset ever day, over something stupid, because I am so tired. Sorry to be such a miserable so and so, but I feel like I am in a black tunnel and I am fighting to get out, had a bad week and going into the second horrible week. Moan over Yvonne xxxxx

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Yvonne my heart goes out to you.

What a trying time you are having and with no sleep. It is no wonder you feel so crap in yourself and just want to run away from it all.

I can't remember your circumstances. Can you get a nap in the day at all?

Hoping that today George is not as demanding on your energy.

Big hugs

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Yvonne I'm so sorry to hear that you are at such a low ebb. Perhaps you should go to your GP and tell him/her what a terrible effect this is all having on YOUR health. I think you get CHC so perhaps it's time to get some night sitters for a couple of days a week so that you can get some rest. Or is it time to consider a nursing home? Can you ask your CHC contact what extra help might be available to you emphasising that it is a health risk to George if he keeps pulling his catheter out and if you are not confident of using the suction machine.

I do hope things improve soon.

Love

Vicki

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You have said what we all feel and if the medics could read that, then perhaps they would get an inkling of just what it`s like to care for someone with this awful illness.

xx

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Yes very true they have no idea, what we go through xxxxx

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Yvonne, you have every right to moan. I feel like running away, don't know what to do anymore. Going to look into hospice at home, before I loose my mind completely.

Audrey xoxo

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Audrey I think it would be a good idea, it would be a good help for you xxxxx

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Yvonne, he is back in rehab. Had hospice at home come to the house and they were a total waste.

xoxo

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Oh no! I am really sorry to hear that. What happened?

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ec, Hospice offered if I wanted to keep him home a nurse 2 times a week for a few hours. If I wanted to send him to one of there homes, they will take him off off most of his meds, no rehab, basically in my eyes, killing him. Oh yes I would need a letter from 2 Dtrs saying that he had 2 months to live, which they would never do.

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I know how disappointing that meeting was for you. I also wasted some precious time with hospice, just to be told they couldn't help. Maddening and disheartening.

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ec, You got that right

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Did you know NannaB lost her husband?

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Audrey he will be fine, just worry about yourself xxxxx

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Yvonne, I am worried about myself. xoxo

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We all know where you are coming from so dont worry re moaning.I do alot of it all the time.We are all exhausted with everything cos we do absolutely everything.Took D to visit the nursing home today as he goes for respite on 31st for a week.Its so awful cos he cant speak or walk and now peg fed so he wont be able to enjoy the homemade food ! Bought fudge on the way home and it made him cough and splutter poor thing. xxxx

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Yvonne

You are a star! Of course you have down days. I had one yesterday. I felt like I wanted to go to bed and not get up again. I didn't get dressed all day. Just sat here and cried. I think it was because the previous day had been so nice and I thought that was probably the last time we would celebrate our Anniversary. I am probably very lucky to have got to 50years. I appreciate him now more than ever. Even though I felt myself getting cross today and had to remind myself he is a very sick man. Not easy at times. In fact bloody difficult!

Marie_1 x

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Maria you need to get yourself a few more good days. Maria I have one day of the week were I don't get dressed, I leave my pyjamas on, and just relax. We have been married 48 years, this year, long time, good and bad times, but happy, 3 beautiful children, and 4 adorable grandchildren xxxx

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ec, he freaked out the PT today with his lack of response. He almost seems comatose, won't respond to me either, most of the day and evening. They are suggesting hospice at home.

Love,

Audrey

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You know what you are so right! My husband said something today and I was so taken aback I missed it! Tried to get him to do it again but it was a one off! It means people don't talk to him. Apart from my little Grandson who keeps telling him he is the head of the family as he is oldest! He is a little sweetheart. He just takes it all in his stride and gives him tissues when he has a runny nose. Thank goodness for children.

Marie _14 x

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Sweet.

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So sorry for the terrible time you are going through. No sleep turns us all into zombies. Fortunately we haven't come to your situation yet so I've no idea how I would cope. You sound like you're doing a wonderful job without much help. God bless and care for you.

Marie

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Oh Yvonne it sounds just hideous - you poor poor thing. Nothing we can do other than send you virtual hugs & love & tell you that ur doing a fabulous job. Don't give up xxxxx

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Bless you Yvonne! This is such a truly hateful illness and so so unkind! As with pat and Keith I think of you regularly and wish there was something I could do to help! Sending you all my love and wishing you and George a better day! X

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Poor you and poor G this disease just does its best to suck the life out of sufferer and career. Life is very tough for you both and I feel so sorry for you both, it sounds such a painful and lonely time, nobody should have to go through this feeling so tired and unsupported it's little wonder that you are so upset and feel there is little hope or joy in your lives. Please try to stay strong and look after yourself Yvonne, easier said than done I realise. Ending you a virtual hug.

Love Kate xxx

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Yes HATE PSP too

Sending you a hug

Love Debbie xx

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Goodluck Yvonne whoever thought we would end up having to learn all these new skills - I certainly didn't .I hope George is more comfortable today.V has much the same feelings ie not wanting to be here anymore .It's so hard isn't it .

Love Georgepa

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Yes this journey is very hard for us all, I wonder what is going on in there heads. Thank you all for the hugs, I can feel them, it means at lot to me. Slept from 7.15 until 8.45 where careers came in, I can't sleep during the day, never been able too. Hopefully George is feeling a bit better still coughing, DN and doctor should come in today, more than likely the double injection and the patches have started to work, let's see what the day brings. Yvonne xxxxxx

George have you heard about CHC ? Xxxx

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My sister in law, when her husband was dying and she had insomnia, was told by her doctor that rest of any kind counts, and that she should lie down in a darkened room and not try to sleep but just allow herself to be there, doing nothing, thinking as little as possible, just rest. We all know when we get frantic to BE asleep it undermines our ability to get there. I have found that advice of great help. Please, Yvonne, try to allow yourself some rest while the carers are there if you can. Hugs, EC

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No nothing yet .V has patches,they are supposed to last three days but rarely last more than two .V is on one an a half .If I shut my eyes for a five minute doze V seems to sense it and calls out "don't go to sleep" so I don't .!

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George they said these patches should last 3 days, George normally say sit down as soon as I do, he wants something xxxx

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The patches we find last about two days , we are on a patch and a half . Dr says we can replace every two days if it makes a difference . V usually waits until I have sat down and then says " before you sit down can you do something for me " but can never think what it is she wants me to do . Her other favourite is ," can I ask you a favour ? " but again that's it .

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George it sounds just like George, when I go over to him he says I forgot, then when I sit down he calls me again, I usually say I am only sitting here tell me what you want, it is usually something like a tissue, close the curtains. George my George gets very thirsty with the injections, same medication as the patches, is V the same, also he seems to be sleeping less, is this a side effect? Yvonne xxxx

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We only have the patches and there have been no noticeable side affects but I think itcan vary from person to person .k

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What are these patches? And injections?

My guy also doesn't like seeing me sleep. He can nap as long as I'm up and about, but if I sit down and close my eyes, he needs to get up. He can't speak much, so asking for anything is difficult, but he can say HEY! Quite loudly!

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oh - scopolamine? I didn't know they had injections for that?

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Yvonne, sorry to hear things are so hard for you both. I wish you all the luck that George starts to pick up again and hugs to you.

xx

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Thank you xxxx

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Charles says the same. Yesterday was awful!

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Oh Yvonne !... I'm so sorry you're having terrible time ... sending you a huge hug and wishing you to stay strong . xxx

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Thank you, hopefully he will get there soon, he keeps on today about phoning different people xxxxxx

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It is so difficult for you both. Sending big HUGS. X

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Hi Yvonne, sorry to hear you are having such a rough time at the moment. You must get some rest. As EC has already said, any rest is better than none. When the Carers arrive, go into a bedroom, pull the curtains and hide under the bedclothes. Don't worry about sleeping, in fact try not to, I find that works wonders! Just REST!!! Or take the dog out then. Either be in bed or out in the fresh air when the Carers are in, even if it's only half an hour.

Next, you have CHC, dont you? Ask about respite for a week or two. I get regular weeks now. Off next week. It's so much better, knowing that I have a break due, I feel as if I can cope when things get tough. Knowing that in a few days, I can take some sleeping pills, lock the doors, take the phone of the hook, ( though you can't do that anymore can you???) and SLEEP!!! I know this will be hard whilst George is so poorly, but the minute he starts recovering, get on that phone!

Sending big hug and lots of love

Heady

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Heady went out with my daughter for a coffee, feeling really down at the moment, once George is better will do, we are being reassessed so waiting to hear from CHC , social worker said 28 days but it is well over that. Big hug back to you Heady. Yvonne xxxxx

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Why are they reassessing you?

Echo your feeling at the moment. S refusing to take any food or medication from me. Don't know what I've done, at this precise moment, I don't care. Even the dog is fed up of mopping him up. Has finally finished his dinner, 1,3/4 hours later, now I can think about eating. Personally, I would just like to curl in the corner, with a couple of bottles of wine and forget I existed.

Lots of love

Heady

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Heady it is the yearly check, George ask me every day what medication he takes, same questions every day, he takes the medication of the careers, no problem at all, me he makes a big fuss. Heady could I please curl up in a corner with you, I have had enough as well. Yvonne xxxxx

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Perhaps, instead of a giant scream, we need a giant curl up and cuddle in a big corner !!!!

Anyway, here's mine !

LOVE, Jean xxx

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Now there's an idea.

Lots of love

Heady

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Thank you Jean and one back to you xxxxx

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As long as you bring your own wine, you are more than welcome!!!

Lots of love

Heady

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Yes will bring a few bottles xxxx

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Can take three months to hear from CHC

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Yes they have a backlog of cases xxx

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I can't begin to know what you are going through or how you are feeling managing 24/7 on your own with hardly any sleep. Sending you big hugs and love and hoping tomorrow is a better day for you both xxxxx

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Thank you Millie had a good nights sleep so feeling better xxxxx

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Yvonne I am so sad for you. What a nightmare? Seems a lot are going through similar things at present. You like so many are doing so well. You must be so tired though? I am still tired although my husband is in the Care Home. I am not happy with it as like everywhere they don't understand what is wrong with him. They never help him to eat and I think he is really hungry. Either that or eating is the only thing he has control over for now at least? As soon as I go there he wants to eat some of his stash of food. He can't eat it because he can't open anything. Do they help? No! I tell them he struggles to eat because of his lack of strength. They tell me he is only like that when I am there! He is still able to eat for now but really syruggles to get the fork to his mouth. Drinking is a nightmare though. I am sure he doesn't get enough water.

Take care of yourself Yvonne. Hugs to you.

Marie_14 x

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Oh Maria that is sad, you think they would only be to ready to help him eat, open things for him, and at least help him to drink, maybe you should just turn up when they are eating, and see for yourself? Sending you s big hug. Yvonne xxxxx

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Yvonne we are all truly in hell with our loved ones. I spent most of the day there today. A doctor was meant to come to sort his DNR! This has been going on for 2 weeks now! It seems they forgot to register him with the local doctor! So now I have to go back next Tuesday. It took a friend over two hours to collect me and take me home because of rush hour traffic! My son and daughter had other things on! Words fail me!

He looked at a family photo today and asked me who the little boy was. It was our Grandson who he last saw on Wednesday! I am now worried sick he won't be deemed of sound mind to say what he wants. All he does is look at the clock!

I put the radio on today but he didn't want to know. He kept telling me to turn the TV off.

He eats everything he is given but struggles alone. As usual when I am there I feed him! I told them again but they don't like it! I asked them to weigh him and he has lost weight. I asked them for a special cushion whch made it easier for him to sit on. It had a puncture! They got one from the floor above. However by then he just wanted to get back into bed. His left leg was really painful. It is now so thin and the muscle has gone.

I left him there worrying myself sick about him.

Yvonne thanks for even thinking about us. You have so much to think of and cope with. I hope your day was better than mine? I doubt it however. Maybe we should all make sashes saying I hate PSP? Maybe someone would ask what it is?

Love to you both.

Marie_14 x

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Maria I think they are out of order, they should of registered him with the doctors straight away, hopefully they will do it next week. Where do you live? We are In Hertfordshire. Take care of yourself, Yvonne xxxxx

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Forgot to say Maria, George went to the centre, and I went to the hairdressers, relaxed for a few hours, then when he came home he was not very nice to me, oh well, I can't be bothered xxxxx

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Come on Yvonne, are you seriously telling us, your husband noticed when you had had your hair done before???? If so, WOW!!! have you got a special one there!

Lots of love

Heady

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No Heady he never did, even when I had something new on, he never did. Oh well I feel better myself , relaxed for a couple of hours. Everyone else says they like it . Love to you Yvonne xxxxx

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That's why we do these things, for OUR benefit, not theirs, that's just an added bonus. So of course you CAN be bothered!!!

Lots of love

Heady

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Yes you are right Heady, makes us feel better, after all the hard work of looking after them, me time xxxxx have a good weekend and a lovely break xxxxx

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Thanks.

Big ((((hugs))))

Lots of love

Heady

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All right know it all. Lol ☺

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Heady has this cracked! How many years have you been married? Here I am 50 years wed and still don't know what I am doing!

Marie _14 x

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Yvonne

Glad you got free time to get your hair done. My husband never says my hair is nice either. I used to get a tongue in cheek comment sometimes. I was usually asked when I was going back to have it finished! He thought it was funny but as I nam never hapy with my hair anyway it is as back home to put it right! Lol. Must be a man thing?

Marie_14 Hugs to you. X

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One thing I do for myself is get my hair done every 6-8 weeks, that is my treat to myself for all the hard work I do X.

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Me too! Wouldn't miss a trip to the hairdressers for all the tea in China!!!

Lots of love

Heady

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Yvonne

They have been telling me the doctor would come firstly one day last week, then when that didn't happen I asked could he come on Wednesday as I would be there from 11.00am onwards. No doctor! Was told they would get him for today so I go there again for 11am and again no doctor.

It was only when I stood in the office and was almost in tears that the person in charge today looked into his file and found the form filled in but not sent. Seems the other one was lost! Anyway the handyman took it to the doctors and delivered it or so I am told! I am going to ring the doctor on Monday to make sure as I am due to go back on Tuesday yet again hoping he will turn up!

I live in Cheshire. Health services and everything else falling apart!

Marie_14 x

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Oh Maria, I hope you get it sorted, good idea to ring the doctors, and check if they did put it in, could you do it yourself online, our when you are next down there? Feeling really sorry for you, you need to put your foot down. He far away are you from the care home? If you a a fair distance away, could you try to move your husband, into one near you? Sending you a massive hug. Yvonne xxxxx

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I have asked him if he will move closer but he just says he wants to come home and starts to cry. Trouble is I don't know if I could cope with it all again. He has deteriorated a lot. To be honest this evening I wondered if his sore leg was because of his Leukaemia. I have no idea where one stops and the other starts! He is so thin I am amazed he is still here.

I asked them to weigh him as I was sure he had lost weight. I was right! I brought him some sandwiches again as he has a good appetite. The problem is physically being able to hold the knife and fork. They also give some odd things to eat. Tonight he had a choice of tomato soup which he hates or Eggs Benedict. So he really only had that choice. They cut it for him but not small enough. So I cut it again but as he was in bed he was struggling to eat it. So I fed him. I got a frosty look when I said I had to feed him or he wouldn't have been able to eat it. Goodness knows what happens when I am not there?

I used to have cousins in Bushey in the 50's then when her husband died they opened a shop in Watford but when their Mother got too old for it all they moved to Hampshire. Haven't seen them for years now. The eldest who is male has Parkinson's apparently.

I keep telling myself you have to die of something. It's true but do we have to have such horrible things to die from? Looking at the appeal for Cancer Research tonight. Terribly sad too.

Marie _14 x Massive hug back to you.

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Hi Yvonne so sorry George is having such a hard time just breaks my heart that. There is so much suffering with this dam PSP it's so hard on us to just seems like it on going something new everyday sending you a big hug we all need that prayers for George and you.

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Always forget to put my name. Nettie

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Thank you Nettie PSP is the worse illness going xxxx

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How are u managing with the latches , which ones . They dried johns up so much he was so dry almost strangulated and delirious . Glycopperate no yes either

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I have thrown the patches out, read the side effects and they weren't very nice, aggressive behaviour, a lot of not good things, so have got rid of them!!!!! Yvonne xxxx

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