Just sitting here thinking, as you do, I was thinking about all you lovely people, and I was thinking about Pat and Keith, not heard from pat for such a long time. Pat before I went away, I remember that you were not feeling well, I hope all is ok, I have missed your posts. Big hug to you all Yvonne xxxxxxx
Wondering: Just sitting here thinking, as... - PSP Association
Wondering
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Yvonneandgeorge
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I miss Strelley, too. He was diagnosed with liver cancer after his wife died, and I have worried. And I hope Dorothy Thompson is finding some happiness now. And how about Nannygoon?
And Jimbo, Alana and everyone else we have missed. We are sending love to you all!
Lots of love
Heady
Jimbo died from cancer last month in Orlando
Was jumbo looking after his wife and she died recently? Xxxxxx
No, Sharyn died over a year ago from PSP. Jim contracted cancer, underwent surgery, then succomed this fall.
Oh dear that is sad xxx
Oh, I didn't know. That's really sad, It was Jimbo that got me through those first awful months. Some of his comments, struck home and I try to remember them, when I am down! Most of all, that not to get strung up about what stage S was and it live each day as it comes!
Rest in Peace Jimbo!
Lots of love
Heady
Same here. It is a reminder of how, as life, everything is evolving. Nothing stays the same. On this site we are losing and gaining people all the time.
We don't have endings, do we ?
It feels like the story of my life !!
love, Jean x
So true Jean. Yvonne xxxx
And judyj and zjillian. I am concerned about them. I wish they'd check in!
Easterncedar yes there a quite a few people that have not posted, hopefully they will post soon. Xxxxxx
So many people have come into our lives since PSP haven't they. I often wonder how folk are who we haven't heard from for some time. We all need to tell someone close to us how to access the site if we are unable to do so, just to let folk know of any changes. I will tell my son how to as although it's not me with PSP, anything can happen to stop me posting.
Sending you a big hug Yvonne as you are deep in thought.
X
Yes, that is a good idea NannaB, have it written in the rolodex or on the computer how to access this site to inform and update our fellow PSP carers and friends about us....I like that idea! Another good one NannaB!
AVB
Thank you NannaB my mind can't rest, going to go to see the doctor, for something to help me sleep, big hug back to you, how is Colin doing? Xxxxxx
Hi Yvonne, I hope you managed to get some sleep, peaceful sleep not the anxious nights you have been having. I wake several times every night but put the radio on a chat show channel (LBC) and that sends me back to sleep almost immediately. It stops me thinking and takes my mind off my tinnitus.
Our eldest son and grandson came for 24 hours on Monday. He noticed a marked difference in Colin. He last came 6 weeks ago. He rarely opens his eyes now but he isn't asleep all the time as if I say, thumbs up if you are awake, he moves his thumb but it doesn't go up any more. He can still sqeeze my hand though. Since Mark saw him last, he has lost the use of his legs. Even with someone on each side of him, he cannot stand or shuffle. He can't move in bed now and sleeps in the foetal position, he has to be turned. Despite regular stretching exercises and massage, his limbs have stiffened up and his arm above the elbow doesn't move making it very difficult to get him dressed. The sore on his bottom is still causing problems and I'm having to put him back to bed on his side after two hours. Getting him in bed isn't too bad but getting him out is very difficult and taking it's toll on my back. He is so stiff and heavy and can't help me. He can't sit without support for a second. It's not all bad though, he hasn't choked for ages and the pump definitely helps by getting rid of excess saliva and he still has a big appetite. I know he feels stiff when I'm moving him and it can't be comfortable being hoisted up but he has indicated he isn't in pain. He liked our son and grandson being here and "laughed" in his way at the funny things the 3 year old said. So we just plod on together. The words of that old song keep going around my head, Accentuate the positive, eliminate the negative, latch on to the affirmative and don't mess with Mister in between......or something like that, I'll have to google it.
Hoping your day is better today and sending you a great big hug.
X
Have you got the ceiling hoists yet , I do hope so.
It has made it so much easier for me , o wouldn't manage without it .
I make sure the bed is in exactly the. Right place for when I lower the hoist so have no pulling or pushing . I am I a routine with it now. .i never use the wheelchair now. Only the wheelie commode chair . I can hoist from bed to commode . Once finished I use my mirror with light sit on a stool , actually it's the smaller table from the nest we have . I am then able to cleans without it killing my back and he is still sitting I then am able to wheel the commode into the other room and his armchair l
I have learned to put his trousers on while on the commode and replace the pad . The I hoist into his armchair , I have already places a slide sheet over the back so I don't shear his back and the cushions , pillows , and shirt don't get ruffled up ,
I am lucky that John is mostly able to ease himself just enough for me to get his sling around his back . I have to wait until he is though .
How are you managing to feed Colin and keep him hydrated .
I have told my daughter to make sure to let my internet friends know if I wasn't able .
Are you still have the night sitter. Our care company appear to be in dire straights . the carers have no idea f they have work or not . So difficult for them, after all everyone has commitments .
Not easy for us either not know if they will be coming or not .. I have only recently started to have th pe same carers which has made a huge difference to me . I dread the thought of having to have a different company and start getting use to another 135 different carers , what a mess it's all in .
The social worker has been collecting things together ready for another CHC meeting. Fingers crossed now , it been going on for so long now will be glad when it's over whatever the result .
Thinking of you both hugs. Xx
Sounds like you have to be Superwoman, what noble people careers are to give such love,care and support to the special people in your life. Good luck with the CHC. Xxx
Thank you so much for the info re using the hoist. I have just had the first survey of the ceiling, then asbestos test next week. Hopefully it will make as much difference to my life as it has to yours. I am so pleased to hear about your experience as I wasn't sure wether a good idea or not. Now positive and looking forwards. Thank you Pauline xx
hOpe it won't be too long before you get it fitted . Our house wasn't suitable to fix the hoist to the walls or ceiling , they have provided us with portable ones . They are brilliant except you have to deal with the support posts and long feet . Some are not as long .i had to get rid of a sideboard and dining table but that's a small price to pay to be able to keep John with me .
The OT showed me how to use it . It took a while for me to be confident but once I did I was fine .
I can take johns trousers off and replace them whe he is sitting on the commode .
We have one I dining room where his bed is another in th lounge over his armchair .
I don't really notice them now as much .they are good to take pressure off as well .
John hasn't been able to bare weight for a ver long time now . .
pAuline I don't know how old you are I am 79 in February and I manage it fine ,. jOhn isn't a big man or difficult . Very grateful for that . I know we are not all the same .
The hoists we have are called Invacare mportable I believe . They are serviced twice a year but of course we can ring anytime if needed , once you have it you can claim a reduction in your council tax . Also register for priority with your electricity company in the even of a power cut .
Any difficulties just ask and for I can will help by telling you how it works in our case . Tai care xx Rita
Tank you very much for the above info Rita. Much appreciated. I haven't a clue what the hoist looks like or how to use it! The OT came on Tuesday and it all went from there. As we live in sheltered housing we had to have the surveys but they are being wonderful and pulling all the stops out. We live in a Places for People Independent Living unit and everything that they can do to help is no problem. Wonderful housing association.
Steve is 67 and I am 60 years old so feel as if our retirement has been lost (as also to a lots of others obviously). Steve is 19 stone so very heavy to move. He is pretty immobile and can only shuffle a few steps but enough to shower him in the morning and get him onto his commode but everything is getting that much more difficult now. We had carers a few month ago and they were awful. Not worth the money at all. I suppose eventually we will be back in their clutches but till that happens I am struggling on alone.
I think Steve is in his 5th year. Can date it fairly accurately due to the falls. Still onwards and upwards! Trying desperately to keep Steve at home as long as I can.
Take care of yourself as well as John.
Pauline xx
We don't have the new hoist yet but fortunayely C seems to have a bit more strength in his legs. They don't straighten but if I'm quick, I can get him transferred before he hangs. They aren't going to install ceiling hoists yet but a different mobile one. I'll let you know how I get on if/when it eventually arrives. We still have night sitters and fortunately we only have two, one for 2 nights and the other for 4. She has been with us for 2 years now and She is a gem. She is going away for 4 weeks in February and I'm not looking forward to it.
I do hope the CHC is granted this time. It's so unfair when some of us get it and others don't. I am truly grateful for every bit of help I get and wish every one could be so blessed.
Sending a big hug to you as well.
X
Practical and helpful. I dread the time we are at your point, but I can see it on the horizon, and am glad of your example and good advice, cabbage cottage.
Sending you lots and lots of love and big hugs, sounds as if you need it.
Lots of love
Heady
NannaB sorry to hear about Colin, going to pray for you. I think because we are with our partners every day we don't see to much of a change, it is only when someone comes in and they say, that you realise it, our maybe we don't want to see it?
I have heard the song, Sendings you a big hug and one for Colin.
Yvonne xxxxxxx
Im still here plodding on quietly I do log on most days and read up on any new posts. Its my morning for having a carer in today so I can escape for 4 hours and its not raining so thats good!!
Have good day everyone.
Sue x
Hi Sue, good to hear from you. Enjoy your few hours of freedom. I hope you are doing something good.....Christmas shopping? I haven't started it yet. I think I'll sit in comfort and order everything on line. The thought of spending my few hours of freedom in crowded shops is not my idea of fun.
Have a good day and rain stay away.
X
Dear Yvonne,
How lovely of you to think of us like that, I am so sorry I haven't posted for a while, so much has been going on in our lives that I don't seem to have time to think! It's all too much to explain to you, it would take me all night, but things haven't been great for us recently.
To put it as simply as possible Keith hasn't been too good recently and has turned quite nasty on me at times, I get so upset about it and can't stop crying
Our daughter has been having trouble with her pregnancy, she is suffering with intense itching due to a condition which I also suffered from in all my three pregnancies, she is being induced this Friday morning, the father of the baby is not a nice person and she has ended her relationship with him after months of me trying to make her see sense she has realised I was right all along (she turned against me in the beginning). It's all been so upsetting and worrying, I will be so relieved once baby is here and well!
I am also worried about my lovely mum, she is finding it difficult to walk now and is in hospital as I speak, after a nasty fall in wet leaves today.
I don't want to sound like "woe is me" but I have been really down lately and very emotional. I do think of you all the time Yvonne and will really try to get back into posting more often,
Love and big hugs to you and George....Pat xx
Dear Pat, you certainly are going through it. I'm so sorry. I hope things take a better turn soon, that your mother recovers quickly from her fall, and that your new grand baby arrives safely and brings you joy. Hang in there. We are all in this together, and we all care. Hugs and love, Easterncedar
So sorry to hear about all these troubles. Its enough dealing PSP.
We also are having to deal with family troubles. [ youngest son separating and living with us at present.] Lots of vicious acrimony and the prospect of a court case.
Its hard to keep a grip on emotions. I'm going to see a counsellor next week.
Love and hugs, Jean x
Hi Jean, sorry things are extra stressfull at the moment. I hope the councillor helps.
Sending you a big hug and sorry we couldn't meet today.
X
Pat sorry to hear things have not been good, hope all goes well on Friday, does not matter how old they are, our children will always be our babies, and I think as they get older, we worry about them more.
George was really nasty at the beginning, he can't shout now, but he is aggressive sometimes, and when I am helping him he will pinch my arms, our legs, it really hurts.
Pat I really feel for you with so much going on. I wish I could give you a big hug, and take you out for a big piece of cake and a coffee.
I was worried when you was quite for a while, I knew you were not good before I went away. Stay strong Pat. Sending you and Keith a massive hug.
Yvonne xxxxxxxxxx
Hi Pat, it's so hard isn't it and I hope you can find that extra strength you need to keep going. I'll be thinking of your daughter tomorrow morning and praying the baby arrives safe and well. As Yvonne said, your children are always your children and seeing them in distress is heart breaking.
I hope this new little life will bring some happiness back into your lives.
Sending you a great big hug.
X
Thinking of you Pat! Hope the birth goes well.
Sending lots of love
Heady
You certainly are going through the mill, bet you wonder what else the world can throw at you. I'm glad you managed to get to let the group know how things are and know there is cyber support from all of us, knowing and feeling your pain. A problem shared is a problem halved, so they say, just makes you feel better to let out your emotions to people who understand your plight. Hope you are feeling the comfort of this arm around your shoulder, hope things get better for you very soon. Love Kate xx
Hiw I wish my arms were long enough to reach out to you all , these illness affect so many in the family .
We are not living normal lives are we but its our normal now . I also feel very protective to my daughter ,
However bad we feel and when we are at our lowest wondering how long we can continue , we come in here and there is always someone worse off than ourselves .
Shall we start a choir . Maybe start with some carols
Rip jimbo, you helped me so much when I was caring for my mum it sure is a cruel world. Thinking of you all xx
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