I am sitting on Bristol Royal infirmary waiting for been to be taken to theatre for partial hip replacement. He decided he would try to get up from the chair unaided when his walking frame wasn't nearby. I had just closed my eyes for forty winks and he chose not to wake me to help. He has been recommended to have local anaesthetic and after recovery time in hospital the card going to transfer him back to East Sussex and he wi have to dodndxatvleast 4 weeks in rehab. Need to get things in place for him to to get home, this is going to change everything. Feeling overwhelmed. Kate x
Hospital: I am sitting on Bristol Royal... - PSP Association
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Katiebow
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As if things aren't tough enough already. I'm so sorry Kate, it's awful for both of you. They shouldn't send him home until you have all necessary extra equipment required so make the most of your time alone to catch up on sleep and maybe even get out and have a bit of fun while he is being looked after. You will need all the emotional and physical stength you can muster for the future. I do hope the op goes OK.
Sending you a big hug.
X
Need those hugs at the mo, my emotions are all over the place, sad to see him looking so helpless, angry that I will miss my grandson,s birthday day out and being with my family. Why oh why did he not ask, seems all my nagging to keep him safe just didn't register. As Ben would say 'such is life'
K xxx
Sad to say, all part of the PSP. Why should they ask? They can do it....or so they think. In my husband's mind he was the same as he always was. He didn't feel ill, just fell sometimes, so why bother me just to help him walk, it ridiculous to even think he needed help. He was like that until he couldn't physically move his legs enough get out of his chair/bed. Before that he would try and climb over the bed sides . Unfortunately Katie, although it is natural to tell them to stay put, we are actually wasting our breath.
It is annoying and sad to miss something we have looked forward to. It's happened so much to me that I now expect not to go to anything planned and it feels so great when I/we do get there.
Let's hope you manage to have a catch up day with your grandson and family when things settle down.
X
well said, Bev. Infact as i was reading this, my husband fell yet again . He failed to tell me he needed help and decided to walk on his own ...two steps later I am scraping him off the floor as he lays there trying to figure out what to do.....I don't know if it is a dementia , a form of dementia, loss of muscle memory.... I believe he feels that nothing feels like it will work for that task....You know , bending his knee t lift himself up etc. ....and then after I get him up off the floor in the hall, I take him to the garage for his smoke. he has to navigate 3 steps down...we do this by me holding him by his waistband ....good now the getting back up the stairs...same method and as soon as he gets in he falls! I try to hold him up and its as if he just WANTS to fall. no muscles are even flinching to keep himself aloft! and once again he stares at me like a baby bird just out of the nest! What to do besides give up letting him walk all together..which has been the trend lately.
Praise God B has not hurt himself to need anything replaced.
I am so sorry KB, that you and your husband have to go through this.....I wonder if it would be good for him (and you) that he recuperates at a nursing home. Trying to roll him in the bed from side to side to change and or bathroom him is going to be a chore; even more so it could be dangerous to the health of his replaced hip....that's to think of for the future for now do like NannaB said and GET SOME UNDISTURBED REST...and then go and have some fun.
AVB
i agtre aannanb
as usial you talsense
;lol jill
zzzzxxxx
Oh poor Kate, I'm thinking of you, stay strong! xx
Thanks Pat, could have done without this down in Bristol. Xxx
Thanks Pat, I'll try my best. xx
Sorry about the errors in the message. Xx
Oh Kate that's awful for you and Ben. Hope the op is successful. As if life wasn't hard enough. Obviously Ben likes a challange!!! As NannaB has said, please, please take some YOU time. You don't need to sit in the nursing home, every hour of the day, he will be fine. Life will be hectic enough, trying to sort and liaise with all the changes in your home. Make sure you get plenty of rest.
One other thing, in your post you say,"HE decided to get up from chair unaided....HE chose NOT to wake you" Our loved ones still have that ability to decided things for themselves and chose whether they think it's safe or not! While obviously, we TRY to get them to take the sensible course, WE can't not be responsible if they chose to ignore us. This IS NOT your fault, so I really hope you are not beating yourself up too much🛫🐷🐷🐷🐷🐷🐷🐷🛬!!!!!
Sending big hug and lots of love
Heady
Heady, it's the 'if only' syndrome popping up in my head all the time. I know it's not my fault but could have made sure walker was at hand. Kicking and cursing as I know this is going to change things for ever. Will try to get some me time whilst he is in rehab and get that wet room and a downstairs bed organised thanks for your kind words. Love Kate xx
Hang on Kate, and try to use the time he is in rehab to get some rest for yourself!! As for the accident, we are in the same situation. I scold and scold, but the thing is my guy CAN'T think and can't make decisions. The impulse control is one of the first things to go with psp, for most folks, and the executive function gets shot to hell. If the walker had been at hand, your man mightn't have tried to use it. I know my guy won't unless he is coached at literally every step. He can't walk, and can't be stopped from trying. It's very frustrating for us both. And the falls don't teach him a thing.
Try not to worry too much. Hugs and caring thoughts, Ec
Thanks for the message EC, I understand that they loose their ability to risk assess and can't help themselves. It is so hard to be understanding all the time especially when it prevents you having precious time with my cute little grandsons, haven't seen them since March and then this happens. I'm so upset with what this horrid disease does to your life. Thanks again.
Kate xxx
Katie sending you a big hug, listen to the others make sure you rest while Ben is in rehab xxxxx
Thanks for your good wishes, think I will need them! Kate xx
Sorry Kate will make it much harder on you, please heal fast, I ask myself over and over why do they not ask for help, but I know it's part of the PSP syndrome, I think it is hard for them to realize that they cannot do what they used to do and just go ahead and do. It. Will you have extra help? Many Blessing to you and your hubby. Nettie
Kate
Shit happens. (Can I say that?)
Stay with it.
Nightmare it is, but I guess you have seen many other nightmares through.
Get clever... put things in place... get the resources you need. Set things up to work.
Wishing you well
From another survivor.
Will be on the case when I get back to East Sussex, must say Bristol seem quite on the ball with rehab etc, will see what East Sussex has on offer! Kate xx
What a nightmare for you both but you don't need me to tell you that. Hope you get the help and assistance to get everything in place but also that you can find time for yourself to rest and maybe meet up with friends for coffee / lunch. Sending you much love, Nanny857 xx. 💐💐
Oh, poor you ! Its a nightmare.
The issue of him not letting me know he needs help is driving me mad at present. I just find it so hard to accept that he can't see it saves time and effort. He has no regard for me. Then he looks so bewildered. I'm just full of rage with him sometimes.
No-one wins, do they ? I am hoping to reach nanaB and Heady's state of acceptance.
I know it wasn't easy for them either.
The only good side is to make sure you have time for you, including enjoying your delightful grand children. Cuddling little ones is very healing.
Love and a big hug, Jean x
Thanks for the reply, know I will really have my work cut out as from now. When we get back home I have lots of sorting to do for when Ben is allowed home. I will try to catch up with friends and make good use of the time. Calm before the storm I guess.
Love Kate xx
ME, accepting????? I'm afraid I am like everyone else on here, I can talk the talk, but walking the walk, forget it!!!! I wouldn't want to speak on NannaB's behalf, but I'm betting she will say exactly the same. In one way, life does get a "bit" easier when our loved ones are wheel chair bound, but only as long as the super glue holds!!!
Lots of love
Heady
I just can't believe what an angry person I can be sometimes. Well -often now. I get more angry and shout at Chris in a week than I would have in years before PSP. He is deaf so I have to shout to be heard !
I feel quite ill with it. I don't want him to be wheelchair bound but it will change my worries.
However he is as sweet as ever to me. It goes over him and he bears no grudge. He says he is happy.
Love, Jean x
Oh Jean, you should be in my house, to see what I shout and scream at S and over the most stupid things!!! PSP does horrible things to both parties, the suffer and Carer alike. Nobody is immuned to its vicious tentacles.
Am I right, that you go to counselling? I am sure you have discussed the anger and been told how normal it is, for us to be feeling like we do. Have you been told about the 3 or 4 R's?
The choice we have:
4R's - React, Retreat, Reflect, Regret!!!
OR
3R's - Retreat, Reflect, React!!!
In other words, when things get tough, "Retreat" leave the room, turn your back, take a deep breath, "Reflect" none of what is happening, is either of your faults, "React" sort the problem out, in a calmer way.
Stop laughing!!!! It does work, well it did for me once!!!
Hope you have a good weekend. Soon be wine o'clock!
Lots of love
Heady
Just started a G/T.!!
Actually, Heady I am a trained counsellor ! Worked in my own practice for 20 years ! I know all the theory but none of it stops the feelings. We manage it well together really but its not a good feeling. I feel very tired from all the emotion.
I have used up my counselling hours at present but will return. I know for me its so hard feeling everything is out of control with PSP. Also there are problems for my children [ not with us ]. The political situation is just the last straw. Feels the whole world is going to pot !!
Another G/T I think.
Lots of love, Jean x
Hi Heady, I don't have counselling, so thank you very much for your post, I'll try the 3R's. I feel like screaming and shouting at W many times but instead I hold back as I don't want to hurt his feelings.
Enjoy your wine, lots of love, Nanny857 xx 🍷🍷
Hi Nanny857, what about your feelings? They matter just as much! The 3R's work, but you still need to express your feelings.
Not really enjoying my wine tonight, S has had a major choking fit, lasting most of the evening. Not sure what to do, apart from keeping him calm. How I hate this disease!
Lots of love
Heady
For Chris he isn't affected by my shouting, as long as all is well when its over. He is happy as long as I am nice to him before he goes to sleep. I always say its really PSP I'm angry with.
You need to express anger or you are carrying it all the time. Its exhausting enough.
Jean x
And there's me thinking I am the only one who screams and shouts at somebody they are supposed to be caring for!
Xx
Sorry only just seen your post, oh Katie what a blow, I so feel for you. My husband will still get up and move/shuffle around without his frame, even when it's beside him, just putting himself at risk! Just an accident waiting to happen, So dont beat yourself up
I wish there was something I could say or do to help, but all I can do is send my love
Debbie xx
Thanks for your message Debbie, I am feeling a bit numb after the last few days events, sure it will all become very real when he is transferred back to East Sussex and I have to start getting things into place. Got a feeling that this accident will speed up his dependency on me and I guess outside help as he won't manage the stairs and other things now.
Love Kate xx
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