Nigel has CBD. We had a wonderful Revitalise respite week once we got there and were very sad to leave on Saturday having met up with old friends and staff and made new friends. Unfortunately on Monday he came down with a cold and was taken into hospital yesterday evening by ambulance as he had a very high temperature and seized up and could not move his right leg leg at all and had a marked right sided lean. I got home at 2.10 this morning and went in again today. Luckily this time they did get him on to IV antibiotics in A and E his mobility was very slightly improved before I left this evening. However he is so muddled as to why he is there and just wants to come home and I can do nothing about it. The problem is that because he doesn't look as if he has any cognitive impairment and can still communicate, albeit a bit slurred, they do not see the need to take extra time to explain things to him in simple terms unless I have spoken with the nurses and HCAs myself to explain that he needs simple instructions for everything he does. There was a marvellous nurse on this afternoon but he has just been moved into another ward and they phoned to say that he was agitated so I had to try and explain it all to the nurse over the phone and yet again explain that he cannot use the call button because he does not understand what to do with it. I have taken the Alzheimers 'This is Me' in with him but it has been put in the nurses notes, not beside his bed so that anyone caring for him can read it, and when I asked the new ward to do this they say they cannot because of data protection. I will go in tomorrow and sort this out but it is pouring with rain and I am tired and cannot drive back there tonight as it is 19 miles. Just feeling useless and so sad for him.
Ali B
Written by
AliBee1
To view profiles and participate in discussions please or .
So sorry to hear this, what about seeing if they do Home from hospital, where nurses come in a few time a day and give the antibiotics? George has had the home from hospital, he was agitated when he was in hospital, got on so well when he was home. Hope you can sort it out. Sending you a big hug, feel like you need it. Yvonne xxxxx
Dear Yvonne. Thank you for the hug. Need it. Sadly they do not have this service in our area. The infection is however under control so the stupid consultant told him he could come home but physios and OT say no way as I would not get him into the house or be able to cope with him on my own in his present state, so he was very annoyed with me when I did not arrive and promptly take him out. It is so sad for him as he was so pleased when I arrived and I felt to horrid. Just have to see what tomorrow brings.
Oh dear, glad he is better, unhappy for you he can’t come home, get everything in your place before he comes home, don’t have him home until they put everything in place. Yvonne xxxxx
I have been looking at local bungalows over the last few weeks as I realise that our house is really not suitable when things go wrong despite having made a wet room, installing a stair lift, having grab rails all over the place and commodes up and downstairs and a hospital bed. I dread a move but I think it will have to be if I want him to stay at home.
Ali we moved into a bungalow just over 4 years ago, we have a wet room, we had to do a few things to make it more wheelchair friendly, but it is the best thing we ever did, children are not far away, actually one daughter is just 5 minuets away, other 2 children are near xxxx
Oh Ali, how sad... We handle all we can at home and expect that when our loved one goes into hospital the REAL experts will take care of everything because they are trained health professionals! One of the cruellest things about PSP/CBD is that the health pros Don't Get It - and they have these strict routines and protocols that seem to get in the way of our trying to enlighten them!! (After all, what could WE know, compared to the Quality Assurance Department of a Hospital??)
Yvonne's suggestion sounds good: the more I read of these posts, whatever country we are in, the more I think hospital is just for the Emergency portion of the problem (..as in, - make sure he doesn't die tonight...then - give him back to me!!) Home care sounds better, IF you can get the right support at home??
Hugs to you in this stressful time (aka..No Good Respite goes Unpunished? - ha ha!)
Hello Ali, sorry to hear Nigel has had such a bad time after your lovely week before, I often find this happens with Ian, last September he came home from respite on the Saturday and was in A&E by Sunday lunch, with sepsis and a uti which left him catheterised, I think they get overtired very quickly.
I was told by a professor of neurology that we saw that CBD has slight dementia with it, and also That when someone asks a question, it is like they are speaking French, but your husband doesn’t speak it,so has to work it out before replying, often they say no when they mean yes, and shake the head instead of nodding, which is confusing.
PSPA have small fact cards, about the size of a credit card which are brilliant, I always have a bundle in my bag, and when in hospital give them out like sweets to all and sundry, so important to raise awareness, I put them in Christmas cards too, and have them around when doing a raffle or fundraiser.
Ian now needs hoisting and uses a wheelchair when we go out, I hope this is of some help to you, and chin up xxxx
If you phone the PSPA helpline, they will send you as many as you require, I think I got 100, but need more now, also if you don’t have one they send out fact folders with lots of information on the disease and the various stages and symptoms to look out for
Sorry I haven’t got the phone number to hand ,it is on the website though, good luck xx
Thank you so much for your reply. That description of someone talking in a foreign language will be very useful. I recently was given some of those cards which I have now taken in but then I had one doctor said today that he did not realise Nigel had PSP which he has not got so I may have muddled things. I think I will have to attach something to the card saying look at this site to learn about CBD.
Nigel has not needed a hoist so far but the physios and OT say that there is no way he can come home right now as I would not manage him single handed. He has a wheelchair when out but uses a zimmer round the house but his is not back to that state yet. Have to wait and see what tomorrow brings. xxx
Before I had the hoist I was given a standing hoist called a kaluf, may not have spelling right on that, but it was my life saver for a long time, you have to be able to weight bear, which Ian eventually couldn’t do hence the ceiling hoist we now have. But it is great as you put a sling around their back and hook it onto the mini hoist, then use a remote control which brings them up to standing and you can wheel them from bed to chair/toilet, lower down then lift up again and the feet move to go around the chair etc, also good for getting into wheelchair. Also ok for bed to chair if on ground floor.
Ask the ot team, before we moved into our bungalow we had to put a bed in the dining room as Ian’s legs started to give way halfway up the stairs and several times I had to call paramedics, but I was scared to death he would fall and had to prop him up while trying to get my mobile out, not a manoeuvre I would recommend .
But I digress, back to the hoist, it has a platform for them to put feet on and is a fantastic piece of kit you could look it up before you talk to them, then you’ll have a better idea, they are very compact so don’t take up space either
Good luck with it all but it sounds just what you need I managed it on my own and at the time Ian was about 7 stone heavier than me
Thank you so much. I will take note of the info re the hoist. He is still in hospital and I have been there all day so worn out but he was calmer when I left and more alert and I felt better about leaving him AND the This is Me is at the bottom of his bed. Yipee xx
Anne you have hit the nail on the head! Hospitals are good for emergencies but after that they don't know what to do with patients unless they are the walking wounded who can be sent home. There is actually an entire tier of care missing from the system. That tier would in my humble opinion deal with people with complex needs. Nobody wants to acknowledge that or pay for it either. When did the human race turn into such an uncaring bunch of people?
I agree with you about expecting them to be safe and understood in hospital but I sometimes wonder if they have any idea at all. All sorts of things were wrong when I got there today as I don't think anyone had read any of the info I leave there with him and he does not realise things are wrong.
Sadly Yvonne's suggestion cannot help here as they do not have this service in our area. The infection is however under control so the stupid consultant told him he could come home. Can they not realise that you do not say things like that to someone with their condition as they latch on to it only. The physios and OT say no way can he come home as I would not get him into the house or be able to cope with him on my own in his present state, so he was very annoyed with me when I did not arrive and promptly take him out. It is so sad for him as he was so pleased when I arrived and I felt so horrid. Just have to see what tomorrow brings.
Right now I need to snuggle up in bed with a hot water bottle knowing that I will have a rare uninterrupted night.
I am so sorry that things are so hard since you returned from respite. You were so looking forward to this.
I hope Nigel is feeling a little better. It appears that any time you are able to rest, on returning home there is something that brings you back to the reality of your situation. Any benefit is soon lost. PSP/CPD are relentless in there progression. I know Les couldn't respond to the nursing staff when he was in hospital. On his last hospitalisation the speech and language people put a notice on a wall by his bed explaining how to communicate and to give Les time to process what was said to him. I was really impressed by this as somebody kindly realised that he needed time. I have kept this notice as it was the first time anything was given to help Les with his communication issues. Seems silly to hang onto this bright yellow notice but it was the first, and sadly, the only time this was done. If Nigel was given something similar it would be helpful for you both.
I am sending you love and hugs. I hope Nigel improves soon.
Thank you for such a brilliant idea. I think I will make my own notice and take it in with me tomorrow. I know once before a ward clerk made a big sign in red letters sayin 'allergic to Tena pads' after the 3rd time I found him wearing them even though I had brought his own ones in with me - and he was in them again when I arrived today !! It is ALL in his This is Me which makes me so mad.
The respite was lovely but I do so miss all the other carers, volunteers and staff company. Thank goodness I have you lot xx
Thank yoiu for the love and hugs. Hope all is well with your family'
I hope it helps. It was a bonus for Les. Fortunately the staff paid attention to it and Les was able to communicate a basic yes and no. At other times even the consultant gave him more time and waited for a reply. I was just incredibly grateful that somebody took the time to write it and show that they cared.
We are doing okay at this point although I am unable to clear this chest infection. I am doing my best to fight it though. I am struggling a little with floods of tears as Les was always here for me and I miss him and the hugs he would give me.
I hope Nigel is feeling a little better. If the staff take time with him he would benefit much more and perhaps not feel so isolated.
I feel for you, I have had to finally put Leon (Hubby) into care 4 weeks ago, he is non verbal now (P.S.P) can do nothing for himself, the emergency/contact buttons do not suit him, he cannot manage to push the button, so he is anxious continually, insists that his door is left open, so that hopefully when someone walks by he can wave out to them, today when I went in, they had FORGOTTEN to feed him, P.E.G. fed, naturally I did it, but no explanation, no-one, after I went and asked if he had been fed, got back to me, naturally he said (via Alphabet Board) to me, see how they treat me !!!!! It kills me to leave him there, they are generally lovely staff, with the exception of the male nurse who forgot to feed him, he certainly has an attitude. On the whole it is a nice home, and I guess teething probs will happen everywhere
Thinking of you Cheers from Howlong N.S.W Australia
This happened to my husband too. He was left without anything to drink on at least one occassion! I went to visit and at first I thought he had finished his jug of water. Goodness knows how but they must have got it into him without him choking. I suppose he was desperate?
He had lots of Smoothies in the fridge but he had an empty cup and was sucking on it. I got him a fill up and he was so thirsty he was drinking it too fast so I had to tell him to slow down.
I was so upset to think I was actually asked if I would like a drink but he was totally ignored by the awful woman on duty! Some of them are not fit to take care of animals. My husband didn't have a PEG and they refused to feed him! Such cruelty! I really can't think of it any other way.
I am so sorry to hear that you have had problems with Leon's care. It is really unexceptable. I would complain to the manager about that male member of staff.
Nigel can still communicate but he does not remember what he should have or not have so we have in England a form called This is Me and all his likes/dislikes, how to communicate with him, how to calm him down, why he has certain meds and needs supervision with feeding and a beaker to drink from but it had not been read so all sorts of things were wrong when I arrived today. It makes me so mad.
On a smiley note - last time he was in hospital they gave him the emergency button and I told them that he would be unable to use it but they said that they had to give it to him. Later I went downstairs for a coffee and when I got back the nurse said that he had been using it all the time. I was very surprised. 'Yes' she said 'He has been holding it and pressing it holding it in front of him saying - bloody thing. I cannot get Alui on this stupid phone.'
I hope Leon's care settles down soon as they get used to him and him to them. Good luck
Thank you so much for replying, it helps me get through this terrible illness, Leon's brain is so so good, it is so so sad to see what he is now living with, I went away for 4 nights the 2nd week he was in care, as I had to get work done to my Motorhome, (my house) and when I got back he said he had only had 1 shower in 5 days, when I mentioned it to the registered R.N. she checked and said they had put down that they had showered him on the Tuesday, his response, "So in other words I am a lier" she said No not at all, maybe they marked that you had had a shower and in fact you hadn't,!!! his shower day was different to what they said they did, so I know whom I would believe. It is bad enough, that he is in care, let alone having so much time to think, and some just do not care enough to take the time to get to know him. Lots do and they are wonderful but there are always exceptions to the rule. I have left a manual on P.S.P. but the response, was we don't have time to read it.!!! Love the Button / Phone response of Nigel. Made me smile which is always a good thing.
Big hugs. Hang on in there and hopefully things will get better but I would still keep a written record of your concerns and then ask for an official recorded care plan talk with the manager and have someone with you. Glad you had a smile xxx
Thank you, I am diarizing everything. I spoke to the Great R.N that works 5 days a week today, she is putting some things in place also, as she said it is not good enough.
When my mom was in the hospital recovering from surgery for esophageal cancer, she was very scared and disoriented. My father wrote up a blurb about my mom (her anxiety ... and even some of her family’s cancer history) and then attached it to her chart. Course, this was before computerized charts but it goes along with what Pat was saying about getting something posted in the room. Maybe all who cared for her there did not read it, but it sure made my dad feel like he was doing something to help my mom’s treatment.
Thank you. Good on your Dad. He sounds like a lovely carer. I think I am going to make my own sign. What makes me mad is that it is all in his This is Me but it is not available for people to read and he just smiles at them all not realising that he is getting innappropriate care. xxx
Ali your example of what you are both going through at the moment is so sad. It is also the story of everyone with PSP and CBD. Maybe PSPA could put it in their magazine? We desperately need to get so called professionals to understand these conditions.
I hope you have been able to get through to them today, and hope your husband is feeling a bit better today.
Hi Ali. So glad you had a good Revitalise break. We went to Southampton and it was dreadful - left after 3 days. We then went (nervously) to Southport and it was wonderful. Not sure why they keep the management at Southampton. Where did you go ?
Your story of hospital treatment echoes the experience of others - I don't understand how nursing staff can be so useless.
Our GP visited today and I told her under no circumstances will Valerie go into hospital for anything except broken bones - I'll care for her myself with help from GP and Hospice. Surprisingly she agreed that would be the best option for a PSP sufferer - a GP who actually understands !
Feel so sad for your situation and hope you can chase up these people to get an improvement.
We went to Southampton where we have been before and it was lovely. If you went last year things did go wrong there but it has all been corrected and things are good there again now. They really took notice of all the negative feedback and we all had such fun there this time and several new couples have booked to return. I am glad you enjoyed Southport - my old man's birth town. Sadly it is too far for me to drive there especially as I need a new hip and Southampton is about my limit for driving.
You sound as if you have a great GP. Problem is that I physically cannot manage Nigel when he seizes up much as I would prefer it to hospital admittance. I have been looking at local bungalows over the last few weeks as I realise that our house is really not suitable when things go wrong despite having made a wet room and installing a stair lift and having grab rails all over the place. I dread a move but I think it will have to be if I want him at home.
I think today I managed to get a nurse and HCA to understand his needs and they are both in for the next couple of days so hopefully things will be smoother.
I know moving is a hassle and stressful but I think you are right to look for a bungalow. The only downside is that it might upset Nigel.
Valerie fell and broke her ankle 6 years ago so we moved to a bungalow after that. It's no fun not being able to go upstairs to the bathroom for 6 weeks !!
We did have to move from Reading to Wroughton near Swindon to find a bungalow within our budget but it was worth it.
Could you look at getting carers in to help with him at home ?
So sorry about your return from respite. It seems fairly typical of the disease process and it often seems to happen after respite. My husband went straight from respite to hospital twice last year - once with aspiration pneumonia and once with a blocked PEG .
I have always found the Speech and Language Therapists pretty good and I still have the communication instructions they provided up on the wall in his bedroom at home- a year later. Ask to speak to the SALT and they will ensure he has that info somewhere prominent.
It is so frustrating about the hospital staff but I think it is a very rare condition and they find it difficult to get their head round it. Last time my husband was in hospital i explained very patiently and clearly to the nurse that he had no voluntary movement in his arms and hands or indeed anywhere so couldn’t make any purposeful movements. The nurse listened very sympathetically and then placed a call alarm on his blanket and said to him ‘ if you have any problems just press the button and someone will come’. It would be funny if it wasn’t so sad. Feeling for you. It is always so awful when you are so tired you can’t face going back to the hospital. Look after yourself x
Hi. If you read my reply to margh2468 you will see my comment about call buttons. It is so sad but I did have to laugh. I wish I had gone back to the hospital now as it woukld have saved a lot of problems and things going wrong this morning but I think it would have been dangerous for me to drive. I will however be going higher and suggesting strongly that when patients have rare conditions they should NOT be moved in the evening when family or carers are not around to act as their attorney for the benefit of the patient and the staff.
I have just phoned the ward and asked them to give him a hot chocolate to calm him down as that usually works at home at night and apparently he thinks it is 10 in the morning and wants to come home. I am going to bed with a hot water bottle and hopefully snuggling up for a rare uniterrupted sleep. Thanks for your support. Ali B xx
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.
I'm feeling very sad today :(
Good hospital
Feeling Sad
