Although I didn't think it was possible, P has become even more confused and restless today. He has started taking off his clothes and keeps trying to get out of his chair constantly. When I ask him why or what he wants, he just says "I don't know".
He keeps muttering under his breath and I think he's having some kind of crisis/breakdown ! We are due to see a neurologist tomorrow but I bet that he will behave perfectly when we get there and everyone will wonder what I am worried about.
There is no UTI because he has just finished a week's course of anti-biotics.
It feels like I am in an ongoing nightmare. Sorry for the ongoing rant.
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NanBabs
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Hi Nanbabs it is always the same when you go to the doctors etc they behave differently, and then you feel bad, because you now it is not the true picture,. George calls me and when I ask him what he wants, he say I have forgotten, our I don't know, this illness is a nightmare, but we are all here for you. Hope all goes well when you see neurologist tomorrow. Big hug Yvonne xxxxxx
my sympathies are very much with you on your situation. As a health care professional I am very often frustrated when doctors will not listen to you when you inform them of behavioural difficulties. Might I make a suggestion that you write down every behavioural issue, with date and time and present this evidence to the doctors, your GP, and any other health care professional who will read it. Having something documented is far more compelling for us health care workers. In the health service we have a saying that " if it isn't written down, it didn't happen". Although I can't promise this will work I do think it is worth a try.
This is true. I have to document everytime B falls. We have reduced it from 2 to 5 times a day to that per week . I would not have noticed such diminishment of the falls without this document!
Yes, I too record as much as I can remember at the end of each day and we have Homeline who come to get P up after falls, so they too will have records.
Thank you for the advice. I have tried filming things on the ipad and I feel really bad doing it, but when I have showed doctors (always with P`s permission) none of them seem to take it seriously.
I also keep a `diary`for my own sake as all the events and bad behaviour seem to blend into one and, sadly, I keep a record of bowel movements etc too !
After our experiences in the clinic again today, one of my sons has suggested writing to the various departments/agencies involved with P to explain our disappointment. So maybe your idea of putting it all in writing is a good one.
Great suggestion with the writing things down. When my husband first started getting sick five years ago I kept a diary of everything (appointments, drugs started and stopped and reactions to them, etc) It was invaluable when we made a move across the state and had to get new caregivers. I got out of the habit of doing the diary thing and I need to start it up again. Also gives me a place to go back and see what I did about something that I might have forgotten about.
Ooh scary! He might respond to a message. you know how your muscles ache and a good message makes them feel relaxed. also I hate to say it but PSPers can experience depression. They wanted to give antidepressant to my husband for sleep but after a month or so of taking it, he did not rest better and he gave it up.
Maybe just put a robe on him or what I used to do with my autistic kids is gently press and release especially their joints ...i wanna call it proprioceptive,,,something anyway Gently push joints toward each other like his knuckles then gently pull on them, do maybe his elbows and wrists don't want to make anything pop. more to let the over- or under- stimulated nerves get some understood stimulation. If he doesn't like it well you tried. His body may be just having a bad response to not doing stuff like he used to.....
If I can muster the strength I may well try that massage idea. I gently rubbed his tummy when he was having his constipation problems. I don`t know if it helped but it did calm him down a little.
P has had antidepressants in recent years but they seemed to make little difference, along with lots of other drugs that were tried in vain.
After being an active person all his life it must be difficult for him as he was never a hobbies man, so he doesn`t read, watch TV or do anything these days. It is incredibly hard work to keep him occupied or entertained especially after yet another disturbed night.
Hi, we had this while back, somebody was doing something strange and out of character and nobody was taking any notice. The suggestion then was video him, with your phone or iPad, if you have either and show it to the doctor! They won't be able to ignore you then, can't promise they will do anything, buts that's another story!!!
Thanks Heady, I tried that a few months ago and showed it to the doctor at the memory clinic (with P`s permission). She frowned, nodded and handed the ipad back without any more comment !
I often feel like banging my head against a brick wall ... but, oh, hang on, that`s what dealing with doctors feels like every week !
Hey NanBabs, big hug from me too! We all understand how frustrated you both must feel. My mum constantly gets up and down out of her chair for a wander. Especially in the evenings, and I think it's because she's bored. Her mind is active and restless and she feels wandering is some form of independence. its very irritating for me though as I have to silently try to stalk her everywhere as she's so bad for falling. Takes a lot of patience especially when she has no reason to wander. I'm trying to think of other ways to keep her mind busy. Word searches with large print are okay but other crafts seem to difficult.
I also keep a diary! It's laborious but I write down every fall, bowel Movement, behavioural quirks, hospital appointments and points raised, antibiotic courses for UTIs etc as well as info on all phone numbers and the tons of mess she has to take (because PSP isn't enough, mum has diabetes, hypertension, osteoporosis and COPD too! 😣)
Mum takes jumpers on and off regularly but doesn't strip! Unless she's had an accident .. Are there things you can get for P to keep his mind active?! Puzzles or documentaries of interest? Or depending on his mobility those pedals you can sit in a seat and use on your feet or arms. Perhaps a way of relieving any boredom or tension might help with the restlessness? If I'm honest I'm too tired by the time the wandering kicks in too be too inspired with activities but I think it may help!!
Stay strong and remember you're doing a great job and even if it's not always shown, you're appreciated!! Xx
Hi Kelly55, thanks for the reply, the virtual hug and the advice.
P cannot even stand without support, so moving around is slow and with my constant attendance, so every time he tries to stand I am on alert.
Because he was `action man` doing all kinds of sport inc. football, tennis, badminton, cricket, table tennis, golf and swimming, I always try to find something on TV (we also used to enjoy horseracing) but he is not interested in watching anything for longer than 5 minutes or so.
I`ve tried jigsaws, adult colouring books, paint by numbers etc etc - you name it we`ve tried it !
We have one of those pedal machines too but he will only use it occasionally and briefly.
Like you, come the evening I`m too exhausted to `amuse` him, so my temper gets shorter.
It must be even more difficult if P was so active prior to the condition. Mum wasn't terribly sporty but obviously still misses her independence. Does sound like you've tried everything I can think of! Is music or audio books any good?! quiz shows!? What does he say he would like to do, his old activities!?
It is so hard isn't it! My temper is always short by the evening too.. Then I end up forgetting to have the tooth brushing battle, give meds etc!
I hope you're getting some time for yourself too and some help at night. We now have a personal health budget for mum and night carers a few nights a week! Now I don't know how I did it every night! Especially as mum was averaging about 7 wake ups a night several months ago.
Again, don't forget you're doing great, despite the frustration and annoyance. Day centres have been great too, a few hours to myself is much appreciated!
P can hardly string 2 words together most days, so conversation is usually me asking, `do you want this, or that ?` His logic and cognition is poor so I find myself giving the same instructions and asking the same questions over and over again. Pretty soon there`ll be 2 of us in care !
If his mental state was better I would find it easier to manage the physical problems, but as things are I am really struggling with all of it.
We have been waiting 6 months after `passing` the 1st stage of CHC application. Is that where you get your personal health budget from ?
P goes to a day centre and it has been my lifeline but I have to get him there myself and that is no easy task.
6 months! That's ridiculous! I'm sure you probably already are but keep nagging. I'm on the phone constantly to all the different health care departments mum sees following up with stuff. Tell them about the number of falls and your sanity and sleep being adversely affected. Mum started with CHC but that switched to a PHB. It's bad but mums budget also got increased as she had a fall and broke two vertebrate so they had to put something in place. But I've since had the hours increased saying I need sleep and help and that mum can't be left alone at any time. If you need any help with the chc I'm happy to try! You may need neurologist letters etc which after today's ridiculous appt might take time. I also got the PHB nurse to come out and assess mum regularly and you have to say the brutal truth.
It sadly sounds like P is a bit more advanced with his condition than mum, I'm sorry. although I do have to constantly repeat myself with mum and need to word questions carefully and with limited options. And she quite often ignores my comments anyway like take a small sip or take only one tablet at a time. So I can no longer leave her to be responsible for things like that and have to oversee everything. There should be day centres that do pick ups too, age UK or other charity based ones.
Which area do you live in NanBabs? I self referred mum to a continence advisor too who has been a great help
We are self-funding, and that I`m sure is the answer to why we get such poor assistance. I pay for P to go to daycentre 3 days a week but the cost of a wheelchair taxi is the same as the cost for daycare ! We also pay for a male carer to come and shower and dress P every morning. People have suggested having a carer to get P ready for bed and although I would love to have that, why would I pay someone to do that and then have to get P up myself several times a night ?
P cannot be left alone for longer than a couple of minutes (he`s always calling for me anyway).
I paid for a stairlift and a secondhand wheelchair last year. The local NHS wheelchair service was very dismissive when I asked if they did lightweight chairs as I am quite small and it would be difficult to lift a heavy one into the car, they said they don`t do lightweight chairs plus they said there was a 2 month wait.
The most help we`ve had is from our Community Matron and our lovely OT, who tries her best to help.
We live in the southwest of England.
Thanks for listening, it helps to have somewhere to let off all that steam !
Anytime you need to vent me and many others are always here! This condition is terrible enough without the hassle and stress of getting adequate care and help. Mum pays for her day centres herself but the budget she has pays for night care and someone to shower and dress her 4 times a week (I do the rest). Is P a pensioner? I'm sure you'd still be entitled to assistance. Badger them! Make them follow up and give answers. Is imagine taxis are extortionate but the age UK centres have adapted minibuses etc, although depends how rural you are. Having to use a stairlift sounds hard work! And the wheelchair should be assisted too. Mum bought one but it was rubbish so we asked the physio and OT for help and had one the next week. They both work in a hospice though where mums neurologist is. It's part NHS part charity funded so don't know if that makes a difference!? Are there hospices you can contact? Mums first neurologist was useless and we managed to transfer her to the one in the hospice and they've been great
A arm around your shoulder, why should it be so hard to convey to professionals what is really going on in your life. Video sounds like a really good idea and can't be denied. Hope someone sons comes to your rescue. Xx
Thanks Katiebow, like one of my sons has just said to me, `when you talk to the doctors, they all listen but no-one is hearing you`. I showed the hospital doctor today a video of P`s behaviour and she just said `oh yes, that`s what we call delirium`. Well thanks for that, but what I need is help with it !
I wonder every day how I`m going to get through another night and day.
Taking the clothes off and wandering around actually sounds more like FTD (Frontal Tempral Dementia) which has some similarities to PSP. My wife has PSP, but a close neighbor who only live a few meters from our home, was diagnosed with FTD. You might ask your neurologist about that possibility.
After a 6 month wait we were meant to see the neurologist today, but when we got there we were told he wasn`t there today because he was at a meeting !
We`ve had diagnoses for PSP/MSA/PPS/Lewey bodies dementia with Parkinsons and just 18 months ago P was given calcium and vitamin D tablets.
To be honest it makes little difference what the illness is called, all I want is practical help to deal with it !
My husband is on Xanax. The GP prescribed it because my husband was verbally abusive and very over anxious. Things are going much better for my husband, and me, ever since he started taking it. He takes the generic. I don't know if it would help in your case but it might be worth looking into.
Patience. PSP causes memory loss and confusion.my mother will become agitated and try to get up by herself when she wants to do something but is unable to verbalize. It's frustrating for you,I know because I'm experiencing it 24/7. Be strong.
I am told I am extremely patient but I am feeling far from it at the moment.
I must admit I am becoming worried that I may have a stroke or something as I have had high blood pressure for 20 years or more.
Believe me I am trying my best to stay strong - and sane !
It's hell NanBabs isn't it. My mum started this behaviour about a year into her psp diagnosis. Eventually, after lots of falls and A&E admissions the consultant finally told us mum had 'reckless behaviour syndrome' associated with psp. Apparently the part of the brain that usually stops you from doing things that could be a danger is effected. We tried alarm mats and putting notes up by mum's bed and chair saying not to get up, but they didn't help. My poor dad was so exhausted, frustrated and worried about mum hurting herself that when we visited one day he had mum tied in the chair! We had to explain that if he was reported to social services mum would be taken into a care home.
I wish I had an answer for you to make things easier but I have to say that it only stopped when mum was no longer strong enough to get out of the chair/bed on her own. It's a long, hard battle but try and stay strong, and keep coming back to the forum for a rant. They are a great bunch of people who know only too well what you are going through.
My husband often has issues like this. He'll start with moving his feet back and forth, then raising up like he wants to stand, then sit back again. He also will have quite deep thought lines on his forehead and between his eyes. The issue is that he's uncomfortable and doesn't know how to get comfortable. He had CBD. With his neck being stiff, his back tends to be sore after standing/sitting for a while. So we change positions. Sometimes this works and sometimes not. He calls these episodes of 'antziness' If I can't get him to calm down, that's when I know that his meds are wearing off and it's time to give him another dose. Now that's not to say that he's always medicated, he takes Clonazepem which helps for the anxiety. He's supposed to take 2 tabs three times a day, but for the most part only needs it twice. So we don't over medicate and cause him to sleep all the time. Hope this helps!
I am going through similar problem with him holding his pee until he wets himself and he refuses to wear any kind of protection. I also am wondering if this is part of why he is refusing to go to bed at night.
I know it feels like a nightmare. Glad for this blog so you can have a place to rant for awhile. Sometimes it just helps to say things outloud. Good luck at the Neurologist.
It's always a surprise when I go to check on my husband. Sometimes he has taken off the catheter (says it leaks but really isn't), all his clothes are off or he's standing by himself rigid and can't move or he's calling for help on the Freedom Alert he has around his neck. I have to be forceful as he is determined that whatever he is doing is the "right thing". I had to grab to get the Freedom Alert from him this morning as he was pushing the buttons constantly. Then I hid it from him. He feels really shaky this morning, suppose just another thing to add to the list of PSP evils. Going to his best friends funeral today, maybe that has something to do with his actions. Wish us luck. Think I will put him in his wheelchair for the day.
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