Im sorry to say, I lost my patience with my husband on Wednesday. I had joined the carers zoom meeting rather late due to my husbands needs. Only to be interrupted a further three times,. He had got up out of his chair and fallen three times in a space of 45 minutes. I lost it the third time. Shouted at him, begged him to please sit in his chair whilst I tried to resume the zoom meeting. But alas no, it didn’t happen. He got up once again, resulting in falling forward and injuring his face. He now has a laceration down the length of his nose and across his cheek. Just missing his eye. Paramedics dealt with it thankfully. I can cope with everything the PSP has thrown at us thus far. But find the impulsivity so hard to deal with at times.
I know I’m not alone on this journey. As so many of you struggle with same issues. How do you cope…
Rosaleen
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Pinkcamelia
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Hi, this is very difficult to deal with and you're not the only one to snap and shout believe me. Below is how I tried to keep my wife from doing the same.
I purchased a small laptop table like pictured and put it in front of her chair with her keyboard for communication on it, I told her it was my table and she was not allowed to move it but had to ask me to move it, I was very strict about this. I also gave her a call button to press if she needed me.
I also purchased an alarm that attached to the back of the chair with a cord and clip to clip onto the back of her clothing, this would go off if she tried to stand up; as she did not intend to get up and fall but was acting on impulse it gave her a reminder of what she was doing and I had told her when it went off to sit down again, it also allowed me to try and get to her.
I’m definitely need to get some form of chair alarm.
I will look at the call button. But honestly think he will just chuck it. I got him a hand bell about two years ago, to ring if he needed me. He has never rang it.
We had a tilting table before, He has no interest in anything but the tv. Sometimes will listen to music. We are going to try some audio books. He finds it extremely difficult to read, as the psp has affected the movement of his eyes. I feel each day is a learning curve.
Does the Singcall button work well? I was considering one for when I have to go outside, hang out the washing etc.
We have a pager which works from a gridpad, but it’s not so easy to use if the pad is not directly in front of her, and of course I must be wearing the pager. I was hoping I could use a simple button to call my apple watch.
We have apple watches each for the built in falls detector
Hello Kelmisty, I do get some time out, but not on a regular basis, so wasn’t able to make plans.
That is about to change. As of next week my husband will be going to a day centre once a week. We visited the day centre for a taster session a couple of weeks ago. Was informed yesterday, he has got a place. I’m of mixed feelings. As my husband has never really mixed with people outside of family. I have to accept, I need him to go for my own sanity.
Our sons pop in, although it’s an opportunity to pop out. I like to sit and talk with them. As my husbands voice is virtually non existent. It’s difficult to have a conversation with him.
He used have carers come in when I was at work. But due to the sheer amount of falls he was having, I knew he needed 24 hour care. So gave my job up two years ago on the 26th of this month.
I initially cancelled the carers at lunchtime and teatime. Did keep the morning call for several months. It was ok with the regular carer. , He was good with my husband. but when it was his day off. There was no consistency of time or the level of care. So decided I was better of doing it my self.
As I wasn’t on a time scale, I didn’t have to rush my husband.
I think to help you cope, you need some support in looking after him, you also need some time for you. I found myself getting more cross with Mum when it was mainly me doing it all day and night. It’s no wonder your are snapping as this is extremely exhausting both physically and mentally. It took me a while but I have learnt I’m no use to her if I’m at breaking point, eventually I had to move Mum into a care home whilst the guilt is something, I realised it takes a village to look after Mum.
And whilst he says he doesn’t want to go, you need to say I need you to go so I can do some things for me. Could you ask your sons to do a little more, maybe fix a time for a visit to look after Dad and a visit to see you &Dad, if you explain how hard you are finding it, hopefully they will help a bit more?
It is so hard, exhausting, draining, no wonder you’re snapping, and you will be grieving both for your husband. Who is obviously very different to the man he was but also your old life/expected life at this stage.
Our sons are willing to help out at weekends and evenings. I think I am half the problem. I don’t really want to go out in the evenings, I also feel they should spend quality time with their families of a weekend. After working all week. So I am part of the problem
On saying that, one of our sons did take us to his house on Friday afternoon, we had tea there. He took us the shops as I wanted to purchase some electrical items. He looked after his dad, whilst I browsed around the shop and I had my tea in peace. The eldest son came yesterday. He looked after his dad whilst I pottered around the garden for a couple of hours.
I shall be anxious when he goes to the day centre tomorrow. I do need to learn to switch off and be me for awhile.
I know the feeling of feeling like your are burdening people, but he’s their Dad and you are their Mum of course they will want to help you both. And look into maybe getting a sit in visit maybe for a few hours during the week so you can do something for you without pressure.
I found the impulsivity the second hardest thing - after the loss of voice and communication. Like you, I would try to explain that he needed to remain seated while I did e.g. a call (or went to the bathroom) and sometimes I would barely have turned my back before he was on his feet - and then on the floor.
Like you I would sometimes lose it and shout and swear - like when he would undo his seatbelt and open the car door on the motorway - or when he promised to stay seated while I walked round the car to help him get out safely - and instead he was on his back in the driveway.
Like Zerachiel, I used various devices - wireless doorbells - or even proper handbells, to give him a way to signal he wanted something. But the impulsivity became so strong he would see the button and feel compelled to press it repeatedly - or he would disable the chair alarm so that he couldn't be stopped. We couldn't leave Sara Stedy within sight or he would try to pull it closer and get up unattended.
His carer was massively grateful when I got a video baby monitor so she could watch out and react quicker to his sudden impulses even when having to step away for a moment.
But coping, mentally? I found it very hard. I was constantly on "hyper alert" and could not relax.
I knew he couldn't help it - I knew he could be telling himself to "sit down" and still be unable to do so until he had completed the impulse he had started.
It helped a lot to be able to differentiate between "can't wait" and "can't stop" impulsivity - my husband had both, but we could try to avoid triggering some of the impulses e.g. communicate things at the right time and not too early. If he had already started an impulse, it was better to help him complete the action safely, than to yell at him to stop.
I think the phase you are going through is the hardest - if you don't already have CHC then you should try now, because the fall risk is so high and the supervision is so challenging.
Hello Berenger, I can assure there were quite a few swear words. 🫣
I get what you mean as regard you only have to turn your back for a second. Ive asked so many times if he needs the toilet or anything else. To be told , he didn’t. Then for him to get up as soon as Ileave room. So frustrating. I’m like you, on alert 24/7, so yes it so mentally draining. I haven’t applied for CHC funding yet. As we currently don’t have carers coming in, I feel they won’t look on it favourably. I have read so many of struggles people on this site have had to deal with, to just get turned down. So am waiting a little longer. But definitely will at some point.
Hi, my sister also is very impulsive. When she wants something she wants it now. It is impossible to dissuade her and easier if you just go along with it. She has CBS. Does anybody else have this experience.Thanks
Yup, my Mum has PSP and CBD, it does eventually stop when they can no longer get themselves out of the chair. Mum can only do a stand on her own when angry about not having. Cigarette.
i have nothing to add over what the others have said, just to let you know that you are not along. If we are in the house by ourselves I can never relax. I find myself being glad when she is asleep, and then feel bad that I think that.
Hello pspuser, I feel the same now. He does sleep more, He has severe head to foot tremors. Anything from 2-6 days non stop. . So afterwards he is totally exhausted. I feel for him. It’s so sad, nothing can be done to help ease such symptoms. I am niw so relieved when died have a good few hours sleep. But I’m still on high alert.
I also find the impulsively the hardest along with the illogical behaviour. Each day I pray for the strength and patience to carry on , thankfully it seems to arrive. I also shout sometimes especially when I have said stop, stop numerous times and he still carries on. Afterwards I explain that it's the PSP that I'm angry with not my husband. Good luck on your journey you're not alone and thank you to all who have shared your advice, it's graefully received .
Hi - my mum has impulsively too & as others have said its the hardest part to prevent falls etc. Our palliative care team said that the need to "do" things with PSP doesn't understand time so the suffer just does it immediately without assessing the risk as you would with normal function - like puling out at a junction without checking if a car is coming.
We have found that stopping telling my mum what's next can help we used to say "after I hang the washing out we will get you showered" then we find when hanging the washing she had started to try and take her clothes off and fallen. Now we just say "hanging the washing out be back in a minute" this has helped with the impulsively as she doesn't know what is next to try & do it without support.
This disease is so hard for family & carers but I also think it's the cruelty that the cognitive understanding is still strong on the suffer and hence they think they can but sadly can't. 😢
Hi, Yes this was one of the many hardest things. But please remember, it’s not illegal to shout at your husband. In fact I always thought it was in the terms and conditions!!! So NEVER EVER feel guilty for doing something that before PSP came into your life, was totally normal.
One little tip that occasionally worked for me, was trying to make the last word, what you actually wanted him to do. I.e. instead of “Don’t move”, try “ Be Still”.
Make sure you are getting as much help as possible and rest. It is impossible to look after your loved one, when tired (ha! ha!, when are you not!!!)
Hello Heady, love how you put it. It’s not illegal to shout at my husband.
I wished I didn’t feel guilty.
Life may be a little from next week. As a local day centre are happy to have him for one day a week. Our local matron told me 14 months ago. That there were no day centres that would take him. Because he needed to walk and toilet himself. So I just gave up hope of it ever happening.
I think it’s only happening now, because I got pallative care involved the beginning of Feb.
If he still walks that is good, my dad stop walking in one day , standing hoist now for transfer , full hoist from floor transfer or on worst days. Impulsivity is very common, if you can have floor bed with crash cushion on side for times when you leave him safely . It helps or if he is in the chair alert mat that will alarm when he stood up. It is journey , good he has you , do not give up , adjust as you go .. it is journey everyone going different way .. I had some machine do exercise , some stretching exercise or bike pedals , put films that he will be occupied. I know if leave without film , music anything will be problem . You doing the best , I do not attend carers mist meetings because I adjust as I go , I also work as full time nurse.
Well my parents rise me well
Priority list and adjust as you go , it is a lit fight beside your husband , ( husband that just part of journey and lessons) like my dad. The outside bureaucracy is a fight to fight for every rights for person to live .. adjust yourself , plan , keep safe activities film , toilet that he will not curiose while you have a moment to yourself . DVD all classic all the best , no TV , DVD recorder classics .
It is journey not destination like every thing in life good or bad will pass …. Cherish the moment which you still have given with your husband the rest is second priority …. Do not blame yourself , do not yourself … We are all humans …❤️❤️❤️❤️❤️
Hello, l found the peak of impulsivity to be one of the hardest phases of the disease. My Dad had suffered with PSP from 2017 although symptoms started several years before diagnosis. He passed away peacefully in 2023.
The fear of him falling and hurting himself was very real and l’d lifted him off the floor injured many times.
His carer was fantastic and suggested getting a ring doorbell as you can use the setting to create a boundary so every time my dad moved out of the screenshot it alerted us and we could check the feed on our phone. Also you can talk through the camera so in the cases whereby my dad had fallen l could immediately reassure him that we were coming.
Whilst it doesn’t stop the behaviour it enabled me to get eyes on him before something happened and so prevented some of the falls.
It gave me sone peace of mind knowing l could check in him.
Wishing you all the best, it’s not easy for anyone. I definitely lost my patience on several occasions and felt guilty at the time but have accepted that the challenge was a tough one and l gave it everything l could.
Thank you for your reply BellaRooney. The fear of the falls and injuries is mentally draining. I did let it get the better of me the other day. I’m a bit more myself today.
Our sons are more than willing to help our. But they work full time. And they have their own families. So I try not to put too much pressure on them. They both lost their father in laws in the last two consecutive years. So I’ve let them be more supportive to there wives and children. I do go out about every six weeks with my friends.
My husband showed symptoms from summer 2017. Took till Nov 2021 to get finally diagnosed. It’s long battle
hi. I’m not sure if it would be any use for calling for you but I have this amazon.co.uk/gp/aw/d/B089KK... and just move the bit that makes the noise to a plug near where I am.
As others have replied the impulsivity was one of the hardest parts of PSP to cope with and finding my husband upstairs one day on my return from shopping was very frightening, as a fall backwards from top to bottom had been the start of his PSP diagnosis. I used NRS Telecare (following a referral by the OT) which was £23 per month. This included a bed sensor which was very useful when he used to get up in the night, a chair pad sensor, which would pick up movement to a fair distance, ie, in the garden, and a fall alarm so at least if I had to leave him on his own and he fell the call centre would contact me / send a first responder. I also bought 3 cameras from Amazon for his room, kitchen and lounge so could watch and talk to him. I also had a baby monitor for nights so could hear if he was calling as he would forget to press his personal alarm. Sadly due to the impulsivity and falls it came to the point where he was unable to be left on his own in the house and a family member would always be here to supervise him. Although this didn’t stop the falls, initially he was very quick out ofthe chair as soon as my back was turned, but at least the sensors alerted us if he was on the move if we were in another room.
Due to the number of falls he had, (most of which he sustained no injury, but I still had to wait for a first responder to attend to pick him up), I was provided with a Raizer chair lift which was brilliant.
Please do not feel guilty about shouting, I shouted and swore many times as this is such a challenging condition and we are all human. However I did find the PSP carers meetings very useful to discuss situations like this and just see that you’re not alone.
Our paths are very similar. My husband fell down the whole flight of stairs too. (2018) Somehow miraculously only broke his fingers. Dr’s at hospital and myself couldn’t believe it. He fell a few more times on the stairs, without injures requiring hospital treatment. The gp referred my husband to the falls clinic. There conclusion was, it was due to his sedentary lifestyle. The consultant did suggest should my husbands voice be gravelly for a period of time, it should to be investigated further. But alas the gp refused, saying he didn’t warrant seeing a neurologist. No one seemed to take his issues seriously. . So we just battled through, until 2021, when I found him on the floor. He had been there an hour. So I called the ambulance and insisted it needed investigation. We finally got the answer after a two week stay in hospital.
We have since moved to a small rented bungalow; due to the issue of the stairs. As my husband would go up them when no one was around.
My husband does have a bed alarm, which has been a godsend. I actually put it on his chair yesterday. I am waiting delivery of a chair alarm,
One of our sons did buy a camera; but as I’d given up work to look after my husband, I didn’t feel it was necessary at the time Think I need to get him to set it up now.
It’s amazing how quickly they can get out the chair when your back is turned.
I enjoy the zoom carers meetings too. It’s good to be able to talk to some one who has understanding of the difficulties we are all going through.
My Dad has this too. Found a few blogs and posts calling it Rocket Chair. And 100% the worst part of his PSP. He’s so unsafe because of it and it needs 24/7 full on supervision .. as lots of you have said. Dad would be up literally every 90 seconds for 24/48/72 hours with cat naps for 20 minutes occasionally. Dad has been in hospital/care since October. We tried to cope at home but Dad doesn’t sleep either or go to bed so we found it unmanageable as Mum is late 70s and my brother and I had to move in away from our family and jobs. Even then it was crippling doing 8 hour shifts each trying to hold down a job and see our own kids, which we didn’t for months. We were absolutely broken. It’s terrifying trying to keep them safe. Anytime we left him he’d fall. Feel for you, please don’t feel bad for losing it occasionally. It’s scary and absolutely exhausting. They can’t help it but it’s the worst thing I’ve ever experienced. Dad is a bit better with some agitation medication but still only gets a few of days per month without this
So very sorry to hear this Rosaleen. I know exactly where you are coming from . Impulsivity is part of the condition, I fear.My husband and I became used to many A&E visits, ( usually late at night ) and to a lot of paramedics coming to our home too.
Some medication seems to make impulsivity worse, so speak to your Parkinson's Nurse, if this is the case.
I had my husband under baby camera surveillance when I was going to the kitchen to prepare food or in bed at night.
He hated it , but it didn't stop his forgetting that he could not walk independently and getting up to do just that, with the consequent falls and injuries.
It was when he almost lost an eye, through getting up to go to the toilet, when he didn't need to, as he wore a convene, that I decided that enough was enough.
I bought and put together a very small, single bed. It fitted into a downstairs room, next to his hospital bed.
It helped a little with sleep, but it also helped me to stop the falls or to stop me from falling, when dashing downstairs to prevent one.
I loved my husband dearly, but after 48 hours of non sleep, due to him having one of his many UTIs, I rang the doctor's and said, "I can't do this anymore".
The response was , the provision of a young, night carer, for three nights between 10 pm. and 7 am.
My message is, that you need to call upon anyone or any service that may be of help to you.
If you can afford care get it.
Also, ask any possible source for it.
Age UK got me about £32 a week , to help with domestic chores that I didn't have time , as a full time unpaid carer, to do myself.
Eventually, I got two hours nurse care, which allowed me to go shopping and my husband to play Scrabble with her.
Later, this went up to five hours.
I could shop and then meet up for a much needed, lunch break with friends.
Caring for a PSP patient and trying to get help, is a battlefield for already exhausted carers, who are caring for their loved ones.
Leave no stone unturned in getting help, my friend, but do remember that your partner is the one who is both physically and mentally, suffering.
Don't feel guilty when you ,"lose it".
We are all mortal and under pressure, we sometimes crack .
When I got exasperated with it all and was grumbling and struggling with a situation, my husband said,, "I'm sorry".
Heartbreaking.
My response, to which my husband, thankfully, grunted in agreement, was,
" It's not you that I am exasperated with, it's this bloomin' PSP!!".
Hugs to you Rosaleen and my very best wishes. too.
Remember that the job you are doing is very difficult, but it shows your amazing love for your husband and what a wonderful person you are. Rx
Dear RosaleenI am really sorry to read of your situation. Please do not be hard on yourself, you have had a normal reaction and this path in life is not easy for anyone. I understand what you have said completely.
Others have given good advice. I think though each and everyone's situation is different and the level of impulsively can be so different patient to patient by what I have read over the years.
I'm not a medic but I saw many years of this disease with my psp person. My own take on the situation is that if the level of impulsivity is very high, no amount of alarms or baby monitors is going to make a safe environment for much loved PSP people and their important and valued carers. Stitched up faces, broken bones and bandaged bodies can't go on forever. Talking to medics about solutions to sedate and suppress the behaviour can be needed in these cases to place safety and comfort care first. If the medication means our PSP people are slowed down in other aspects, it is devastating and sad but this disease overall is devastating and sad and on balance I think a choice for safety needs to win everytime.
Anyway, sorry if that is cold or harsh, I don't ever ever mean what I write to be. This disease in the end taught me to be practical and put safety first everytime if I could. I found that with safety, came comfort and with comfort came better days.
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A real shitty day, literally.
How do i cope when Frank loses his temper with frustration?
Dan’s brother passed away. Do I tell him? 
Trying to find a care facility, not as easy as we were lead to believe.
psp - how bad can the leaning get?
