PSP Association
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Angry trying to calm down

All was going well with Nigel back home and going to respite during the day but he thinks he should be picked up at 4 and after that he gets agitated and today my sister went for him at 5 and he had put a fist up at a member of staff so it has to be reported and she says they may not have him tomorrow. I cannot have him at home on my own all day because I cannot take him to the toilet etc and I need to sleep in the afternoon and I am so angry with him inside although I know it is not him but the horrible horrible things that are going on in his brain. I am praying for calmness for us both but right now I do not even want to talk to him and i have to phone the respite home now.

Sorry for the rant but I need to rant big time right now. love AliBee xxx

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Hi Alibee

Totally miserable situation.

Rant away!!!

Putting a fist up might just be saying I am angry. Like a driver shaking a fist at another driver?

Did any staff approach him after that? Was he reasonable with them? Things seem to get out of hand very quickly now with modern services. There is a protocol for everything except common sense.

Forgive me I can't remember what Nigel's speech is like.

Is he able to say why he wants to come home at 4.00. I might just be that he see's others leaving then and the activities on offer are really boring for him?

Or, it might just be the stubbornness which can come with the illness.

Once you've got it worked out you might have a chat with the day unite, explain what is going on and ask how you both might manage it together. I would not let them walk away because if a fist shake if there were no other aggressive behaviours. Indeed I would ask them if they too don't get angry from time to time.

Now I might be totally off the ball on all of this... Sorry if that's the case.

Nothing I can say about the anger except "been there done it." This illness is fraught with frustrations.

Best to you

Warmly

Kevin

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I agree with all that Kevin said, if he raised his fist can’t really see a problem with it, I think they are being unreasonable, do talk to them and explain it is all to do with psp, hope you get it sorted out soon xxxxx

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Once again, Kevin, so refreshing to hear a sensible voice amidst all the stupidity that we have to face on a daily basis with the various agencies. Oh how a sensible approach to some of these problems would make our lives more bearable. I suspect the lack of training plays a big part in these issues. I was never trained to look after a person with a neurological illness on a day to day basis, like most of the folk on this site, but my own research, a bit of common sense, along with the advice on this forum has given me a huge insight into coping, sometimes drowning but more often treading water. Without doubt support workers need to be protected but let's hope that one day sense will prevail regarding H&S and each situation will be looked at with a realistic view to any possible danger to staff, where someone who 'gets it' makes a sensible decision - I'm not holding my breath. R is certainly aggressive these days but absolutely not a danger to me or anyone else. I know him better than anyone. Hils.

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Hi Hils

Yes, I still get dismayed with things like OT's refusing equipment because of 'risk' even though the risk is far out-wayed by the gain in quality of life, or the dietician who said that squiring food into Liz's mouth had an unacceptable risk of choking... So what do we do? She has said she doesn't want a PEG... no answer!

The difficult behaviour / service refused one is a jobsworth response. The home Liz is in cope with it by talking to her gently and giving here space, though I know that she has really frightened some staff over time.

I found it difficult to get some community staff to hear. They seem to think the carers views are non professional and that they are not to be acted upon.

Keep treading water. It's all we can do.

I've got SCUBA gear in my wardrobe for emergencies now... I wish.

Best

Kevin

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..... And the reality is, Kevin, that the majority of the decision makers have never experienced the difficulties faced by us carers within their own lives, and I would not wish that upon them either. Without a doubt we are the experts but we don't have a voice. My response to Alibee earlier ended with me saying that I am darned if I will be defeated by the people who don't have a clue. I owe that to myself, my husband and the folk on here who continue to struggle. Like you said about Liz frightening the staff on occasions, R has scared the wits out of me at times but at the same time I have seen the shock registered in his face at his totally out of character actions. Instinctively I know he poses me no danger and the pushing and shoving, gripping my wrists with great strength, is just his way of trying to communicate in a world where he now must feel so vulnerable, isolated and probably very scared. The reality is that I dont know how long I can keep this up but when and if the time comes for a hard decision to be made I will dust off my sensible hat and pop on some matching shoes. Keep that scuba gear in mind, Kevin, we've all had a survival plan this far and need to stay ahead of things, regardless of what community staff think is best for us. We are all screaming so loudly in our heads I'm surprised it's not picked up in space. I'm gonna go and sit by our pond in a mo with a bowl of soup (which R has just refused to eat although saying he wanted it) and talk to the fish - will probably get more sense out of them than the so called experts. Hope the sun is shining where you are. Hils.

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I so agree!

Enjoy the fish in the evening sunshine!

Peaceful.

Yes sunny and warm here too. Liz spent the afternoon sitting by the pond enjoying the sound of the waterfall. No fish and the newts won't be back until spring cools... But the wild flowers are looking good.

Best

Kevin

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Dear Kevin

Thank you for your reply. I have had some marvellous responses and do not feel alone. My youngest daughter (the hard corp one) understands but other members of my family try but do not and it does not help when my sister said he looked evil. He is normally a very gentle man and used to bug me because he would often not argue back when I was getting cross!!

His language is still fairly good but very slurred but since he has become verbally abusive whilst in hopsital his voice has become very loud when angry. I know why he is angry because they could not let him home from hospital because he was not mobile enough and because I had to go back in, and I think he thinks he will be kept at the home and not be allowed home over evening/night and yesterday my sister was late picking him up. He was fine being there one day a week until 4pm before my op but would always be asking where I was if I was late for any reason but not like this. The problem is that with others picking him up I have to fit in with them too.

Luckily yesterday evening my 'hard corp' daughter was here about an hour after I had posted and she talked to him so gently about being angry and he said he was angry with himself and cried. It must be so horrid for them trapped in their bodies and minds and not understanding. I did talk to the home this morning and will do again when the senior manager becomes involved tomorrow. Common sense must prevail.

I have made him a card for his shirt pocket today saying that he will be coming home at 5 so I am hoping that will work, and when i phoned just now the carer said that he had been peaceful and that she had made him laugh at lunchtime because his wheelchair went too quickly for her as she did not have it on slow speed. Hopefully they will take account of all that.

Ref feeding. In hospital they mashed all his food and thickened his drinks so he did not eat and spat the drinks out. When good friends family visited they took in things like mango juice and bananas and he golloped them down with a grin but they could not keep smoothies etc in the ward fridge for him !! He lost 8 kilo in that fornight but is eating well again now home and enjoying it. Usually if he is in hospital I am with him for most of the day so can supervise food/drink etc and cut across all the rediculous H and S rules and regulations.

I like the idea of the scuba equipment. I will keep my head above water but will imagine the scuba mask if I feel I am going under again.

Thank you AliBee xxxx

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Hi, I recommend Le Scaphandre et le Papillon, a french film (2007). It helps to overcome these painful times.

Hugs

Elena F.

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Thanks Elena - I've put that on my watch list.

Waving

Kevin

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Hi Alibe

Yes, some great posts here.

It's such a big dipper ride emotionally and practically. Yes, I'vr seen that shocked look on Liz's face when she suddenly get's insight. That's another heart break too though isn't it.

I do hope it goes well with the senior manager. It sounds as if you have a very good handle on it all.

Warmly

Kevin

xx

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This is a good place to rant when needed. We all know what you are going through and completely understand the need to vent anger at times.

Ron

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Thank you x

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Rant away. We all know how it feels to be exhusted and required to continue to deal with PSP daily. There’s no time off. You need your rest in the afternoon.

How much could he do even if he did strike someone? It’s not like he is very strong at this point.

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I said exactly the same. There would be no power in it !!

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As everyone else says, rant away. I hope you get some understanding from respite.

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Thank you

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Terrible that the care staff have to report it. For what, to whom. Like reporting a person who has cancer. Just what are they there for? All insanity. That said, it's probably more out of frustration from the PSP. Please see if you can have a carer come to your own home. I took care of my mum for 5 plus years in her own home, where she passed this year. I had carers to assist with showering, dressing, feeding, cleaning the home, toileting. It was a regular daily system and worked out the best way it could with this type of illness. Organisation, competent help, consistency to avoid accidents, chaos and keep calm is very critical IMHO when having a PSP patient to care for. Always remember the afflicted and do take time for yourself. It's a trying, challenging thing being a carer, and so finding the way to alleviate the matter is crucial. Best wishes to you and your loved one.

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Hiya

Nigel has CBD but very similar to PSP but more cognitive loss. The only reason he is going daily to respite at present is that I had my hip replaced on Aug 7 which dislocated on Aug 17 so I cannot care for him at the moment. He was taken into hospital between those dates as he seized up and has only been home since Thursday and he became verbally aggressive in hospital as he thought that they were imprisooning him there and of course I could not get to see him as it was 35 mins drive away. I think he is just exhausted and will be ok once he is back into routine and trusting peopel again. At least that is what I am praying for. xxx

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Hi Ali, I agree with all above here. I hope the respite place will understand the nature of the patient they are caring for, and just cut Nigel a little slack. If they don't, then it sounds like your community care coordinator (or sorry, whatever your community/social case manager is called there) needs to help you out with other suggestions for what to do.

All over the world, health authorities are dealing with our "lump in the snake" population bubble, and they don't want to spend money on residential care because of (1) money - which facilities they won't need in 20 yrs when the Boomers are "done" and (2) philosophy of care at home is best! ....But care at home is totally and completely dependent on the caregiver/family member getting the necessary supports (including sleep!!) to have care safely provided without unnecessary murders!!

Good luck in the struggle - Thinking of you XXX

Anne G.

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Thank you Anne. I just pray that he settles down because he has been happy there before on his one day a week and my Mum was there so he knows it. Our social worker is home off holiday tomorrow so will be able to talk to him. We had an August shut down with almost everyone being away !! They have let him go today but will talk with the senior manager tomorrow so I have sent him off today with a note in his pocket and one for the staff to use saying that he will be coming home at 5 so I just pray he is not as frightened that he is being 'kept there'. He knew he had done wrong yesterday and when my daughter spoke with him he said he was angry with himself. Poor darling xx

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So,so feel for you. I cared for Leon ( Hubby) for 8 years before putting him into care, it was so so hard. However we do what we can and think is the best all around. I am sure not enough is known about P.S.P. 1 in 100.000 world wide actually diagnosed. Massive hugs and support on this site for you. Xxoo

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Thank you xx

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Hi, can't add anything to what's been said but sending you a virtual hug.

Hope things get sorted !

Dawn. xx

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Gratefully received xx

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My heart goes out to you.

It's yet another case of explaining the symptoms of PSP to professionals who should already be aware.

We all know PSP makes our loved ones aggitated and often on a short fuse but they have little strength, certainly not enough to do any harm to others.

Sending a big hug to you.

Sue x

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Nigel has CBD which has a bit more cognitive loss but thats exactly what I said. He has no ooomph for a punch although his hand strength can be very strong. He is just scared they are going to keep him there as they did in hospital. Thank you xx

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Hi AliBee1, how absolutely ridiculous and another example of health and safety madness. I do hope that someone in your respite centre has their sensible head on and has had enough training to realise that a raised fist is pure frustration from someone who is unable to communicate in any other way. Of course staff have to be protected but for Pete's sake a bit of explanation to our loved ones, in a calm fashion, goes a long way into easing their agitation. I am currently going through a very difficult phase of aggression with R, I am drained, but I get it and try to deal with it best I can - if your respite centre has to report such a trivial incident then they are best avoided. Until a bit of common sense prevails in situations like yours then us carers will forever be fighting our loved ones corners, not only for them but for our preservation as well. I was asked last week during a carers assessment whether we had any weapons in the house. My response was, "believe me, if I had a gun in the house you would not be here asking that question, I would have shot myself a long time ago."

I suppose I come from the generation where health and safety was not an issue; we climbed trees, swam in rivers etc. etc. and if we hurt ourselves we would probably get a clip around the ear from mum for being so stupid. Until a bit of compassion and understanding reaches the top of these ridiculous H&S requirements nothing will change. Stay strong, I know so well what you are going through but I am darned if I will be defeated by the people who actually don't have a clue. HilsandR

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Thank you for making me laugh about the gun. have you read the book The Selfish Pigs Guide to Caring. Absolutely brilliant and made me giggle as it said things like you have just said. I am so sorry that you are going through a bad time too. It must be awful for them being caught up in their brains and bodies that do not do what they want them to do.

Thank you for this reply and the ones you have had with Kevin. It is so lovely knowing people understand. xxx

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Likewise, it's such a comfort to be in touch with those who completely understand. I've not read the book but will get it on your recommendation - I may have lost the will to live on occasions but my sense of humour refuses to desert me, thankfully. I do hope that Nigel's agitation benefits from getting back home although it may take a couple of days for him to settle in to his old routine. Fingers crossed for you both. Hils

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A sense of humour is absolutely essential isn't it? I hope that you enjoy the book as much as I did. I just giggled so much at parts of it and I lent it to my sister who text me after my new hip dislocated 'page 67 is very relevant' . It is about doing a good job of caring but not for ourselves. xxx

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I've ordered the book and can't wait to settle down to a good chuckle. Trying to hang on to a sense of humour has undoubtedly lifted me from a black hole on many occasions. I'll let you know how I find it but already in love with the thought of my R being my 'piglet'. How quaint is that. Yes, we don't take care of ourselves as much as we should but I firmly believe we all have an inner strength that comes into play in the situation we find ourselves in otherwise how would carers actually survive, and we all do regardless of the hideous challenges. Yes, undoubtedly there's a wealth of support on this forum that we don't get elsewhere but in the end it's our own grit and determination that gets us through. Keep smiling. Hils.

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Love your reply. It says it all. I hope you will enjoy as much as I and other carers locally have xxx

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Hi AliBee,

Well the book arrived and whilst waiting for the evening carer I flicked through the pages and stopped on page 263 - Today's the day of the Assessment, the assessor is here and she's asking the questions you expected and getting the answers you dreaded. "Do you need help going to the toilet?" You think about what happened only an hour earlier. I am now already in pieces, crumpled with laughter, tears rolling down my cheeks - the description goes on - oh how I identified with it - but eyes in such a mess now that I can't see the page and the carer is ringing the doorbell so I hastily mop up the mascara and try to compose myself. What a tonic - hilarious and we've all been there. I can't wait to get started on it from the beginning - just that short reading has tickled me so much I keep thinking about it and giggling. This guy's turn of phrase is just brilliant. Thanks so much for recommending - looks like something that should be on prescription for carers. Do hope that you've had a calm(ish) couple of days. Hils

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Hi Alibee, does he have CHC funding if so they can arrange a mobility taxi to collect him at an earlier time. My husband had one to bring him back from the hospice once a week.

Love Kate xx

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Hi katie

I am just applying for it. Daunting job though. xxx

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It surely is, are you get help from hospice and Parkinson's Nurse, they did most of the work for me. xxxx

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Oh and the Speach and Language Therapist was brilliant, think she helped clinch it on first time of trying. Non would proceed unless they thought that Ben would pass most of the criteria but we discussed and picked our way through. Best of luck and hope you're feeling a bit less stressed today.

Love Kate xxxx

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I am. I have spoken to the home and am awaiting him home in a short while when some friends pick him up to find out how our communication has gone xxxx

I am stiil so tired from the two general anaesthetics that I cannot get my head round funding at present but hopefully better next week. Love AiBee xx

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Alibee my heart goes out to you, you are having such a tough time at the moment and then this on top. Hope common sense prevails. Thinking of you.

Hugs

Alison

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I read a brilliant thing on common sense the other day but cannot find it. All about how it has disappeared. xx

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Love it :)

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Do the docs have him on anxiety or anti depressants? My husband's personality changed right from the beginning and had horrific anger issues. My empathy was nil until he was put on meds to control it. After 3 med changes we found the right chemicals. Our loved ones are frustrated and scared. And so are we. Hugs to you.

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Hi. Not on any medication yet but may have to be considered. They are hoping that once he gets back into a routine and trusts that he is not going to be 'imprisonned' away from home he will calm down and he did yesterday for the 1st time. I do feel we need to talk about it soon though as hospital will happen again so I will ask for a review appt with our doctor or a referral back to the psychiatric consultant. Thank you for contacting me. It does help so much talking with those that understand. Love AliBee x

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