PSP Association

Which Mum will we get today?

Amanda and Kevin's recent post has spurred me on to come out of lurk mode and post something.

My mother-in-law, Olive, was diagnosed with PSP about 6 months ago, having been misdiagnosed with Parkinson's 2 years previously. She's 76 years old, lived in North Wales all her life but moved down to a Nursing Home in Cardiff near to us just before Christmas. This time last year Olive was an independent, funny, generous and mobile person. She is now unable to walk or feed herself. It's heart-breaking and so cruel.

My husband and I have found this forum invaluable over the last few months and I just wanted to say thank you! Kevin's recent re-post comparing PSP to a child's behaviour was spot on and really struck a chord. It really helps to read posts like these to confirm you're not going mad and not dealing with this on your own.

The one aspect we're not coping with very well is the change in Olive's behaviour. It's so upsetting. We've searched through the archives and found some older posts about aggressive and emotional behaviour, which has helped, but I just wondered if anyone out there had any further advice for dealing with aggressive behaviour? Each time we visit (every other day) we get a different Olive. The hardest Olive to deal with is when she's shouting and screaming, kicking, knocking things off her table on purpose, stamping on the footplates of her wheelchair. She's rude to the staff and other residents. I know it's the illness taking over, but it's heartbreaking to see such a change in personality. When she's not being aggressive she's either uncommunicative, tearful or (very, very rarely) almost back to her usual lovely self.

So, every time we visit, it's deep breaths, big smiles and hugs and lots of cajoling. It's emotionally draining, as I know you all appreciate. It doesn't help that my own Mum had a serious stroke 4 years ago and is also wheelchair bound. Luckily she's still able to live at home, with visits from carers, but it does mean we've two sets of Mums to look after now! We're extremely lucky that Olive qualified for CHC funding and my Mum can afford carers, who are all wonderful. And then there's the guilt...the guilt of not being with them 24/7...the guilt of walking away...and not being the ones caring for them 24/7...

Oh well, onwards and upwards. Thanks for reading. Thanks again to everyone who contributes to this forum and for all the valuable information which we devoured when setting out on this PSP journey (from hell).

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I have to be honest and say that I really don't know the answer here. David exhibited lots of similar sounding behaviour, but in his case it always seemed more clumsiness or simply not able to do it, rather than deliberately knocking things over, kicking etc.

In my experience, David wasn't like that. (Sample of one, of course). Either he was lucky and didn't develop those symptoms, or somehow he managed to fight that part of the disease until he simply couldn't really move at all. I really don't know. I do know he fought so very hard, but I'm sure every sufferer does.

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Does the neurologist have any thoughts about these behavioral issues?

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We're going to request another consultation. Thanks for suggesting.

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Hi Clare;

I'm afraid I don't have much to offer either: my husband (CBD) has not displayed any dementia symptoms (although he has cognitive loss). Like Robin below, I wonder what your neurologist has to say about this behaviour? Sometimes diseases like CBD present symptoms such as you're describing: CBD is, I understand, under the umbrella of Fronto Temporal Diseases (these are diseases that affect behaviour such as lack of inhibition, aggression, hallucinations etc.) I realize you said that PSP is the diagnosis so far... Has any medication been prescribed?

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I read briefly about Fronto Temporal Diseases - will research further, thank you. The only medication she's on is Madopar. Will speak to the nursing staff again, see what they say. Thank you x

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What a challenge two moms with severe needs you must be continually pulled in 2 different directions.

It is definitely worth talking to the Neurologist is she on any antidepressants or any other mood altering drugs?? If not maybe this would help. Poor lady must feel as though she has been caught up in a whirlwind herselfjust as you have!!

Take care

Tippy

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Thank you xx Will definitely talk to the Neurologist.

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Heartbreaking to read Claire, I understand the guilt, I understand the extreme stress of wondering who we will find today, will they be happy or crying? The thing with Psp it’s so bloody frustrating for the patient, a once able person can sadly now do absolutely nothing!

I don’t know if it’s possible but perhaps the home could get the hospice involved and send a clinical nurse specialist in to perhaps advise on some anti depressants (I’m not saying these definitely work, but may help take the edge off for your mother in law) and maybe something to calm her a little, equally the gp May be able to help with this......just an idea

To think that your own mum is wheelchair bound too after having a stroke and has carers, must really stress you to the max!

Sending huge hugs, reckon you need em x

Ps well done on writing a post, the advice and support you’ll receive, I’m sure will spur you on to keep writing x

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Thank you! This guilt thing is awful isn't it! Anyway, will pursue the anti depressants and a chat with the GP and Neurologist. Anything to help improve Olive's quality of life... x

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I think the sort of behaviour you describe is not unusual in PSP patients although by no means all exhibit it. Some remain peaceful and calm throughout. My husband certainly went through a phase of very difficult behaviour and, while he could still speak, was sometimes verbally aggressive and (seemingly) deliberately hurtful, something completely out of character for him. Luckily, like most things with PSP it was a phase and it eventually passed. I think it depends on which precise part of the brain is being affected at any one time.

In our case a small dose of a calming drug was prescribed and this certainly seemed to help. I know some GPs are very unwilling to do this but my view is that, leaving aside the difficulties for family and carers, it must be so distressing for the sufferer him/herself to be in such emotional turmoil.

Is the hospice involved in your mother's care? If so, they will be able to give you good advice I'm sure. In my experience they are focussed on maintaining and improving quality of life where possible and it is important to be able to spend quality time with your mother for however long she has got.

you do seem to have a lot on your plate at the moment with both mothers to look after, but please no guilt, you are doing what you can and it sounds as though that's a lot!

Hope things improve.

Vicki

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Thanks for your kind words. Interesting to hear it was a phase for your husband and that it eventually passed. There's hope! Glad for you both too, it's not pleasant is it, for either parties?!

We're going to seek further advice from the staff, so hopefully we can make the situation less stressful for all xxx

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Mick was put on trazadone to help him sleep and help his anxiety which he always ended up verbally aggressive when he felt out of his depth, he is also on propranolol he takes these when the anxiety gets bad ,so sorry about your situation guilt is draining my mother had dementia and lived 100 miles away so I can emphasise, she died a few years ago I don't know what I would do if it had been now .keep strong and big hugs x

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Thank you x Thanks for the advice about the treatment for anxiety, really helpful. Hope Mick is doing ok. No matter how close or far away we are, we all seem to have these pangs of guilt.

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So sorry to hear this. It must be so hard.

Chris didn't have aggression at all - only grumpy or stubborn - more of a problem with apathy.

It must be frightening for her and so distressing for you.

love, Jean x

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Thank you. You're right, it must be so frightening for her, and confusing and upsetting. We will definitely investigate antidepressants or something similar x

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Hi claredavieswales!

Thank you for sharing your experiences and feelings.

On these occasions a sentence of Anne-Heady comes to my mind:

"Never forget to get plenty of rest, ask for help and most of all "ditch the guilt!"

Big hug.

Luis

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"Ditch the guilt" - I like it! Thank you. Will keep that in mind x

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Hi totally feel for you mums CBD has taken a downward turn on the behaviour side aggressive nasty tearful , prone to throwing things hallucinations the lotdoctor has prescribed different anti depressants to calm her down including a night one which seems to really mellow her we have had a hard time with her and therefore she is going into respite today I feel so guilty so your post luis has made me smile than you . The mental health crisis team have been good and helped suggest medication for the doctor to prescribe keep smiling and happy valentines x

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Sorry to hear about your Mum. Please don't feel guilty, she will be well looked after in respite care, and you will have a break. Medication seems the key here so we will pursue this. Thank you and take care xx

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Sorry to hear about your mum and mother in law, you are going through an awful time. Medication has been mentioned in quite a few of the replies, so hope the medical staff can help in some way. Best wishes Nanny857 xx

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Hi claredavieswales

I've only just seen your post today.

Welcome. I'm glad an earlier post helped. That's pleasing to know.

You have so much on your plate. I hope you are getting plenty of support too. Caring can be both physically and emotionally draining.

I only have a little to contribute. My Liz had a diagnosis of PSP and only recently I recalled the Neurologist adding"with some elements of CBD."

We are very close, warm and loving, but sometimes she would be 'passively aggressive' for days on end. Her Sister might visit and she would be an absolute darling and as soon as the front door closed she would start up. Just being ruddy difficult, but never overtly nasty. There was a subtle change in her demeanour and I knew the next hour or two would be hell.

Nothing I said or did stopped it. Occasionally I managed to get her to stop by saying "Let's just replay the last ten minutes." and then go through what was said and done and finish by, "Do you think you are being reasonable?" or some such. Sometimes she would stop and give me a hug. Sometimes she wouldn't. What was always apparent was the surprised look on her face. She did not realise what she was doing.

Another key thing I noticed was that when we 'unpacked' what was going on she might have an idea that I had done or said something which I hadn't, but I would have to dig that out. An example was she reported to her Sister that I had slapped her. She was adamant that I had. It was only the next day she said, "You didn't slap me did you. Why did I say that?" One particularly bad day she rang the police and sobbed down the phone. The first I knew of it was a knock at the door! She had no explanation.

Behavioural issues and 'hostility' tend to be associated with CBD. However I believe it can be associated with PSP too, sometimes.

So the big question - what can be done?

We discussed it with our Neurologist, a specialist in PSP at Queens Square London. He is, as they say, a top man. He had no solution, the only possibility being medication (sedation) which we all agreed would be too life inhibiting.

I would do 'time out'. For ten minutes I would leave the room. However she worked her way around that by getting out of her chair and I would rush back to find her on the floor. More bruises to explain to the carers.

I am now retired, but I used to work for the NHS as a therapist. Various different kinds of Cognitive and Behavioural approaches. So I was very well placed to try different approaches to remedy this. Quite simply none of the worked. The reason being that PSP/CBD bring with them a certain fixedness of thinking. So changes are not established and behaviour changing responses are forgotten.

In the end I resorted to a pure behavioural approach. The is a book called "Don't Shoot the Dog" which was written by an animal trainer. She looks at all of the ways 'we' reinforce bad behaviour and how to bring about change in the dogs behaviour by responding differently. I is so well written it is on many trainee therapists reading list! That approach had some effect some of the time. However most often what we termed, "Bad Lizzy" would emerge and hell would commence.

We even got to the stage where she might say, "Where does Bad Lizzy come from I hate it?" Well, it comes from parts of the brain kicking in with ideas and moods which are not appropriate... all a part of the brain deteriorating I think.

I would read 'Don't shoot the Dog' - its a thin book and quite amusing in places.

Do try sitting down and reviewing what has happened in the last ten minutes, perhaps after having ten minutes out. And do say, "I am having ten minutes out."

Lastly - love and hugs really can be effective. I would always try and remind myself that the difficult behaviour is the illness and not them.

Gosh, I wrote a lot more than I intended, sorry. I do hope some of this helps.

Wishing you all the very best

Warmly

Kevin

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Thanks Kevin, this has REALLY helped. More than you can imagine. What you have described with your Liz is almost a carbon copy of what we're experiencing with my mother-in-law. Sounds like you've worked through all the possible approaches to managing this type of behaviour. It must've been really hard.

We've had phoning the police too, and the hairdresser, with strange accusations (some of them quite funny after the event!), plus saying the carers have told her she can only go to the toilet ONCE a day. We, too, can't leave Olive alone as she is constantly trying to get out of her chair. Turn away for 1 minute (when she's not asleep) and she's on the floor, usually head first, then it's paramedics, sometimes a visit to A&E, and lots of bruising. The carers are fantastic, but even they can't get to her in time on occasions.

So, we will definitely seek out Don't Shoot the Dog - thanks for the recommendation.

On a positive note, we took Olive out in the wheelchair on Saturday, around Cardiff Bay. Sat and admired the sea view and took in some fresh air. I've also just had a text from my husband, who is with his Mum now, on his way home from work, who says she is having a good day today, has helped her with her tea and managed to have a bit of a chat. So all in all, a good day!

Thanks again for everything. We're so glad we found this forum :-)

Hope all is ok with you xxxx

Clare

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I can relate to that, Kevin.

Chris used to get out of his chair and fall the second I moved. He wouldn't ring a bell or any thing.

I tried all ways - until one day I found myself threatening that if he fell I would not help him up. He immediately fell and I walked away !!! I went back at once as I realised that as with small children, it is no good getting into a head to head. You can't win because they are not reasonable.

At other times he was charming and cooperative. When I tried to talk it through with him he got upset. Like Liz he just didn't know why. It must feel so bad.

Happy days !!!!!

love, Jean xx

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Hi Jean

Youv'e described it perfectly.

It used to have me banging my head on the wall or sitting in another room exhausted and tearful, but still with an ear out for movement.

Its that stubborn thing which comes with PSP too eh?

:)

Hugs

Kevin

xx

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Looking forward to meeting !

xx

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Me too - You have helped Liz and I so much.

:)

xx

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Hi Clare

I'm glad it helped.

One thing that is very essential.

Tell your GP and any other professionals involved about her behaviour. Make sure they record it.

Adult Safeguarding is being prioritised by Police, Health Professionals and even Care Agencies are super vigilant (or they should be). If there are records then it is less likely that will go into full investigative swing. Even a bruise can trigger it. So get bruising and 'reckless / risk unaware mobilisation' leading to falls marked on the risk assessment too.

It sounds like you are going through the same gruelling mill. I am so sorry for that it knocked six bells out of me.

Liz is in a nursing home now and, with her deterioration, she is much less prone to it.

Oh, adding. I have seen many times on the forum that PSP/CBD folk tend to take it out on those nearest and can be really fine with everyone else. Liz was like this and no-one believed me until she was in the nursing home kicking staff etc. All of that has stopped now - Thankfully.

And welcome here :) - It sounds like you have a lot to offer too.

Warmly

Kevin

xx

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Thank you. Hopefully the kicking off will stop with Olive soon too. I'm glad Liz is less prone to it these days but sorry to hear of her deterioration.

Thankfully the Nursing Home is really good and records everthing. They phone us immediately too, if anything happens, no matter how small the incident may be. The GP visits regularly too.

Keep strong.

Clare

xx

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