Repetitive behaviour

[MartinHLondon]

Hi

My mother has PSP (stage 3) and is cared for by my father with help of carers twice a day.

My mother has become obsessed with a daily routine of repeatedly checking her savings and bank accounts and household bills/direct debits.

This has now become a routine that can take a few hours a day … only to do it all again the next day.

Has anyone else experienced this with a person living with advanced PSP?

Thanks

Martin

[SimonandMaria]

Hi Martin,

it is common... it is compulsive... meaning the person has no way of stopping herself doing it. It can be on very different matters. My wife at a certain moment, needed to know the time, constantly, she would keep me up at night asking me the time every minute... at 3.20 in the morning and then at 3.21 and 3.22 and on and on. During another phase, she wanted to continuously watch the TV series "Friends" and at each episode, we had to stop whatever we were doing to read the title of the episode, she just had to know it.

This comes with PSP and can be enhanced with LEVODOPA...

What helped us was understanding what "Compulsive" means... once we understood that this was not to annoy us or to be difficult, but that she had no control on this "need", it helped us be more patient, and even laugh about it. Untill we understood the "compulsive" side, we were driving ourselves crazy trying to stop/explain/discuss.

One of the ways out is "distraction"... Changing room would stop certain compulsions, turning on the music, proposing a massage... today, 3 to 4 years later, non of these compulsions are there anymore and at times I wished she still had some as it was also a sign of still being able to do certain things... I know it can be nerve breaking, but unless a miracle will happen. Its a phase, it will fade away over time. If on levodopa, mention it to the neurologist, as the benefit/cost balance does change over time and it can be a reason to stop or diminish a treatment... (only under a neurologist's advice).

Attention is needed if she can still spend/use credit card, as for some people it can be compulsive spending... if its "only" statement checking, its an activity that keeps one busy...

[AJK2001]

So much of what Martin says is familiar. Mum was constantly worried about money at one point, then it was the time - she couldn't see a clock so got her a talking one and often she wouldn't believe what it said. But as she degenerated these became less, which in some ways was a relief and in others very sad as it showed the decline.

Try to stay patient, I found by focusing on it being PSP, not Mum, made it easier to cope with.

[Sistergail]

My brother is obsessed with shaving, drinking cokes and going outside. It can drive you crazy.

[Hummingbird47]

My mom keeps repeating that she is very thirsty and keeps wanting to drink juice all the time even after she’s had plenty. The doctor says it’s delirium and put her on haldol. The behaviour has diminished but at times she will still say she is very thirsty. Distraction does help a little. Also I noticed this started after she got Covid….

[Hidden]

Hi Martin. Yes I have experienced compulsive behaviours with my Dad who had PSP. In my experience, distractions just didn't work. It probably sounds strange to say but if she gets any little bit of joy or comfort from it at all and you can keep her and her finances safe while doing it, just go with it, no matter how annoying or tiring it is. Joy and comfort is so hard to find with this disease, if they find it in their new behaviours or new world, just go with it while it lasts. The time comes when they can't do any of these things and that in itself is a whole new sadness.

If your mum starts to like repetitive behaviours and she is able, maybe see if she would like a game of large printed cards where she has to match pairs of cards. Its simple and safe and it can occupy busy psp hands and a psp mind that gets comfort from repeated tasks.

Blessings to you, your mum and everyone else on this journey we have found ourselves on.

[Junky60]

My husband was very obsessive/ compulsive about certain things.. I looked it up and yes this can be a symptom of PSP… he would get stuck on something.. the thermostat, ducting in the attic when we had a new air conditioner put in.. certain conversations. It is very wearying, I got to where I would have to tell him, I am not talking about this anymore. It is so sad.