Mum 81 with PSP.

[Kaylewis]

Feeling very cross inside as mum won’t even look at me when iam talking to her but if I walk out of the bedroom and turn my head befor I get to the door I find her turning her head and following me with her eyes. It’s like she is playing a game, anybody else get this behaviour?? X

[easterncedar]

Dear Kaylewis, please try not to mind things like this. The difficulty in focusing and tracking the eyes is a signature of PSP. That's why "supranuclear". Add to this the frequent confusion, and you may imagine how hard it can be to respond normally. I really wish I'd been more sensitive to my man's difficulties. I was often impatient, and regret it, of course. It's a very hard road you are on, and I sympathize entirely. Hang on. Give yourself some room to breathe, if you can.

Peace.

Easterncedar

[Kaylewis in reply to easterncedar]

Thankyou x

[Javan]

Just take time to verbalise differently using shorter sentences. This will give time to process and try to give a response. The brain still works, it just cant get the messages out to the right place. Keep going and you will find things that work.

[Kaylewis in reply to Javan]

Thankyou x

[Hidden]

We all get tired and grumpy dealing with PSP. There are good days and not so good day with grumpy days thrown in.

[Kaylewis in reply to Hidden]

Thankyou . X

[enjoysalud in reply to Hidden]

well said!

[NannaB]

I agree with what everyone else has said. When you speak to her, get down to her level and position yourself right in front of her eyes. If she is anything like my husband was, eventually she won’t even be able to turn her head. Even though you may feel cross, try not to show it as she will be trying her hardest to look at you, but can’t. Imagine her frustration. It’s hard, but try not to react in any way now, or say anything to her that you regret when she is no longer around. When I felt cross and on occasions showed it, I would always say, “Sweetheart, I’m not cross with you. I’m cross with PSP”. I also thought, one day I may be in a similar situation, not PSP but altzheimers, stroke or just old age which takes away my ability to care for myself. How would I want my loved ones and carers to be with me.

I hope you still have lots of laughter in the midst of the nightmare you and your family are going through. It really is the best medicine and I found with my husband, the best medicine for both of us.

Very best wishes.

XxxX

[Kaylewis in reply to NannaB]

Thankyou x

[Kaylewis]

Thankyou x

[FoggyBay]

I can just repeat what others have said. I am sure she is not ignoring you, as what you describe is an everyday occurrence with R. As said below, get in her eyeline or wait until she can turn her gaze on you (could be a long wait!). When I get frustrated with some of the things R does or doesn't do, I keep reminding myself that, if he could do them, he would and it just adds to his distress if I get frustrated about things he cannot help. Like NannaB, if I lose it I immediately apologise and say it's the PSP, not him. Try to stay calm yourself, for your own wellbeing. I've reached whole new levels of patience and acceptance and I'm sure even more will be required as we go on.

[Kaylewis]

Thankyou x

[AJK2001]

Mum has been like this a few times, sometimes I think she is just so tired she can't cope with doing anything, sometimes I think she is depressed (who wouldn't be) at how she is and sometimes she can't open her eyes and then with the other communication difficulties it can look as if she's withdrawn, even though she hasn't intentionally.

I agree with what others have said, try to make it as little work for her as possible, so get down to her eye level, keep questions & sentences short & simple, give her time to absorb (I am rubbish at this & find myself babbling away to fill gaps but quietness isn't necessary bad), is she light sensitive and is she having to look at you against a brighter light which hurts her eyes? And remember it's PSP not your Mum.

xxx

[Kaylewis in reply to AJK2001]

Thankyou x