Eyes closed - so frustrating!

[Idris]

I'm the sole carer for my Mum, and I wouldn't change it for the world. But there are moments when I just want to yell at her and shake her. The most frustrating thing of all is her closing her eyes at the most inopportune moments, like when she's halfway across the room, or trying to manoeuvre herself out of the loo, or eating. She will stop completely what she's doing, or if she's eating, just jab and scoop at her plate, often lifting an empty fork to her mouth. She sits trying to find the sleeves of her nightie with her eyes closed. It all takes so. Very. Long.

I find myself begging her to open her eyes, telling her that she could do so much more for herself so much more easily if she would just open her eyes, but sometimes it feels like she's fighting me and fighting her own common sense. ARGH! And then I feel like a horrible person for getting impatient with her and losing my rag. Double-argh.

[jennifer-nind]

Hi Idris

Sadly this eye problem you describe goes with the illness. Patients have difficuly with the eye muscles, thus they can either stay open for long periods or close for long periods. Some patients have botox injections in the eye lids which may or may not help. It is as frustrationfor the patient as it is for the family.

Jenni x

[Idris in reply to jennifer-nind]

Hi Jenni, Thanks for you comment. I know the eye muscle problem goes along with PSP - I was just really expressing my frustration about it as I need to vent.

[Kathy]

Hi Idris,

Feel free to vent all you like!! That's what blogging is for

I know you say you are happy being carer for your Mum and wouldn't have it any other way but you do need a break from caring from time to time. Do you have a friend or neighbour who could sit with your Mum for a while so you can get away from it all - even if only for an hour or so each week?

Take care of yourself and give your Mum a hug from me

love Kathy x

[Idris in reply to Kathy]

Thanks, Kathy. At the moment, Mum is OK to be left for a couple of hours because (unfortunately) she spends all day just sitting in her chair, dozing or watching TV (she can't read any more, which was her saving grace up until not so long ago). So I can take breaks, although we do have carers to call in and make her tea and help her to the loo if I need to go out for longer than that. Thank you for your support.

[hmfsli]

Hi Idris,

If I had a quid for every time I, my sis and my Dad have said to Mum "Open your eyes" I'd be able to make a pretty hefty donation to PSPA. We know it is not deliberate but it can be so frustrating when we see her putting herself at risk of harm because she is not looking at what she is doing. In an odd kind of way the frustration is an expression of our love for her. I suspect this is true of you and your Mum too.

As an aside, have you thought about audio books for your Mum? They would be a respite from the TV and you might be able to get copies of books that she is particularly fond of to stir some memories.

hmfsli

[Idris in reply to hmfsli]

Thanks for your comment - glad I'm not the only one who gets frustrated by this! I keep telling her 'you'd find things so much easier with your eyes open', which makes it seem even more frustrating when she keeps them closed.

We're trying audiobooks at the moment, I suspect it will take Mum a while to get accustomed, but I'm going to keep trying!

[LesleyB]

Hi Idris

I too had lots of time of saying' dad, open your eyes'. It would take ages some times and others he'd open them and look surprised as thought he didn't know he had them closed. We also had a problem with people thinking he was asleep all the time, but he had ears like a bat and knew what what was being said around him which sometimes lead to quite humourous moments when he would suddenly pipe up with a little quip to the people around him. Because of people thinking he was asleep they would sometimes just leave him alone which was a shame as he enjoyed hearing what was going on around him so we ended up leaving a note on his wall at the home just reminding people he wasn't asleep and liked to hear the discussions that were going on.

Dad also in the end couldn't watch tele but he would listen to music and we also played him Mike Harding's 1 man show and it was lovely to see him have a little but silent chuckle. That was one of my best later memories as he always loved a good laugh. Take care Idris

Lesley

[Idris in reply to LesleyB]

Thanks Lesley. My Mum's the same, she enjoys being in the midst of conversation even if she's not joining in, and will occasionally throw in something. She enjoys a good laugh too, I'm trying to get her to listen to audiobooks and the radio, but it's hard for her to concentrate. Thanks again for your comment.

[Annette-in-Colorado]

Dry mouth and dry eyes seem to be part of the disease. We use liquid tears frequently. Sometimes hourly. Try to get those without any medication.

[judy1962]

Dear Idris,

This illness can be so frustrating for the carer. I have become so frustrated with my sweet husband and for so long thought he was responsible for these crazy behaviors because they seem to come all of a sudden and out of the blue. They can do the tasks one moment and the next moment they are totally incapacitated. I have found from talking to other carers and from this blog that the patients can not control any of this odd behavior. It feels beter to me to know that he is not trying to be obstinate or unruly in any way. When he says he can't help it or I dont know I need to take it at face value. I no longer get upset at him. I blame it on the illness and say okay honey we can try it again later. Sometimes, very unexpectedly he can do the same task that earlier was impossible for him. He does the eye closing thing all of the time. His family tells me to put him to bed because he is tired. I tell them if I were to put him to bed eveytime he closed his eyes he would never be out of bed. So frustrating for both patients and cares alike. I wish you the very best and for very good days for you and your mom. God bless and take care.

Judy

[ashav]

Hi Idris,

i was the sole carer for my dad and can understand your frustration. but its even more frustrating for them. The best is to make them feel happy, loved and normal anyhow. I would take my dad for movies when i know he is hardly watching. his eyes would keep closing. But i would keep narrating the story alongside so that he doesnt feel he's missing it. We used to read the news paper to him every morning, but while reading, we would first read out the headlines and then ask him which one he wants to hear. So that he still felt in control.

Hope you and you mum are blessed with lots of strength.

[jillannf6]

hi idris]

i too have psp and my eyes are closing more -they get very dry as i am not blinking and i cannot wear my contact lenses any more

it is restful to close the eyes but i am sitll awake and listening to what is being said!"

i am going to inquire about the botox injjections when i see the consu8ltnat in august worth a go]

love jill

[NHGrace]

We have the same issue with my mom! She'll be halfway across the room or into a shirt and close her eyes. She's not alone much, and has such poor attentional memory, but there is still much she enjoys (thankfully), including listening to conversations around her.