No communication: My sister 81 has had PSP... - PSP Association

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No communication

nannygoon profile image
11 Replies

My sister 81 has had PSP for about 5 years can't walk or feed herself doubly incontinent and eyes closed most of the time, so difficult with no communication but I told her it was my birthday soon and I asked her when is my birthday? I said November the- - and she said 23 rd!! Which was exactly right so just proves she still knows what we are saying to her but can't join in or communicate! I am finding it so so hard.

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nannygoon profile image
nannygoon
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11 Replies
Heady profile image
Heady

Hi Nannygoon, thinking of you!

Sending you much love and hugs

Heady

nannygoon profile image
nannygoon in reply to Heady

Thankyou for your reply it helps to share the load.

nannygoon profile image
nannygoon in reply to Heady

Thankyou for your reply it helps to share the load.

Glyder profile image
Glyder

Hi nannygoon its awful isent it terrible disease. My dad has had Psp for about 6 years now he's like ur sister and he doesn't even get out of bed I go in most nights and he is always asleep but manages to wake up for about 5 mins then back to sleep he goes his mind is still there and thro it all still manages to smile. U think the worst part is he can't tell anyone when he's hungary or needs a drink the carers have made up a pitchers chart where he can point out what he wants but to be honest he hasn't got the energy to lift his hands now so sad. Well I hope every thing goes ok for u and I'm sending my love ❤️Glyder

nannygoon profile image
nannygoon in reply to Glyder

Thank you so that that was helpful to take care.

MaddyS profile image
MaddyS

Hello nannygoon

We found the lack of communication the most difficult to deal with. None of the communication aids we tried, must have tried them all, worked. The best that I could do was to keep talking, telling hubby what I was doing, who phoned, what they said and so on. Sorry I can't be of any more help. Always remember that your sister is there, mind intact body stopped responding.

Love and hugs, maddy

nannygoon profile image
nannygoon in reply to MaddyS

Thank you will take your advice take care.

zjillian profile image
zjillian

I find that physical contact is the best communicator. My husband cannot understand my words and gets very confused but if I kiss him or hold his hand he responds. Also the sudden clarity, remembering something, going in and out of good seconds is always startling and somewhat painful to watch.

Jill

Costa Rica

nannygoon profile image
nannygoon in reply to zjillian

Yes I think you are right, Rose likes to hold my hand and she stretches out and touches my face without a word. I was advised by the parkinsons nurse to get some nice hand cream and massage her hands, so I am going to give that a try. Thanks again take care.

zjillian profile image
zjillian in reply to nannygoon

Good Luck

Jill

Anthonyian profile image
Anthonyian

Hi thinking of you it's very hard when you are caring for someone you love

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