Frustration at no communication

[nannygoon]

Can anyone help? My sister 81 has had PSP for about 5 years and can't communicate now has no expression on her face I am finding it so so hard. Can she hear all that's being said and can she think? Will she be looking at us and thinking about her illness? Hope someone can help me with this question??

[NannaB]

My husband can't talk and has no expression but I talk to him as normal. I asked him something today and had no response so asked him if he was answering me in his head and he put his thumb up. I say put his thumb up but he finds that difficult now so if it is on it's side, I say touch my thumb for yes. He can hear and understand everything that is said and happening around him. Unless she has hearing problems due to her age, your sister most likely is the same so talk to her and tell her things that happen in your family. Ask her to squeeze your hand to see if she responds. I hope others who care for her are aware that she probably knows what is going on and are sensitive to what they say to each other within ear shot.

Best wishes

Nanna B

[kryste in reply to NannaB]

Aunt Bev and I made up our own sign laugage thumbs up is yes and down is no her hands and brain are fine except the one that is balled up and her middle finger works great ( Im sure you know what that means) I get about 3 or 4 aday we just laugh she I am stubborn with her she doesnt get her way like she used to I will let her try first a few times then I give in but not untill she tries I cant let her give up the more I keep her active the better I think she is we have different signs for different things like her remote, when she wants the speaker for the the tv and things like that its usally the middle finger than a laugh.

[NannaB in reply to kryste]

That's good. It shows she definitely does know and understands what is going on around her.

[nannygoon in reply to NannaB]

Thank you nannab that is helpful. Some of the staff have been on a course with the Scottish branch of PSP and found it really helpful and they know that they must watch what they say in ear shot of her. She is behind I am afraid of thumbs up or hand squeezing it is so sad I am crying just now thinking of her.

[NannaB in reply to nannygoon]

Sending you big hugs Nannygoon, visiting someone with no communication can be so difficult. During the last few days of my dad's life (not PSP), once I'd told him what was going on in the lives of his grandsons and great grandsons, I read to him. He always had The People's friend so I read from that. He didn't need to speak and I found it easier that trying to think of something else to say that didn't need a response.

Nanna B x

[Gigi]

My mom has days when she can communicate fairly well... will answer and laugh... and then there are days where she does not seem to respond at all. When she is non-communicative, I hold her hand and ask her to squeeze it if she is understanding what I am saying and every time she has squeezed my hand although often if is a very weak squeeze. Nevertheless, I know she is very aware of her surroundings and what the conversation is. It breaks my heart to think what that must feel like...

[wifemo]

Yes, Nannygoon, your sister will be able to hear all, and understand some. With Tony it was thumbs up/down and then squeeze, and it helped to give him lots of time to process the thought.

We used the radio quite a lot, and our son gave him a (Walkman?) CD player so we could listen to his music together. When our son visited, he has a smart phone that can record radio programmes, and it was like old times listening together as a family.

Just being there with her will be a great comfort, just the touch of your hand will mean a lot.

Thinking of you,

Mo

[nannygoon in reply to wifemo]

Thank you so much for your reply, Rose had a speech and language therapist a while ago who tried to get her to do thumbs up and down and point to signs on a chart but she got very agitated and would not try she is now beyond that stage now. On my last visit she kept stretching her hand to my face not making a sound and also with the hand that is closed in a fist all the time it was in a gentle way but I don't know what she was meaning by this.

[wifemo in reply to nannygoon]

Perhaps it was her way of saying she is glad to see you?

Maybe she could shake a fist for yes/no? I like Louise's idea of moving a foot or knee.

Mo

[nannygoon in reply to wifemo]

Yes good idea will try when I go to see her at the weekend thank you for that.

[easterncedar]

Dear Nannygoon, I'm so very sorry you and your sister are in such a difficult place. It is heartbreaking. For what it's worth, I've always been told that hearing remains when all other senses are failing, but of course what your sister comprehends no one can say. When my ex-mother-in-law was dying, hitched to a morphine drip, seemingly comatose and unable to communicate, I sat and read "The Wind in the Willows" to her. When I stopped, she fretted, so I knew she heard me and wanted me to go on. Could you set up an audio book for your sister? Or music? Peace, Easterncedar

[jimandsharynp]

Although my dear wife couldn't speak near the end I know that she was aware of what was going on around her. When her sons arrived the day before she passed I said "Your boys are here". Her eyebrows went up immediately but she didn't look toward them or speak. I knew at that moment she was still aware of everything. I pray this is true in your case. Jimbo

[nannygoon in reply to jimandsharynp]

Thanks Jimbo Rose did the same when her son arrived from York and her eyes grew wide and she clearly said "do you know what I want" but couldn't finish what she meant.

[cabbagecottage]

Don't feel bad about how you feel , I also foind it hard to cope when my husband looks blank with no apparent response . But inside he is responding and understand everything but slower . He can still speak but sometimes cannot . He freezes , when o ask something and I can see he is getting upset I change the subject or get him to blow or sing lalalalala . ahe thn unfreezes and can start again .

[cabbagecottage]

Don't feel bad about how you feel , I also foind it hard to cope when my husband looks blank with no apparent response . But inside he is responding and understand everything but slower . He can still speak but sometimes cannot . He freezes , when o ask something and I can see he is getting upset I change the subject or get him to blow or sing lalalalala . ahe thn unfreezes and can start again .

[cabbagecottage]

You do need a lot of patience not something we can have at all times after all .

[nannygoon]

Thank you all very much for the replies.I am very touched and I will try all the things you have suggested. Her son came up from York and like you say Jumbo her eyes grew large and you could tell she was happy to see him. Thanks again.

[elizalou1710]

Hi mum can't talk and both hands are clenched tight but she can move her feet and knees so I say give a little kick for yes or move your knee for yes , then I ask questions and she answers like that ! All the best Louise xx

[nannygoon in reply to elizalou1710]

Thank you so much, I get so much comfort from this site, just find it so sad my sister is 15 years older than me there are six brothers between us although 3 have now passed on she was like a mother to me and now I feel the roles have been reversed, but I will get through it she is well looked after in a great nursing home here in Scotland.

[dad94]

These responses are terrific. I just wanted to add mine,too. The Drs. at the Mayo Clinic said dad could understand just fine but the way of communicating was blocked. They also said he was blind- which made sense with the stare he had. Mom would play old comedy radio shows for him on tape and you could see the tension in his face go away.