Need advice about how much sister understands.

[nannygoon]

My sister has had PSP for about 4/5 years not speaking at all now but other day we asked her a number from our Mother's coop club and she ruled it off with no trouble. Does she understand all we are saying to her?

[NannaB]

If she is like most other PSP sufferers, yes she does, every single word. In her mind she is answering all your questions, reminding you of things you have forgotten, laughing at your jokes and crying when she hears something said about her that upsets her. Please include her in every conversation even though you probably won't get a reply. Tell her to put thumbs up for yes and down for no and see how she responds. If you have a phone call, tell her who called and what was said, even if it was someone trying to sell you something. In short, treat her and talk to her like the sensible, sensitive adult she is.

You will be rewarded when you get a response like you did the other day.

Best wishes

Nanna B

[nannygoon in reply to NannaB]

Thank you very much for your reply, I am finding it so difficult and emotional watching my Sister fading away and not getting any form of communication from her she cannot smile or laugh anymore just stares blankly at me. Not confined to wheel chair and can't feed herself nursing home very good and I am very grateful to them she is 80 years old.

[NannaB in reply to nannygoon]

Hi Nannygoon, it is very difficult isn't it? Not getting a response, it is hard to keep talking but doctors recommend talking to folk in a coma as they say they can hear so knowing our loved ones can hear and understand makes it even more important to make them feel part of what is going on. I find it hard watching my husband become more and more less able. Yesterday he couldn't walk the few steps from the door to his chair, I had the get the wheelchair. Today he managed it but who knows what tomorrow will bring. I know he is aware of his deterioration and must be so frustrated and scared of what else is to come. As carers, family, friends, we can only do our best to make life for them as good as we possibly can whether it's full time care or visiting to tell them family news or reading the newspaper to them. I was recounting a funny incident to a friend that happened years ago with our sons. My husband did his funny humming laugh and a tear fell from his eye. I asked him if it was a happy tear and he put his thumb up. Perhaps your sister would like to be reminded of funny things from your childhood.

It's never easy visiting folk in homes or hospital so I wish you all the best. I'm sure your sister appreciates any time you spend with her.

Nanna B

[jimandsharynp in reply to nannygoon]

Within 24 hours of death my grandson visited my wife and just set down and told her what was happening in his life. He was 16 at the time. He knew she understood what he was saying. Hugs! Jimbo

[JudyJ]

Hi Nannygoon:

I just turned 56 and was diagnosed with PSP 2 years ago tho my Doc, for specific reasons, believes I had it for at least 2 to 5 years prior to diagnoses. He now considers my PSP 'mid-stage'. It's causing more difficulty with time but with that said, I consider myself blessed and lucky compared to what other persons are experiencing with PSP.

I agree with NannaB. Tho our brains do deteriorate as PSP causes massive cell die-offs at random, PSP also cause other muscles, tendons, etc. to become unstable or non-functional. Vocal chords are a common target. So she may not be able to express much if anything, but comprehend part, most, or all of what's going on around her.

During some regressions with PSP, I have felt to weak to talk or could only whisper at best. But I did understand what was going on around me.

Keep talking to her as normally, and encourage others to do the same, as when she was able to speak. This will also help her stay cognitively active.

Best of all good things going forward,

Judy Johnson

MN

USA

[dorothy-thompson]

Dear Nanny Goon

Yes, Yes a thousand times Yes.

Kind regards

Dorothy T

[millicenthatton]

Hi Nannygoon, my father has had PSP for 14 years and is 89. He has not spoken for many years but we know he totally understands. We get talking newspapers, people to come and sit and chat with him and we tell him everything that is going on. He is extremely frail now and mostly bedridden. Cannot swallow or perform any simple bodily functions. Occasionally he finds the strength to hold my hand and kiss it, he understands all right. My thoughts and understanding are with you. Much Love.

[jimandsharynp]

I can assure you that many PSP patients who cannot communicate by even lifting a finger or thumbs up or down still know what is being said. They can't answer or speak but the brain is still active. My dear Sharyn was in 24 hours of death and bed bound with no way to communicate. Her sons arrived from NJ and VA at that time. I told her "Your sons are here". He eyes opened wide in response so I knew she was aware. My first wife died from a rare disease CJD (dementia disease). My mother visited and my wife couldn't speak or do any responses whatsoever. When my mom said when leaving "I love you darling" to my wife a tear went down my wife's cheek. I knew she understood what was said just couldn't respond. So don't talk "about" your loved one as though they aren't in the room. Include them in the conversation even though they can't respond in any way. Hugs, stay strong! Jimbo

[65682811]

My husband understands a great deal. Although he’s unable to carry on a conversation, he’s sometimes able to express a few words. They are always relevant. He watches news a lot and remembers the names of government officials and world leaders. When I speak to him, I give him plent of time to respond.