As most of you are aware mum was diagnosed last week with PSP.
obviously trying to do as much research as we can.
mum can only say yes or no and sometimes the odd name, or short sentence. We were thinking of getting her flash cards. Has anyone ever used them and did they help?
Thanks guys
I tried with my husband but he couldn't find the one he wanted. If I held them up in turn, he never acknowledged when the correct on was showing. I also put them together in a ring binder. But he couldn't manage those either. It may be, however, that if we had used them earlier, he may have managed better. Why not give it a go? I made ours by sticking pictures onto cards downloaded from the internet. I also used packet labels I.e. Coffee, tea, Horlicks. The drink ones did work but now I just take the tea bag or coffee jar in and he takes hold of what he wants. Horlicks is for night so I just ask him and thumbs go up. My husband was trying to tell me something at midnight on Monday. I understood, "I want to..." but couldn't get the end of the sentence. I spent a long time with him then, and the next day, trying to understand, listening to him, trying to get him to spell it out on a letter chart, keyboard and various other ways. Eventually I gave him pencil and paper. He hasn't been able to write anything legible for months. I told him to write it down in large capital letters. I told him not to write "I want to..." But to continue the sentence. He wrote, "Go to blue room". When I asked what he wanted to go there for he wrote, "sleep". I repeated the whole sentence, "I want to go to the blue room to sleep". Thumbs went up....hooray! The only problem I have now is that we don't have a blue room.
I still have to solve this but I know I can now try pencil and paper if I don't understand what he wants, which I had given up on months ago.
If he wants to sit on the toilet, he removes a rubber wrist band from his wrist. The Hospice knows this sign and it works for us so I suggest you try anything you can think of, something may help, I do hope so.
X
Good morning, Opope - we tried flash cards but for some reason I never understood my wife, Roisin, ignored them. But she was quite happy to write or scrawl "yes" or "no" so I wrote lists of things giving her various options for activities during the day, e. g. Music, Audiobook, Garden, Walk, Shopping, etc, plus "None of the Above" and she would either write yes or no or, in her last few months, place a tick to indicate her preference. Sometimes she would give a "thumbs up" or down. In shops, buying clothes for example, Roisin would never respond to the question " Do you like this?" Or, "Do you want to buy this" with a thumbs up sign but would always respond on paper with a tick or a cross, so I learned always to bring pencil and paper whenever we went out, or anywhere when I might need to ask her something in front of other people.
Even so, I would try the flash cards if I were you. You never know...
Good luck!
Christopher
Thank you
I will try anything so that mum can communicate. She lost the use of both arms however the right one she can raise slightly. Writing is out of the question but she can point.
My mum didn't like looking at flash cards they seemed to upset my mum , I bought my mum a book to write in and over the weeks how the spelling got worse and couldn't write in a straight line, mum sadly passed away 7 months ago but we've kept the book and read all the little notes she wrote my brothers and myself when she was able to saying how much she loved us all . And I miss you mum so much xxx thinking of you all on this forum as I know how hard it all is to watch your loved ones battling this terrible disease love to you all xxxx
Blackcushion
thank you so much for your response and I am so sorry for your loss. It means so much that you have taken the time to reply.
I have started to read your posts and I feel as though I am re living your experience of this terrible disease.
My mum is still in hospital after 6 weeks. We r waiting the NHS assessment and the right care package for her to be discharged.
She has had thrush in her mouth, an e coli urine infection and a lung infection both hospital acquired. I find myself asking her various questions to try to identify why she is agitated. I know its because in her head she knows what she wants but she cant say the words.
Her eyes keep closing now but she also stares at us alot almost looking through us.
I cant believe more isnt done to identify this horrendous disease.
Again thank you
Opope
The PSP brain works fine, for the most part, but it takes a long time to formulate answers to questions. Be patient and you might be surprised that they can answer. Because the brain works slower PSP patients don't converse much. By the time they formulate something to say usually the conversation has moved on to another topic. Jimbo
Jimbo
Thanks I will try to be patient, however my mum often speaks like a toddler, its so fraustrating for her as I know in her head she knows what she wants to say.
Some good news
What is next?
Moments of joy
PSP Fact Cards
I feel so useless
