I visited Dad on Sunday evening and had a decent time. It took a while to have a meaningful conversation but that has been the norm for a while. When I went again on Tuesday afternoon I couldn't understand a thing he was trying to say, it sounded like grunts to me or just his lips moved and no sound came out. He has a picture chart to help with needs and wants but his mobility has deteriorated so much he can't even point to the pictures now.
I am hoping it was just a bad day for him and next visit will be closer to normal but if not time to figure out something else to help communicate, maybe the thumbs up for yes method.....
Ron
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Dadshelper
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Hold his hand and see if squeeze for yes and no squeeze for no works.
I feel for you! I had a similar experience with my dad when the speech area of his brain was badly affected. His original diagnosis was stroke, but it turned out he had a tumour. Either way, stroke / tumour / PSP, the effect is the same since that part of the brain stops working properly. Hopefully, your dad's speech will not get worse for a while and you will be able to continue to have two-way communication using whatever means works.
Keep thinking outside the square and you may think of something that will work between you.
Hugs
Jen xxx
Is he getting any speech therapy? It might help. The chest muscle get weaker making talking harder. As with everything someone with PSP tries to do it is exhausting for them to do it.
Oh Ron, I'm so sorry...it might be a bad day, or it might be a "step down". My hubby's decline was gradual but punctuated with these jolting "step downs" from out of the blue. Because of this cognitive decline, he didn't seem to want to use the iPad that had been custom programmed with speech replacement tech for him... He used a plastic laminated alphabet card to spell a word for me then I'd guess and he'd thumb up/down. It's so hard for them - and us, but your heart does break.
Yes I find it one of the hardest things not being able to hold a conversation and John gets so frustrated when I don't know what he is trying to say. However occasionally he will come out with several words. Such a cruel disease watching them deteriorate xx
My husband reacts similarly. Somedays, sometimes are better. I watch carefully , but it’s hard to get a handle on why he is much less aware at some moments. He is definitely distracted by the TV etc. He does best when one person is speaking to him and and we can get him to look directly at them. This is short term. He is also best in the morning. From time to time he will have a positive reaction from a nurse and shake his head to answer or say yes . It actually frustrates us as our children and grandchildren have done everything and get no response . Any reaction from him would mean the world to them. He seems to be physically able to speak, but says no more then 3 words a week, if that. 😢
He also has been unable to use a picture board. I thought it would be a great idea about 6 months ago, but he was not able to use it. Squeezing a hand or shaking a head does not work for us. He will squeeze a hand when asked, but not for yes or no. He just squeezes and holds on.
The only thing that has worked for us (sometimes ) is shaking his hand up and down for yes and sideways for no. For some reason, maybe because he used to shake his head for yes and no, he cAn get this.
It is frustrating , because at times I can see that he is still inside of a body and mind that is continually failing him. If I really thought about it, life would be unbearable for me also.
Thank you for your reply about the taste of coffee this morning. It helps me with accepting some of these issues. I wish to share with you what a dear friend told me when my mom was in the nursing home when I asked what I could do to help mom at this stage. . . 'now is the time for you to enter her world - sit and hold her hand - read things she used to enjoy - just be with her. . . I believe you are there... and what a blessing you are to your dad. Sending HUGS - Granni B
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