Trouble Communicating

[Jkhakh2]

My husband is end stage PSP and under hospice care. He can no longer communicate verbally. He can still give a thumbs up but only occasionally. When I visit him he has desperately been trying to tell me something. I have tried making a sign with the letters of the alphabet really large and trying to figure out one word at time but he gets confused and has trouble pointing. Has anyone developed a easier way of communicating?

[Dadshelper]

Try asking questions that have just a Yes or No answer and maybe go to a hand squeezing for that. I played the guessing game a lot with dad in the latter stage. I'd start with simple stuff first trying to narrow down what he was wanting to say. You may have to ask the same question 2-3 times to make sure you are getting the correct response, dad had a habit of reversing Yes and No.

Ron

[Jkhakh2 in reply to Dadshelper]

Okay will give a try. Worst thing is he becomes very frustrated and agitated which makes me too! Sometimes he gestures with his hand and he gets stuck in the same jerking motion and can't seem to stop. That can go on for more than a minute! Makes me feel like I need to find the batteries and quickly remove them!

[SewBears in reply to Dadshelper]

My husband reverses yes and no too! I didn’t know that was a thing. He also mixes up left and right. He can still verbalize most thoughts but often I don’t know the topic and try to guess. It’s 50/50 here.

I know that I must take my time to give him a chance to respond before I ask him a second question. That’s about the only thing that I can think of to add to Ron’s suggestions.

[Dance1955]

Well I have a 1 2 3 might help I use it with my husband

1 (thumb ) means I’m ok

2 fingers means I need you just a small thing a toilet or drink or something

3 fingers means help me I’m in pain or it’s something urgent

at least it narrows it down and then you can take it from there good luck it’s a horrible desease isn’t it

Hugs my friend

X

[Nat08]

My dad is the same but i care for him at home by choice ...a little easier for me as im a nurse. I just say concentrate try 1 word at a time x otherwise i try with the alphabet too x sorry we are all suffering this cruel disease x god bless them and us xx

[Baileyboo]

Hi, we used a wipe clean board. It worked for a while. Unfortunately my husband struggled with making the words legible as his writing was so small.

This is so frustrating, another part of PSP sadly. It was in our case.

I am sorry you are experiencing this now.

Love and hugs

Pat

[Katiebow]

There very worst part of PSP and I never found a way to be sure what Ben was trying to tell me, it must be so awful for them not being able to tell you what's in their mind. I hope you find a solution to help ease his frustration.

Much love

Kate xx

[AJK2001]

Would a picture book help? Could he point to a picture or give you a hand squeeze when you say what they are, might help narrow down to the right topic. I'm sure people here have mentioned books they have used for this. I have a picture book we used for travelling - has pictures of toilets, beds, drinks etc.

[Jkhakh2 in reply to AJK2001]

Hey that's a wonderful idea... a photo book! Thanks!

[Railfan]

My thoughts exactly. You should look up AAC (Augmented Assisted Communication). There are many pre-made sheets you can print out or purchase. You could start with just a few paper sheets to see how well they work before investing a lot of time or money into putting together a book. Put a broad topic sheet together first. Topics like comfort, body, room of the house, emotions and feelings, travel, and doctor come to mind. Behind the topic sheet, would be pictures and words under them in large letters he can see and mean the same to both of you. Words like bathroom, recliner, bed, TV, water spring easily to mind while other words may take some thought.

[lindaD_]

that was the best i found . understandable that they are frustrated isnt it ,its in there but they cant get it out love them xx

[SusieTess]

This must be difficult and frustrating...the only thing I can think of is to get a white board, Walmart and Amazon has them, very inexpensive, and write each letter separately ( very large) and see if you can figure out what he’s trying to say by keeping track of each letter he chooses and putting them

together...

Good luck...

[Chiko1]

My father with end stage PSP struggled to focus his eyes. Their eyes don't or can not focus on a point and it's a blurry. Ie they stay apart making it hard for them to see the letter you have written on a large sheet of paper. We cared for my father until the end and would have regular visits by our local GP. Instead I would get my father to hold shut one eye while trying to focus with the other eye. Very frustrating I know and even more so for them. So hang in there. Sending you courage and strength

[Nanny857]

We are at a similar stage. It must be so frustrating for them when we can't understand what they are saying. We tried going through the alphabet with W squeezing my hand when it was the right letter. Sometimes it works. Other times especially in the evenings, I just say it can wait until the morning when he's not so tired and he nods his head. Sorry can't be more helpful. Best wishes Nanny857xx

[Liz_L]

We had similar problems, and the hand signals were the best way we had to communicate. He couldn't use his left hand much, if at all, but could use the right one reasonably well. We (me, mom, staff at the assisted living facility) got very good at figuring out what he meant (including one memorable time when he - jokingly - gave one of the PSWs the middle finger. She gave one right back, and got a big laugh from dad).

Anyway, from what everyone has said here, it seems like the best thing is to develop some kind of consistent hand or body gesture for when he wants to tell you something. We found the letter board also helped for a while, but after time he had troubles remembering all the letters, or he'd skip some, especially when he had a longer word.

I like the idea people here had of a photo book, it's something I think I should have made. I hope it works for you and your husband.

In our case thumbs up was good, one finger was yes, two was no, one finger up with middle finger going up and down was a maybe or not quite. Holding his hand up making a talking gesture meant that he wanted us to stop chattering so he could listen to the music, or he was just giving us a hard time. He had been a researcher (social sciences), so he and I would also use a scale of 1-5, which could be used for various things, not just pain (again, another memorable time, but more annoyance, when someone came to see him in the last month to assess his pain but was early and so did the assessment without me there. She had to redo the assessment because she didn't understand what he meant.)

Sorry for going on so long - your post brings back a lot of memories, some quite funny. All the best through this difficult phase of a crappy disease. We're thinking of you.

[bsilverman]

Wow. I just posted the identical question. I'm in the same place as you. Doing exactly the same. Very frustrating for everyone.