A rough few weeks

[Choosingjoy]

My mom has PSP. She is probably in about year 6. The past few months have been tough and the last few weeks have been miserable for her. She can’t sleep well. She appears very anxious . Speech is increasingly difficult and it frustrates her something terrible! She can’t walk very much at all. We brought in a wheelchair to move her around the house . Sometimes she cries out like she is hurting but then you ask her what is hurting and she says nothing. We have put her on an antidepressant and something for sleep but neither seem to be helping very much. I feel helpless . Tonight it took forever for me to figure out she wanted her teeth brushed. It’s like playing charades to figure anything out . Her mind appears to be pretty good and her memory also, it’s just that she can’t get her words out. I’m just sad tonight I guess and mostly wondered about the crying out like she is in pain ??

[Heady]

Try asking different questions about her pain. Steve always replied no, if asked if in pain. One time, when he had broken his wrist, the doctor had been asking about pain, but changed tactics and asked on the scale of 1-10 how bad was he suffering, of course the answer was 11.

I suppose the simple answer to your question is, if they look in pain, sweating, pale etc, then they probably are. Your Mum could equally just be crying out in frustration at PSP. Let's face it, we all do that! Try just cuddling her and telling her you love her. Being up close, not only are you giving comfort, but it will be easier to discover if there is a pain issue.

Sending big hug and much love

Lots of love

Anne

[Marie_14]

How about trying a printed laminated sheet with the alphabet? Let her point to the letters to spell what she wants? It won't last forever but it worked for a while with us.

Take care of yourself.

Marie x

[Tillie281 in reply to Marie_14]

Good idea, what about adding little drawings like a glass with water or a WC?

[Tillie281]

Not being able to work out what she wants can be so frustrating!

I think that if she is in pain, she would put a hand on the sour spot.

Mine past the day calling "Help me!"

I keep running up just in case.

Well at least I got plenty of exercise😉

[raincitygirl]

We were experimenting with a speech replacement program on an ipad before hubby died, but as he became increasingly compromised cognitively, we found that a laminated sheet with pictures worked better - much as Tillie's said. You can make a sheet for all the basic things like food, water, toilet, bed, tv etc etc then a "drill down" sheet that has pix of more options in that category. I had one for hubby's fave tv channels and one for fave meals, etc

You can also have "scales" like a horiz line stretching between a very happy face and a very unhappy face, with a neutral face in the middle. It works for almost any question that asks "how do you feel?" or "how do you like.."

"Do you want.." etc

The only problem with the alphabet sheet is that the person may totally lose the link to the language part of the brain and then even letters don't make sense. However the brain seems to recognize a smiley face for a long time... 😊

Good luck!

Anne

[Marie_14 in reply to raincitygirl]

Anne

You are right. Pictures sound much better. My husband was alright until a couple of months before he died and he suddenly lost the ability to spell correctly. So it worked until then but wish I had thought of pictures. Tillie think it as your idea so well done.

Marie x x

[Choosingjoy]

Thanks so much for the help ! I have tried using a program on my phone and she was able to use that some ... but had difficulty pushing on the screen. Maybe a laminated paper would be good . I feel so bad for her