Unable to swallow or open mouth

[bgentges]

Another new thing with Dad PSP. I know its been a log time since I posted, things leveled out for quite some time once he got worked out the proper combination and doses of his medicines. We had a sudden set back about 4 months ago where dad could not stand even with assistance, his legs would not hold him Because of this we had no choice but to place dad in a skilled care facility. He has been doing really well, much better than we expected at the facility.

Dad started being "unable" to swallow and at times can't open his mouth. He has had issues coughing\choking while eating\drinking for years. Last week he started going thru spells where he can't swallow and he can't open his mouth. You can see he is trying but its like the brain won't send the correct signal to do this simple task. As quickly has it comes on, it just ends and he can eat and drink fine. It can last for 5 minutes where he can't swallow\open his mouth, to sometime as long as 1.5 hours. At first we thought he was doing it on purpose, just being stubborn, the new thing he had become fixated on, something he can control. It quickly become obvious this was not the case.

Dad has a directive that he does not want a feeding tube. It is very difficult to watch. We can see the frustration in his face.

Just ranting.

[Melhukin]

Hi,

My dad isn’t at the stage where he can’t open his mouth yet - I wasn’t aware of this problem so thank you for mentioning it on here. My dad is at the end stages though of no communication or mobility. Just existence. He looks very frail and I’m not sure how much he is eating. When you place the spout cup to his mouth I think he sometimes forgets he has to suck.

It is a very cruel disease and I know my dad hates being in the nursing home where he is.

Best wishes

[lindaD_]

we do think a lot of things they do are deliberate and its not until later you look back and you read things if only we had all the answers at that time maybe we wouldnt get so frustrated with them , looking back it makes me upset for thinking he was playing me up.when he wouldnt swallow i thought it was because hed told me he wanted to die .xx

[bgentges]

I didn't realize inability to open mouth was a possible symptom either until it started happening to Dad and I started researching. Just as I think I understand all the "possible" things we will have to face, something unexpected occurs that I wasn't aware of.

[raincitygirl]

Sorry for this 💔

I hated the "step-downs"... It's like each time he stabilized for a period, I somehow deluded myself that we WEREN'T on a downward path!

Hugs to you XXX

Anne G