Today was hard

[DALLY123]

Today was a hard day. My dad didn't open his eyes at all during our visit. He whispered hello when we first arrived but that was all. I feel completely helpless. I know he can hear us, he can hear his granddaughters but I am really struggling with everything he has been robbed of. Life is so cruel. My thoughts are with everyone suffering with this horrible illness and to everyone watching their loved ones go through it.

[Dar12]

I feel for you, my granddaughters always run over and say hi pops, not looking forward to the day he can’t open his eyes. Xx

[Kelmisty]

Hard, mum struggles some days with eye opening as she gets worse. X

[Bergenser]

We definitely have days when my husband (68 years old, diagnosed with PSP June 2021) is having a bad day. Normally he's up around 7 am, eating breakfast and ready for the day by 9am, but if anything is off or he's not slept well, he can be completely out of it and keeping his eyes closed till lunchtime. It's upsetting to his carers and physio when he's not as responsive as they are used to. It would be even more upsetting to his grown children and his grandchildren, however he'll usually find the strength to be present and awake when they visit.

It's hard to accept the bad days along with the "less bad" ones. However I often ask my husband, on a scale from one to 5, how happy he is, and so far he's showing me five fingers. I think that's the best we can do, as the carers and loved ones - just stay positive and try to make the best of the good days.

[45purple]

Sorry to hear of your dad’s diagnosis. As a loved one it’s a devastating to watch a loved one go through this. My husband often sleeps or closes his eyes when you’re speaking to him even when the Grandchildren come to see him. Your not alone in this journey 💜💜

[DeLids]

I'm with you Dally123. My Dad is still going with 'life' after nearly eight years. It's slowly robbed him of every bit of control, and I can see that the last signs are on the way. He's not able to use a switch reliably any more partly because he can't look down to see it, he also can't feel for it, and his finger movement is really variable. His eyes sometimes involuntarily close but thankfully not all the time yet. I agree with you, I think this is one of the cruelest conditions a person can get.

Do you ever read a story to him, or set him up with audible books or podcasts? My Dad watches the news channel 24/7 (he doesn't sleep well) because he can't change the channel for himself and the carers don't offer to. Apathy is one of the symptoms of PSP so he doesn't seem that bothered but I can't imagine being tortured with the same news items over and over again all day and night. I know Dad appreciates when we all visit but I feel like I've had to abandon him because it was just too heavy to provide care at home when we're all working full time.

I can't give you any fixes, but I can tell you I truly do feel your pain and I'm thinking of you. Good luck x

[MRSYafffle]

It's a horrific journey to be on, sending love and lightness to you and your family. I've also just had a dreadful visit, it takes my breath away the sheer cruelness of this disease.

[Leosta]

PSP is awful. Be strong Dally123.Hugs and prayers x