Can I know what mom is feeling?

[Blueclouds07]

Hello, I always have a question on my mind which is my mother is having PSP how can I know her feelings from inside, what does she feel? Her pain and sufferings!

[AJK2001]

I think this is something we have all struggled with, how when a person finds it difficult to communicate or loses the ability completely do you know how they are or what they want. With regard pain, medical professionals have ways of recognising pain & discomfort but I don't have experience of this as Mum rarely appeared to be in pain, she described herself as feeling "wretched" quite often, but quite what she meant I don't know. I think it was a general feeling of grottiness & uselessness. Being close to a person & seeing them regularly helps you pick up subtle changes, talking to Carers about what they see can add insight but alot of the time it's driving blind & relying on gut instinct. Try to be positive and make sure you notice the little things - a glimmer of a smile when the sun comes out or a bird sings. My Mum loved nature and a trip in her wheelchair through the local park, seeing children play in the river, dogs coming up to say hello, were all little things but they brightened her day & stopped us both becoming too down & morbid.

[Blueclouds07 in reply to AJK2001]

Really thank you I appreciate your words.😍

[JantheNana]

I understand what you are saying,I always wondered that about my late husband as well. He had always been such a positive person,solving problems both for himself and for others. I wondered why he could not solve the problems of PSP and overcome the obstacles it presented. It truly is a horrific and life changing disease. I am sorry for all who deal with it,patients and caregivers.

[Blueclouds07 in reply to JantheNana]

Yes that is true we are trying our best but we still feel that we can give her more.Thank you

[doglington in reply to Blueclouds07]

I still feel that 3 years after his death . I tell myself that I did my best with love. We can't do more.

Trust your gut feeling. Chris also said he had no pain but felt awful. The fact that he had PSP was sufficient reason to feel awful !

You can only show love and do your best. As you are. xxxx