A rare glimpse into my mother's world

This condition (cbd) never ceases to amaze and confuse me. Having not had more than the very occasional word from my mother for over a year, last week she called me by name and broke into a 10- minute conversation with me, during which she asked questions about my holiday and boyfriend in context. It was wonderful to have a chat with her and to know she cares about me as much as I do about her. Next day, she woke up from a doze and when I said 'ah good you are here again,' replied 'I always am!' I have since reflected and have realised two things: 1 that she may not be recognising me as I am now but may be thinking that I am my younger self as she didn't ask about my children etc. And 2 that as she didn't complain about her multiple disabilities or any discomfort she may not be aware of them - which is what I dearly hope for her. It is hard to know how many of her 100% care needs and disabilities are due to her cbd and how many are down to the antispasmodics and other meds she is on. One thing is sure - both cbd and psp are bizarre and terrible conditions for all those whose lives they touch. I would be interested to hear about other similar experiences, so please share! Blessings to all who read this. Mary

[Hidden]

Hi Mary my mother also has cbd and like yours speech has been very difficult for her. For the last 12 days she has been in hospital and her speech has suddenly improved enough for us to understand her at times. She has seemed quite firery even! At times she has seemed totally compos mentis and then dolally minutes later. We are thinking that the change in environment has maybe somehow affected her?!

Sending best wishes

Mx

[enjoysalud]

My son died on May 4, 2017. He died of PSP. He was in the hospital for 7 days. He was hospitalized with aspiration pneumonia and sepsis. He was given NO food only meds thro his IV.

I believe any improvements he showed the first to third week after his release was due to the medications he had been given thro his IV. I do NOT believe it had anything to do with a change of environment.

He rapidly deteriorated the fourth week and died almost 5 weeks to the day of release. While in the hospital he was given a PEG. When he came home he told me he did NOT want to return to the hospital.

[Sassys7 in reply to enjoysalud]

🙏🙏🙏

[ssdw1958]

I am happy for you that you had that precious time with her. It must be good to know that she doesn't feel any pain.

Good luck to the both of you!

[Spiralsparkle]

My Mum also has CBD but so far her speech hasnt been as affected as other symptoms have. She does though go between talking total goobly gook to then having a normal conversation in context. She is finding it harder to converse though now. Also has periods of being vacant and not responding to anything and then comes back into the room.

She is really sensitive to medication so isn't on that much really, they really to effect her badly. She does need something though for her myclonic jerks and spasms as they are getting so fierce. It is a throw up between helping symptoms and side effects. She has alwsys stated though I will not be made a zombie.

I really hope your Mum is now at the point she isn't aware of how she is effected. Mum sadly isn't there yet and really struggling mentally and emotionally with how her body is.

Hugs

[honjen43]

We experienced similar but briefer moments. Was lovely to be greeted with the old and happy smile and a comment from my love "And how are our 2 lovely rascals?". I knew exactly what year he was in! We have 3 children all grown up!

And another comment as I left the room with the social worker - " And we never saw them again!" Came from our early courting days when it was a fave remark. Think it came from a 'Beyond the Fringe" Goons, or Edinburgh Festival of early 1960s!. To hear that comment amongst all the problems he was having at the end period of life, and to know he was in a happy place!

Have never been sure just how cogniscant he was of what was happening to him in this last 3 months. He understood when told he could not return home. He knew in the final days he was dying. But in between - he seemed to have little understanding of what was happening and had lost the ability to comprehend much.

To know there were happy memories close in his mind make good memories for me to treasure twice!

Hugs

Jen xxx