What does it look like?

[Stormtrooper4]

Hello all,

My dad has CBD and is in the very late stages of this cruel illness.

I am just wondering if anyone that has lost a loved one to this illness can give me some insight into their loved ones last days, hours of life.

My dad's breathing can be strange. Sometimes it is really rapid, some times it is really shallow and then sometimes it is like he is is gasping for breath. He is very sleepy all the time and my mum struggles to get him to eat as he just won't always swallow and just sits with food in his mouth.

Yesterday the carers we have mentioned that dad had really cold hands and feet and they had gone a fully colour. My dad's room is warm and he likes to have a blanket on him so for him to feel cold on his hands and feet is very strange. His nose was really cold also.

We have never been in this position before and have never seen what the 'end' looks like for someone with CBD.

Any insight would be really appreciated please.

Thanks

[doglington]

My husband died with PSP. He had a very smooth and painfree ending. Everyone had time with him. He was loved and peaceful. He took the decision to stop eating and died 3 days later It is hard to let them go but it feels right for the decision to be theirs. They have had so little control. Good luck. My thoughts are with you all. Jean

[Stormtrooper4 in reply to doglington]

Sorry for your loss. I am glad your husband passed away peacefully.

My dad is unable to verbalise now unfortunately.

We do know his wishes as we made sure to have the conversation whilst he was able.

It's like we are all in limbo x

[doglington in reply to Stormtrooper4]

I remember so well. It's so important to talk about everything early in the disease. I hope your dad has a peaceful ending. Hugs Jean

[Dance1955]

my husband passed away in Dec last year I think in the end he had septis from all the urine infections

he suffered with PSP for 10 years and I cared for him suddenly he couldn’t swallow and the end came within two days he was at home and all the family were there we also had hospice at home they helped massively get help if you can hugs to you 🌹

[Stormtrooper4 in reply to Dance1955]

Yes, my dad suffers with re-occuring chest infections. The Palliative Care Dr said it would more than likely be this that he passes away from x

[45purple]

Sending hugs 🤗🤗💜

[Stormtrooper4 in reply to 45purple]

Thank you x

[speedywalker]

In answer to your question, sadly it sounds like the end is drawing near. The signs you mentioned sound like end of life. My husband also had CBD and sadly he also passed away in January . His symptoms at the end were very similar to your dad's, but he died within a few hours with family by his side, and the end was thankfully peaceful. Its such an awful illness. I hope this has helped. Thinking of you all. 😘😘

[Stormtrooper4 in reply to speedywalker]

Sorry for your loss. It is the most cruellest illness I have ever encountered.

We are spending as much time with dad as possible x

[RW22]

Sending love. I have often thought how your dad and your family are doing from our previous chats x

[LuisRodicioRodicio]

Hi Stormtrooper4!

I'm sorry about your situation. Very hard and difficult moments.

By internal chat I send you the information I have-

Hug and courage.

Luis

[bichonbear1]

Thinking of you x

[Ratcliffe]

Hi there, I hate to see these posts, and it does sound as though it may be the later stages, although I don’t have any experience with CBD, only PSP.

Give all the love you can right now, regardless of their physical state, they are aware, and it makes a big difference.

Lots of hugs

Derek

[Kelmisty]

How are things? X

[bazooka111]

I am so sorry that you are in this phase of the disease. My sweet Momma passed away from CBD this past December. Swallowing became a very hard change for me — I just wanted her to keep eating. She did start holding food, and tried everything — puréed .. and that started to be a challenge —- until she just couldn’t swallow anymore — it just sat there. She ended up with thrush in her mouth, and that was just awful. Ice chips … kept pushing that until she was just not able anymore. She stopped swallowing on November 21st …

Sending massive hugs to you and your family. Keep talking, sharing the moments, stories, music, quiet moments were special to me … he can hear you. Hold his hand. Love on him. Blessings to you all - Kim