Mum with CBD

[Bobbiejo21]

Good morning It's been a while since I wrote on here. My mum got diagnosed with CBD in 2017 we were told in January 2020 she had 4 weeks left to live and was moved into a care home for palliative care. Thankfully she is still with us. Hasn't eaten and been bed bound now for 4 years. She survives on 6-7 ensures a day. She can only move one arm now, doesn't understand what I'm saying to her. I can't have a conversation with her and I'm not even sure if she can see me anymore. It's so heartbreaking.

[Javan]

Just keep talking and showing love, it gets through and you can get reactions. They may be small but they are there. We had been told not long many times but the old bag was determined to prove the professional idiots wrong, never give up.

[Bobbiejo21 in reply to Javan]

Its such a hard thing to cope with sometimes. I always talk to her like she can understand just incase xx

[ChocolateFaceTeddy]

I feel so sorry for you I have CBD I’m just getting tremors in my right arm I’m well other than that xx

[Bobbiejo21 in reply to ChocolateFaceTeddy]

I'm sorry to hear you have it. I hope your getting help and have support xx

[45purple]

Just be there she will know. So very hard sending hugs 🤗🤗💜

[Bobbiejo21 in reply to 45purple]

Thank you 😊 xx

[TimGill12]

My wife was diagnosed with CBD in 2017. On the 12th April I was told she wouldn't survive the day, she's still with me. Low heart rate and blood pressure. Soup and juice is all she can take now. Fortunately I've been able to keep her home with the help of carers. Heartbreaking to see how this awful condition is progressing.

[Bobbiejo21 in reply to TimGill12]

I'm sorry to hear about your wife. I'm glad to hear she is still at home with you. It is such an awful disease. I'm glad you have carers helping you. I was my mums carer for 3 years until she needed 24 hour care. Was awful making the decision to have her move into a care home xx

[ChocolateFaceTeddy]

Heartbreaking for you but you’re amongst friends x

[Richard33]

Bobbiejo,

Ruth has a RESPECT form in place that she completed with the Hospice doctor. She has stipulated that if she is bed bound and non-communicative for a period of time, we are to withdraw from feeding her via the PEG. The hospice says that this is ethical; they will keep hydrated and in no discomfort, but it will lead to her death in a short period. We all think it is the right decision as she does not want to be kept alive if she has no quality of life.

I am so sorry for what you are going through.

Richard

[Bobbiejo21 in reply to Richard33]

I'm sorry to hear you and your wife are going through this too. My mum can still talk but it's mainly just stuttering and and random words. I completely understand that. Its such a horrible disease