Heartbroken..

[daddysgirl1916]

My dad has CBD, at the start we were told it was a stroke...i always knew it was something more die to the symptoms.

We havent actually said to him he has CBD, but last night he said to my mum..."i know i am dying, and i haven't got long" he said he wasn't afraid. My hero.

He says he can feel it in his head....has anyone else experienced this?

He has been falling over more and more, constipation, heavy eyes and coughing alot even when he has a drink as if something is stuck in his throat.

My heart is breaking and he makes me so proud because he just still worries about everyone else, still smiles...still the amazing man he always was.

can anyone give me information about final stages, i'm silently praying that he won't have to suffer and something else will get to him before the CBD does. although it hurts my heart to say that.

Any advice would be great so i can make him as comfortable as possible

Rita

xxx

[Yvonneandgeorge]

Rita, sorry to hear that, really sad, my husband is also doing all the things your dad is doing, he keeps saying he is going to die soon. It is horrible when they cough, my heart goes out to him, the other day something went down the wrong way, it was horrible, happens to George loads of times a day. Sending you a big hug xxxxxx

[daddysgirl1916 in reply to Yvonneandgeorge]

Hi Yvonne, Thank you so much for replying

And i am also sorry to hear about your husband, what a horrific disease it is. i wish i could take it all away.

I am trying to stay strong for him but i just keep breaking down. it's so unfair.

i just dont want him to suffer

Big hugs to you too, and i send all the best wishes to you both

xxxxxx

[Arow85 in reply to daddysgirl1916]

Hi,

My dad had cbd and passed away peacefully in his sleep just over two weeks ago. He had the same symptoms as your dad, but the last 3 months my dad had to go into a nursing home as lost a lot of weight, due to eating and drinking difficulties. He was just about to have a feeding tube fitted but he passed in his sleep which was unexpected so soon but a comfort for us as a family as we knew his condition could have got worse. Stay strong for him xx

[daddysgirl1916 in reply to Arow85]

My heart goes out to you, i'm sorry for your loss.

That is all i pray for, for him not to suffer...if i could i would trade places in an instant.

This has brought some comfort and reassurance to me.

Thank you

xxxxxx

[Spiralsparkle]

Oh gosh your dad sounds an amazing person indeed.

My Mum has CBD but we are not at the final stages so I can't give advice on that I'm sorry. Mum said last year to me she could feel a piece of her going each day and she also worries about other people still. She knows of her diagnosis but we haven't gone into great detail about what lies ahead. Like you say it is heartbreaking to watch them deteriorate and want the suffering to end but not for them to leave either.

Big hugs

Xxx

[daddysgirl1916 in reply to Spiralsparkle]

Hi, thanks for your message..he really is the most amazing person in the world. As i said before if i could trade places with him i would do it in a flash.

sorry to hear about your mum..it really is soul destroying.

my love and prayers go out to you..

xxxxxxx

[pzagy]

hi daddysgirl1916

I am sorry to hear about your dad, he does sound like a hero.

How long ago was your hero diagnosed? Is he still quite mobile? Can you understand him when he speaks?

We stared out with those symtoms a year ago, them my mother in law fell at home and required surgery to fix 2 plates in her ankle and it went down hill from there. She is in a wheelchair now and dependant on carers and us for everything. She coughs when she eats and drinks so we have had to adjust her diet and any liquid is mixed with thickners.

Constipation??? Well at this stage she cries when she has to go as if she is afraid of going but her bowel movements are not hard, I think she isn't understanding what her body is doing.

You see, there are a million stages to CBD, with a million questions. I wish I had the answer as I ask myself that very same question every day.

Sending much love to you and your hero

[daddysgirl1916 in reply to pzagy]

Hi pzagy,

He symptoms first started 4 years ago.

Alien limb at the start, spasticity, and jerking (apparently a stroke said the doctors)

after fighting with them for 4 years he was finally diagnosed 6 months ago.

His mobilty is limited. i take him to town on a scooter(he still insists on being independant)

but me and my mother assist with getting him up from chairs/out of bed...washing and getting dressed.

His mind is perfect, he is well aware of everything and even when he does things impulsively, for example i will say "dad sit down or slow down"he will run off. but he will then tell me he knows what i'm saying to him but his head is telling him to do otherwise.

His speech as i said has been poor from the get go, he does his best to communicate and i am quite good at understanding him. It is very quiet though and he will say yes instead of no and vice versa.

He goes into town on his scooter when i take him in and will go round the homeless giving them money, he melts my heart. everything he is going through. i am very proud.

i am just so scared of him suffering.

Thanks for you message

xxxx

[pzagy in reply to daddysgirl1916]

You should be very proud and it sounds like your dad is one in a million...is boggles my mind that only the good suffer a question I have had for many many years. I think it is because they teach us about compassion and love that way.

In comparison, my mother in law is much like your dad but has extreme anxiety that ravages her daily, hourly and every second her is awake. Aside from the mobility, smallowing and inability to talk that is the primary concern for us now.

By the sounds of it your dad will not let you know if he is suffering, just be the daughter you have always been to him, he taught you well.

lots of love

Paola

[Rologirl79]

Hi As my Sister said above ARow85 our dad passed 3 weeks ago. Like your dad he was such an amazing guy. Me and my sister are the youngest of 7 so we delt with the hospital trips, washing, feeding, cleaning etc we seen dad go from a strong independent man who never liked a fuss to becoming 6 stone very ill man who was unable to even pick his cup up to drink his favourite hot chocolate.

We literally had to do everything. The really sad thing about this illness is that our dad he was fully there he knew everything that was happening to him so is mind never gave up he was just living in a broken body.

Our dad sounds so much like yours he was a fighter till the end.

Our dad use to go out on his scooter and was still able to communicate by squeezing our hand , managed soft foods, still went on family brakes away this was all up n till around 6 months ago then he deteriated very quickly

I don't think anyone knows what the final stages are as everyone is different but what I will say is make the most with your dad now make as many special memories as you can.

Though I know my dads at peace from this nasty horrible illness it will never take away how much I and my family miss him.

I personally feel my life will now never be the same as dad was our best friend as well as our amazing dad to all of us.

Cherish this time why he's still here xxxxx

[daddysgirl1916]

i know one thing, i intend on raising lots of money and awareness about this disease. Research needs to be done

Doctors don't even know about it, let alone the rest of the population.

xxxxxxxxxx

[2660Carol]

Your right the doctors don't know much about this they say its the luck of the draw im still learning about it and my Ben has passed away 10 months ago Im still looking for answers to all of this Carol2660