Are we coming to the end?

I'm hoping the hospice staff will be able to talk to him and get him to open up a bit, when we had a bad do a couple of years back our local hospice staff talked very openly on a one to one basis with J. I'm sure it helped him to be more open with me.

I would join you in a G&T tonight as we've had some bad news about my brother but decided to keep to the green tea on the bass that I'd never have just the one. Anyway drinking alone is never good, my OH doesn't drink these days.

We are all here to support you, I'm so glad you can post here, I think it must be so difficult if you can't vent somewhere. I keep my thread up to date, partly as a means of recording the passage of the disease for us, even if no one reads it, I'm recording things that matter to me.

Cheers Rosy

Xxx

Well today I feel like I've been run over by a steam roller.

D was quite poorly yesterday and we learned that his Hb was back down to 7.9 and his platelets are very low too. Today I couldn't get him up for his appointment at the hospice. He just sat on the edge of the bed falling asleep. I called the hospice and they sent the doctor to us instead - what a wonderful service.

He had a transfusion booked for tomorrow and so needed a cross match today at a hospital 45 minutes drive away. The doctor tried very tactfully to persuade him that he wasn't well enough to travel there and that perhaps his symptoms were related to disease progression. He wasn't hearing her and insisted he wanted the blood. He then fell asleep again. On her advice when he woke later I told him that if he wanted the blood we would have to go by ambulance to A&E. He fell asleep again.

He slept all day and then at 5pm insisted on coming downstairs which was very precarious! He then slept on the sofa all evening till my daughter and I struggled to get him back up to bed. I have never seen anyone so breathless - it was awful. Tomorrow I am ordering the bed for downstairs and he will have to stay upstairs until it arrives.

He has eaten nothing, not even an Ensure drink. He has barely spoken (he's been asleep) but when he has it has often been quite incoherent. The phone hasn't stopped ringing - the GP, the hospital, the pharmacist etc etc. Oh and someone who wanted to fix the extra bannister rail but I put him off as I think it's too late now.

We now have a DNR form signed and at hand and a pack of end of life drugs here. The doctor thought maybe a couple of weeks but I wonder if he'll make that long as he seems to have deteriorated so rapidly today. Although I knew it was happening it's still come as a real shock.

I am so grateful for all the kind thoughts - it helps so much

Rosy

There is something amazing about the human body. As the end draws near, the body knows it no longer needs to eat or drink and stops sending those messages to the brain. In response, the brain begins to produce a natural pain killer / relaxant. Sometimes there is a very bright phase, even when someone has slept for days and stopped communicating, they might become very aware and chat, see visitors, etc. but more of the time they sleep. Every time I have been in your situation I have noticed certain things - staring at something I can't see or at a fixed point, fingers constantly picking at the bedding or clothing, things like that. The most distressing thing is when the person suddenly seems desperately thirsty but refuses to drink - I remember sobbing over my mum because she was licking her lips all the time or opening her mouth like she really needed water but then closing her lips firmly as soon as I tried to lift a cup or sponge to her. The nurses reassured me that these behaviours are unconscious reflexes and the person isn't feeling thirst.

I don't know why I am telling you this, you are a nurse! Just to say, I suppose, that I remember every moment and I am thinking of you x

Sadly David passed away just before 4 am. He became increasingly breathless and distressed so we had to call an ambulance and he died shortly after arriving at the hospital.

We will miss him so much

Rosy

Oh Rosy , deepest deepest condolences to you and your family. You must feel you have been hit by a steam-roller. Sending love and strength.
Chris xx

Anna

Xxxxxxx

Ah Rosy, what a fighter he was and so are you.

I feel for you and your family and I am very sad for you all but now he is at rest.

No more pain and distress.

What else can I say but that I am thinking of you

Rosy. I too have followed your story . The ending is so sad. Sorry for your loss.
Georgina

I am so very sorry for your loss, my heartfelt condolences to you and your family.

Very few words can be said that can make your pain go away right now, but try to rest as much as you can and know that David is now at peace.

My thoughts are with you now every bit as much as before.

Big virtual hugs

XXXX

Mo