please can anyone help me ..hes dying

[debby13]

My father has been in hospital for 2 months he has dementia, during the last month he has contracted C Diff and now has pneumonia. He is very ill and has not eaten in over 2 weeks as he can no longer swallow. We were told on Thursday that he was v weak and that really there was nothing more they could do for him other than palliative care. In a weird way it was a relief as we have all been battling so long and to no gain but we were v distressed at the thought of him dying in hospital. The consultant felt he was too ill to be moved and that probably only had hours or a few days to live. That was 4 days ago and Dad is more lucid now than he has been in a long time, he is motionless mostly but looks at you and seems to know what is happening. It is so hard as there just seems nothing we can do but how long can this go on for it is just torture seeing him so frail and ill. I have tried to get support and it seems that we may be able to get something through the hospital if they get macmillan involved but trying to get hold of someone ....oh it is a nightmare and my brain is just not working properly. Please can anyone help ...has anyone been in a similar situation or go any terminal care.

xxx

 

[Grannie G]

Dear Debby

It is so hard for you I know, but what would you like to happen? Would it be fair to move your father now, in his dreadfully weakened state? Would you want him home, or would you want him in a Hospice?

The consultant obviously has anxieties about moving him and even though your father seems to have rallied a little, I fear it would be undone by a move.

I can understand how helpless you feel, I have never been in your position, so I can`t give you any help through experience, but I wouldn`t want to move him just yet. I`d want to leave him in peace.

Please take care.

Love xx

 

[Skye]

Dear Debby

I know how distressing this is for you. You don't want your father to die, and yet you can't bear to see him in this condition.

Are you happy with the way he is being treated in hospital? If so, I agree with Sylvia, it would be unfair to him to try to move him.

You could try ringing your local branch of Princess Royal Trust. I know our branch has someone who supports people when their loved one is in hospital, but I don't know if this is general. Even if they don't, they're always ready to talk.

If you have any doubts about your father's treatment, you should contact PALS, the hospital's liaison service. There should be a notice about how to contact them in receptio,, or you could ask the nurses.

There isn't really anything you can do for your father now apart from making sure he is comfortable, and letting him know he is loved. You and your mother are the ones who need support now, so please try to get some.

And post here whenever you want to. I'll be thinking of you.

Love,

 

[fearful fiona]

Dear Debby,

I am so sorry for you and do know how you feel as this happened with my uncle a couple of months ago. Nobody wants to die in hospital, nor do relatives want that to happen, but we too were advised that my uncle was too weak to be moved and we had to admit that he was very well looked after until the end.

Other replies have made some practical suggestions, but as Hazel has said, let him know as best you can how much you love him. We did this with my uncle, we hope he felt it.

My thoughts are with you. Let us know how things go.

Much love

 

[Mary11]

Dear Debby,

Are they still treating your dad for c-diff? As I have said before some patients with c-diff will not eat or drink. It can be an absolute nightmare to try to encourage patients without dementia to eat or drink when suffering from c-diff..I can't even imagine what it must be like for you. If you're dad is not taking his meds by mouth are they giving him Metronidazole intravenously for the c-diff? They can't give him Vancomycin intravenously for c-diff this has to be taken orally to be effective with c-diff as it dosen't cross from the blood into the gut.

Make sure they are not giving your dad any anti-diarrhoeal agents such as Loperamide, Imodium, Codeine as these are a 'no no' with c-diff. They slow down the removal of toxins from the gut and can adversely affect recovery.

If you're dad is dehydrated is may make his dementia seem worse. Are they checking his fluid and electrolyte levels??

If you're dad still has c-diff and they are not treating him for it then there are lots of things that can happen. C-diff toxins damage the gut wall causing problems such as pseudomembranous colitis (thickening of the bowel wall can be detected with a scan), toxic megacolon and bowel perforation leading to sepsis.

I wish you luck and hope that whatever happens you all find some peace.

Mary

 

[christine_batch]

Dear Debby,
I agree with previous messages. When it comes to that stage we only want what is best for our loved ones. There is no easy solution, other than letting our loved ones know that we are there and love them. I wish you all the very best. Christine

 

[clymout]

Dear Debby,

So sorry to see that you and your dad are suffering so. This sounds so like my own gran twenty years ago. She wasn't expected to last the weekend but rallied and ended up being moved into a nursing home, and after six months, she finally slipped away quietly in her sleep one night. I've learned to always expect the unexpected with this disease.

I'm going through the dementia journey with my mum now and I do know that in twenty years the amount of help and advice on offer has increased ten fold. You shouldn't be making all the decisions alone. Demand help from social services, does your dad have a care manager/CPN? I know services can be stretched, but in your present situation, the professionals should be supporting you properly. I do wish you all the best and will be thinking of you.


Jo