View Full Version : needing advice on plans for my father to go home in final stages of bulbar palsy.

29th January 2015, 21:55
HI (me again) My father is currently on a rehab ward to try and safe for return to home. However progress is not happening and he is sadly in final stages of disease. He was admitted in Jan with pneumonia but this has left him unable to walk without support, low blood pressure and unable to tolerate the amount of feed required to prevent further speedy weight loss. His bmi is approx 17.5. I was called down earlier in week to have my final conversation with my dad as they said he is detoriating/weakening and maximum 1 to 2 weeks left. I live 5 hours away and once got there saw another dr who would not give a time line but confirmed final stages and just focussed on wanting to know his final wishes. The OT then was on about a home visit to see if could go home so very mixed messages as they have said he needs ideally 24 hour care as he is so vunerable and unable to communicate too so home would be very isolating as he lives alone. Today he is still refusing to have the bed downstairs so they are talking about putting a hospital bed upstairs with commode and he remains upstairs fulltime as he is unable to cope with the stairs and they have said he will continue to weaken and low blood pressure risk of falls. In hospital he unable to have showers sometimes because blood pressure is too low. Very mixed messages and I am not convinced that home is the best place taking the whole picture. He would only have 4 care visits a day and the rest of the time would be alone. My father is very adamant that he wants to go home and yes I agree he should be listened to but he is at full risk of serious harm if he left and medical team are not being realistic or honest with him. They say he meets criteria for full nhs continuing care package providing 24 hour care. Please advise as I am so frustrated, confused and just want my dad to have dignity.

29th January 2015, 22:40
Hi my friend Jean was given continuing care in the final stages before Christmas. They arranged for her to have a live in carer so she had 24 hour care but we had to give the carer time off during the day for a break.

They also couldn't give any indication of a time line other than it wouldn't be months. Jean was given morphine through a syringe driver and this was overseen by district nurses who visited every day.

Jean was kept very comfortable and almost pain free. She was also given medication to help keep her calm and steady her breathing. As hard as it was it was very peaceful and dignified.

My heart goes out to you xx

Alison x

29th January 2015, 22:58
Hi Hopeful;

Things are not looking to good. I don't know whether dad would consider going to a hospice. They are normally as experienced as you get with Mnd and will make him comfortable by administering drugs etc that the hospital may not use.

It must be hard living so far away. To sort continuing care for twoish weeks is quite a tall order.

Best wishes, Terry

30th January 2015, 00:05
Jean was in the hospice when they sorted out continuing care etc. it took about a week to get funding and a week sorting out all the care. They wouldn't let her stay as she had been there 3 weeks and said they didn't do residential and as mnd was not predictable.

Maybe transferring to hospice for them to make arrangements would be better. They seem more geared to sorting out end of life care than hospitals.

Alison x

1st February 2015, 06:28
At tough one there Hopeful - and you have my sympathies.

Alison and Terry have combined to give good advice.

Dying alone can't be ideal for most of us. Reading your about your father made me tell the wife just now that I am lucky to have her.

All the best Jock.

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