Mscc aftercare

User

Posted 13 Feb 2018 at 19:34

Hoping someone can help! My dad is bedridden after mscc which we’ve been told is untreatable,and is in almost constant pain,nobody seems to know the best position for him to be in,or the prognosis. If there’s anyone with some experience of caring for someone I’d really appreciate some advice.

Kind regards Viv

Look for something positive in each day even if some days you have to look a little harder

User

Posted 13 Feb 2018 at 19:47

Good Lord! Has he been referred to the local hospice team or Macmillan nurses? They usually sort it out. What aboug physiotherapy and occupational therapy? District nurses?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 13 Feb 2018 at 20:02

Hi Lyn,Macmillan are involved but not always quick enough to visit,I think physio is due for a visit but the last time we saw them they said it would be bedcare as he can’t stand and every movement hurts. They don’t want the hospice involved which is hard

Viv x

User

Posted 19 Aug 2018 at 03:10

Hello unlucky tell me one thing before diagnosed he was suffering from pain actually my father was diagnosed with mscc he was having lot of pain in spine after radiation pain reduced and then started chemotherapy after 3 sessions there is lot of relief in pain now he is done with sixth chemo waiting for pet scan and MRI .

User

Posted 20 Aug 2018 at 16:43

Hi Viv I was so sorry to read your post. Do you mean your parents do not want the Hospice involved? Only I have heard such amazing things from other people who have had Hospice involvment and how they really are expert at managing care and pain. Thinking of you and totally understand how hard this is - I am in a similar situation x

Notification

Join the online community now.