Hello I'm new

My mother in law has Parkinson's Plus, she was diagnosed about 18-24 months ago and has gone from 2 carers a day, to 4 and was admitted to hospital 2 weeks ago with a bedsore, water infection and swallowing difficulties. The Doctor says it's stage 1 (of the end) and she's on an end-of-life ward. I'd welcome any information or advice. She can't do anything for herself and sleeps most of the time. My husband is in bits but we live 200 miles away so we're limited in what we can do. We're sort of in limbo waiting for the inevitable. It's awful to see someone go from being vibrant and full of life to this in 2 years. I feel quite useless. 


  I do not envy  you for the predicament is agonising sick with worry I know  this  as  my Father and Mother  left us in similar circumstances  but we were only 4 to 5  miles away dad died a long  agonising death with lungs  choked with  black   muck a ex  miner  I could  not help  him  and  he  eventually slept away, a blessing, my  Mother  had  a stroke and lay on the floor all night  until my  wife discovered  her  at  10am  , it  would normally be me that went  but parky had me  beat and my wife had to organise para medics Ambulance   poor  Mam  only lasted  a week and  all  she   said to  me  was " not  good  son not good",I know you will  be  plagued  by  guilt,  but  you  must  live  your  lives   as normal  as  possible  your  Mum in Law  would  be  hurt  if  she  knew  that  you  were  going  through hell  she loves  you  and   you  her  and  that  bond  will  never  be  broken  until  you  meet  again  ,  the  Doctor  has  informed  you  of  her   soon  to  be  passing and  as  she  is  sleeping  all  day I  would  say  its  probably  sooner  than  you  think, but if  you  are at  home  when  of the  sad  day  arrives  dont  jump  in  your  car  and  rocket  up  to  see  her , she  will be  in  a  chapel  of  rest  where  you  can  see  her  at  peace  but speeding  will  only  put  your lives   at  risk

and remember  your  lives  must  go  on, kindest regards in  your  sadness   FED4

Hi Bridgwit, 

Really sorry to hear of the difficulties you are facing, it must be really hard for you and your husband. On a personal level, I remember a similar situation with me and my partner so I can understand where you're coming from. Do you have good communication with the people in charge of her care? That's so important. 

We do have a section on our website that talks about end of life planning and care, have you read it? https://www.parkinsons.org.uk/information-and-support/preparing-end-life

You might find the guide useful. 

Take care.