Sorry this is a long one so grab a cuppa!!! My sis was diagnosed early December 2018 with stomach cancer.Was told that if surgery was her choice due to heart and kidney problems she would probably die on the operating table. So palliative care was started.I am starting this blog 3 months after the initial diagnosis.Sis has been so accepting of the cancer.Early on sis was getting pain relief from very bad arthritis due to the oxynorm pain relief that she said" I know I am dying but I have never felt so well".How things have spiralled downwards.She is suffering so badly with vomitting everything back.Only drinking sips of water and 2 TSP of soft semolina,porridge come straight back No medicine is helping and vomits every few minutes It is heartbreaking as I can do nothing.So here we are with me coming to stay for about 5 days every 8 days or so, and help care for my sis try and take a bit of pressure of her husband who is 84 walks badly and needs a cataract operation.Support from others is virtually non existent due to distance and their own health problems.5 days ago sis stumbled and had been in bed since as knee is swollen and now has gout in both big toes.Just how unbelievable is that!!!as if she is not suffering enough.Anyway I will cut to the quick.Her own doctor great ,emergency district nurse have been great at coming out and filling in forms etc((I call it covering their own backsides).Sis was catheterised three days after taking to bed as she really cannot move her leg without literally screaming with pain.I was due to come and stay so sis and husband did not tell me she had been in bed for three days.They did not want to bother me !!!!Honestly I was so mad at not been told they thought they were been kind to me.But obviously I said I would stay as long as needed.I have a wonderful supportive partner and son at home so that helps so much.The third day when I arrived was full of doctors district,nurses,community nurses and another group who I am sorry to say I never got to know who they really were!!!Before the catheter was put in sis had been peeing best she could manage in a pyrex bowl.With not eating much luckily she did not need to have a poo.But she would want one sometime so I asked all the visiting nurses and doctors for a bed pan,unbelievable reply they are not provided,also asked can a bed cage be provided to keep blankets of gouty feet and swollen knee,nope not provided!!A hospital bed was booked by them to be delivered day 4,so I asked can a pat slide be provided to slide sis from her own bed to hospital bed(no help offered by any of the services for transferring of sis to hospital bed,which is just erected by delivery men)Now I am 65 I cannot lift or pull with my arms,my partner cannot do either due to back probs,my son is away on business,sis hubby just too old and not strong enough.So called their son who has problems driving a busy road for 30 minutes after working all day!!! to come and help. He left work early,we found a cupboard door in garage to use as a temp sort of pat slide(to hell with health and safety eh!!!) and awaited the bed.It never arrived.Phoned the office it was shut at17.05. By then we had created havoc emptying bedroom as much as we could to make room for the hospital bed.Total bloody mess and mayhem,draws items of clothing,bedside cabinets,table moved wherever we could find a space,you get the picture????And no one called to help wash sis so I did my best for 3 days.Orderd a bed pan and cradle which arrived today (forgot to say I made a temp cradle from a bigcardboard box)doctor called it a rabbit hutch!! but it served the purpose.By now I am so tired out,caring for a totally bedbound sis who can not move herself more than an inch or so, with no help has-been exhausting and I feel shattered.This afternoon we got rescue,tomorrow sis is going into hospice for respite care,so very very thankful.I feel that care for my sis was shocking.If I had not been there,sis would have laid in bed with minimum hygine care.Her elderly husband left totally alone to do best he could.I am disgusted at the total lack of concern and care.I did ask what was my sis supposed to do if she did want a poo,answer was shit on pads and clean it up.Problem,no pads provided.Would try and arrange something following day.nothing materilised.Animals get more care shown.So this is how care in the community has sunk to, no bedpans no bedcradles,no help to transfer to a hospital bed,told to shit on non existent pads,no hygine wash help.No instructions on catheter care (good job I was many years working as H.C.A so know importance of infection risks.)So if you are reading this don't be surprised at the fact when you really really need help,you are prepared for nothing.My tip make certain you have your own bed pan and pads/incontinence sheets.Another tip save empty plastic milk bottles to empty catheter bags into.Final tip,wish that you never get ill and need help in your home.What really really has hurst is my sis who now feels quite ill could see how we were having to manage.She was in tears at causing us so much trouble.It was no trouble I love my sis.I feel rotten as I got angry with sis as I was trying to pack items for hospice stay,one to take and another for her hubby to take when 1st case used,just so difficult to locate items.How could I be angry with my lovely sis who is suffering in pain and dying.,I am now crying just feel utter contempt at my anger.Never ever thought I would show anger at this stage of my sister's dying weeks.Yea I suppose it is just an accumulation of weeks of travelling back and forth etc giving me exhaustion but to be angry and show it I hate myself.
