Hi, I just need to have a good vent and make a plea to campaign for more easy to access support for carers. No form filling or means testing.
My husband has metastatic prostate cancer with spinal cord compression. He is having physio to see if he can stand and maybe even walk again. He is extremely demanding of me and wants me with him 24/7. His palliative physio referred him for in patient physio. The hospital have just closed one of their two palliative physio wards and staff are coming out into the community to work with patients in their own homes.
no doubt patient pressure groups would say this is a good idea as would the government who save on the costs of hospital stays. The loser is the family/carer who has to adjust life to accommodate the home physio visits, get the patient ready, dressed, meals, etc around visits.
i love and adore my husband but he has become even more selfish than he was before all this happened. I am exhausted most of the time….up until gone midnight and have to get up in the morning to let carers in to help with the washing, toileting and dressing. Then I get breakfast, give meds, etc., then the various medical people arrive. Then lunch, more meds and so it goes on. I pay for carers to help me and do everything in the house. My husband doesn’t even take a cup out to the kitchen.
My point is community care is a good thing for patients and I would certainly want to stay home if I were ever in such a position of having cancer, but there needs to be more understanding of the need to support family and primary caregivers who do it all 24/7 for free. I don’t want to spend time filling in forms to apply for stuff. I really don’t have the energy or the time. Someone to ask me if it is okay to use my home like a hospital room and a storage facility for all the equipment would be nice. Someone to ask if the times they want to visit my home are okay would be nice too. To say if they need me to be included in the session or not would be good….just to be seen and heard but be good.
Hi Teatowel
One of the positive things I feel about a number of the charities is how they recognize the needs of carers and of course there is even recognition from government with the introduction of the Carers Act in 2014 and of course alongside the provision of a care needs assessment we can also get a carers assessment, Of course there is a certain degree of practicality amoung this in that what we give for free would cost a fortune.
<<hugs>>
Steve
