This is my first post here. I am hoping to get an idea of some other people’s experience of the level of healthcare assistance that has been provided to their loved ones in the latter stages of MS.
My mum is now 59 and was diagnosed around 20 years ago, she is now completely bed ridden only leaving the bed via hoist for showers and the occasional trip out with my dad in her mobility vehicle. She has a care package provided by a local home care company and is visited 3 times a day. This package works well for my mum and the carers cannot be faulted for their care and dedication. Where I think my mum’s care is lacking is in the provision of assessments of the disease and what medications she is taking and the effects (good or bad) of those medications. My father is my mum’s primary carer and I really do feel that he has been left to fend for himself somewhat in this regard. He is the one who has to request changes to drugs and possible other solutions, he does not seem to get much help to do this and it seems a constant fight to push for what may be needed.
Is this normal? Do other carers have experience of having to constantly push to have their loved ones assessed? Is it the case that as my mother is now deemed at the end of life stage, that health professionals will simply look to maintain a level of comfort rather than assess for possible complications. My mother’s swallowing is deteriorating quite rapidly now, when does someone asses for that? It just seems that the whole approach is very reactionary with little planning for what is to come. Is this a resource issue or just ‘the way it is’?
Thank you very much for reading and I would be grateful for any replies or guidance on this.