Hi, my 84 year old dad is about 5 years down the line of vascular dementia. He has deteriorated through several stages of this horrid disease over the last twelve months and is continuing the downward spiral. This is now compounded by the fact that he has been diagnosed with myeloma (a bone marrow/blood cancer) and has the associated osteoporosis causing him great pain, anaemia making him tired and listless and other associated symptoms. In order to confirm the severity of this he needs a bone marrow biopsy which mom feels is too invasive and painful. I understand that treatment is likely to then be chemotherapy followed by more bone marrow biopsies. I am fully in agreement with mom that we should not pursue this further. We have been advised that he needs nursing care as his needs have increased beyond what mom is able to offer in terms of physically supporting him and dealing with his non-compliant behaviour. He is also starting to get more agitated and aggressive, probably due to feeling so unwell. I wonder if anyone out there has been through a similar situation and 1) what treatment was given, other than basic pain relief, if any at all, 2) if a palliative care expert was involved and 3) if CHC funding was secured for nursing care. We are meeting with our Social Worker soon to discuss long term residential care when I think we will also be discussing palliative/future end of life care as I guess what we are really doing is letting nature take it's course. Thanks for reading and especially for any replies.
Dementia and myloma
- Thread starter Lovetosing
- Start date
Hello, what you are describing is so sad, but I agree that I would not be seeking any active intervention. My sister died at 39 of AML. She withstood multiple Chemos and a bone marrow transplant but her Leukaemia was too virulent. She had several very serious septic events, one of which was only responsive to drugs when she was given untested cocktails as a kill or cure measure. My Mum now has melanomas all over her body as secondary cancers to an eye cancer. I will not permit anything more than palliative care, she is too frail to fight it.
I am sure that your GP and Oncologist will support you in witholding active treatment for Dad if it is not in his best interests.
Good luck with the CHC claim...Mum has failed her application, because she "does not need nursing care".
Night.x.x.
I am sure that your GP and Oncologist will support you in witholding active treatment for Dad if it is not in his best interests.
Good luck with the CHC claim...Mum has failed her application, because she "does not need nursing care".
Night.x.x.
Thanks Cragmaid. I am so sad to hear of the early death of your sister and that you have had to deal with another cancer journey with your mom. It's very hard to see those we love deteriorate and suffer.
I have spoken to dad's Alzheimers advisor, GP and a representative from Myeloma UK all of whom made me feel better about our decision and I have a better insight into what to expect in future. We have started looking at residential care homes for him on a permanent basis and have been advised to get a palliative care expert involved. As we have been advised he does not need a nursing home, hopefully not even for end of life care, good residential care staff should be able to manage his conditions, I don't think I will pursue the CHC claim, especially as I have been advised by all of the professionals I have spoken to, that success rate in our area, like so many others, is extremely limited.
Best wishes in dealing with your mom's situation.
