Hi. My dad has mid-stage (I think!) dementia, emphysema and terminal cancer of the oesophagus. I have moved in with him since the virus pandemic, but am seriously finding it hard to cope. I feel that because he has both cancer and dementia he is not getting help with either. I told his GP he needs more specialist care and she referred me to the OT who brought round a raised toilet seat and inflatable cushion! She prescribed morphine, which made his dementia worse, and referred me to the Macmillan nurses who won't visit and basically can't help until dad's needing end of life care. I don't know if he'll qualify for CHC but he won't be assessed during the crisis anyway. Is anyone else experiencing this and, if so, have you found a way through. I don't know how much longer I can cope on my own.
Slipping through the net
- Thread starter leafylaine
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Hello @leafylaine
I hope there might be something here which will help you.
forum.alzheimers.org.uk
I hope there might be something here which will help you.
Expert Q&A: Dealing with dementia and cancer – Thursday 30th May, 3-4pm
Supporting and caring for a loved one with the complex combination of dementia and cancer can be extremely challenging. We are pleased to be having our second expert Q&A on dementia and cancer, hosted by Lorraine Burgess, a Macmillan Dementia Nurse Consultant at the Christie Hospital in...
forum.alzheimers.org.uk
Hello @leafylaine. That sounds a lot for you to deal with on your own. I cared for both parents for a while but it was Dad who had the terminal cancer and mum the dementia, so not quite the same. The current problem with Corona virus obviously makes things harder for you. Is your Dad still mobile and can he enjoy things with you, like sitting in the garden, watching tv? I am wondering if there is any support or advice you could get from calling Ageuk. They may have come across similar situations. Might be worth calling them if you haven't already.
Hi @leafylaine I cared for dad at home and moved in with him for the last year with help from my brother and my husband. Dad had advanced oesophageal cancer and probably mid stage alzheimer's. It was very hard from the time he was diagnosed with the cancer almost 2 years ago now especially because he would forget immediately that he was ill.
The hospice arranged everything for dads final couple of weeks when he started to deteriorate. They arranged a hospital bed at home and 2 carers visits a day also dad was granted CHC but only for his last couple of weeks when it was clear that he was declining fast.
He died at home peacefully in February with my brother and myself with him. I knew that he was dying but it was still a huge shock.
Dad lasted far longer than I thought he would. Almost 2 years from diagnosis and most of it was as good as it could be but the last few weeks were hard.
For the last couple of weeks I had my husband with me almost all of the time and I could not have coped without him. Dad probably weighed abou 8 stone in the end but he was a dead weight and it took both of us to lift him on to the commode. It was hard.
If you want to ask me more send me a private message and I will tell it as it was.
Sorry you are in this situation at this time and I can only wish you lots of strength and some really big hugs
The hospice arranged everything for dads final couple of weeks when he started to deteriorate. They arranged a hospital bed at home and 2 carers visits a day also dad was granted CHC but only for his last couple of weeks when it was clear that he was declining fast.
He died at home peacefully in February with my brother and myself with him. I knew that he was dying but it was still a huge shock.
Dad lasted far longer than I thought he would. Almost 2 years from diagnosis and most of it was as good as it could be but the last few weeks were hard.
For the last couple of weeks I had my husband with me almost all of the time and I could not have coped without him. Dad probably weighed abou 8 stone in the end but he was a dead weight and it took both of us to lift him on to the commode. It was hard.
If you want to ask me more send me a private message and I will tell it as it was.
Sorry you are in this situation at this time and I can only wish you lots of strength and some really big hugs
Thank you very much for your response and supportive message - it sounds as though you had a very similar situation with your dad, albeit without the coronavirus pandemic! It would be great to message privately, as I don't have a clue how the cancer is going to play out. Do we message via email? Best wishes, Elaine
Thanks granny G - some of that was very helpful.Hello @leafylaine
I hope there might be something here which will help you.
Expert Q&A: Dealing with dementia and cancer – Thursday 30th May, 3-4pm
Supporting and caring for a loved one with the complex combination of dementia and cancer can be extremely challenging. We are pleased to be having our second expert Q&A on dementia and cancer, hosted by Lorraine Burgess, a Macmillan Dementia Nurse Consultant at the Christie Hospital in...
@leafylaine I will message you and you will see a little red thingy on the envelope in the top right hand of your screen. Just click on that and you will see the message and how to reply.
