Hi - this is a call out to find out if anyone has come across a good OVERVIEW DIAGRAM / DOCUMENTS (s) for a new carer - spelling out what is LIKELY, POSSIBLE AND PROBABLE if you are supporting a person with dementia until their death?
There is tons of info out there (factsheets / advisors / books etc) but I can’t find anything CLEAR and SIMPLE that spells out the possible / probable symptoms and behaviours a Carer may / will have to meet WHILE accompanying / supporting the person with dementia on their full journey through dementia to death.
It is hard enough being a carer without having to search out yet another factsheet or wade through all those books - (each giving little snippets of information) or wade through all the local info about organisations that no longer exist, don’t answer the phone or have massive waiting lists. The online profiles I found for carers are relentlessly positive and in my experience do not reflect what is for most of us reality.
I am sole carer for my mum who is 93, early stage and given that she has few health issues other than sensory impairments (sight & hearing) she will most probably die of Dementia (now the most common UK cause of death).
Knowing she will become incontinent (oh what a surprise there is a LA service that no one told me about) knowing she will most likely start sundowning, knowing she will become increasingly agitated and confused, that she will not remember to take her medication or overtake it, that at some point she will have to ACCEPT professional carers in her home or go into residential care (And I will have to battle over this / organise it) no one in the support agencies talked me through what is likely to be ahead for me as carer or provided succinct guidance on all those preparations I could make. (yes I do know that each person with dementia has a personal story / path and that SOME things (the inevitable crises and emergencies) cannot be planned for).
Personally it feels that advisors hold back from spelling out (verbally or in writing) what a carer is getting into and the likely journey ahead and prefer to guide on the day to day issues and to reassure (“sounds like you are doing a wonderful job”)…to avoid frightening us with the truth ? Or on the basis that once you go down the rabbit hole of caring you are stuck and in it to the end (death).
Sorry long post but so far no agency I approached seems to have addressed my need and I am finding it hugely time consuming and stressful having to find information / sort things out in the middle of yet another crisis - when with more information insight and planning it would have been much less stressful and enabled me to be more centred on the person I care for.
PS I am daily very moved and touched by all the amazing caring shared in this forum - so much fortitude and peer support - I just wish didn’t feel that we as carers are often having to find our way in the dark
Pete
There is tons of info out there (factsheets / advisors / books etc) but I can’t find anything CLEAR and SIMPLE that spells out the possible / probable symptoms and behaviours a Carer may / will have to meet WHILE accompanying / supporting the person with dementia on their full journey through dementia to death.
It is hard enough being a carer without having to search out yet another factsheet or wade through all those books - (each giving little snippets of information) or wade through all the local info about organisations that no longer exist, don’t answer the phone or have massive waiting lists. The online profiles I found for carers are relentlessly positive and in my experience do not reflect what is for most of us reality.
I am sole carer for my mum who is 93, early stage and given that she has few health issues other than sensory impairments (sight & hearing) she will most probably die of Dementia (now the most common UK cause of death).
Knowing she will become incontinent (oh what a surprise there is a LA service that no one told me about) knowing she will most likely start sundowning, knowing she will become increasingly agitated and confused, that she will not remember to take her medication or overtake it, that at some point she will have to ACCEPT professional carers in her home or go into residential care (And I will have to battle over this / organise it) no one in the support agencies talked me through what is likely to be ahead for me as carer or provided succinct guidance on all those preparations I could make. (yes I do know that each person with dementia has a personal story / path and that SOME things (the inevitable crises and emergencies) cannot be planned for).
Personally it feels that advisors hold back from spelling out (verbally or in writing) what a carer is getting into and the likely journey ahead and prefer to guide on the day to day issues and to reassure (“sounds like you are doing a wonderful job”)…to avoid frightening us with the truth ? Or on the basis that once you go down the rabbit hole of caring you are stuck and in it to the end (death).
Sorry long post but so far no agency I approached seems to have addressed my need and I am finding it hugely time consuming and stressful having to find information / sort things out in the middle of yet another crisis - when with more information insight and planning it would have been much less stressful and enabled me to be more centred on the person I care for.
PS I am daily very moved and touched by all the amazing caring shared in this forum - so much fortitude and peer support - I just wish didn’t feel that we as carers are often having to find our way in the dark
Pete