How much more can anyone take of this torturous journey through dementia?
I for one have developed a hard shell to protect myself from most issues; sadly the lack of response to crisis after crisis ( as described by social services & PCT on call ) is the tipping point.
Aged Mother is now aggressive, hallucinating, paranoid , delusional & wandering!
Blue light services are called regularly by the personal alarm company & neighbours; yet our requests for assessments to access the care plan discussed in 2019 falls on deaf ears- along with the neighbours complaints !
So i'm watching in slo- no an inevitable car crash happen . Safeguarding failed my Dad this time last year ....... he died in agony & now the system fails yet again another my Aged Mother.
Complex Care don't want to know neither do PCT ....... i have in writing yes honestly in good old black & white that i should access Mental Health !
Well let's put that into perspective - if i can't access mental health for an end of life dementia patient threatening the neighbours due to hallucinations etc then my high blood pressure & stress is going to be laughed at!
Social Services says it's a Mental Health Issue & Mental Health day it's a social care issue. But if i want to sell the house ( half of which i own !) then care can be provided!?!
No i am not selling ... as getting the correct Mental Health Care package in place is vital to ensuring Aged Mothers wellbeing.
So while those folks in accounts are balancing the books while others in Social Care & Mental Health are working from home & taking holidays ( who knew working P/T got you so much holiday??) I am still isolating & trying to get someone to
1- speak to me
2- return my calls
3- actually do their job
4- prevent another crisis / tragedy from happening
covid -19 has given theses elusive folks the opportunity & excuse to leave those struggling with dementia become victims of a broken system - CHC funding has taken on mythical proportions ( i expect to find the Holy Grail before any clear guidance on criteria)
Having seen the system fail my Dad so utterly less than a year ago i am now armed with the knowledge that the sad experience gave me.
So folks i am continuing to be loud & a total pain in the butt to those who are paid to carry out a duty of care & see best interests of those with dementia is upheld- in other words don't offer a care package in the home & then say oh you don't qualify because you own your own home ( or half a home in this case!)
If end of life care is to be graded with those with dementia getting the least possible - at least be open & honest about it & put it in writing please ; but that's the problem isn't it no one wants to put anything in writing anymore because that means you are answerable for your decisions.
It's when you do get a letter that all the heartache , stress etc is worth it..........you have something in black & white to work off!
So you lovely folks don't let the broken system wear you down too much- keep emailing , ringing etc because if enough of us do we will inspire change by not capitulating & just going away ...... well that's the hope that i cling to .
PS
Being bloody minded & fed up with being pushed from pillar to post helps a lot as does the forum - reading of everyone else struggles
?
I for one have developed a hard shell to protect myself from most issues; sadly the lack of response to crisis after crisis ( as described by social services & PCT on call ) is the tipping point.
Aged Mother is now aggressive, hallucinating, paranoid , delusional & wandering!
Blue light services are called regularly by the personal alarm company & neighbours; yet our requests for assessments to access the care plan discussed in 2019 falls on deaf ears- along with the neighbours complaints !
So i'm watching in slo- no an inevitable car crash happen . Safeguarding failed my Dad this time last year ....... he died in agony & now the system fails yet again another my Aged Mother.
Complex Care don't want to know neither do PCT ....... i have in writing yes honestly in good old black & white that i should access Mental Health !
Well let's put that into perspective - if i can't access mental health for an end of life dementia patient threatening the neighbours due to hallucinations etc then my high blood pressure & stress is going to be laughed at!
Social Services says it's a Mental Health Issue & Mental Health day it's a social care issue. But if i want to sell the house ( half of which i own !) then care can be provided!?!
No i am not selling ... as getting the correct Mental Health Care package in place is vital to ensuring Aged Mothers wellbeing.
So while those folks in accounts are balancing the books while others in Social Care & Mental Health are working from home & taking holidays ( who knew working P/T got you so much holiday??) I am still isolating & trying to get someone to
1- speak to me
2- return my calls
3- actually do their job
4- prevent another crisis / tragedy from happening
covid -19 has given theses elusive folks the opportunity & excuse to leave those struggling with dementia become victims of a broken system - CHC funding has taken on mythical proportions ( i expect to find the Holy Grail before any clear guidance on criteria)
Having seen the system fail my Dad so utterly less than a year ago i am now armed with the knowledge that the sad experience gave me.
So folks i am continuing to be loud & a total pain in the butt to those who are paid to carry out a duty of care & see best interests of those with dementia is upheld- in other words don't offer a care package in the home & then say oh you don't qualify because you own your own home ( or half a home in this case!)
If end of life care is to be graded with those with dementia getting the least possible - at least be open & honest about it & put it in writing please ; but that's the problem isn't it no one wants to put anything in writing anymore because that means you are answerable for your decisions.
It's when you do get a letter that all the heartache , stress etc is worth it..........you have something in black & white to work off!
So you lovely folks don't let the broken system wear you down too much- keep emailing , ringing etc because if enough of us do we will inspire change by not capitulating & just going away ...... well that's the hope that i cling to .
PS
Being bloody minded & fed up with being pushed from pillar to post helps a lot as does the forum - reading of everyone else struggles
?