How much more ....

[DesperateofDevon]

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
?

 

[Starting on a journey]

I am so sorry you have been severely troubled with your dad and now your mum.
Nothing I can say to inspire or advise you, just wishing you strength and inner peace (I know the latter is fat chance)
Take care of yourself if you can and keep posting you are amongst friends on different stages of the same journey

 

[Buffalo]

Excellent summary of the situation.

I had a call with social services after a carer breakdown (father looking after mother) and spent an hour just being shunted into accepting we still have to do everything - despite me telling them they legally need to put care in place even if we are paying.

Of course they are still refusing to come out - so you get an assessment on the phone, which is useless.

 

[Sarah1208]

It certainly is torture. Today I just wanted one person to try and help me and no one had any answers. The social worker said it was a GP issue...the GP said it was a mental health issue as mums blood tests were normal, mental health team told me - wait for it- “ you need to realise your mother has a terminal illness and that’s why she’s getting worse, if she had terminal cancer you wouldn’t be ringing looking for answers you would be accepting it” She then blamed the care home for not meeting mums needs, care home manager suggests a review with social worker....oh look, right back where we started at 9am!! Mum has been in a care home for 10 weeks, is consistently losing weight, has had 4 falls, a UTI and cries most of the time asking for me. She could walk with a stick when she went in now they tell me she needs 2 carers to help her. When I visit she begs me to take her home and has become paranoid that everyone is staring at her and that men are going in her room at night.
Do I fight it or do I accept it’s her “terminal illness”?

 

[Bikerbeth]

After reading your battles last year with regards to your Dad it is saddening but unfortunately not unexpected that the same is happening with your Mother. Can’t offer any advice or help but sending you strength and hugs as you begin the fight again

 

[DesperateofDevon]

It certainly is torture. Today I just wanted one person to try and help me and no one had any answers. The social worker said it was a GP issue...the GP said it was a mental health issue as mums blood tests were normal, mental health team told me - wait for it- “ you need to realise your mother has a terminal illness and that’s why she’s getting worse, if she had terminal cancer you wouldn’t be ringing looking for answers you would be accepting it” She then blamed the care home for not meeting mums needs, care home manager suggests a review with social worker....oh look, right back where we started at 9am!! Mum has been in a care home for 10 weeks, is consistently losing weight, has had 4 falls, a UTI and cries most of the time asking for me. She could walk with a stick when she went in now they tell me she needs 2 carers to help her. When I visit she begs me to take her home and has become paranoid that everyone is staring at her and that men are going in her room at night.
Do I fight it or do I accept it’s her “terminal illness”?

no please don't accept it - if you aren't happy & you have LPA contact the office of guardians / Local MP
Honestly keep shouting loud & clear at some point someone will hear you
If the care home aren't up to scratch contact the CQC
?

 

[DesperateofDevon]

After reading your battles last year with regards to your Dad it is saddening but unfortunately not unexpected that the same is happening with your Mother. Can’t offer any advice or help but sending you strength and hugs as you begin the fight again

?At least i'm a little battle hardened this time ?

 

[DesperateofDevon]

Excellent summary of the situation.

I had a call with social services after a carer breakdown (father looking after mother) and spent an hour just being shunted into accepting we still have to do everything - despite me telling them they legally need to put care in place even if we are paying.

Of course they are still refusing to come out - so you get an assessment on the phone, which is useless.

Contact Safeguarding & put everything in emails - also over the phone assessment not acceptable !
Again email your local MP & raise your concerns
We can't let this continue ?

 

[DesperateofDevon]

I am so sorry you have been severely troubled with your dad and now your mum.
Nothing I can say to inspire or advise you, just wishing you strength and inner peace (I know the latter is fat chance)
Take care of yourself if you can and keep posting you are amongst friends on different stages of the same journey

Inner peace found in joining Gin Club - a box of loveliness arrives every month & chopping back a lot of shrubbery! ?

 

[canary]

Im sorry you are going through the same problems again. I suspect that your area is poorly resourced

No wise word, Im afraid. Just some
(((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))

PS - why do you not want to sell the house?

 

[DesperateofDevon]

Covid -19 has become an excuse for poor practice in Dementia Care for many - there are those excellent compassionate folks who seem to be shunted off when they make too much noise as an advocate. Leaving behind a new generation of folks mostly starting out on their career path ....... need i day anymore folks?

So as a LPA we are bound by duty to ensure proper care is in place ...... Well that then leaves us answerable to the Office of Public Guardians , but who is answerable for the decisions made affecting Care Packages & why are they so faceless?

The fractured system allows carers to be pushed from pillar to post continually. If Aged mother was a drug addict / cancer patient she would be fast tracked - there in lies the problem with a dementia diagnosis
The magic question
How long will they live
3months ? yes does the patient look as if they will live longer than 3 months .......

When did dementia & it's terminal diagnosis get this box to tick?
What bright spark without a glimmer of humanity came up with this?

Sadly we will never know ... meanwhile Covid - 19 has been allowed by those with a duty of care to allow carers & folks with dementia to be abandoned without the paltry help offered previously.

I will never know what it's like to be of BAME origin but i do know how it feels to be left out, discriminated against, your voice ignored, pushed out & marginalised by a society that forgets as time ticks by ..... THIS IS THEIR FUTURE AWAITING THEM

I have no desire to live like my Dad or grandparents did in nursing homes yelling out to unhearing ears - which seems to be the only option available to the truly desperate. So Aged Mother will remain in her home as long as possible & i will be damned by many for not taking the easy option & shoving her in a home! Yes that's a quote !!!

2014 saw policies & funding put in place as care in your own home was seen as a better option - after all care homes have space issues & now Covid -19 lockdowns.
Care in the home is available but how to access it ???

When i find that Holy Grail i will let you know ?

 

[DesperateofDevon]

Im sorry you are going through the same problems again. I suspect that your area is poorly resourced

No wise word, Im afraid. Just some
(((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))

PS - why do you not want to sell the house?

Because Mum was offered a care package at home & i want to access that first as a care home is the final option.
Plus i own half of it & am still sorting out that legal aspect
I could get a lot of work done & get Mum a better price which is needed for the psychiatric care she requires but firstly we need assessments done etc
Also i don't trust the system anymore after Dad
Our MP is leading an enquiry into the whole Safeguarding enquiry & why the situation was allowed to happen.

Aged Mothers aggression to change means psychiatric care sadly.

As for funding issues .... i know i shouldn't say it but that's not my problem. End of life care shouldn't look like this .... so very wrong

 

[Veritas]

It certainly is torture. Today I just wanted one person to try and help me and no one had any answers. The social worker said it was a GP issue...the GP said it was a mental health issue as mums blood tests were normal, mental health team told me - wait for it- “ you need to realise your mother has a terminal illness and that’s why she’s getting worse, if she had terminal cancer you wouldn’t be ringing looking for answers you would be accepting it” She then blamed the care home for not meeting mums needs, care home manager suggests a review with social worker....oh look, right back where we started at 9am!! Mum has been in a care home for 10 weeks, is consistently losing weight, has had 4 falls, a UTI and cries most of the time asking for me. She could walk with a stick when she went in now they tell me she needs 2 carers to help her. When I visit she begs me to take her home and has become paranoid that everyone is staring at her and that men are going in her room at night.
Do I fight it or do I accept it’s her “terminal illness”?

People with terminal cancer get help with symptom management, so why shouldn't your mother? She sounds distressed, and that requires a clinical response. I'd get back to the GP and say this. Although her general decline sounds fast it can happen like that, but her mental distress should be relievable and I'd make a complaint, myself, about how the mental health professional responded to you so insensitively. I don't think the social worker is best placed to help you unless it is proposed to move your mother to another care home.

 

[DesperateofDevon]

People with terminal cancer get help with symptom management, so why shouldn't your mother? She sounds distressed, and that requires a clinical response. I'd get back to the GP and say this. Although her general decline sounds fast it can happen like that, but her mental distress should be relievable and I'd make a complaint, myself, about how the mental health professional responded to you so insensitively. I don't think the social worker is best placed to help you unless it is proposed to move your mother to another care home.

Mum is in her own home - - I am phoning & ticking off the list as i go
?

 

[DesperateofDevon]

The care agency who document so brilliantly in the care plan have an assistant manager who has - let's say her own opinions !

Those opinions she shared with the Mental Health Team & Social Services ........ result was that her opinion means no assessment required ! Aargh! When asked why she said - i haven't seen these issues & unless i see them then i can't report on them!!

I can't write what i want to as it's not printable- but now two emails from the neighbours has been dismissed as the carer found Mum wiping down the windowsills!!!
This is a woman who won't get up, take her meds etc & hallucinations / aggressive behaviour is being dismissed because one person hasn't witnessed it ??

I'm furious ,,,,, really furious !

Honestly it would be easy to sell up & just stuff Mum in the cheapest care home that would take her ......... if there were any spaces?

According to the assistant manager care homes have spaces available - but Mums not at that place yet !

How can one person just negate evidence when the care plan states otherwise!
Please let Karma exist ..........

 

[canary]

Is this the SW saying that your mum is not yet ready for a care home?

Aged Mother is now aggressive, hallucinating, paranoid , delusional & wandering!
Blue light services are called regularly by the personal alarm company & neighbours .....,snip........along with the neighbours complaints !

This says to me that she definitely is!

 

[kindred]

Consider employing a private social worker. Warmest wishes, Kindred

 

[DesperateofDevon]

Consider employing a private social worker. Warmest wishes, Kindred

Have had an email from Adult Social Services who have raised Safeguarding after raising care issues several times & been told all is well......, not a path i wanted to go down but i haven't raised safeguarding this time SS has ... I'm sad that this is the only route but have been told Mums mental health needs an emergency assessment & co operation between the agencies & it's NHS funding that is already in place & has been since 2019!

Feel sorry for the Care Agency Owner who is lovely & been a great support but i'm not going through this again incidentally 12 months since the issues with Dad to the day almost !

Guess Karma gives you a chance to get things right in some way or another

Fingers crossed this time folks
?

 

[DesperateofDevon]

Is this the SW saying that your mum is not yet ready for a care home?

This says to me that she definitely is!

Well it does to me but if assessments aren't put into place then no one will know her needs .... also no nursing care places available ...... good old covid 19 can work i your favour
plus i need to try the home care package

 

[Veritas]

Mum is in her own home - - I am phoning & ticking off the list as i go
?

Sorry - I misread your post.
I am sorry you are having such a tough time of it.