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How much more ....

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Curiouser & curiouser - as they say
Aged Mothers GP doesn't believe Dementia with Lewy Bodies could be the reason to her behaviour issues & wont refer us back to get that assessment.
In the world of tick boxes - Aged Mothers past medical history & the diagnosis of Parkinsonism back in 2014 means we have hit the jackpot ! On top of that diagnosis again in 2018 DLB was discussed by Mental Health Nurse & to get referral if more issues arose.........

So yet again we are self referring as we had to do in 2018!!!! The history doesn't bode well - if you can't have the support of the GP it's just so much harder ....

But the GP tells me that night sitting services have been discussed & was believed to be in place soon?????

News to us.... especially after Care manager said no further care was required & the letter stated the same from PCT???

Fast forward to the next day ......

Receive phone call from Funding authority asking for payment for my Dad ? I point out he died in Dec 2019 - oh ... they didn't know??
? i really am living in the twilight zone ?

Next Aged Mothers new social worker rings - to talk about safeguarding issues.... & tells us that night sitting is in place for tonight & tomorrow ....,,,,,,,, um not that we knew of ?
Apparently it was arranged last week .... so why didn't the care manager tell us ? Social worker horrified we had no idea ?
Looks like Aged Mother will be assessed properly face to face with LPA & advocate present at assessment - the fact that we requested this the SW realised how much we have been kept in the dark despite it was the family who have pushed for assessments / night sitting / extended care package

SW going to make sure we are notified when any PCT/GP called about Aged Mother , copy us in on all paperwork, help us get assistive technology & security technology. Previously we have paid for everything- key safes etc .

I was honest & very open - as always . Oversharing is my default! I'm hoping that this SW will be the key to help unlocking the multi agency help Aged Mother so desperately needs..... before facing the inevitable fact of a nursing home - but at least i will have exhausted every option & hopefully by that time Aged Mother will not be aware .........

I'm sure this isn't the end of the battle to get the definitive diagnosis that would be the magic key to accessing funding for the final stages of Aged Mothers dementia

💕
 

jennifer1967

Registered User
Mar 15, 2020
913
Southampton
isnt awful thast you have tolook after your mum and then fight to get your mum what she needs. why cant they just make life easy and deal with it in the first place.
 

TNJJ

Registered User
May 7, 2019
1,776
cornwall
Curiouser & curiouser - as they say
Aged Mothers GP doesn't believe Dementia with Lewy Bodies could be the reason to her behaviour issues & wont refer us back to get that assessment.
In the world of tick boxes - Aged Mothers past medical history & the diagnosis of Parkinsonism back in 2014 means we have hit the jackpot ! On top of that diagnosis again in 2018 DLB was discussed by Mental Health Nurse & to get referral if more issues arose.........

So yet again we are self referring as we had to do in 2018!!!! The history doesn't bode well - if you can't have the support of the GP it's just so much harder ....

But the GP tells me that night sitting services have been discussed & was believed to be in place soon?????

News to us.... especially after Care manager said no further care was required & the letter stated the same from PCT???

Fast forward to the next day ......

Receive phone call from Funding authority asking for payment for my Dad ? I point out he died in Dec 2019 - oh ... they didn't know??
? i really am living in the twilight zone ?

Next Aged Mothers new social worker rings - to talk about safeguarding issues.... & tells us that night sitting is in place for tonight & tomorrow ....,,,,,,,, um not that we knew of ?
Apparently it was arranged last week .... so why didn't the care manager tell us ? Social worker horrified we had no idea ?
Looks like Aged Mother will be assessed properly face to face with LPA & advocate present at assessment - the fact that we requested this the SW realised how much we have been kept in the dark despite it was the family who have pushed for assessments / night sitting / extended care package

SW going to make sure we are notified when any PCT/GP called about Aged Mother , copy us in on all paperwork, help us get assistive technology & security technology. Previously we have paid for everything- key safes etc .

I was honest & very open - as always . Oversharing is my default! I'm hoping that this SW will be the key to help unlocking the multi agency help Aged Mother so desperately needs..... before facing the inevitable fact of a nursing home - but at least i will have exhausted every option & hopefully by that time Aged Mother will not be aware .........

I'm sure this isn't the end of the battle to get the definitive diagnosis that would be the magic key to accessing funding for the final stages of Aged Mothers dementia

💕
So sorry to hear about this. It is so unfair.(()hugs))
 

Duggies-girl

Registered User
Sep 6, 2017
2,093
So sorry to hear this @DesperateofDevon especially after the experience you had with your lovely dad before he died.
I hope you get some kind of break from this soon and they sort your mother out.

It's just not fair and the GP wants a kick up the backside (if only)

Sending you hugs and some strength to get you through. I just wish I could send you a solution.
 

Pete1

Registered User
Jul 16, 2019
879
Hi @DesperateofDevon, I remember only too well the pain that you went through with your poor Dad - the constant battle to get him the care he needed. That took a lot out of you. I must have been awful the LA contacting you for payment so long after his passing.

Yet again you are having to battle for the right care for Mum. It sounds as though more support is now being put in place, but it shouldn't be like this - you are experienced (sadly) with the system, how many others are out there struggling and being fobbed off. Very worrying.

Take care of yourself and stay strong. All the best.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
isnt awful thast you have tolook after your mum and then fight to get your mum what she needs. why cant they just make life easy and deal with it in the first place.
🥰 This amazing forum gives out so much support - i hope by sharing Aged Mothers & Dads journey through this minefield that someone somewhere will find all of this informative & helpful ....... even if it's a HOW NOT TO DO manual !! 🙄
💕
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Sounds like you have got a better SW now

If only you could get a better gp too........
Limited choice atm & to be honest at least it's better the devil you know - so not surprised at the arrogance of not referring back to Mental Health Team
After all who wants to be proved wrong a third time ???
1st- dementia diagnosis when GP said it's old age
2nd- prophylactic antibiotics to stop recurring UTI's when GP said they weren't needed ( Aged Mother hasn't had a UTI since she started on them!!)
3rd- ????
Aged Mother ticks all the boxes for DLB infact her medical history with the unexplained Black outs / falls dating back 20plus years back up a possible diagnosis - as this GP has not seen her for 12 months i'm perplexed as to why the family concerns are dismissed again but not surprised.
Funding ...... the horrid subject that haunts us all!
stay safe ...
i'm self preserving atm ... & feeling pretty rough
💕
xxxx
(((((hugs)))))
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
So sorry to hear about this. It is so unfair.(()hugs))
Bless you 💕 you have enough on your plate as it is
I'm proof that stress ages you - white hairs springing up left right & sadly centre!

Positively Matronly - Aged Mother described me as ........ mind you she didn't recognise me or remember who we where !
💕
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
So sorry to hear this @DesperateofDevon especially after the experience you had with your lovely dad before he died.
I hope you get some kind of break from this soon and they sort your mother out.

It's just not fair and the GP wants a kick up the backside (if only)

Sending you hugs and some strength to get you through. I just wish I could send you a solution.
Oh my lovely if you could know how much those words "your lovely Dad" meant & touched my heart. Happy / sad tears that another thought of him 💕💕🥰💕💕
It's a difficult journey we travel through with our loved ones, & a natural solution will happen bringing its own issues.
Stay safe lovely
💕
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Hi @DesperateofDevon, I remember only too well the pain that you went through with your poor Dad - the constant battle to get him the care he needed. That took a lot out of you. I must have been awful the LA contacting you for payment so long after his passing.

Yet again you are having to battle for the right care for Mum. It sounds as though more support is now being put in place, but it shouldn't be like this - you are experienced (sadly) with the system, how many others are out there struggling and being fobbed off. Very worrying.

Take care of yourself and stay strong. All the best.
Thank you for travelling with me on my parents dementia journeys, I hope that my posts on the forum will give someone the strength & knowledge which helps get their loved one an easier journey
💕
 

Duggies-girl

Registered User
Sep 6, 2017
2,093
Oh my lovely if you could know how much those words "your lovely Dad" meant & touched my heart. Happy / sad tears that another thought of him 💕💕🥰💕💕
It's a difficult journey we travel through with our loved ones, & a natural solution will happen bringing its own issues.
Stay safe lovely
💕
Ah @DesperateofDevon I remember you talking of your lovely dad at the same time as my lovely dad was also coming to the end of his life. Two lovely dads left such precious memories. I miss him dearly (he was so funny) but I am glad that he is finally at peace.

Hope you get some help and stay safe too.

This heat doesn't help.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
How much more.......

............it's a funny old title for a post but it encompasses so much that it felt right. This journey my parents have taken through dementias twists & turns is well documented on this forum under many posts/ titles & crashing in on others posts while discussing / sharing / advising & mostly sympathising with how lonely this journey down dementias various pathways can be.

Each persons journey through Dementia is unique to them, as are the ways we the carers / once loved ones / LPA's react. If you are on this forum then you are among fellow souls experiencing something similar. Some of us are repeat travellers in dementias walkways but it doesn't make it any easier emotionally - just a little more experienced in paperwork & how the systems work/ don't work etc

Yet for all the negativity expressed by myself over the years of this experience there is a massive...... yes - truly MASSIVE dollop of positivity that has like a chrysalis evolved from it all!
Through the pain of accessing help for my late Father , others in the home benefitted from appropriate seating & proper assessments. A big spotlight was turned onto the care provided & i imagine that harsh glare is frequently applied even now.
That same harsh unforgiving spotlight has been shone on many sloppy practices that if not pulled up over time will just spiral into acceptable normality.
BUT BEST OF ALL
This often unpleasant & distressing path through the mire of tick boxes etc put in place to supposedly help has helped shape & produce not one but two advocates. A young woman has been inspired by experiencing this tangled mess dementia presents us with the hope of inside experience & has the desire & drive to be a positive influence for those who lack a voice in the future. A young man has compassion & understanding beyond his years, his work with troubled youth has made positive impact on choices & future pathways through life & helped so many before he ventured into a new life on another continent.

I'm proud & humbled to be the parent of such two inspiring people.

Often we don't realise the impact on others life choices we have - so as for me .... well my role in all of this seems to be unravelling the issues of accessing diagnosis / the pass the parcel funding / highlighting a broken system & finding eventually someone with a voice that will be heard who wants reform of a very broken system; in our local MP Annemarie Morris who is trying to get this mess reformed into a functional system for the future.
I am but a very small pebble dropped in a very large ocean. The ripples i caused will dissipate & fade but that momentum has led to finding a voice that might just cause changes in the future ...... & gives us hope.
HOPE is again positive a glimmer of light

SO......Dementia bring it on
Although in the big scheme of things I am beyond microscopic I have a big harsh torch & i'm not afraid to use it to highlight these in the big scheme of it all micro issues !

This brings me to a Rhod Gilbert comedy sketch
Torch with the light of a thousand candles
always makes me laugh in the darkest of moments

But If enough of us shine light onto the issues we experience then the darkness will be replaced slowly by light - & hopefully a new way of life for those starting out on their dementia journeys
💕
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Ah @DesperateofDevon I remember you talking of your lovely dad at the same time as my lovely dad was also coming to the end of his life. Two lovely dads left such precious memories. I miss him dearly (he was so funny) but I am glad that he is finally at peace.

Hope you get some help and stay safe too.

This heat doesn't help.
like to think of our Dads meeting up & having a chat - hope their is a good supply of Bushmills & suitably chilled Guinness & whatever your lovely Dads tipple (s) are.
I miss his kind dry humour & take on life- but hope i have a little of it in me somewhere I think it's hiding away atm & waiting to emerge probably at an inopportune moment!
💕

stay safe
💕
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Another day comes to close & more emails

1st to say safeguarding have decided that the wandering isn't an issue & can be dealt with locally
2nd to say that Aged Mothers out & about wandering again offering folks her glasses again today & yesterday

so have emailed safeguarding a copy of that email for their records - 3rd time lucky? !

So wandering around not knowing where you are or where your home is is now not considered a safeguarding issue..... wish they in Adult Social Services would make up their minds !
 

TNJJ

Registered User
May 7, 2019
1,776
cornwall
Another day comes to close & more emails

1st to say safeguarding have decided that the wandering isn't an issue & can be dealt with locally
2nd to say that Aged Mothers out & about wandering again offering folks her glasses again today & yesterday

so have emailed safeguarding a copy of that email for their records - 3rd time lucky? !

So wandering around not knowing where you are or where your home is is now not considered a safeguarding issue..... wish they in Adult Social Services would make up their minds !
The goalposts change every time!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Well i'd like to say my fairy godmother is waving her wand & making everything fine .... but i can say it's a lot smoother of a journey in some ways & the same old same old in many others !
Aged Mothers GP won't support a referral back to Mental Health Team - but then the last time Aged Mother was referred by GP was back in 2014 ..... self referral again !

Other neighbours have found Mum wandering about - further a field this week & returned her home . Culminating in today with her being found confused & very disorientated dragging her bag along a pathway leading to a main road.

Honestly you'd think that was enough excitement for the day but no .... she was then seen crawling around in the garden after falling !! Neighbour rings me/ carers & 999!

I'm 2 & 1/2 hours away on a clear road - today it would take me 6 hours with holiday traffic & counting !

So ambulance called ... no idea when it will turn up ..... it's silly season in Cornwall & the carers have got Aged Mother back up on her feet & inside !

My new fairy godmother in the form of a new social worker (- i forgot she was on holiday but hey she offered to go & sit with Aged Mother anyway until help arrived) will be doing an emergency assessment next week.

I'm not going to be there - i am unable to travel next week. Maybe it's just as well - as the following week we have a family care plan & needs assessment & discussion.

The total exhaustion i feel is numbing & im just worn down by it all now.
Support of the GP would make life easier but hey ... what's new folks !

Ps
Him indoors by accident shut the dogs tail in the front door mid week ! so you could say it's been one of those weeks really.
 

Woo2

Registered User
Apr 30, 2019
2,764
South East
😡:( Gosh it doesn’t rain but pour ! I’m sorry to hear about Mum , hope she was checked over and no damage done . Your SW sounds amazing , complete contrast to the Gp, he needs to take some training, in more than one area , they really do have such a lot of bearing on how things go. Fingers crossed that things get a little teeny bit easier with the new Fairy godmother on your side .🤞 Hope pooch’s tail is ok , can imagine how bad the human felt.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
😡:( Gosh it doesn’t rain but pour ! I’m sorry to hear about Mum , hope she was checked over and no damage done . Your SW sounds amazing , complete contrast to the Gp, he needs to take some training, in more than one area , they really do have such a lot of bearing on how things go. Fingers crossed that things get a little teeny bit easier with the new Fairy godmother on your side .🤞 Hope pooch’s tail is ok , can imagine how bad the human felt.
Just had on call paramedic phone asking if Aged Mother was inside & off the floor... then asked for background information on health & welfare issues ... actually think i might now have a fairy godfather in the wings now as well. Paramedic is going to put pressure on GP to back the family in getting further assessments & accessing FNC/ CHC assessments .
How sad we have to have crisis after crisis ... also paramedic going to liaise with care agency & Social worker . Told me to ring back if they can be of help .... i had to triple check that one ! Seriously ! Anytime .... i have a local to me landline number ...... well that's new !
Am now going to sleep ..... v.v.tired .
xx