sicut animam suam : 'it's just life'

[Palerider]

I know what you mean about reducing the visits. I noticed (in mum's last year) that my visit of half an hour a week was really to 'keep an eye on things' and check on mum rather than anything else. It remained necessary for that reason more than any sort of 'mum and daughter' thing - that was long gone. I always tried to engage with her and usually managed something but at the end it was pretty pointless. My presence made absolutely no difference to my mum.

Realising that, I just kept going and waited. Sometimes that's all you can do.

And so I have arrived to a similar point @Jaded'n'faded. My prescence now is to check mum is ok and her room is satisfactory. Mum and her fellow residents are lucky, they have a reasonable team on her unit, though I wish they would water her rose plant . We engage, but not as before, she has become lost. There is nothing to do now other than as you say to wait and be with her.

 

[Palerider]

So today I had to speak with occupational health, which is important and she raked up the last five or so years, which was explained in about 45 minutes, give or take. I don't think she realised until we talked just how much **** I had dealt with in the last few years, mostly on my own.

I was listening to a guy explain that no one can ever know what its like unles they experience these things for themselves and there is no point in explaining because the detail would take too long and be too evasive for anyone to grasp and understand, to see.

I don't know sometimes if I think too much or reflect too much, but my underlying problem is always one of guilt and to some degree failure and I don't think I will ever find closure on those two things no matter how hard others try to persaude me differently. Its like I desperately want this weight to be lifted off my shoulders, but I don't know how. I always knew this would come, I am not niaive, but somehow I seem to have taken this all onboard too much, but with that said I am also angry (still) at what I had to do to get help to mum in the area we lived in and angry that even when things got bad it took a month and pressure from the local MP to find and emergency placement -its then I realised PWD and their families don't matter, and even now that thought fuels me with despair at how things in a wealthy county can be so bad -had mum lived in West Cheshire it would all have been very different.

The ensuing last 18 momths has been one battle after another, infact this whole journey has been one big battle so far at a time when I just want to be with my mum and live a peaceful closure to her life. Everything is sorted, but still comes issue and now the care home and the LA are in dispute over fees for a lady that won't see the next Christmas -seriously?? I am furious as mums liquid assets have been held for payment, but the LA after several weeks are still messing about, but of course the money she had left as time goes by and as fees accumaltae may not cover the final bill. I spoke with the care home head office and they said the LA have created the problem and they need to sort it out amd there is nothing I can do as they pay the care home and then mum pays the LA

If I could do one thing it would be to make this pathway for so many people so much easier, and allow those with PWD at the end of their journey and their families live the remaining time they have care free of such obligations

 

[Izzy]

I hope Satyrday went ok for you

Thank you @Palerider. It did - with the support of great friends.

 

[Jaded'n'faded]

So today I had to speak with occupational health, which is important and she raked up the last five or so years, which was explained in about 45 minutes, give or take. I don't think she realised until we talked just how much **** I had dealt with in the last few years, mostly on my own.

I was listening to a guy explain that no one can ever know what its like unles they experience these things for themselves and there is no point in explaining because the detail would take too long and be too evasive for anyone to grasp and understand, to see.

I don't know sometimes if I think too much or reflect too much, but my underlying problem is always one of guilt and to some degree failure and I don't think I will ever find closure on those two things no matter how hard others try to persaude me differently. Its like I desperately want this weight to be lifted off my shoulders, but I don't know how. I always knew this would come, I am not niaive, but somehow I seem to have taken this all onboard too much, but with that said I am also angry (still) at what I had to do to get help to mum in the area we lived in and angry that even when things got bad it took a month and pressure from the local MP to find and emergency placement -its then I realised PWD and their families don't matter, and even now that thought fuels me with despair at how things in a wealthy county can be so bad -had mum lived in West Cheshire it would all have been very different.

The ensuing last 18 momths has been one battle after another, infact this whole journey has been one big battle so far at a time when I just want to be with my mum and live a peaceful closure to her life. Everything is sorted, but still comes issue and now the care home and the LA are in dispute over fees for a lady that won't see the next Christmas -seriously?? I am furious as mums liquid assets have been held for payment, but the LA after several weeks are still messing about, but of course the money she had left as time goes by and as fees accumaltae may not cover the final bill. I spoke with the care home head office and they said the LA have created the problem and they need to sort it out amd there is nothing I can do as they pay the care home and then mum pays the LA

If I could do one thing it would be to make this pathway for so many people so much easier, and allow those with PWD at the end of their journey and their families live the remaining time they have care free of such obligations

I so agree with you, Simon. I've said much the same on @DesperateofDevon 's thread - that the last thing heartbroken and worried relatives need is to have to battle against the system. It should be one clear pathway, not various different systems pitted against each other to see who can save the most money.

The NHS is broken. Social Services is broken. Where does that leave any of us? Relatives are seen as the enemy. We are interfering, always complaining, we ask too many difficult questions, we pick them up on errors and generally get in the way. We ask for things they either don't want to provide or they don't have the funds to provide. We make their lives more difficult so they hate us. That's how it always felt to me.

 

[DesperateofDevon]

I so agree with you, Simon. I've said much the same on @DesperateofDevon 's thread - that the last thing heartbroken and worried relatives need is to have to battle against the system. It should be one clear pathway, not various different systems pitted against each other to see who can save the most money.

The NHS is broken. Social Services is broken. Where does that leave any of us? Relatives are seen as the enemy. We are interfering, always complaining, we ask too many difficult questions, we pick them up on errors and generally get in the way. We ask for things they either don't want to provide or they don't have the funds to provide. We make their lives more difficult so they hate us. That's how it always felt to me.

Totally agree, but as I remind myself I’m not in this to get “likes” or get on a “Christmas card lists”. It’s the rolling of eyes & dismissive comments, this later escalates to eventually a lack of humanity that becomes except able practice.
Im not sure if the families input will ever be readily taken on board . We provide too much information & the nitty gritty detail . Anyone with a stress of decency is shocked by the system & how it fails to provide care to meet needs.
-all I can say folks is document every phone conversation.
-email when phone calls go unanswered
- email creates a time dated trail
The system is set to fail you it feels, so by being a persistent person it sometimes helps.
im not sure where my own persistence will get me but while I breathe I have hope

 

[Palerider]

I so agree with you, Simon. I've said much the same on @DesperateofDevon 's thread - that the last thing heartbroken and worried relatives need is to have to battle against the system. It should be one clear pathway, not various different systems pitted against each other to see who can save the most money.

The NHS is broken. Social Services is broken. Where does that leave any of us? Relatives are seen as the enemy. We are interfering, always complaining, we ask too many difficult questions, we pick them up on errors and generally get in the way. We ask for things they either don't want to provide or they don't have the funds to provide. We make their lives more difficult so they hate us. That's how it always felt to me.

The social care system is broken, most definately. The next decade or so is mapped out for the NHS with some fixes, but even so the NHS is intending to rely heavily on a social care system that can't even now meet demand. The overriding focus has become money. I don't think anyone with any sense of ability to reason would not agree that funds are needed to pay for our care services, but money alone isn't going to fix the system. An entire culture change is needed from top to bottom, and that is harder than any other form of change. We do need to address how we fund social care, but we also need to address the organisational cultures within it.

I have been shoved aside, ignored, recieved intrusive emails and cold calls, excluded from decision making and made to feel that I don't matter in all of the last few years. I was seen a s a push over by CHC and the LA have astonished me in their behaviour of late. The cogs keep turning round in this fragmented and removed system, even if someone gets caught in the cogs, they just keep going, chew you up and spit you out.

It saddens me that at this stage mum and I are where we are at, and its all about money, not one consideration of the family or the person who it pertains to. I have lost count of the emails to mums MP and lost count of various emails to various agencies. Should we have to endure this when someone is the final throws of dementia?

 

[Palerider]

Totally agree, but as I remind myself I’m not in this to get “likes” or get on a “Christmas card lists”. It’s the rolling of eyes & dismissive comments, this later escalates to eventually a lack of humanity that becomes except able practice.
Im not sure if the families input will ever be readily taken on board . We provide too much information & the nitty gritty detail . Anyone with a stress of decency is shocked by the system & how it fails to provide care to meet needs.
-all I can say folks is document every phone conversation.
-email when phone calls go unanswered
- email creates a time dated trail
The system is set to fail you it feels, so by being a persistent person it sometimes helps.
im not sure where my own persistence will get me but while I breathe I have hope

Whatever you do, keep breathing

 

[DesperateofDevon]

Whatever you do, keep breathing

Hyperventilating beautifully !

 

[Palerider]

Went to visit mum, my now once a week pilgrimage. Just after lunch seems to be a good time as she is still reasonably awake having had her milk shake and dispersed her food anywhere but eat it. I had a quality 20 mins of her being awake and seeing her, although she no longer knows me some of her mannerisms still come through. Speech is difficult as she doesn't hear the words I say -they become jumbled somewhere between her ears and the part of her brain that is now damaged. I know for some who never got on with their parents they don't feel the same, but for me its different, mum and I were a team, good friends and close. Each step of this path has been a difficult walk, but I think this is one of the cruelist parts.

Anyway I checked her draws and wardrobe, as usual the mix of her clothes and somebody elses, but this is how it is in a dementia unit. I popped her chocolate on the side, all neatly labelled -I know its one of the few things she will eat now. The unit is being decorated, and mum doing her wandering had got pink paint on her left hand, of course what can anyone do, stopping someone with dementia from wandering is essentially distressing for them. I am in ore of mum, she defies gravity and even though she is very unsteady and essentially shuffles at snails pace, she still gets up and slowly wanders hanging on for dear life to anything she can hold and the hand rails in the corridor. Most of the time now she is wheelchaired around, but the urge to wander has never stopped. I am curious to know where it is she is going to.

 

[DesperateofDevon]

Went to visit mum, my now once a week pilgrimage. Just after lunch seems to be a good time as she is still reasonably awake having had her milk shake and dispersed her food anywhere but eat it. I had a quality 20 mins of her being awake and seeing her, although she no longer knows me some of her mannerisms still come through. Speech is difficult as she doesn't hear the words I say -they become jumbled somewhere between her ears and the part of her brain that is now damaged. I know for some who never got on with their parents they don't feel the same, but for me its different, mum and I were a team, good friends and close. Each step of this path has been a difficult walk, but I think this is one of the cruelist parts.

Anyway I checked her draws and wardrobe, as usual the mix of her clothes and somebody elses, but this is how it is in a dementia unit. I popped her chocolate on the side, all neatly labelled -I know its one of the few things she will eat now. The unit is being decorated, and mum doing her wandering had got pink paint on her left hand, of course what can anyone do, stopping someone with dementia from wandering is essentially distressing for them. I am in ore of mum, she defies gravity and even though she is very unsteady and essentially shuffles at snails pace, she still gets up and slowly wanders hanging on for dear life to anything she can hold and the hand rails in the corridor. Most of the time now she is wheelchaired around, but the urge to wander has never stopped. I am curious to know where it is she is going to.

I know that I have been open about my Mum never bonding with me , & how I have always overcompensated for that. Sadly Mum has no idea who I am or anyone else, but I do know that I make her feel calm & safe so there is some recognition of unconditional love in her heart if not her head. Yes this is a cruel stage , but I believe it’s harder for those watching our loved one. We crave that recognition & long to find the connection . Mum has gone from spikey to bed bound, & I miss that now ; not something I ever thought I’d say.
I wish it wasn’t summer atm & the holiday traff

Went to visit mum, my now once a week pilgrimage. Just after lunch seems to be a good time as she is still reasonably awake having had her milk shake and dispersed her food anywhere but eat it. I had a quality 20 mins of her being awake and seeing her, although she no longer knows me some of her mannerisms still come through. Speech is difficult as she doesn't hear the words I say -they become jumbled somewhere between her ears and the part of her brain that is now damaged. I know for some who never got on with their parents they don't feel the same, but for me its different, mum and I were a team, good friends and close. Each step of this path has been a difficult walk, but I think this is one of the cruelist parts.

Anyway I checked her draws and wardrobe, as usual the mix of her clothes and somebody elses, but this is how it is in a dementia unit. I popped her chocolate on the side, all neatly labelled -I know its one of the few things she will eat now. The unit is being decorated, and mum doing her wandering had got pink paint on her left hand, of course what can anyone do, stopping someone with dementia from wandering is essentially distressing for them. I am in ore of mum, she defies gravity and even though she is very unsteady and essentially shuffles at snails pace, she still gets up and slowly wanders hanging on for dear life to anything she can hold and the hand rails in the corridor. Most of the time now she is wheelchaired around, but the urge to wander has never stopped. I am curious to know where it is she is going to.

I never thought I’d ever say / write this but I miss the spikey person Mum was now that’s gone , glimmers can be seen - baby bel cheese was thrown when given to Mum ! I have never hidden the fact that I am adopted & Mum just never bonded with me ; sadly Mum was jealous of the relationship I had with Dad. But to see Mum confused ( I like away with the fairies it’s a gentler expression) bed bound , doubly incontinent & unable to communicate I realise that I love unconditionally . Yes I have always overcompensated , I guess trying to be enough & yet never being able to be. Now at Mums end of life I feel resentful that I am battling to access end of life nursing care. I’m powerless as faceless people treat my mum as a number , not a person !
It’s made me realise that I am grieving at this moment the unfairness of a system meant to be ensuring that care needs are met !
my grief for mum is always an underlying current but having to fight to access a care system at EOL is heartbreaking & soul destroying .
I would love to be able to visit Mum & just be with her… I’d love to see her in her own nightclothes & not surgical gowns . I’d love to fill her room with flowers & pictures . I just want a chance to be the daughter …

 

[Palerider]

I know that I have been open about my Mum never bonding with me , & how I have always overcompensated for that. Sadly Mum has no idea who I am or anyone else, but I do know that I make her feel calm & safe so there is some recognition of unconditional love in her heart if not her head. Yes this is a cruel stage , but I believe it’s harder for those watching our loved one. We crave that recognition & long to find the connection . Mum has gone from spikey to bed bound, & I miss that now ; not something I ever thought I’d say.
I wish it wasn’t summer atm & the holiday traff

I never thought I’d ever say / write this but I miss the spikey person Mum was now that’s gone , glimmers can be seen - baby bel cheese was thrown when given to Mum ! I have never hidden the fact that I am adopted & Mum just never bonded with me ; sadly Mum was jealous of the relationship I had with Dad. But to see Mum confused ( I like away with the fairies it’s a gentler expression) bed bound , doubly incontinent & unable to communicate I realise that I love unconditionally . Yes I have always overcompensated , I guess trying to be enough & yet never being able to be. Now at Mums end of life I feel resentful that I am battling to access end of life nursing care. I’m powerless as faceless people treat my mum as a number , not a person !
It’s made me realise that I am grieving at this moment the unfairness of a system meant to be ensuring that care needs are met !
my grief for mum is always an underlying current but having to fight to access a care system at EOL is heartbreaking & soul destroying .
I would love to be able to visit Mum & just be with her… I’d love to see her in her own nightclothes & not surgical gowns . I’d love to fill her room with flowers & pictures . I just want a chance to be the daughter …

Its funny, my dad and I never bonded, I was the third born and somehow I didn't seem to register on his radar, only at the end of his life, in a way I can understand the overcompensation, something I did all of my life with my dad, to no avail for the most part -whatever I did it was never good enough. My mum was a different soul completely. I don't bother thinking about that now too much, because in the end he had no one else really to trust, he'd fell out with my sister and taken sides with my eldest brother, which created animosity between him and my mum, which left me as the go between (piggy in the middle). I did what I could do for him in what was a very short space of time, even though our past was a rocky one, he was my dad despite our differences. Dad died from an aggressive cancer, it was everywhere, but because he had cancer he got everything done from EOL to hospice care -nothing was an issue. My mums story with dementia is an entirely different one, eveything about it has been arduous, but at least unlike your experience mum is on a palliative pathway and I don't have the worries you have.

You are strong DoD, so please don't loose hope and keep fighting xx

 

[DesperateofDevon]

Its funny, my dad and I never bonded, I was the third born and somehow I didn't seem to register on his radar, only at the end of his life, in a way I can understand the overcompensation, something I did all of my life with my dad, to no avail for the most part -whatever I did it was never good enough. My mum was a different soul completely. I don't bother thinking about that now too much, because in the end he had no one else really to trust, he'd fell out with my sister and taken sides with my eldest brother, which created animosity between him and my mum, which left me as the go between (piggy in the middle). I did what I could do for him in what was a very short space of time, even though our past was a rocky one, he was my dad despite our differences. Dad died from an aggressive cancer, it was everywhere, but because he had cancer he got everything done from EOL to hospice care -nothing was an issue. My mums story with dementia is an entirely different one, eveything about it has been arduous, but at least unlike your experience mum is on a palliative pathway and I don't have the worries you have.

You are strong DoD, so please don't loose hope and keep fighting xx

Thank you lovely, I remember posting about my Dad & your lovely supportive posts. Honestly I’m exhausted by the continual battle to get the care in place both Dad needed & now Mum needs.
It’s strange that other terminal diseases get EOL care & palliative care as part of the natural progression of the disease, & yet dementia patients so often don’t .

 

[Palerider]

Thank you lovely, I remember posting about my Dad & your lovely supportive posts. Honestly I’m exhausted by the continual battle to get the care in place both Dad needed & now Mum needs.
It’s strange that other terminal diseases get EOL care & palliative care as part of the natural progression of the disease, & yet dementia patients so often don’t .

I got the same way of late -exhausted with it all, but because of the system, not the dementia.

 

[Palerider]

Well the Olympics is over, and I have missed mum being around before dementia as she would have been glued to the TV for the entire two weeks -she loved it. I haven't bothered this year other than watch brief reports on Team GB. My only claim is when I walked round Olympia in soring temps midday and headed for the nearest hotel and bar with air conditioning in dire need of fluid resus.

Today I checked my emails, something I have not done in over a week. The legal firm have updated me and they now have all the records they need to move onto the next stage to challenge the CHC -I'm glad I instructed them because I just had no energy left to fight and digging through all of that information would have been the end of my sanity for sure.

The doctorate is back on the cards as the interview panel have contacted me and want me to do a short course in more specialised methodology and to re-apply next year, clearly this was my weakness in the verbal exam of my proposal. So when I am up and running again in October I'll be setting the proposal right and be able to defend it.

Emma and Shirley (friends and also work colleagues) are coming up midweek to visit me, which will be welcome now I am feeling more in tune with myself. I'm still waiting for the counselling as there is a waiting list. I asked if psychotherapy is available, but was told its a step programme and that will be decided during counselling. OH have told me not to return to work until counselling has started, but I am feeling much improved than where I was in July, and I enjoy my job, but the OH nurse said yes, but if you can't focus due to counselling then I can't return until things pan out and level off.

Rhi is struggling as her mum is unwell and getting worse, she has the same anxiety I used to have, she feels she can't leave to come and visit me - I completely get it, having experienced it myself, I know full well what she is experiencing

 

[DesperateofDevon]

Well the Olympics is over, and I have missed mum being around before dementia as she would have been glued to the TV for the entire two weeks -she loved it. I haven't bothered this year other than watch brief reports on Team GB. My only claim is when I walked round Olympia in soring temps midday and headed for the nearest hotel and bar with air conditioning in dire need of fluid resus.

Today I checked my emails, something I have not done in over a week. The legal firm have updated me and they now have all the records they need to move onto the next stage to challenge the CHC -I'm glad I instructed them because I just had no energy left to fight and digging through all of that information would have been the end of my sanity for sure.

The doctorate is back on the cards as the interview panel have contacted me and want me to do a short course in more specialised methodology and to re-apply next year, clearly this was my weakness in the verbal exam of my proposal. So when I am up and running again in October I'll be setting the proposal right and be able to defend it.

Emma and Shirley (friends and also work colleagues) are coming up midweek to visit me, which will be welcome now I am feeling more in tune with myself. I'm still waiting for the counselling as there is a waiting list. I asked if psychotherapy is available, but was told its a step programme and that will be decided during counselling. OH have told me not to return to work until counselling has started, but I am feeling much improved than where I was in July, and I enjoy my job, but the OH nurse said yes, but if you can't focus due to counselling then I can't return until things pan out and level off.

Rhi is struggling as her mum is unwell and getting worse, she has the same anxiety I used to have, she feels she can't leave to come and visit me - I completely get it, having experienced it myself, I know full well what she is experiencing

Being able to understand is what we have all needed, & so often lack x
I hope Rhi gets some help for her Mum & it won’t be too long till you get to see each other .
Contact the Admiral team for counselling - they act quickly .
Great about the doctorate - go you!
CHC - well that ol can of worms as they say .
Had Mums CCG ring today to say that they still haven’t received any paperwork from the hospital - despite hospital emailing on Friday to say fast track was sent in ?‍♀️??

I am soo angry !
afraid to make too many waves as mum is dying & we want her out of that ward & in a placement near us asap.

 

[DesperateofDevon]

I got the same way of late -exhausted with it all, but because of the system, not the dementia.

I am not only exhausted by it all, but now my physical health & mental health is being affected.
Through Stress I have heart palpitations , panic attacks , & a big M.E flare up now to contend with; I can’t sleep at night , or day, my stomach is now upset & painful, bursting into tears is just the norm & my eyes have been red & swollen for 2 months now! I’m physically shaking & feel constantly sick . As for being able to have a rational conversation with anyone well that boat seems to have sailed .
Seriously cannot cope with the failing care system in place for dementia.
On Friday mums old Social Worker confirmed that the hospital told her mums needs were no longer social care weeks ago in an email.
?‍♀️
Making the d2a bed enablement package requiring the hospital to sort out the fast track funding asap!

Bed bureau - not really an option as it’s EOL nursing palliative care mum now needs 24/7 & CCG can’t understand why hospital believe that the bed bureau is an option.

my daughter arranged with night staff a visit - not booked in as we have now been told we need to book an appointment to gain access onto the ward. Daughter took in mums beloved Panda , a soft toy that I bought for her back in 2018 when Dad went into residential care. ( no CHC assessments done then either?‍♀️)
Anyway lovely daughter got soft throw , fake orchid, & put photos into frames to make the room less clinical. ( I know it’s a hospital but she’s bed bound in a side room alone) the night nurse left a note to say she had arranged all of this with my lovely daughter - this nurse was bank staff!
So lovely daughter now phoning up Hospice this afternoon who are waiting for the transfer / referral info from the hospital …. not holding out much hope as other paperwork for funding isn’t submitted !

 

[Palerider]

Being able to understand is what we have all needed, & so often lack x
I hope Rhi gets some help for her Mum & it won’t be too long till you get to see each other .
Contact the Admiral team for counselling - they act quickly .
Great about the doctorate - go you!
CHC - well that ol can of worms as they say .
Had Mums CCG ring today to say that they still haven’t received any paperwork from the hospital - despite hospital emailing on Friday to say fast track was sent in ?‍♀️??

I am soo angry !
afraid to make too many waves as mum is dying & we want her out of that ward & in a placement near us asap.

My anger has passed, I've realised it doesn't help me continue to be an advocate or to switch off when I am home and in need of some peace. I see it everyday at work, hospitals with patients that really shouldn't be there and a social care system that isn't set up to provide the care required and the middle managers arguing out who's responsibility they are across the board. The system is driven by targets and flow, to the point that the people that matter get forgotten.

My last experience was with my sister as she lay dying in hospital and the inadequate end-of-life care she got, lying for hours waiting for pain relief she had requested. It got that way I visited everyday, just to be sure things were as they should be, the last straw was a few days before she finally got moved to the hospice, when the senior nurse decided to put up a bag of fluids, because her urine was dark. I could not believe the justificatin for this as my sister was now comatose and clearly dying. I will say that the bag of fluids was soon removed after my wrath descended. Hydrating someone intravenously when they are the final throws of life is a cruel act. After considerable pressure she was finally moved to the hospice and passed 48 hrs later, I am glad to say she was pain free and likely unaware.

I would go back to the hospital and firmly but not rudly tell them to sort this matter of the paper work as time is of essence and you don't want you mum remaining in hospital where she will not receive adequate care given her condition. I certainly wouldn't leave it for them to fathom -things frequently get miscommunicated, and this is always one of the biggest sources of complaint.

 

[Palerider]

I am not only exhausted by it all, but now my physical health & mental health is being affected.
Through Stress I have heart palpitations , panic attacks , & a big M.E flare up now to contend with; I can’t sleep at night , or day, my stomach is now upset & painful, bursting into tears is just the norm & my eyes have been red & swollen for 2 months now! I’m physically shaking & feel constantly sick . As for being able to have a rational conversation with anyone well that boat seems to have sailed .
Seriously cannot cope with the failing care system in place for dementia.
On Friday mums old Social Worker confirmed that the hospital told her mums needs were no longer social care weeks ago in an email.
?‍♀️
Making the d2a bed enablement package requiring the hospital to sort out the fast track funding asap!

Bed bureau - not really an option as it’s EOL nursing palliative care mum now needs 24/7 & CCG can’t understand why hospital believe that the bed bureau is an option.

my daughter arranged with night staff a visit - not booked in as we have now been told we need to book an appointment to gain access onto the ward. Daughter took in mums beloved Panda , a soft toy that I bought for her back in 2018 when Dad went into residential care. ( no CHC assessments done then either?‍♀️)
Anyway lovely daughter got soft throw , fake orchid, & put photos into frames to make the room less clinical. ( I know it’s a hospital but she’s bed bound in a side room alone) the night nurse left a note to say she had arranged all of this with my lovely daughter - this nurse was bank staff!
So lovely daughter now phoning up Hospice this afternoon who are waiting for the transfer / referral info from the hospital …. not holding out much hope as other paperwork for funding isn’t submitted !

The hospital are trying to empty their beds and they will take the path of least resistance to do that, demand is high and resources at an all time low.

I hope things get sorted in the next 48 hrs and mum goes to the right place of care x

 

[DesperateofDevon]

The hospital are trying to empty their beds and they will take the path of least resistance to do that, demand is high and resources at an all time low.

I hope things get sorted in the next 48 hrs and mum goes to the right place of care x

As one hospital discharged mum into this trusts care without our knowledge, gave meds against the advance decision Mum made , a case of patient mistaken identity , I honestly have no faith !
The Hospice are assessing tomorrow & hoping to transfer. We have lost one placement because of the bed bureau becoming involved & miscommunications , so we have another possible placement in an end of life nursing palliative care unit that’s part of a dementia residential home . They have a Dr on site & will not muck about getting funding in place to meet care needs .
If that fails … I really don’t know !

 

[Palerider]

As one hospital discharged mum into this trusts care without our knowledge, gave meds against the advance decision Mum made , a case of patient mistaken identity , I honestly have no faith !
The Hospice are assessing tomorrow & hoping to transfer. We have lost one placement because of the bed bureau becoming involved & miscommunications , so we have another possible placement in an end of life nursing palliative care unit that’s part of a dementia residential home . They have a Dr on site & will not muck about getting funding in place to meet care needs .
If that fails … I really don’t know !

Sounds like finally there is a plan in place that is appropriate. If I were you I would stay in contact with the parties involved to iron any hiccups as they arise. Its so hard when all we want to do is be there for our PWD, but getting the right place with a good GP is always something to aim for and work on, despite the feeling we may be one of those 'problem relatives'