I feel abandoned!!

[Sunseeker1977]

My wife has been suffering with this dreadful disease for over 9 years ... we relocated a few years ago to be nearer friends and family which gave us much needed support. We also had to change consultant as a result of this relocation ..... the service we received was initially fantastic, however over the last 2 years the original consultant moved on and we have had 2 more since ..... we have been receiving visits from the nursing team who have been monitoring my wifes behaviours ...... her behaviours have been erratic and the consultant suggested a modification to medication, which was to reduce the aricept and increase memantine over time .... we are just 4 weeks into this modification, and received a visit from the nurse on Wednesday .... On Thursday I received a call from one of the nurses basically saying that there was nothing more they could do and was discharging my wife back to the GP ..... I rang to express my concern and was asked what more I wanted her to do ........ how do I know!! I don't understand the medication and its impacts .... all I know was we were modifying my wifes medication and that they have basically abandoned us half way through the process ... to top it off I went to collect my wifes prescription to find it had been adjusted without my knowledge and was different to what the nurses/ consultant had suggested!! I don't know what is going on other than the complete lack of understanding and empathy shown by the nurse I spoke to has left me emotionally drained , angry, and confused ... I feel so isolated and let down by the people who should know better!!

Has anyone else had a similar experience?

Apologies for the length of the post I just needed to 'vent' I will contact the GP on Monday to sort out my wifes medication and I am considering raising a grievance against the nurse in question!!

They really should know better ... as carers, we live such an isolated life ... with precariously balanced emotions on a journey none of us can win .... surely we have right to expect 'the experts' to demonstrate some self awareness and to be aware of the possible impacts of their actions!! ..... not this nurse she left me in tears of frustration!!

 

[Shedrech]

hi Sunseeker1977
I'm sorry that you have been so upset by the call
unfortunately the medics can sometimes be so surrounded by the tasks of arranging meds/appointments .... that they lose sight of the individual impact of what they say on the particular person they are speaking with - certainly let them know, so maybe future calls to others may be more considerate
from what you write, you appear to have been in regular contact with a consultant or someone linked to a consultant, so actually you've done well, and maybe got used to that level of input - dad was 'discharged to GP' much before your wife - it wasn't that the consultant was abandoning him, it was that, having organised meds and overseen them being started, the future oversight is down to the GP, who can refer back to the consultant if necessary - all the info about dad's consultations was sent to his GP, and a copy of each letter was sent to dad, so his GP knew all about his particular situation
definitely a good idea to go chat over the meds, and anything else, with your wife's GP - I hope they can explain what's happening
best wishes

 

[chick1962]

Hello sunseeker, my husband is 5 years into this terrible disease and we also have been discharged to our GP . It's like Shedrech explained, the way Mental Health work once assessments and medication have been sorted out. If things get a down turn, the GP can always refer you back. Sorry you are feeling a bit abandoned. You could always get in touch with an admiral nurse, if you have them, to talk things through .


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[Sunseeker1977]

I read and understand you replies .... and if medication had been stable, as it had been for the recent past I could have understood! But ... we are part way through a rebalance of medication, the most significant intervention in medication for the last 12 months .... and they choose now!! .... In terms of the Kubler Ross cycle I have been left in the valley of despair .... the depression element!!

You might, and probably are, both correct in your balanced, stable and unemotional perspectives .... but from my involved perspective I feel dreadful .... no warning nor previous discussion that this was the target outcome ... just a cold unexpected phone call to tell me that my wife was being discharged ... when I was expecting a phone call to advise me on the next stages of the medication modification .... It was handled very very very badly .. otherwise why do I feel like I do?

As they say .... its not what you say its how it makes the other person feel!! .. I feel awful!

 

[chick1962]

Oh I do understand how you are feeling sunseeker. I would be upset too. It should never be done over the phone either . We were told when the nurse came round , in person. Maybe you should make them aware on how you are feeling to further discuss .


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[rosy18]

Hi Sun seeker I too felt abandoned when I was told by letter that all future health problems would be seen to by my GP as they felt they could no longer be of any benefit to my Mum. I felt the only contact I had with someone I could talk to, the dementia nurse who visited every few weeks was being taken away from me, but I have to say my GP and the practise nurses have been a good help to me and if I've had a query I've just telephoned the surgery and within half an hour I've had a call back but I really do understand your frustration and if like me initially fear of the unknown.
I do hope when you speak with your GP you get some comfort and confidence in that they too know the best way forward with your wife's treatment.
I wish you both well x

 

[Murper1]

My Mum has also been discharged from the Memory Clinic, and now has also changed GPs. I was alarmed at the time, but have got used to the idea that actually I am pretty much alone in this and that any help from anyone is a bonus. Which is why I find myself reading all the posts on TP

 

[LynneMcV]

It is a horrible feeling to have the rug pulled out from beneath your feet and to be left floundering.

I don't understand why the tweaking of meds seemed to be abandoned part way through. When my husband had his meds tweaked last year it was a lengthy process over a two month period.

Mind you, that didn't go smoothly either, as our GP was not told about all of the new medication and I recently had a bit of a battle trying to get them to prescribe something which was on his care plan when he left hospital (not a daily medication but one to be given on a sporadic basis as and when needed). As it wasn't on the GP's records I had to get the prescription direct from the community mental health team instead.

At my last meeting with the community health team in January I was told that there would be another assessment in 6mths and (all being ok) my husband would be discharged back to the GP's care.

I am worried about losing the extra support but, unlike you, I have time to mentally prepare for it - and as chick1962 pointed out, the GP can always refer back if things change again.

But yes, the way you have been treated was wrong and inconsiderate. It is only by raising the issue directly with them that they will know the upset caused. We can but hope that they will use the feedback positively in how they handle similar situations for you and others in future - as well as managing your current worries in a more supportive way.

 

[Sunseeker1977]

Well that was interesting!!!

Someone on here clearly read my post and knew instantly who I was!!! My phone was red hot this morning and all is now resolved ... hopefully to the satisfaction of all and the betterment of the service going forward for myself and others !! Shame it had to take such a post to get my message across but ... lessons learned on both sides!!

Thanks for all your support and advice. .... I no longer feel abandoned!!

 

[chick1962]

Well that was interesting!!!

Someone on here clearly read my post and knew instantly who I was!!! My phone was red hot this morning and all is now resolved ... hopefully to the satisfaction of all and the betterment of the service in the future for myself and others !! Shame it had to take such a post to get my message across but ... lessons learned on both sides!!

Thanks for all your support and advice. .... I no longer feel abandoned!!

[emoji4][emoji4][emoji4]


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[Shedrech]

gosh Sunseeker1977
that's pretty amazing - the power of TP; and clearly those in 'power' read, digest and respond (well some anyway)
glad you're more content and not feeling so alone
keep posting
best wishes

 

[LynneMcV]

Really pleased to hear that this has been resolved for you now and that you now feel properly supported and informed again.

 

[Lilac Blossom]

I am so glad to hear that you have had a good outcome Sunseeker.

I had a phonecall from CPN which I thought would be to say she when she would be visiting. Instead she just said I'm phoning to inform you that the case is closed - nothing more can be done so in future just contact GP. The isolation and the weight of responsibility I feel as a lone carer is truly dreadful. I have read of Admiral Nurses - wish we had them in Scotland!

Kind regards Sunseeker xx

 

[muir36]

I feel abandoned

I am so glad to hear that you have had a good outcome Sunseeker.

I had a phonecall from CPN which I thought would be to say she when she would be visiting. Instead she just said I'm phoning to inform you that the case is closed - nothing more can be done so in future just contact GP. The isolation and the weight of responsibility I feel as a lone carer is truly dreadful. I have read of Admiral Nurses - wish we had them in Scotland!

Kind regards Sunseeker xx

I too live in Scotland. It wasn't until I phoned the Memory Clinic to find out why my OH had not received another appointment that I was told he had been discharged. This was the first I knew about this. My response was "So you have abandoned him" her reply was no we haven't abandoned him but that was the end of the conversation. So yes he has been abandoned.

 

[Kevinl]

Hi Muir, welcome to TP
It seems to be part of a pattern that care is being devolved back to the GP. In all fairness I took my (late) mother to assessments every 6 months for years and nothing ever happened. When my wife developed AZ we went twice a year for about 6 years and nothing much happened there either once the original medication was set up, frankly it was all a bit of a waste of time.
I thought Scotland had a system of its own for dementia support I'm sure I've heard people on here refer to it although I don't know what it's called but they have some sort of case worker system, maybe someone can comment north of the boarder.
Lilac mentions Admiral nurses but they're few and far between, I live in Greater Manchester although not in Manchester and there are none here, the only part of the whole Greater Manchester area that are covered are Tameside and Glossop and North, Central and South Manchester, I live in Manchester West AHA so nothing.
I think part of the issue is that people want it to be recognised that there is a person with a serious disease of the brain out here and someone with no qualifications or experience is being left alone to deal with the situation. There's the NHS with all it's massive resources, doctors, nurses, hospitals, ambulances, big machines that go beep and when it comes to someone with a serious illness Kev in his semi detached is left to cope, one his own with no support, how does that work?
They don't send people with cancer round here and ask me to irradiate them in my microwave, I've never been asked to do any major surgery on someone in my kitchen so how come they're quite happy to leave me to care for someone with AZ?
Rant over.
K

 

[muir36]

I feel abandoned

Hi Muir, welcome to TP
It seems to be part of a pattern that care is being devolved back to the GP. In all fairness I took my (late) mother to assessments every 6 months for years and nothing ever happened. When my wife developed AZ we went twice a year for about 6 years and nothing much happened there either once the original medication was set up, frankly it was all a bit of a waste of time.
I thought Scotland had a system of its own for dementia support I'm sure I've heard people on here refer to it although I don't know what it's called but they have some sort of case worker system, maybe someone can comment north of the boarder.
Lilac mentions Admiral nurses but they're few and far between, I live in Greater Manchester although not in Manchester and there are none here, the only part of the whole Greater Manchester area that are covered are Tameside and Glossop and North, Central and South Manchester, I live in Manchester West AHA so nothing.
I think part of the issue is that people want it to be recognised that there is a person with a serious disease of the brain out here and someone with no qualifications or experience is being left alone to deal with the situation. There's the NHS with all it's massive resources, doctors, nurses, hospitals, ambulances, big machines that go beep and when it comes to someone with a serious illness Kev in his semi detached is left to cope, one his own with no support, how does that work?
They don't send people with cancer round here and ask me to irradiate them in my microwave, I've never been asked to do any major surgery on someone in my kitchen so how come they're quite happy to leave me to care for someone with AZ?
Rant over.
K

Thanks Kevin your rant is exactly what I wanted to say but couldn't find the words. Our only contact after diagnosis was the Memory Clinic for 6 monthly visits for the first 2 years and then nothing and I have to agree with you it was a waste of time anyway was given no info about who can help. We have never been told about case workers. It is now 6 years and if I hadn't found TP by chance I wouldn't have had a clue what to expect. I have found TP a source of information and in a queer way it helps to know you are not alone on this journey. During the last year I have found a Carers Centre and Alzheimers nearby and both have been helpful but it has taken me 5 years to do so. Surely this should not have happened, I was told we must have fallen through the net! Sorry for my rant but have wanted to for a long time now. Sorry that you have gone through this too.

 

[CynthsDaugh]

Hi Muir, welcome to TP
It seems to be part of a pattern that care is being devolved back to the GP.
K

There does seem to be a move towards passing back to GPs. We live in the same LA as Kevin, and when Mum was diagnosed back in 2015 it was through the 'Memory Assessment Team' and a different experience. Once Mum had been tried on Donepezil and Rivasitigmine but didn't take to either she was discharged back to the GP. I asked if there would ever be any follow up and was told I could always ask the GP to refer back. I think the 'Assessment Team' bit says it all. We'll assess you but ultimately your on your own. I did feel abandoned at the time but in the end just got on with supporting Mum as best I could.


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[oilovlam]

Same thing happened to my mum. When 'old people mental health' (OPMH) team thought that Aricept wasn't having any effect they referred the care back to the GP. It was a kick in the teeth. I thought 'just when the going gets difficult' they wave us goodbye. I thought that OPMH would be involved to the very end....after all they are the experts....not like mum was cured.

I put it down to a lack of resources. There are 800,000 (??) people with dementia and they cannot handle them all. The GP has been OK....but very hands off. So we are effectively on our own.

Had trouble getting sleeping tablets from GP for mum....had to get 'approval' from OPMH...the GP now gives me (grudgingly) 8 zopiclone tablets every 6 months.

 

[Lilac Blossom]

Hubby had been housebound for a number of years due to health issues before dementia became the major consideration it now is.

When he was diagnosed vascular dementia I was told by the consultant who came to our home, that we would have visits by Post Diagnostic Link Worker for one year then CPN would take over and be a regular source of help and advice, referring back to consultant if/when necessary.

PDLW visited three times during the first year and was a wonderful source of help/advice/encouragement. CPN visited once - she had only recently been appointed to the post, having previously been a district nurse. Then she phoned and announced that the case is closed - no more contact from her. She was quite abrupt, didn't want to have conversation and certainly did not indicate that I could phone her to talk or ask advice - if anything crops up contact GP.

So we are abandoned with no other option than to carry on the best way we can looking after our loved ones.

 

[philamillan]

Sadly our system seems to treat the number but not the individual. It is even more difficult for the carer as they are not even considered to be a number!

We have so few options available for treatment that the trend is to focus on early dementia as the impact of medication is most significant then. Once the PWD has moved beyond the benefit of treatment there is little else to offer.

Maybe a bit more honesty regarding the limitations of medication and more support for the carer during the transition would be better.