After 2 years of hospital visits with my 98yr Mum with Alzheimer's and Vascular Dementia, her Consultant passed away very suddenly. He promised to slways continue with her care abd I trusted him. He very carefully gave her diagnosis of which didn't really register and we've always ensured no one ever mentions the 'D' word as she is petrifed of the disease. Today her visit was totally marred by the new Consultant giving her a booklet....Dementia Care....she's cried for a couple of hours today, I've tried to cover it by saying its a pamphlet name covering all types of Memory loss and hers is just her age. To make matters worse she was discharged from their list as she's not 'psycotic' and doesn't need regular reviews. I'm devastated as I feel all potential support has been withdrawn just as she has progressed to nightmares, lack of general memory (she knows she's upset today but cant remember why) lack of interest in eating, choking when drinking, double incontinence etc etc Social Services have discharged her as she's living with us and would be self funding anyway. No carers as I do her personal care, and our local Dementia Helpline never answers their phone. I'm tied to the house day and night and just want to be able to offload occasionally....any thoughts please??? Thank you
Loss of Support
- Thread starter pinkwizard1
- Start date
Hi pinkwizard1 and welcome to DTP.
So sorry you have lost what little support you had, hopefully you can find some alternative support from one or more of my suggestions below.
There is the Princess Royal Trust for Carers,
Carers hubs and the Carers Association.
Google them putting the town that is convenient for you and you hopefully will find they are available in that area. They will offer, information and support and be able to point you in the right direction to get help.
Our local Carers Association had monthly meeting where Carers and their cared for could go to socialise.
Please keep using the forum, there is a wealth of support and understanding from members who know just how hard and demanding caring is.
So sorry you have lost what little support you had, hopefully you can find some alternative support from one or more of my suggestions below.
There is the Princess Royal Trust for Carers,
Carers hubs and the Carers Association.
Google them putting the town that is convenient for you and you hopefully will find they are available in that area. They will offer, information and support and be able to point you in the right direction to get help.
Our local Carers Association had monthly meeting where Carers and their cared for could go to socialise.
Please keep using the forum, there is a wealth of support and understanding from members who know just how hard and demanding caring is.
Hi pinkwizard1
From the sound of it you are doing this 24/7 by yourself. I have 2hrs per day help with OHs personal care because he's not weight bearing. That little bit of help is invaluable to me. The carers have become friends and are a great help not only to my OH but in saving my sanity. If you want to continue doing your mums personal care you could have companionship for her for a couple of times a week to give you time out.
I know the feeling about the loss of support. My OHs son glibly told me last week he was off to Austrailia to live permantly in 6mths. Although he certainly isn't involved with his dads day to day care I always thought if anything happens to me he would at least be here to make sure his dad was taken care of.
Keep posting here there are many in the same boat who understand.
From the sound of it you are doing this 24/7 by yourself. I have 2hrs per day help with OHs personal care because he's not weight bearing. That little bit of help is invaluable to me. The carers have become friends and are a great help not only to my OH but in saving my sanity. If you want to continue doing your mums personal care you could have companionship for her for a couple of times a week to give you time out.
I know the feeling about the loss of support. My OHs son glibly told me last week he was off to Austrailia to live permantly in 6mths. Although he certainly isn't involved with his dads day to day care I always thought if anything happens to me he would at least be here to make sure his dad was taken care of.
Keep posting here there are many in the same boat who understand.
hi @pinkwizard1
you were fortunate to have had such a consultant, his loss is no doubt felt by many
it's not acceptable that Social Services have 'discharged' your mum, personally I would go back to them and say you cannot be expected to provide all personal care yourself and need an agreed care package .. ok then your mum will self fund, but that's not a reason for no involvement ... and do change your routines to having home care visits, maybe day care and respite; you can't sustain doing everything yourself
our local Admiral Nurse has really helped a friend get care in place, maybe contact them as their remit is to support the carer
https://www.dementiauk.org/get-support/admiral-nursing/
and something in the AS site's directory of local services may be useful to you
https://www.alzheimers.org.uk/get-support/your-support-services
you were fortunate to have had such a consultant, his loss is no doubt felt by many
it's not acceptable that Social Services have 'discharged' your mum, personally I would go back to them and say you cannot be expected to provide all personal care yourself and need an agreed care package .. ok then your mum will self fund, but that's not a reason for no involvement ... and do change your routines to having home care visits, maybe day care and respite; you can't sustain doing everything yourself
our local Admiral Nurse has really helped a friend get care in place, maybe contact them as their remit is to support the carer
https://www.dementiauk.org/get-support/admiral-nursing/
and something in the AS site's directory of local services may be useful to you
https://www.alzheimers.org.uk/get-support/your-support-services
Not being funny, but if Mum is 98, you cannot be a spring chicken yourself......... you simply cannot be totally responsible for a 'vulnerable adult' - and you need to emphatically tell Social Services that. You could easily become ill yourself.
When you feel so utterly let down, it is hard, very hard, to pick yourself up and start demanding that you have some help.......
Why do you do Mum's personal care? Get a Care Agency involved - tell Mum you have hurt your arm/leg whatever - as she has memory loss, she will forget you have ever said it anyway - possibly.
If carers are coming in for personal care, you can spend more quality time with Mum as a companion. If not carers, how about a PA who can help with lots of different things....
Not easy to work these things out - it has taken me two and a half years to make my life more acceptable than it was.
I urge you to stand outside the box and see what you can do to make life easier - it could even be something as simple as getting groceries delivered instead of having to do a 'shop' yourself......
good luck
When you feel so utterly let down, it is hard, very hard, to pick yourself up and start demanding that you have some help.......
Why do you do Mum's personal care? Get a Care Agency involved - tell Mum you have hurt your arm/leg whatever - as she has memory loss, she will forget you have ever said it anyway - possibly.
If carers are coming in for personal care, you can spend more quality time with Mum as a companion. If not carers, how about a PA who can help with lots of different things....
Not easy to work these things out - it has taken me two and a half years to make my life more acceptable than it was.
I urge you to stand outside the box and see what you can do to make life easier - it could even be something as simple as getting groceries delivered instead of having to do a 'shop' yourself......
good luck