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Caring for mother with early onset Alzheimer's in London - advice?

CMartin

New member
Aug 27, 2019
4
London
Hi, this is my first post. I'm a 29 year old woman and have been looking after my mother alone for three years. She is 58 years old and was diagnosed in 2017.

I've reached breaking point so I would be extremely grateful for any advice you have. Despite have a sister (27) and brother (37), neither of them care to offer to help me with looking after our mother. I live with her, have a full-time job and have been studying part-time (weekly 3 hour lectures after work) so I have really been struggling with constant stress and demands. All other family live in America or the Caribbean and my mother lost contact with acquaintances.

I've had her diagnosed in 2017, I arranged her getting the ESA, PIP, housing benefit and I have an LPA for both finance and health. I had the care assessment in December (applying in July 2019). It lead to me being assigned with an occupational therapist (??) who argued with me and didn't let me know when carers would start visiting and then they went to the wrong. Eventually had a regular carer but they were quite loud and aggressive, throwing dishes in the sink, walking in the house, not speaking to my mum but speaking loudly on the phone in another language instead. Now with Covid-19 I have no carers visiting, my mother's need have increased regarding personal care and I can't get any form of respite.My mental health is at rock bottom and I worry about reaching a point that would leave my mother helpless.

I wanted to find a nursing home this year as I can no longer cope with the constant stress but my local authority has been awful. I've asked for carers to resuming visiting last week. I've asked for an increase in hours for personal care and if another carer can be assigned from the care agency. It was like getting blood from a stone asking for this on the phone and I haven't even been assigned a social worker.

I would be very grateful for advice about using private carers, finding a care home without a local authority because it's getting to the point where I cannot cope mentally or emotional with her.

In the three years, she went from working and being about to cooking go shopping, to not knowing where her bathroom is in her own house, not eating food that's available around her, refusing to have a bath, brush her teeth, wash her hair, watch TV, get out of bed, do any fun activity. She paces up and down the stairs 6am-9am, blames me for starving her when she's just forgotten she's had her meals and is in fact overweight. She throws used toilet papers on the floor, sink, bin. She will say she's hungry but throw most of her food in the bin, leaves the front door open, opens the door to people and talks to suspicious men I don't know...

I would be grateful for any advice and support as I am in a dark place. Thanks x
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,132
Yorkshire
hello @CMartin
a warm welcome to DTP
you sound exhausted and so worried about your mum ... you've done so well by her
I'm sorry that you've had such a negative experience with arranging carers

if your mum has funds, you can go ahead and look into arranging residential care
this may help explain the financial situation
and this to find local homes

if your mum needs funding by the Local Authority, I'm afraid you may have to really push ... you'll need a re-assessment of your mum's care needs and for the LA Adult Services to agree that your mum's needs are such that they cannot be met by care in your home ... phone but also email to provide a 'paper' trail to refer back to if necessary
make it clear that you are close to carer breakdown and cannot yourself provide the level of care she needs ... that she is unable to care for herself so would be at risk of harm due to self neglect ... really stress the danger she puts herself in ie leaves the door open and answers it to anyone, such behaviour often progresses to wandering which will put your mum at greater risk

unfortunately, the LA may say 4 home care visits, some day care and respite will be enough and not agree with you that residential care is now required .... so you may have to accept what they offer to prove it isn't enough ... tell them that they have the duty of care to ensure your mum receives a suitable care package and, though it will go against the grain, insist that you cannot provide care yourself, expecially at night (LAs will not provide night time care, so this can be the lever to residential care)

do have a chat with your GP, not only to give them an up to date picture of your mum's condition, mainly to explain the effects on your own health and welfare

it may help to talk with an Admiral Nurse, as ghey are there to support carers

and there's the national support line ... the advisors are knowledgeable and understanding

now you've found us, keep posting
 

kindred

Registered User
Apr 8, 2018
2,428
Hi, this is my first post. I'm a 29 year old woman and have been looking after my mother alone for three years. She is 58 years old and was diagnosed in 2017.

I've reached breaking point so I would be extremely grateful for any advice you have. Despite have a sister (27) and brother (37), neither of them care to offer to help me with looking after our mother. I live with her, have a full-time job and have been studying part-time (weekly 3 hour lectures after work) so I have really been struggling with constant stress and demands. All other family live in America or the Caribbean and my mother lost contact with acquaintances.

I've had her diagnosed in 2017, I arranged her getting the ESA, PIP, housing benefit and I have an LPA for both finance and health. I had the care assessment in December (applying in July 2019). It lead to me being assigned with an occupational therapist (??) who argued with me and didn't let me know when carers would start visiting and then they went to the wrong. Eventually had a regular carer but they were quite loud and aggressive, throwing dishes in the sink, walking in the house, not speaking to my mum but speaking loudly on the phone in another language instead. Now with Covid-19 I have no carers visiting, my mother's need have increased regarding personal care and I can't get any form of respite.My mental health is at rock bottom and I worry about reaching a point that would leave my mother helpless.

I wanted to find a nursing home this year as I can no longer cope with the constant stress but my local authority has been awful. I've asked for carers to resuming visiting last week. I've asked for an increase in hours for personal care and if another carer can be assigned from the care agency. It was like getting blood from a stone asking for this on the phone and I haven't even been assigned a social worker.

I would be very grateful for advice about using private carers, finding a care home without a local authority because it's getting to the point where I cannot cope mentally or emotional with her.

In the three years, she went from working and being about to cooking go shopping, to not knowing where her bathroom is in her own house, not eating food that's available around her, refusing to have a bath, brush her teeth, wash her hair, watch TV, get out of bed, do any fun activity. She paces up and down the stairs 6am-9am, blames me for starving her when she's just forgotten she's had her meals and is in fact overweight. She throws used toilet papers on the floor, sink, bin. She will say she's hungry but throw most of her food in the bin, leaves the front door open, opens the door to people and talks to suspicious men I don't know...

I would be grateful for any advice and support as I am in a dark place. Thanks x
You have endured enough and you are not alone in finding the local authority hell to deal with. I employed private carers for my husband with severe dementia, just a few times a week so I could work. They were pretty awful too.
Please stress to the local authorities that you cannot continue, you are at break point and can no longer provide this care. Your mother is a vulnerable person and they have a duty of care. Of course they will argue but stand your ground, please. The stair pacing puts her at risk of falling.
Are you living in your mothers house?
Warmest, Kindred
 

CMartin

New member
Aug 27, 2019
4
London
hello @CMartin
a warm welcome to DTP
you sound exhausted and so worried about your mum ... you've done so well by her
I'm sorry that you've had such a negative experience with arranging carers

if your mum has funds, you can go ahead and look into arranging residential care
this may help explain the financial situation

and this to find local homes


if your mum needs funding by the Local Authority, I'm afraid you may have to really push ... you'll need a re-assessment of your mum's care needs and for the LA Adult Services to agree that your mum's needs are such that they cannot be met by care in your home ... phone but also email to provide a 'paper' trail to refer back to if necessary
make it clear that you are close to carer breakdown and cannot yourself provide the level of care she needs ... that she is unable to care for herself so would be at risk of harm due to self neglect ... really stress the danger she puts herself in ie leaves the door open and answers it to anyone, such behaviour often progresses to wandering which will put your mum at greater risk

unfortunately, the LA may say 4 home care visits, some day care and respite will be enough and not agree with you that residential care is now required .... so you may have to accept what they offer to prove it isn't enough ... tell them that they have the duty of care to ensure your mum receives a suitable care package and, though it will go against the grain, insist that you cannot provide care yourself, expecially at night (LAs will not provide night time care, so this can be the lever to residential care)

do have a chat with your GP, not only to give them an up to date picture of your mum's condition, mainly to explain the effects on your own health and welfare

it may help to talk with an Admiral Nurse, as ghey are there to support carer

and there's the national support line ... the advisors are knowledgeable and understanding

now you've found us, keep posting
Hi Shedrech,

Thank you so much for the very useful advice and information.
I called my local authority's first response team again today after no response two weeks later. They still wouldn't provide a social worker or increase the time of care in the package of care so I have just sent a lengthy email to them, copying the home care agency. The LA said the homecare agency to agree an increase of time but the agency says it's the LA who needs to agree it as they're paying for their service... I will definitely be in touch with our GP about my mum's current condition and my health.

Thanks again for your support.

C
 

CMartin

New member
Aug 27, 2019
4
London
Hello @CMartin ,
I see you have received very good advice above.
Also, if it is the case you need to "battle" with your local authority you may find approaching your local Carers Centre very helpful, as they can often take up your case on your behalf with the council. You can find your nearest Carers Centre at the following link:
Hope this helps,
Paco
Hi Paco,

Thank you so much for letting me know about the Carers Centre. Speaking to the council is becoming extremely exhausting so I'll probably end up using them.

All the best,
 

CMartin

New member
Aug 27, 2019
4
London
You have endured enough and you are not alone in finding the local authority hell to deal with. I employed private carers for my husband with severe dementia, just a few times a week so I could work. They were pretty awful too.
Please stress to the local authorities that you cannot continue, you are at break point and can no longer provide this care. Your mother is a vulnerable person and they have a duty of care. Of course they will argue but stand your ground, please. The stair pacing puts her at risk of falling.
Are you living in your mothers house?
Warmest, Kindred
Hi Kindred,

Thanks for replying. The service is shockingly awful, especially as there is an increasing need for adult social care and support for carers. I'm sorry to hear you are also experiencing trouble with getting your husband the right people to care for him.It's a shame paying for private care doesn't guarantee better service or carers... If I don't get anywhere with the council I will might need to go down that route.

Thanks, I called and sent a lengthy, detailed email to the first response adult social care team today and mentioned everything. Yeah, although she hasn't fallen, her balance isn't great and I think it's inevitable...
I live with my mum since she was diagonsed in 2017.. I was intending to move abroad but there is no way she can live alone.

All the best,

C