End stage dementia

[Alex53]

Hi. My name is Alex and I’ve been caring for my mum for over 2 years now and a year ago had to give up work to look after her full time. She has end stage dementia and because of a breakdown I had from carer burnout just before Christmas I put her into respite for 2 weeks. My brother and I picked her up Christmas Eve to bring her home but she is just worse than ever. Doubly incontinent, lost mobility, aggressive and agitated, doesn’t know who I am. It’s just heartbreaking .. She has been smearing feceas everywhere and I just can’t cope. I got in touch with Admiral Nurses who have said she needs 24hr supervision now and social services are looking to find her somewhere permanent. The problem I have now is because I live with and care for my mum, she rents a house from private landlord and claims housing benefit. I have not got power of attorney and will not be able to afford to live here, I phoned housing benefit today and they said I will not be able to stay in our home unless I can afford the rent, which I can’t and will have to register as homeless. Has anybody else been in this situation. Can anyone give me any advice please xx

 

[try again]

Sorry can't give you any advice but what a horrible situation.

 

[SAP]

@Alex53 , have a look to see if there is a carers centre near to you . Believe me this is not the first time they will have heard of this.

Support where you live | Carers UK

www.carersuk.org

Alternatively contact the CAB for support. I’m wondering if you could not claim housing benefit to cover the costs?

 

[Alex53]

@Alex53 , have a look to see if there is a carers centre near to you . Believe me this is not the first time they will have heard of this.

Support where you live | Carers UK

www.carersuk.org

Alternatively contact the CAB for support. I’m wondering if you could not claim housing benefit to cover the costs?

Thank you. I will do this tomorrow x

 

[Alex53]

Sorry can't give you any advice but what a horrible situation.

Very worrying. Thank you x

 

[SeaSwallow]

Such a difficult situation for you @Alex53 You might find it useful to contact the Alzheimer's Society helpline - i have attached their contact details below.

Contact us

Find out how to get in touch with Alzheimer's Society by phone, email, post or online.

www.alzheimers.org.uk

 

[sdmhred]

How very stressful 😢😢

I would also contact the citizens advice bureau. They will also be able to advise you about the benefits you can apply for in the mean time.

Do you know anything about the landlord? If they are sympathetic they may agree to some sort of rent arrangement whilst you get back on your feet.

it’s so awful that carers end up in this situation- you have done your very best for your mum and that can’t be undone

 

[Hebridean Lass]

Hi. My name is Alex and I’ve been caring for my mum for over 2 years now and a year ago had to give up work to look after her full time. She has end stage dementia and because of a breakdown I had from carer burnout just before Christmas I put her into respite for 2 weeks. My brother and I picked her up Christmas Eve to bring her home but she is just worse than ever. Doubly incontinent, lost mobility, aggressive and agitated, doesn’t know who I am. It’s just heartbreaking .. She has been smearing feceas everywhere and I just can’t cope. I got in touch with Admiral Nurses who have said she needs 24hr supervision now and social services are looking to find her somewhere permanent. The problem I have now is because I live with and care for my mum, she rents a house from private landlord and claims housing benefit. I have not got power of attorney and will not be able to afford to live here, I phoned housing benefit today and they said I will not be able to stay in our home unless I can afford the rent, which I can’t and will have to register as homeless. Has anybody else been in this situation. Can anyone give me any advice please xx

Have you tried Citizens Advice? Book an appointment and go and see them. They are very knowledgeable and supportive. I am no expert in this area, but I would imagine the best thing to do would be to request the landlord or agent to enter into a tenacy agreement with you, rather than your mother. You can then claim HB. You may need a guarantor, that is someone willing to pay 5he rent if you default. Im not suggesting you would default, it’s just that this is what agents expect. Also I would talk to your local council housing department.

 

[Alex53]

Have you tried Citizens Advice? Book an appointment and go and see them. They are very knowledgeable and supportive. I am no expert in this area, but I would imagine the best thing to do would be to request the landlord or agent to enter into a tenacy agreement with you, rather than your mother. You can then claim HB. You may need a guarantor, that is someone willing to pay 5he rent if you default. Im not suggesting you would default, it’s just that this is what agents expect. Also I would talk to your local council housing department.

Thank you so much. I know my landlord well so will ask if I can be put on tenancy for a couple months until I get myself sorted. And I am going to phone council housing now. Thank you for your advice x

 

[Alex53]

How very stressful 😢😢

I would also contact the citizens advice bureau. They will also be able to advise you about the benefits you can apply for in the mean time.

Do you know anything about the landlord? If they are sympathetic they may agree to some sort of rent arrangement whilst you get back on your feet.

it’s so awful that carers end up in this situation- you have done your very best for your mum and that can’t be undone

Thank you for your advice x

 

[Alex53]

Such a difficult situation for you @Alex53 You might find it useful to contact the Alzheimer's Society helpline - i have attached their contact details below.

Contact us

Find out how to get in touch with Alzheimer's Society by phone, email, post or online.

www.alzheimers.org.uk

Thank you that is helpful x