Diagnosis - new to group

[Jules1702]

My mother has just been diagnosed with Advanced Vascular Dementia. We have suspected she has had the condition for at least a couple of years now and it has taken this time to eventually get the diagnosis for her. I have been her main carer for many years and following a recent discharge from hospital Mum now has carers coming in four times a day (not currently linked to the Dementia). I am due to have a financial assessment tomorrow and am still awaiting a needs assessment from the local authority.

I am feeling very low in myself and am struggling with the whole thing. Mum unfortunately is no longer my Mum and can be quite aggressive on occasions which is heart breaking. The carers come in for a total of 2 hours a day and try to give her personal care and feed her although I know this is not very successful on a regular basis. Mum's weight has dropped dramatically. She is no longer able to function properly and cannot remember her address, children's names etc. (all the usual signs I understand). I am unable to go to work or leave the house for any particular amount of time for fear of Mum wondering (she lives in an annexe with myself and my husband) and I feel like a prisoner in my own home.

I do not want Mum to go into residential care but to be honest feel this would be the best thing for her as she gets little stimulation here and of course the lockdowns following covid have not helped. I just feel desperate and cannot see a way forward at present.

 

[Spamar]

No, not you, it’s your mum who will have the financial assessment. Your money is just that, your money.

 

[karaokePete]

Hello and welcome @Jules1702

That does sound like 24hr care may needed as it's not fair that you should find yourself in this situation, letting dementia destroy your life as well. There does come a time when 'needs' have to outweigh 'wants' and you may have reached that stage.

If you talk to the experts on the support line they may be able to give you some pointers. The number is
tel:0333 150 3456

 

[Shedrech]

hello @Jules1702
a warm welcome to DTP

it sounds as though it is time to be considering residential care for your mum ... there's often only so much that can be done by family, especially if wandering is happening, and your health and welfare matter too

take the opportunity of the assessments to be brutally honest about what is happening with your mum aas she needs to be safe

 

[Bunpoots]

Welcome from me too @Jules1702

I remember realising that I could no longer look after my dad the way he needed and still not wanting him to go into residential care, even though I was run ragged and he didn’t recognise his own home. Eventually I had no choice...and I was pleasantly surprised at how well carehome life suited him. If I’d known I’d have got him a place sooner. It not only gave my dad the care he needed and made his life much more comfortable - it made my life better too.

If you feel you can no longer look after your mum (and there is no shame in admitting this) you will have to make this clear at the needs assessment as they will let you carry on until you drop!

 

[Jules1702]

Thank you for this advice.

 

[Jules1702]

hello @Jules1702
a warm welcome to DTP

it sounds as though it is time to be considering residential care for your mum ... there's often only so much that can be done by family, especially if wandering is happening, and your health and welfare matter too

take the opportunity of the assessments to be brutally honest about what is happening with your mum aas she needs to be safe

Hello and welcome @Jules1702

That does sound like 24hr care may needed as it's not fair that you should find yourself in this situation, letting dementia destroy your life as well. There does come a time when 'needs' have to outweigh 'wants' and you may have reached that stage.

If you talk to the experts on the support line they may be able to give you some pointers. The number is
tel:0333 150 3456

Thank you for your advice, I am still waiting to hear about the needs assessment although the council have been quick enough to sort the financial assessment which is taking place today, it all seems back to front to me.

 

[Jules1702]

hello @Jules1702
a warm welcome to DTP

it sounds as though it is time to be considering residential care for your mum ... there's often only so much that can be done by family, especially if wandering is happening, and your health and welfare matter too

take the opportunity of the assessments to be brutally honest about what is happening with your mum aas she needs to be safe

Thank you for this, I must admit when I was speaking to the lady in Adult Social Services I felt that I was being judged by her for the fact I was considering residential care at all.

 

[kindred]

Thank you for this, I must admit when I was speaking to the lady in Adult Social Services I felt that I was being judged by her for the fact I was considering residential care at all.

So many of us have been through this with the social services! Of course you are considering residential care. Do not allow them to bully you. All the very best to you. Kindred

 

[Jules1702]

So many of us have been through this with the social services! Of course you are considering residential care. Do not allow them to bully you. All the very best to you. Kindred

Thank you. I am so glad I found this forum, feels like I am not so alone.

 

[Shedrech]

hi @Jules1702
yes, you're right, the care needs assessment should be done first
you may find that if your mum is considered to be self-funding the LA will suggest you get on and arrange care yourself, without conducting an assessment ... let them know that you understand that your mum is entitled to an assessment regardless of how care fees are paid
this will help explain

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

if she is self-funding and you have LPAs in place, then if your mum agrees you can go ahead and make any arrangements you think are in your mum's best interests
if your mum doesn't agree and you think she has capacity to make that decision, her wishes need to be taken into account
if you believe she no longer has capacity to make this decision, some 'love lies'/fudging may help eg suggesting a holiday, a break while some work is done on the house or you go away

if your mum is not self-funding the LAmay insist on putting more care at home in place ... make clear to them that the current care isn't working and that your mum is unsafe because of her wandering ... and that you cannot keep on providing the level of care you do