Support for sole carer of person with Dementia

devonian20

Hi all
My mum is the sole carer for my Dad who was diagnosed with A-typical dementia 18-24 months ago and it has progressed quite rapidly.  Mum is struggling and it is at the point where she needs time to recuperate.  We are looking into things where Dad can go for a day a few times a week.  He has attended one or two sessions at one place but mum is worrying about the cost. 

Financially speaking they are in a reasonable position and so probably dont qualify for much but Mum is worried about the possibility of money running out when he needs to go into a care home.  They changed their house to tenants in common and they get the allowance for Dad which is about £400 a month. Mum has just turned 66 and now gets her pension - so she no longer qualifies for the carers allowance.  The place Dad has previous attended we have costed and for Dad to attend one day a week and also a half day works out about £650 ish a month.

Apart from the lack of sleep (Dad has lost concept of time and is up at all hours) and the constant need to watch him, Mum is struggling with Dads anxiety and the local care team havent been very good - Mum is constantly chasing them but they've either no time or just dont come back to her.

Can anyone please help with advice on support that may be available?

KxMx

Mum should request a carers assessment

https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/

Alongside a needs assessment for Dad

https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

There might be a local carers support group, Carers UK or Age UK could also be sources of support and advice. 

Keep_pedalling

You need to speak to his social worker to see about respite care. 

You mum won’t lose everything, the house is disregarded in any financial assessment as she will still be living there. 

Your mother may no longer qualify for CA but your father should qualify for attendance allowance which is not means tested.

What sort of savings does your father have ( sole assets and 50% of joint savings?

lr1277

My dad had Lewy Body Dememtia. He had a hospital stay for falls and really got on with the doctor. He asked if the doctor would seem him privately which he did. It was whilst seeing him privately he got the dementia diagnosis.

Anyway my point is that my dad was having trouble sleeping and some sundowning. The doctor prescribed him something that would both help him sleep and lift his mood. Sorry cannot remember its name. They did have to fiddle about with the dose but eventually got it right. Anyway on being told about the prescription, the GP prescribed this drug.

Does your dad's doctor know about his sleeping habits and how it is affecting your mum. When his GP sees him, is your mum in the room at the same time offering her experience? If it hasn't already been done, perhaps worth setting up?

Savvy_Sue

The important thing to suggest to Mum is that she doesn't pretend things are better than they are, when she does speak to social worker / care team etc, and if she's in a bad way herself she should speak to her GP - no guarantee that she'll be able to do that any faster than anyone else, but worth a try. 

We (Bristol) have a local Dementia Action Alliance group: it would be worth seeing if you have one locally too. 

I don't know if the Radio 4 programmes about Dementia: Unexpected Stories of the Mind would be of any help, or would cover the kind of dementia your father has - https://www.bbc.co.uk/programmes/m001kww0. The BBC Action Line has a number of suggestions as well: https://www.bbc.co.uk/programmes/articles/1Y8B7y39T07GnTlMsLPJG2S/information-and-support-dementia-alzheimer-s

BrilliantButScary

I would recommend the following website:

www.alzheimers.org.uk

It should help with providing information for the questions you have now and in the future. There is a facility on the website to search for local information using your postcode. Does your Dad have Lasting Power of Attorneys in place? 

Best Wishes to you and your family.

elsien

And information about paying for care at home because he could have carers coming in each day to take some of the stress of your mother.
Paying for care at home | Age UK
And perhaps your mother needs to start thinking about the future, for if staying at home just isn't possible for him. My aunt had to give up caring (she was in her eighties) when she started having ministrokes because of the stress,
As above, the property they live in would be disregarded, but other income and assets may be taken into account. 
There is more detailed information on the website but this is a good overview.
Paying for Permanent Residential Care | Paying For a Care Home | Age UK

Your mother needs to be aware that social services are stretched to the point of breaking. They are triaging people for assessment according to priority. So she needs to be very honest about the support that your dad needs and the impact it is having on her if care act assessments do need to take place about how close they are to things breaking down. Otherwise they will be at the bottom of a very long list. 

lr1277

For about 9 months 2 years ago, my dad had 2 carers come to the house 4x a day. The care agency was recommended by social services or some NHS body. Sorry don't remember. The agency was staffed with immigrants who were lovely and my dad got on with them. Near the end my mum felt comfortable leaving them alone with my dad.

For that level of care in South Hertfordshire, I think it cost £1000 to £1200 per month (to the best of my recollection). I know this is more than the figure your mum is worried about. But for peace of mind it might be worth it.

The agency staff came in at breakfast, lunch, mid-afternoon and early evening. 3 of those visits were to feed dad and attend to any personal needs. They would also get him set up for sleeping with that last visit of the day. The mid-afternoon visit was to help with his mobility and reduce the chance of infection. After each infection dad was always worse than before the infection. And he never got back up to the cognitive level prior to the infection. In that way I called the Lewy Body Dementia a step down disease.

Mum wanted the agency staff in as she was not confident dad would take food or medicine from her. Whereas the agency carers could generally persuade dad to take the food and medicine. Though mum would make all of dad's food.

Talking about lack of sleep, before dad was bedbound at home, mum would go to sleep between 10pm and midnight. Waking up at 7-8am.

However when dad was bedbound at home, she would sleep lightly listening out for dad falling out of bed. (She slept in the next room because of the sundowning). She would wake up at 5am to do her things before attending to dad. She was tired all day She took a 30-60 min nap in the afternoon. However this was sometimes difficult as health/care workers (not the agency staff) would want to see dad during her nap time. Since she couldn't nap, she was even more tired. Dad passed over 2 years ago and she still hasn't got out of the routine she established when looking after dad. Whether that is good or bad I do not know.

A 2nd agency was recommended but their hourly rates were a minimum of £4/hr/person or £4/session/person more expensive than the agency we used. This difference adds up over a month.

devonian20

Thank you everyone.  I will talk to mum and come back with answers to all questions in one go so it isnt all piecemeal.  Really appreciate you all taking the time to reply x

Albermarle

For about 9 months 2 years ago, my dad had 2 carers come to the house 4x a day. The care agency was recommended by social services or some NHS body. Sorry don't remember. The agency was staffed with immigrants who were lovely and my dad got on with them. Near the end my mum felt comfortable leaving them alone with my dad.

For that level of care in South Hertfordshire, I think it cost £1000 to £1200 per month (to the best of my recollection). 

That monthly figure looks a bit low? Typical cost is about £15 an hour for agency care staff. If they only come for short visits, they may charge more as they 'waste' more time travelling back and forth .

Carers from other countries ( they are not usually immigrants as such, but on long term work visas) can be more reliable as they are often here without family, so tend not to turn up late because they had to drop their kids off at school, or take their Mum to the Doctors etc 

OP - You can pay for carers directly without a social services assessment ( if you can afford it) but it is still best to push for a proper assessment anyway at the same time. At least then your Mum and Dad will be on their books in case the money runs out, or there is a big crisis. 

lr1277

Albermarle said:

For about 9 months 2 years ago, my dad had 2 carers come to the house 4x a day. The care agency was recommended by social services or some NHS body. Sorry don't remember. The agency was staffed with immigrants who were lovely and my dad got on with them. Near the end my mum felt comfortable leaving them alone with my dad.

For that level of care in South Hertfordshire, I think it cost £1000 to £1200 per month (to the best of my recollection). 

That monthly figure looks a bit low? Typical cost is about £15 an hour for agency care staff. If they only come for short visits, they may charge more as they 'waste' more time travelling back and forth .

Carers from other countries ( they are not usually immigrants as such, but on long term work visas) can be more reliable as they are often here without family, so tend not to turn up late because they had to drop their kids off at school, or take their Mum to the Doctors etc 

OP - You can pay for carers directly without a social services assessment ( if you can afford it) but it is still best to push for a proper assessment anyway at the same time. At least then your Mum and Dad will be on their books in case the money runs out, or there is a big crisis. 

Yes you maybe right. I saw the final bill and that is what I remember but could be wrong.

At the time the rates were for one person for 30 mins something like £20-25. More for evenings, weekends and  bank holidays. Then double that for the 2 person team that attended.

The reason I remember the figure was that I think it would have been approximately the same price as putting dad in a care home. We did look into that at the time.

However dad wanted to be at home and dad's doctor advised outcomes were better at home than in an institutional setting like a hospital or care home.