Support for sole carer of person with Dementia

lr1277

Here is one more bit of experience which may or may not help.

I mentioned infections earlier. Dad frequently got chest or bladder infections. We did not know he had the infection by looking at him and he didn't say anything. The first sign is that his cognitive ability decreased during an infection. This we could eventually tell. When the doctor time he would examine dad, declare dad had an infection and prescribe antibiotics.

The doctor said as dad was bedbound, the fluid was not draining from his chest. This lack of drainage contributed to the infection's development. But if dad spent time sitting up or walking this would help with the fluid drainage and hence reduced infection.

So we rented an electric recliner chair. The carers would put dad in the chair for a couple of hours in the morning and a couple of hours in the afternoon. Also he if he was upto it, they would take him for a short walk along the corridor. All these actions helped reduce his infections.

Albermarle

lr1277 said:

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.

A care home would cost a lot more than £1200 a month, more like £1200 a week .

Fruitcake

@lr1277 When my dad was diagnosed with dementia, we managed to get a 25% reduction in council tax for him and my mum. His GP wrote a letter that we then sent to the relevant council department who backdated the reduction to the date of the application. It wasn't a huge amount, but every penny saved help fund dad's care needs.

We also saw a SOLLA (Society Of Later Life Advisor) agent who advised us on what can be claimed and then helped us with savings and investments. These are financial advisors who are specially trained and licenced to deal with, well, financial advice on later life (beyond just pensions and ISAs etcetera).

We got a free initial appointment and a lot of useful advice including how to claim for Funded Nursing Care. and later on, Continuing Health Care allowances. It may be worth you talking to a SOLLA agent if there is one in your area.

As for getting care at home, and as already advised, you can pay a private company to do this without an NHS/social services assessment beforehand. They are not cheap, but there are some good companies out there.

Savvy_Sue

Another slightly random thought is to make sure Mum has a Carer's card of some kind on her so that if anything happens to her, people know there's someone relying on her at home.

And it may be too late for this case, but a friend was describing how she copes with her DH: ATM he can do things independently but needs a lot of prompting, so for example he goes to the gym for a session with a PT and then walks home, OR he might be going somewhere else. So she puts a note in his pocket, AND asks the PT to remind him where he's going as he leaves.

She has a tracker on his phone too, and I wish something like that had been possible for FiL: towards the end he sometimes wandered. But he'd never had a mobile phone, and he'd have tossed anything unexpected out of his pockets, because it wasn't his ...