Drowning in leaflets already!

[Nickinotnikki]

Hello, newbie here. Just introducing myself and my situation (sorry for the length).

Mum (80s) just diagnosed with vascular dementia though I suspect it’s been developing for several years since a cardiac arrest a few years back. She’s fiercely independent, lives alone. I live 100+ miles away and my sister lives abroad.

Am hoping this website will help me retain my own sanity as I’m not doing so well at the mo. She’s gotten much worse since Christmas (lots of TIAs perhaps). Incontinence, forgets how to walk sometimes, not eating, not taking pills, vagueness etc etc.

Just arranging home help (AgeUK) 3xweek but suspect we’ll soon have to book daily care visits and eventually find a care home. So bloody difficult. And self funded. We have attendance allowance at least.

So many decisions ... and all I want to do is run away, if I’m honest.

And I’m surprised how, once we got the diagnosis, we appear to have been left on our own except for one social worker visit which has produced nothing concrete. Seems you have to fight for everything but I don’t have the strength!!

I am drowning in leaflets (as per the subject heading) but what I really need is practical advice. So here’s hoping I can find what I need here, scouring the threads!

 

[canary]

Hello @Nickinotnikki and welcome to DTP.

Yes, I remember coming out of the memory clinic with mum and a fist full of leaflets. Then nothing more.
Im afraid that there is very little help for people with dementia and their carers, but fortunately DTP is a gold mine of information and support.

Im glad you have got Attendance Allowance; have you also got POA. If not, get it done PDQ before it is too late!
You can also claim Council Tax disregard due to "severe Mental Impairment" (lovely wording hey? )

If you have got any specific questions do ask - Im sure someone will know the answer.

 

[Izzy]

Hi @Nickinotnikki and welcome to Dementia Talking Point. I'm sure you will find this a welcoming and helpful place to be.

 

[Sirena]

I know what you mean about wanting to run away. I am my mother's only relative so despite living 2.5 hours away, four years ago I found myself having to organise everything. I am assuming you have POA?

I had the same experience with social workers, they assessed my mother but they would offer nothing as she was self funding. The second time I contacted them, at a point when she urgently needed daily care - they took so long to reply that I'd already arranged care by the time they arrived. The SW said "it's much better care than we would provide" and that was the end of her input.

To find the care agency, I googled 'care at home' and my mother's area of London, and found a couple of agencies and called them. The manager will assess your mother to see what help she needs and you can decide how long you want a carer each day. I chose a 4 hour block from 9-1. My friend had told me her mother got very confused by carers coming and going several times a day, and I thought one four hour block would give them time to do something useful. They prepared her breakfast and lunch and ensured she ate them, took her shopping, to the park, to appointments. They also did her housework and laundry and made sure she was washed and appropriately dressed. Anything she needed - they did it. The arrangement lasted for 18 months and they did a great job - as her needs increased I added an hour or two in the evening too. They were lovely people and it was very reassuring knowing I could count on them.

 

[Izzy]

Not sure if you're after this kind of thing but you can see what local groups etc might be near you if you put your postcode in the box in this link.

https://www.alzheimers.org.uk/find-support-near-you

 

[Jale]

Hi Nickinotnikki, do you have Admiral Nurses in your area (not your Mum's) because they support carers not the person with dementia. I'm sure someone here will have a link (sorry I'm useless at that) or maybe you could try googling or ask the social worker.

The Admiral Nurse that came to see me was worth her weight in gold and was so helpful at pointing us in the right direction, there is information and help out there but it is a quagmire sometimes trying to sort through it all.

 

[Nickinotnikki]

Hi Nickinotnikki, do you have Admiral Nurses in your area (not your Mum's) because they support carers not the person with dementia. I'm sure someone here will have a link (sorry I'm useless at that) or maybe you could try googling or ask the social worker.

The Admiral Nurse that came to see me was worth her weight in gold and was so helpful at pointing us in the right direction, there is information and help out there but it is a quagmire sometimes trying to sort through it all.

No admiral nurses in either of our area I’m afraid but they do look like they are a godsend ... just not enough of them :-(

 

[Nickinotnikki]

Hi, yes we thankfully sorted PoA a couple of years ago.

Re: care agencies, we have a few to choose from, but the “best” charges £25/hr ... so if we ended up with four hours a day (which would be lovely) it’d be the same as a care home yet the ‘cheaper’ ones have a worse CQC ( or whatever it is) score ... and we want to do the best for her. I have a shed load of numbers to call next week ...I’m just finding it mentally draining to have to make so many decisions on my own. I constantly worry I’ll make the wrong choice.

I know what you mean about wanting to run away. I am my mother's only relative so despite living 2.5 hours away, four years ago I found myself having to organise everything. I am assuming you have POA?

I had the same experience with social workers, they assessed my mother but they would offer nothing as she was self funding. The second time I contacted them, at a point when she urgently needed daily care - they took so long to reply that I'd already arranged care by the time they arrived. The SW said "it's much better care than we would provide" and that was the end of her input.

To find the care agency, I googled 'care at home' and my mother's area of London, and found a couple of agencies and called them. The manager will assess your mother to see what help she needs and you can decide how long you want a carer each day. I chose a 4 hour block from 9-1. My friend had told me her mother got very confused by carers coming and going several times a day, and I thought one four hour block would give them time to do something useful. They prepared her breakfast and lunch and ensured she ate them, took her shopping, to the park, to appointments. They also did her housework and laundry and made sure she was washed and appropriately dressed. Anything she needed - they did it. The arrangement lasted for 18 months and they did a great job - as her needs increased I added an hour or two in the evening too. They were lovely people and it was very reassuring knowing I could count on them.

 

[Nickinotnikki]

Thank you, yes we have POA. We also had the needs assessment thing - after a stressful Easter the doctor suggested we get one arranged before the memory clinic assessment came through. But since then we haven’t heard back - are we meant to get some kind of written report from the social worker with a care plan, even if we are self funding? I don’t even have her contact details, just the number of the local adult social care dept!

Hi NickinotNikki
Welcome to the forum. Lots of advice and support here - and you don't have to read any leaflets if you don't want to.
You have a diagnosis, have attendance allowance and have at least had contact with a social worker - so you're making some progress although it may not feel like it. But it's a confusing and stressful time.
Do you have Lasting Power of Attorney? If not, and if your mother still has capacity to agree to it, that might be a good next step.
Social workers often step back if there are family members providing support - and especially if the person with dementia (PWD) will be self-funding. Contact them again and insist on an assessment of needs. Best wishes.

 

[Sirena]

Hi, yes we thankfully sorted PoA a couple of years ago.

Re: care agencies, we have a few to choose from, but the “best” charges £25/hr ... so if we ended up with four hours a day (which would be lovely) it’d be the same as a care home yet the ‘cheaper’ ones have a worse CQC ( or whatever it is) score ... and we want to do the best for her. I have a shed load of numbers to call next week ...I’m just finding it mentally draining to have to make so many decisions on my own. I constantly worry I’ll make the wrong choice.

My mother's care agency was £22 p.h. and £24 p.h. weekends (2018 prices). Her CH room is £800 pw.

Staying at home was more expensive than a CH, because as well as the care fees she had to pay her rent of £1k a month, plus food, utilities. But I had to weigh up costs versus 'what she wanted'. At that point she could still have quality of life at home and I didn't feel she was ready for a CH. You're always doing a balancing act and as you say, you always think you are doing the wrong thing (and not enough of it).

I chose 4 hours mainly because one of my mother's main problems was not eating, and 4 hours meant she definitely got two supervised meals, there was no point just leaving food and assuming she would eat it - she wouldn't. And I also wanted the carers to form a relationship with her and give her a quality of life, which they did - she was really fond of her two main carers.

See how you feel about the representatives of the agencies. I just fell in love with ours when the manager said "I know it's upsetting for you but we all love our jobs". Talking to her was like being wrapped in a warm dressing gown drinking a hot chocolate. Sounds daft, but that's how I chose!