When my OH was first diagnosed with Alzheimer's some years ago, I was given a booklet from the LA, being a guide to care services and related info, with annual updates.
In this booklet it says the dementia support offered consists of (i) info and advice to support "living well" with dementia (GRRRR! - I now really hate that phrase), (ii) training for carers (one-to-one or online info sessions, which have in fact been quite good)), (iii) info about local dementia groups and activities (which we attended and were OK until my OH's deterioration took her beyond being able to participate), (iv) info on volunteer befrienders.
I wasn't told much else. In fact, Adult Social Services said, when they found out I would be a self funder, that you're on your own!!
It was the GP's practice nurse who told me about the charity Mind, and that they provide "sitters" for a carer to have respite and be able to go out, with confidence that PWD was with a competent professional. I approached Mind about this. Completed their form for info, and was put on their waiting list. Then, I got a call to say they could arrange a sitter to be with my OH for 3 hours - in one session -per week , at a time of my choosing. I chose 3 hrs each Wed morning, 9.30am to 12.30pm. After two sessions trial, all was well and I've had this for quite some while now. The system is that the LA pays Mind and the service is free to me.
I find this 3 hr session INVALUABLE. I can arrange a wide variety of things that need to be done out of the house - eg, my dentist appointments, doctor or hospital appointments (I have health issues too!), getting the car serviced, taking the lawn mower for service, shopping, meeting a friend for a chat and coffee, playing tennis with other old codgers like me. I really enjoy my Wed mornings, even if it's errands.
Then our sitter said they had been told that there would be some cut backs because of budgetary reasons. This didn't affect me, but meant that LA would not pay for as many new sitters as they had been paying. That was last year.
Now, I have received a letter from LA Adult Social Services giving me notice that from Oct they will now be charging the carers for this service on the usual means tested basis. The letter doesn't say anywhere what the charge is to be. So my choice is now to pay for my Wed morning respite or lose it.
There was no consultation (and technically, there doesn't have to be). I have written a letter of complaint to assuage my feelings, knowing my complaint won't change anything (and I hope it won't jeopardise my current position). I know that there are people less fortunate than me who won't be able to afford to pay to continue the service. I feel that "they" at the ASS don't understand the intensity, relentlessness, stressfulness, emotional impact, continuing tiredness, loneliness, etc, etc that 24/7 carers put in for their loved ones, at an enormous saving to the system (if they chose not to be cares), and how much having regular respite (even if for short time periods) is wanted, NEEDED, to retain sanity and to be able to keep going.
If you've read this far, thank you.
If it hasn't happened where you are, it may well be coming soon!
In this booklet it says the dementia support offered consists of (i) info and advice to support "living well" with dementia (GRRRR! - I now really hate that phrase), (ii) training for carers (one-to-one or online info sessions, which have in fact been quite good)), (iii) info about local dementia groups and activities (which we attended and were OK until my OH's deterioration took her beyond being able to participate), (iv) info on volunteer befrienders.
I wasn't told much else. In fact, Adult Social Services said, when they found out I would be a self funder, that you're on your own!!
It was the GP's practice nurse who told me about the charity Mind, and that they provide "sitters" for a carer to have respite and be able to go out, with confidence that PWD was with a competent professional. I approached Mind about this. Completed their form for info, and was put on their waiting list. Then, I got a call to say they could arrange a sitter to be with my OH for 3 hours - in one session -per week , at a time of my choosing. I chose 3 hrs each Wed morning, 9.30am to 12.30pm. After two sessions trial, all was well and I've had this for quite some while now. The system is that the LA pays Mind and the service is free to me.
I find this 3 hr session INVALUABLE. I can arrange a wide variety of things that need to be done out of the house - eg, my dentist appointments, doctor or hospital appointments (I have health issues too!), getting the car serviced, taking the lawn mower for service, shopping, meeting a friend for a chat and coffee, playing tennis with other old codgers like me. I really enjoy my Wed mornings, even if it's errands.
Then our sitter said they had been told that there would be some cut backs because of budgetary reasons. This didn't affect me, but meant that LA would not pay for as many new sitters as they had been paying. That was last year.
Now, I have received a letter from LA Adult Social Services giving me notice that from Oct they will now be charging the carers for this service on the usual means tested basis. The letter doesn't say anywhere what the charge is to be. So my choice is now to pay for my Wed morning respite or lose it.
There was no consultation (and technically, there doesn't have to be). I have written a letter of complaint to assuage my feelings, knowing my complaint won't change anything (and I hope it won't jeopardise my current position). I know that there are people less fortunate than me who won't be able to afford to pay to continue the service. I feel that "they" at the ASS don't understand the intensity, relentlessness, stressfulness, emotional impact, continuing tiredness, loneliness, etc, etc that 24/7 carers put in for their loved ones, at an enormous saving to the system (if they chose not to be cares), and how much having regular respite (even if for short time periods) is wanted, NEEDED, to retain sanity and to be able to keep going.
If you've read this far, thank you.
If it hasn't happened where you are, it may well be coming soon!
