I just called a dementia helpline to see if there was any advice regarding hours for a high care package. I have hung up feeling more frustrated than before. Firstly, please, if you are giving advice, please try to let the caller speak and listen to what they're saying.
I realise most TP members are only familiar with the UK system but I really just need to let off some steam. We have government funded care packages which are designed to enable the frail aged to remain at home as long as possible. After an assessment, approval is given for the level of care needed. There's a Community Aged Care Package (CACP) which provides up to 6 hrs a week, only M-F, 9am-4pm; an Extended Aged Care At Home Package (EACH), which is 16 hrs a wk; and an Extended Aged Care At Home - Dementia (EACHD) package which I was told by the assessment team was 26 hrs a wk, 7 days, including early and late hrs.
Dad is 86, has advanced Alzheimer's, diagnosed 7 years ago, he is at home with Mum 82 as his carer, I gave up work early on to give them the help they needed. Mum didn't drive so I filled in there, but now, as Dad has deteriorated, I am now doing most showers, shopping, cook meals, some respite, and all trips to appointments.
They currently have the CACP which does 2 hrs housework, a couple of showers, and a tiny bit of in-home respite. Mum was hesitant at first to have people come in and do this, but they are all lovely and she is very happy with the provider. After a new assessment, they were approved for the big guns, the EACHD package. Yay, I thought, we can now get help on weekends and early or late in the day. Sadly, our current provider was not approved for these packages in Mum's area, so we needed to find another one. Since I do quite a bit, Mum really needed more respite and maybe someone to come in every day early, get Dad up, dressed and give him breakfast, so she could recover from the 5 times a night she wakes to help him with toileting.
There are very long waits for these packages and I phoned around over and over, squeaky hinge, and found an agency with an availability. They came and did the usual 2 hr interview, and at the end said we could have 10 hrs a week, weekdays only, and btwn 9-5pm. We were shocked, where was the 26 hrs we were told about? Where were the weekends, and early starts? She said 26 hrs was unheard of and nobody could do that, and their staff didn't do weekends. They also only offered exactly what she was getting now in services, which would really only save me coming and doing the things I do, like shopping, driving, meals, cleaning, and showers.
Mum and I felt changing from a wonderful provider to an unknown one for the sake of an extra 4 hrs a wk, which didn't give Mum any real benefit was worthless, so we passed.
I decided today to call the helpline and find out for certain if that was true. I was told, yes, 10 hrs is about it because, "we have 110,000 people with dementia in this state, and the govt can't pay for any more." She said if Dad needs that much care we would need to put him in a nursing home where they have 3x8 hr shifts to care for people. I was stunned, yes, I realise it will be inevitable, but at the moment he can speak and is continent, if unaware of the purpose of a toilet, He is blind and can't do anything else at all unaided, walking is now very difficult and he can't be left unattended for more than minutes.
Yes, yes, I know, he is lots of work, but Mum and I feel we can go on if we just get that bit of extra support. The idea of these packages of high care is so people stay home as long as possible, to free up places for people with nobody to care for them, or little help available. And why tell us it's 26 hrs a week, but wait, no, not really?
Sorry, I was just so frustrated that my call was quite unsympathetic, other than, yes, it's a dreadful situation, isn't it? Better put him in a home.
I needed to vent, and rant. And I am sure I have heard of others saying they received far more hours than we were offered. I think one issue is that we live in an area with some low income population and the govt only allocates a certain number of packages to each area and ours is stretched to beyond breaking. And if I didn't push and research and investigate all options for my parents from Day 1, they would have no help at all now. I don't say that for pats on the back, I say it's a clear failing in the system. A diagnosis should mean an immediate chain that comes into effect, a case manager who organises all that's available or at the very least gives you a detailed procedure to follow. This does not happen. 7 years ago we were referred to a geriatrician who handed me a couple of pamphlets and a small book and DVD explaining dementia. I should have my doctorate by now with the research I have done, but knowing what happens and getting the help to cope are 2 different things
if you've stuck it out reading my rant for this long I thank you so much.
Stephanie
I realise most TP members are only familiar with the UK system but I really just need to let off some steam. We have government funded care packages which are designed to enable the frail aged to remain at home as long as possible. After an assessment, approval is given for the level of care needed. There's a Community Aged Care Package (CACP) which provides up to 6 hrs a week, only M-F, 9am-4pm; an Extended Aged Care At Home Package (EACH), which is 16 hrs a wk; and an Extended Aged Care At Home - Dementia (EACHD) package which I was told by the assessment team was 26 hrs a wk, 7 days, including early and late hrs.
Dad is 86, has advanced Alzheimer's, diagnosed 7 years ago, he is at home with Mum 82 as his carer, I gave up work early on to give them the help they needed. Mum didn't drive so I filled in there, but now, as Dad has deteriorated, I am now doing most showers, shopping, cook meals, some respite, and all trips to appointments.
They currently have the CACP which does 2 hrs housework, a couple of showers, and a tiny bit of in-home respite. Mum was hesitant at first to have people come in and do this, but they are all lovely and she is very happy with the provider. After a new assessment, they were approved for the big guns, the EACHD package. Yay, I thought, we can now get help on weekends and early or late in the day. Sadly, our current provider was not approved for these packages in Mum's area, so we needed to find another one. Since I do quite a bit, Mum really needed more respite and maybe someone to come in every day early, get Dad up, dressed and give him breakfast, so she could recover from the 5 times a night she wakes to help him with toileting.
There are very long waits for these packages and I phoned around over and over, squeaky hinge, and found an agency with an availability. They came and did the usual 2 hr interview, and at the end said we could have 10 hrs a week, weekdays only, and btwn 9-5pm. We were shocked, where was the 26 hrs we were told about? Where were the weekends, and early starts? She said 26 hrs was unheard of and nobody could do that, and their staff didn't do weekends. They also only offered exactly what she was getting now in services, which would really only save me coming and doing the things I do, like shopping, driving, meals, cleaning, and showers.
Mum and I felt changing from a wonderful provider to an unknown one for the sake of an extra 4 hrs a wk, which didn't give Mum any real benefit was worthless, so we passed.
I decided today to call the helpline and find out for certain if that was true. I was told, yes, 10 hrs is about it because, "we have 110,000 people with dementia in this state, and the govt can't pay for any more." She said if Dad needs that much care we would need to put him in a nursing home where they have 3x8 hr shifts to care for people. I was stunned, yes, I realise it will be inevitable, but at the moment he can speak and is continent, if unaware of the purpose of a toilet, He is blind and can't do anything else at all unaided, walking is now very difficult and he can't be left unattended for more than minutes.
Yes, yes, I know, he is lots of work, but Mum and I feel we can go on if we just get that bit of extra support. The idea of these packages of high care is so people stay home as long as possible, to free up places for people with nobody to care for them, or little help available. And why tell us it's 26 hrs a week, but wait, no, not really?
Sorry, I was just so frustrated that my call was quite unsympathetic, other than, yes, it's a dreadful situation, isn't it? Better put him in a home.
I needed to vent, and rant. And I am sure I have heard of others saying they received far more hours than we were offered. I think one issue is that we live in an area with some low income population and the govt only allocates a certain number of packages to each area and ours is stretched to beyond breaking. And if I didn't push and research and investigate all options for my parents from Day 1, they would have no help at all now. I don't say that for pats on the back, I say it's a clear failing in the system. A diagnosis should mean an immediate chain that comes into effect, a case manager who organises all that's available or at the very least gives you a detailed procedure to follow. This does not happen. 7 years ago we were referred to a geriatrician who handed me a couple of pamphlets and a small book and DVD explaining dementia. I should have my doctorate by now with the research I have done, but knowing what happens and getting the help to cope are 2 different things
if you've stuck it out reading my rant for this long I thank you so much.
Stephanie