When help isn't really help

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
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
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Stephanie - if you were in the UK I'd tell you to contact your local MP. Would something like this be an option? It seems ludicrous to say: oh he needs X but we will only give him Y because we have failed to fund enough X.

Sometimes you need a politician to give a bigger squeak to your wheels.
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Stephanie - if you were in the UK I'd tell you to contact your local MP. Would something like this be an option? It seems ludicrous to say: oh he needs X but we will only give him Y because we have failed to fund enough X.

Sometimes you need a politician to give a bigger squeak to your wheels.
You are so right, Jennifer, and I have actually sent off 2 letters to my MP regarding the shocking situation with the Dementia Advisory service for our area. This consists of 1 person responsible for 3 Local Government Areas, which also contain a high proportion of non-English-speaking people and low incomes; people who don't always know how to access the services available to them, or unable to advocate for themselves. No replies.

I have vowed that when I lose my father, I will do all in my power to make this a priority in whatever way I can.
 

benny

Registered User
Dec 7, 2009
290
Central Coast NSW
With you on that

I am only about 2 hours away from you and I will support you on that. I too would like to be a strong voice for things to be better and more help available to sufferer's and carer's. I have sent you a private message!! Cheers Robyn
 

SallyBobJim

Registered User
Apr 25, 2013
2
When Help Isn't Help

Stephanie,
I came online today to vent about exactly the same thing, only I live in Australia. I am the sole carer of my 83 year old husband who has severe Parkinson's and Dementia. The Parkinsons means that his mobility is very poor, and the dementia means that he no longer knows what the toilet is, or his walker, or anything is. But he is not incontinent. I take him to the toilet every two hours and each time I must give him instruction and physical help to use the toilet (ie, 'take pants down, sit back far enough so penis is inside hole). Toileting takes about 20 minutes during the day and longer at night because it is difficult to get him out of bed.

My request for help was for 'day respite' (so I can sleep - since I am up every two hours ALL NIGHT LONG). I was told that my husband is too 'high care' to qualify for day respite, because of the toileting issue. They said that no one at Day Respite could take him to the toilet, but if I would consider putting him in nappies, then they would take him.

I was shocked. Putting him in nappies would make him instantly incontinent. He would get used to peeing/pooing whenever he needed to, in a nappy. That does not seem like a healthy or kind way to treat him; it would only make him more disabled.

I know that in the near future, the time will come when he IS incontinent, but he isn't now. It just seems cruel to make someone 'worse' off than they are. Unfortunately, I am too exhausted to fight this. It was just helpful to know that others are going through this.
Sally
 

60's child

Registered User
Apr 23, 2013
589
suffolk
Stephanie
How absolutely frustrating for you and your Mum. To flippantly say "put him in a home"
Is so very thoughtless. Clearly the person on the phone has no first hand experience with dementia. It seems to be a problem the world over. I do wonder what countries would do if all carers walked away from their responsibilites and left the "system" to deal with it. Widespread panic I would imagine. It is such a shame when all most carers want is a bit of help and support to care for their loved ones at home. Bearing in mind that many carers are elderly themselves it does not seem much to ask does it.
Sorry, I have no advice but wanted you to know I feel your frustration :(
Dee x
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Thanks everyone for your devotion, reading my threads is time-consuming because I just can't be brief. I want to reply to all of you but need to get on with things right now so I will do it in a little bit. Just want to thank all you lovely ones for your support.
Stephanie, xxx
 

rajahh

Registered User
Aug 29, 2008
2,794
Hertfordshire
My first thought was MP. failing that how about the PM. who will possibly put you onto the Minister for Health. My brther complained about a medical matter and this is what happened to him here in England.

Not sure you would get any better response though.

Also I agree the message from a " helpline" was not hekpful, how about writing in and complaining about that too.

I know the feeling when that you have enough on your plate, however when I get angry enough I can go further with a complaint than I normally would.

Sending hugs

Jeannette
 

Helen33

Registered User
Jul 20, 2008
14,697
Dear Stephanie,

I am glad that you were able to let it out on Talking Point because it benefits all of us to hear of such things. I am sorry that you have to experience all this though.

When I read about the system in your thread I thought it was a really good idea and one that the UK might think about adopting. It seemed very clear and precise and it might help people to know where they stand. However, as I read on it was clear that it was unreal - just an ideal that couldn't be realised!! How very sad.

I do hope you feel a little supported by posting Stephanie and would be pleased if you found the time to update us. I wish you well as the road carers have to travel can be made so arduous by the unnecessary obstacles that are thrown into the path by the agencies/governments meant to help us.

Love
 

janma221

Registered User
Apr 23, 2013
284
Powys
Hi Stephanie
Sorry I can't give any practical advice on this just wanted to let you know I am thinking of you. You have helped me with your kind words on TP before. My situation is that dealing with various authorities I am trying to convince them that my mother needs to be in a more secure environment. The other day she was picked up by the police wandering along the hard shoulder of a motorway after the episode where she was stuck in mud by a river over a month ago. They are suggesting a warden assisted flat which is nice but my mother has the skills of Houdini when it comes to escaping (twice from hospital). So 2 potential life threatening events and still waiting for an answer. Sorry I'm ranting now but it is frustrating waiting for these decisions and I feel so sorry for you and hope your situation gets better soon.
Big hugs
Jan xxxxx
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,341
Kent
Hello Stephanie

All these ideals make governments look good , sound good on paper but if governments cannot put their money where their mouths are, are less than useless.

Your parents need lots of help and you are being made to waste precious time trying to access the unavailable. I`m not surprised at your choice of title and am really sorry your parents are being so let down. xx
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Aren't you all lovely

Firstly, I'm always humbled when I read what other families are going through, the stress, heartache, frustration, pain, even horror and fear, and yet they endure, somehow. I feel somewhat selfish because, while I'm making some sacrifices, and witnessing the decline of a father who has been the most loving and bright man, our family is tight knit and supportive. My mum is stoic and no-nonsense, she is the most remarkable and strong woman I know. But sometimes I reach the end of my rope, when I see them suffering and know there's more that could be done to help them. That's when I come here and let it all out, and you listen, and care, and, most importantly, understand. The empathy is so powerful.

Robyn, I will get back to you tomorrow, thanks for your message. We sure need to empower our carers, they are unsung heroes.

Sally, your words could be written by my mum. Dad knows when he needs the toilet but just can't get there, if he knew what and where "there" was. She has a urine bottle she uses wherever he is, and there were dozens of times she wasn't on the spot to notice and Dad had gone wherever. At night she is half awake so she knows if he tries to get up and can help him, and not being alert to that ended with wet carpet. As chief problem-solver, I taped plastic drop sheets beside the bed and then taped a towel over that so they weren't a slip hazard. Saved the carpet a few times. Needless to say, as you do, Mum is awake up to 5 times a night, often not getting back to sleep at all, a rough thing at 82. I am so sorry you are having these trials, you must be exhausted AND angry, you deserve time and rest. People working with dementia should know how to handle these issues professionally. Good for you, helping him to retain some dignity, I'm shocked at the way people expect you to demean your husband in such a way.

Dee, thanks for your kind words, and I agree that carers are under appreciated and taken for granted. The "helpline" said the packages are for people who don't have someone like me to help them. But I gave up work to do it, I was a school teacher, which I'm not so heartbroken about leaving, but I actually feel worthless sometimes, ridiculous but I can't help it. Yes, I'm loved, my parents appreciate all I do to help, even Dad, my husband loves and listens, but I still wish I had a different life sometimes. Thanks for your support.

Stephanie, xxx
 

lilysmybabypup

Registered User
May 21, 2012
1,263
Sydney, Australia
Thanks Dee, feeling the hugs all the way down here, it's every bit as appreciated as advice. You're so right, carers are saving the system and the government immeasurably.

Jeannette, I've written to local member twice, with no response, even an auto email response would have meant something. Plate is feeling a little messy right now. Thanks for the hugs.

Helen, yes, the dementia journey is rugged in itself, obstructive policy and lack of funding just tips it into a full blown battle, but we are too weary to fight. Posting and just reading a few words from you all is such a comfort. Sometimes all we need is someone to listen, we don't always expect solutions, sometimes there are none. Thanks for your listening ear.

Jan, your story always puts my problems into perspective, I don't know how you cope, my heart goes out to you. At least I know Dad is safe and secure and I'm not going it alone. I wish you patience and answers that's bring you some peace, xxx

Grannie G, I love your down-to-earth sage wisdom, forged in painful experience. Yes, it does exhaust precious time and energy, maybe we will make changes for the next generation, it will be more than necessary. Thanks for your support.

I feel so much better, went to do Dad's shower and my "meals on wheels" run and, Mum was quite rested and Dad calm and sweet. The family helped move their bedroom downstairs on the weekend with a brand new bed, Dad just cant do stairs now, walking is a challenge. Mum said he only woke once in the past 2 nights and she had to wake him at 9.30 this morning! New bed, perhaps? Don't know, just so happy they're having some better days.
Thanks all, xxx