We are currently experiencing a living hell with my Dads vascular dementia. There are so many organisations out there who profess to provide help from voluntary to NHS however after 12 months of trying to get some practical help ie sitting with my Dad for and hour to let my Mum go shopping or have a coffee with a neighbour, help just doesn’t exist. There are lots of clubs that you can drive to and do things at, but that is totally unsuitable for my Dad. No one takes the time to understand his needs no one is remotely interested. He has brain damage and his illness is treated as a social issue. Forums like this may help some people but Ian sick of talking and the only thing that really talks is money. You have to pay to get help with dementia. I just wish people would be more honest and tell you this from the start instead of talking talking talking. I’m all talked out
Where is the practical help?
- Thread starter Futile
- Start date
Welcome to the forum. I hope that you can get some practical help from our vastly experienced and supportive membership.
I have to say that in my area I too find ‘help’ thin on the ground. Our main point of contact with the medical team has been a CPN who has promised to provide my wife with a referral to a Day Centre and then a referral to a Befriending Service’ - neither has happened and then the CPN moved on. Our latest contact was a letter to say the CPN had yet to be replaced and did we want to stay on the books. All as useful as a chocolate fire guard.
All I can offer you is empathy!
I have to say that in my area I too find ‘help’ thin on the ground. Our main point of contact with the medical team has been a CPN who has promised to provide my wife with a referral to a Day Centre and then a referral to a Befriending Service’ - neither has happened and then the CPN moved on. Our latest contact was a letter to say the CPN had yet to be replaced and did we want to stay on the books. All as useful as a chocolate fire guard.
All I can offer you is empathy!
In case it’s of any use, you can use this link to do a post code check for support services in your area
https://www.alzheimers.org.uk/find-support-near-you
https://www.alzheimers.org.uk/find-support-near-you
Sorry you are having such a hard time getting support for your mum and help for your dad, Futile. Has your mum had a carers assessment and your dad a care needs assessment from social services ? My OH got a good befriending scheme from social services, where the care worker comes to the house and stays with her for 3 hours. Your local carers support centre may help, at http://carers.org.
I hope that helps and is not just repeating the organisations which have let you down.
I hope that helps and is not just repeating the organisations which have let you down.
Sorry to not help at all, but I feel pretty much like @Futile too.
I'm drowning in leaflets for things that are either inappropriate, or bl**dy miles away.
Everything seems to cost, which tastes bad - this should be payback time, after a lifetime of 'paying in'.
Some of these organisations take months to respond; often by just sending out another leaflet.
It feels like I've been box-ticked
I won't just moan though: I'm aware of my own shortcomings & need to be revisit my searching...
I'm drowning in leaflets for things that are either inappropriate, or bl**dy miles away.
Everything seems to cost, which tastes bad - this should be payback time, after a lifetime of 'paying in'.
Some of these organisations take months to respond; often by just sending out another leaflet.
It feels like I've been box-ticked
I won't just moan though: I'm aware of my own shortcomings
& need to be revisit my searching...
Hi and welcome to TP
The NHS will take care of all the medical issues but as there's very little they can do other than diagnose then their job is done unless other medical issues arise.
many of the organisations like the AZ society, AGEUK and the like are charities and so complaining about the deficiencies in a charity is a bit unfair. They mainly rely on volunteers and are funded by donations by the public so anyone who isn't volunteering or donating is being a bit harsh on them.
You can as suggested as social services for an assessment of his need but it's means tested and only people with very little assets get LA funding so most people pay for the care the LA recommends themselves so there's no reason why (if you have over the assets level) that you can't just arrange it privately.
If you're lucky there will be things available but it's very much a postcode lottery,
All elderly people with or without AZ pay for social care, you can be; old, alone, lonely and you have to pay for the "social care" element of any care on the same basis, it's not just people with AZ get ignored there is really very little help for any elderly people who are struggling.
I know people who are just elderly and infirmed, people with advanced MS and people with mental health issues, the system ignores them all equally when it comes to practical help, it is mainly done by charities.
K
The NHS will take care of all the medical issues but as there's very little they can do other than diagnose then their job is done unless other medical issues arise.
many of the organisations like the AZ society, AGEUK and the like are charities and so complaining about the deficiencies in a charity is a bit unfair. They mainly rely on volunteers and are funded by donations by the public so anyone who isn't volunteering or donating is being a bit harsh on them.
You can as suggested as social services for an assessment of his need but it's means tested and only people with very little assets get LA funding so most people pay for the care the LA recommends themselves so there's no reason why (if you have over the assets level) that you can't just arrange it privately.
If you're lucky there will be things available but it's very much a postcode lottery,
All elderly people with or without AZ pay for social care, you can be; old, alone, lonely and you have to pay for the "social care" element of any care on the same basis, it's not just people with AZ get ignored there is really very little help for any elderly people who are struggling.
I know people who are just elderly and infirmed, people with advanced MS and people with mental health issues, the system ignores them all equally when it comes to practical help, it is mainly done by charities.
K
Thanks! It does help a little bit. We are reduced to speaking to a private company who are coming around on Thursday. I think they charge about £25 per hour and Mum currently gets approx £55 Attendence Allowance per week, so this will go towards it. If Dad had cancer we wouldn’t have to pay for anything. I never thought there would be anything worse then cancer, but turns out this is
I totally get where you’re coming from, and I’m sure it helps lots of people, just not Dad or us. This just honest feedback, it’s not about being rude or ungrateful but opening up that some People dealing with this need practical help, not just having clubs to go to or talking about how they feel. My Mum is not a confident driver and doesn’t drive more then a mile from the house in addition you have no idea of the rigmarole to get my Dad ready to go out. I could never have imagined how stressful getting someone to put a pair of shoes on can be. Do people realise this when they say bring him to the coffee morning at 10am? They would have to start getting ready 3 hours before they go, breakfast takes an hour, the shower is a complete battlefield. So quite honestly the voluntary options are so far not an option for my Dad. When they are mentioned we mentally shut down because it’s apparent there is a complete lack of understanding of our situation and Dads needs. So that’s why I say one hour of someone’s time once a month or a quarter or even six months would be so gratefully received, just one hours respite would be worth a million bucks. All I’m saying is to think about this and how perhaps this could be built into the current voluntary care agenda.
My mother-in-law had mixed dementia and we found that as a self funder we were very much left to sort things out ourselves. We never bothered with social services throughout the care she received as she was above the financial threshold. I'm afraid that unless you have less than the £23250 in assets social care costs are down to the individual. You are still entitled to a care needs assessment. My MIL paid for carers, day centres and eventually care home fees. The only thing free was the home library service and a befriending service.
Thanks for the reply and letting me know of your experience which is helpful. We are at the turning point now of getting private care. We are trying to keep him at home for as long as possible but now need help to do that. I just feel there is smoke and mirrors with regards to the care that is ‘offered’ by the state. It’s completely disjointed and I think deliberately designed to drive people to spend their own money on managing this desease. It’s a national disgrace and is only going to get worse I fear.
Hi thanks for the help, however we have already been down this route. It’s great if you need help washing, getting dressed etc but Dad doesn’t need this, Mum helps him and is quite happy to do it. It’s later in the day when she would like to go to the shops or have an hour to herself, to clear her head it’s help with this that just doesn’t exist, unless you pay for it. If people didn’t need this then private organisations wouldn’t offer it as they would make no money. My gripe is that by giving carers an hour a day, would save the NHS thousands as this is cheaper then being in hospital. Another gripe of mine is that on the 3 occasions he has been in hospital in the last 12 months we have had to practically beg to get him discharged. The NHS only works 4 days a week. Nothing happens on a Friday as staff are on wind down for the weekend and Saturday and Sunday Consultants and Doctors don’t work. This means if by Wednesday no one has done an assessment for discharge the earliest it will happen is the Monday of the next week, that means a minimum of 5 additional days in hospital for someone who is receiving no medical treatment. A complete disgrace and total waste of funds. Everything is a battle and and we’re made to feel like trouble makers or ungrateful. The stress is overwhelming
Sorry to not help at all, but I feel pretty much like @Futile too.
I'm drowning in leaflets for things that are either inappropriate, or bl**dy miles away.
Everything seems to cost, which tastes bad - this should be payback time, after a lifetime of 'paying in'.
Some of these organisations take months to respond; often by just sending out another leaflet.
It feels like I've been box-ticked
I won't just moan though: I'm aware of my own shortcomings
Do moan please! We just want the best treatment for our loved ones and can see that the current system is broken. If we keep quiet nothing will get better. We have drawers full of leaflets, People ringing the house and Mum has no idea who they are or what they do. All very polite but offer no practical help whatsoever. It’s so ridiculous in normal circumstances you’d laugh about it, but every day throws up another horrendous challenge that you forget to laugh
This was exactly my experience and I have the tottering pile of dusty leaflets to prove it. It was good to read your post, which hits the nail on the head. I always feel guilty that I somehow couldn't actually get any help from all those 'helpful' organisations.
Exactly. In my professional life as a mental health professional, clients frequently beg me not to give them any leaflets or actually cry when they see them around. Kindred.
I know. People used to cross the road to ask how my husband was or make remarks about how quickly he was deteriorating ... why could not ONE person say is there any way I can help you?
Kindred.
