Where is the practical help?

[canary]

What exactly do you want someone to do?
You have said that help is not required to get him washed and dressed, but in another post you have said that your mum cant get him out for things like day care, dementia cafes and "singing for the brain" because it takes too long to get him ready. If you want a couple of hours for her to go out then there are indeed organizations who can provide Befriending Services, or you could employ someone to just sit with him. Things like getting a cleaner in, getting someone to do the shopping, giving her a hand with getting him ready will give your mum more time, because just being with someone who has dementia is tiring. There are things out there, but you have to search.

I am guessing, though, that none of this is what you want, so Im wondering what you are looking for. Is it that you object to having to pay for things? Organisations that deal with dementia are not "sexy"; dementia is the new taboo disease and there is very little money in it, so everyone is strapped for cash. Its not the way any of us would like it, but thats the way it is. There are no easy answers. Dementia itself makes helping difficult as the person with dementia will often refuse help and insist that their carer does everything for them with no outside help. So you have to learn new ways of doing things and new ways of coping.

There are many threads on here about how to deal with practical things like washing/bathing, aggression, incontinence and if your mum needs specific help with something TP is a treasure trove of ideas and information

 

[Rosettastone57]

What exactly do you want someone to do?
You have said that help is not required to get him washed and dressed, but in another post you have said that your mum cant get him out for things like day care, dementia cafes and "singing for the brain" because it takes too long to get him ready. If you want a couple of hours for her to go out then there are indeed organizations who can provide Befriending Services, or you could employ someone to just sit with him. Things like getting a cleaner in, getting someone to do the shopping, giving her a hand with getting him ready will give your mum more time, because just being with someone who has dementia is tiring. There are things out there, but you have to search.

I am guessing, though, that none of this is what you want, so Im wondering what you are looking for. Is it that you object to having to pay for things? Organisations that deal with dementia are not "sexy"; dementia is the new taboo disease and there is very little money in it, so everyone is strapped for cash. Its not the way any of us would like it, but thats the way it is. There are no easy answers. Dementia itself makes helping difficult as the person with dementia will often refuse help and insist that their carer does everything for them with no outside help. So you have to learn new ways of doing things and new ways of coping.

There are many threads on here about how to deal with practical things like washing/bathing, aggression, incontinence and if your mum needs specific help with something TP is a treasure trove of ideas and information

I agree with canary . I should have mentioned in my previous post that I found I had to be very proactive when providing help for my MIL. She was in her own and didn't see that she needed help. We just organised it anyway. I accepted there was money to pay out for her but as there were no other family members willing to help there wasn't a lot of choice . If you wait for the NHS or social services to come to the rescue you'll probably wait forever

 

[Philbo]

Good morning

When my wife was first diagnosed, I was at a total loss on how to cope. I muddled my way through, I guess but it was after the memory clinic discharged her after 2 years (back to the care of her GP - yeah right!) that the panic really set in.

It was about that time that an aunt told me about a local monthly dementia coffee morning. We went along and although my wife did not benefit herself (her speech and cognition were affected very early on), I learnt an awful lot about support available locally - word of mouth, not from leaflets.

It turns out that in our area (East Kent), though the NHS/LA appears to suffer from the same lack of funding as many parts of the country, the voluntary/charitable/support organisations have formed some quite good allegiances.

So at the first few visits to the dementia coffee mornings, I met the local support rep from Crossroads Care (charitable support organisation). He visited us at home and yes, he had loads of leaflets but took the time to listen to our needs and signposted which organisation could help.

Well, it was like someone had wrapped me up in a warm blanket - yes I still had to do the leg work but the support has made all the difference. I also attended our local AgeUK centre, who run a monthly coffee afternoon, where they bring in various support organisations. Again, I was able to glean information on other avenues of help.

If you search the internet for "care navigator services", "carer support", "dementia hubs" etc, in your location, you will hopefully find some useful links?

Failing that, if you let us know what part of the country you are in, then the lovely folk on here may be able to offer more specific advise?

Good luck.
Phil

 

[maryjoan]

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.

I don't know where you are, but this is exactly what I have been banging on about to County Councillors in Devon. I have been to County Hall and spoken before our 'high and mighty' only to be told that the Head of Social Care believes there are only 1 or 2 carers with problems - and he is not alone in this.

The problem is - they do not have to live our lives and be as mentally exhausted and bone weary as we are. Myself and others on here, are trying very hard to get someone to see the light - but as long as it is about ££££'s - it is going to be a hard task.