How to get support?

josiejay

Registered User
Sep 13, 2007
3
Hi
I'm new to this as not posted before. Hope I'm doing it right. Not too sure where to start. My dad was diagnosed with Alzheimer's about 18 months ago. My mum is his carer and is very stoic about it all, but I don't know how she manages, especially as she is also caring for her mother who lives with them. I feel so frustrated that I don't seem to have managed to get them the support that they need and feel there must be more that can be arranged. Their GP and Consultant really don't seem to have been helpful. Sometimes various professionals will mention that they need more help and mutter about 'support packages' but then nothing much seems to happen. Very slowly they have now managed to get a bit more help a few hours from someone at 'care for the carers' which is great. Mum also pays for someone to come in on a couple of other days a week, so she can go out.
I've seen from posts that other people seem to have CPNs and it seems they can be helpful. Is it usual to be allocated one? do they help? should we be making a fuss at GP to try and get one?
Social services have vaguely muttered about the respite system changing and she may be entitled to something, but nothing's really happend. Mum has even had problems finding a home which will do respite when she pays privately - or at least that she can book more than a week in advance. They live in Bexhill.
I understand its a grey area about what the NHS are responsible for and what social services can offer - and its therefore means tested. Any advice about how to work out what the NHS might be able to offer in terms of on-going care while dad's at home would be much appreciated. Dad is doubly incontinent. He has quite serious sight and hearing problems. He needs help to feed and has mobility problems (we have had an assessment from physio and they supplied some equipment which helps). I just wondered if he might be able to get some on-going help from an O.T. as he's obviously bored and frustrated just sitting around, but his options are limited since his Alzheimer's became too advanced for him to be able to follow his books on tape.
sorry to go on. just feel so frustrated that its all so confusing and so many different professionals who might become involved, but its knowing who might actually be able to sort out some practical help.
any advice v gratefully received.
josiejay.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Warm welcome josie.

I am no expert and can only advise re our own circumstances.
[Mum has even had problems finding a home which will do respite when she pays privately - or at least that she can book more than a week in advance. /QUOTE]
Unfortunately this seems to be quite usual when you are self funding.

In our area if you have a CPN they have to act as your SW. Lack of funds I am told.

You could try your local branch of the Alzheimer's Society. They can be very helpful, some areas even have day centres.

It is just a case of chipping away, via the GP. I am so glad that you are there to support your mum, as she cares for your dad.

I am sure you will get some good advice soon. Just wanted to welcome you aboard.
 

josiejay

Registered User
Sep 13, 2007
3
Connie - thanks very much for your welcome. It's a good idea to contact the local Alzheimer's society. We phoned them for details of meetings, but then mum couldn't face getting dad there, but I think I'll see if they can give specific information about local services. Sounds as if it is worth trying to get a CPN.
josiejay.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Josie, it was my (sad) experience that if you were self-funded you were essentially left to get on with it. I know some people have had a more supportive experience but I did not. One thing that your mother should receive, self funded or no, is a carers assessment. This may allow you to access some services that would be otherwise unavailable. They don't always promote this, but she is entitled to it.

Your local PCT should have a nurse specifically designated to do evaluations for NHS Registered Nursing care Contributions. The bad news is that as the name implies, they only pay for those things that would require a registered nurse. Have you been put in contact with your local continence advisor?

Edited to add: this is the page for Adult Carers for East Sussex (which seems to cover Bexhill) http://www.eastsussex.gov.uk/socialcare/adults/carers/default.htm
 
Last edited:

cynron

Registered User
Sep 26, 2005
429
east sussex
c p n

Here in this part of Sussex my husband did have a CPN from the start of his dementia but later on as things became more difficult i had to push to get a SW but once we were in the system we did recieve more help so its worth being a bit pushy. Dont ask dont get.:eek:

Cynthia .
 

Margaret W

Registered User
Apr 28, 2007
3,725
North Derbyshire
Go along to your local Alzheimers meetings on your own if necessary. They are there for carers as well as the cared for. My one meeing with them in July was a wonderful support if only psychological rather than financial. I dare say I could have got more out of the meeting, but it was my first shot, and I found it such a caring meeting.

Let us know how you get on.

Margaret
 

josiejay

Registered User
Sep 13, 2007
3
Hi
thanks for replies. I will see if we can get to local Alzheimer's soc meeting and it does sound like its worth pursuing getting a cpn. Will let you know how I get on.
Josiejay
 

BeckyJan

Registered User
Nov 28, 2005
18,972
Derbyshire
Hello:

I do think that each area is dealt with in different ways. I agree that if you are self funding then 'you are left very much on your own'. I have tried locating respite with a view to long term planning - no hope - this is because each NH prefers to plan for long term stays (this is a financial issue!!). It seems that SS have 'respite' places available for emergency use - which means the carer has a crisis before help is available!!!!!!!!

I feel strongly that you should contact your local Alz. Society group - if your local organiser is as good as ours in North Derbys. then you will get much advice about local services, both weaknesses and strengths.

It is a minefield - I do hope that through TP you manage to penetrate it a little!!

Good luck and best wishes Jan