Oh my goodness poor you, poor both of you x
I'm so sorry that you haven't found your carers organisation to be more help. I'm guessing that this is partly because of your very rural location. I live in a town and the carers cafe was my lifeline - well one of them, the other was the lunch club/day centre.
Are you receiving attendance allowance ? If not you need to be and it is non means tested and very helpful with some of the extra expenses you will be incurring already I'm guessing.
I have put together some basic info that covers a few of the questions that people ask first of all and has some phone numbers, ignore what you don't want, from your post it is a bit difficult to guage where you are in the process and what you might actually need.
here goes, come back and ask lots of questions, there is a lot of support and friendship on here
This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work
Do have a look at it
http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf
You can also ask for a carers assessment - this will give you a break and give you some 'free' hours of help possibly. it might seem early days to be thinking of a 'break' but a few hours here and there is a good idea from as early on as you can.
If you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that is needed (not the help that they get at the moment but what would be ideal for what they NEED). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year. To talk to someone, just call 0800 169 2081.
I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.
If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.
The Dementia helpline is a useful number to have
Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.
The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday
I saw earlier today that someone had information about admiral nurses (specialist dementia nurses) which you might find particularly useful as your wife has multiple health issues as well. This is the number they gave Admiral Nursing Direct on 0800 888 6678 FREE or email
direct@dementiauk.org
I would normally advise you to phone for an assessment for Linda but you said you had not had any help from social service adult care - i'm not sure why but when you've have a bit more time on here you might want to share that experience.
As I said pls feel free to disregard anything that isn't useful. I hope that you will now begin to get the support that you need xxx
