For carers of dementia/Alzheimer's sufferers

Very interesting - Gracesgran - will pass this on to a friend of mine who may or may not be aware of it. As they say "every little helps". Thanks.

If the person has a diagnosis they should get something and it would be backdated to the diagnosis date. I am trying to find what I can to help with my mother's care and the charities are amazingly helpful.

I read somewhere that a lady that had dementia/Alzheimer's starting writing a book and managed to reverse some of her symptom's

Thank you, that is very interesting and I will look into it for my dad.

Anyone who has any coping strategies for dementia can you let me know please as today he got lost in town after we made arrangements to meet up and he ended up in a different coffee shop to the one we had said to go to.

For physical reasons Mum can only walk short distances and can't go out on her own so we haven't had to face this one rubylady. Have you been on the Alzheimer's website. They have a forum where lots of people will exchange ideas.

The Alzheimer's Society gave my name to the Admiral Nurses, who are funded by the British Legion. They help the carers of people with dementia who have been in the forces. My father was in the army during the Second World War and as his carer I qualify for this help. They will visit him too. Worth passing this information on I think.

ruby you can buy a tracker for your dad. Several people on the AS forum have used them.

I hadn't seen this before and I had been told that you can only get the Council Tax reduction if you are getting any benefits, for example Attendance Allowance. We have been told we do not fulfil the criteria.

Isn't it the same old story! we have to dig and dig ourselves to find out about these things because the Gov/Councils are NOT! forthcoming.

I only found at over the last 12 months if I had been a reg carer for my dh I would have had a stamp put on!

Also (was going to put it on another thread but will attach it here)

Also found out few weeks ago about the "Warm Front Scheme"

there are about 3 categories, one for if you have young children, another if you are disables or have someone disabled.
You may! get up to £140 off your electric bill depending on who your supplier is.

I am entitled to £140 with British Gas because my income is below their criteria and that I have less than £16,000 savings.

You have to apply each year for it.

Just Google "WARM FRONT SCHEME) hope it helps others,,like other things it is not! publised.

There is a list of who your electric supplier is and you just click on their link. good luck everyone.

You are right bikergran it's unknown unknowns rearing their head again but if we use this thread to add information maybe more of us can get and give help.

Nana3 I had heard of Admiral Nurses but did not know about the connection to the British Legion. My father and mother met when he was in the RAF and she was in the WAAF! Sadly dad is no longer with us but with mum's dementia it is well worth looking into.

I know we shouldn't laugh at these things but it does keep you sane at times. Mum was attending a hospital appointment a month or so ago when we met a lovely and very kind lady of 91 - she was her husbands carer. She started talking to mum and obviously (mum is 94) they had the war in common and she told the lady she had been in the WAAF. Lovely lady then asked where mum had been posted. Mum promptly answered "Germany" which is where Dad was posted straight after the end of the war by which time they were married and my brother had been born. I have to admit I had to smother a smile as shades of Mata Hari came to my mind :-)

Gracesgran

Many years ago when I did a carer's course, the SW speaking to us said that some people don't bother claim attendance/disabled benefits if they were only going to get a very small amount of money and they could manage without it. She emphasised the sense of claiming even so as a) it might make you qualified for other benefits and b) if at a later date you the claimant became more disabled, it would be very much easier than starting from scratch.
I know things have changed but it does show the importance of asking question and finding out as much as possible yourself.

Gracesgran that is useful, thank you. We are struggling through the endless process to get funding for care at home for my mother, who now has descended into severe Alzheimer's and cannot be left alone. Started the process at Easter but it still isn't in place so we (mainly my sister) are still paying for all the care we can't cover ourselves. It is so difficult to get hold of people to chase up, they never ring back.

I don't envy you Icyalittle. I have seen (on another forum) several incidents which come very close to the bullying of relatives recently with SWs trying to insist that relatives should/must help to pay for the care of the parent, etc., or there will just not be a place available. Relatives are not liable for the care fees in any way. Only the patient may be liable. Mum is having to pay for the carers who go in and give her the medication she needs not because of her income but simply because it is not a physical problem. Presumably if she had two broken arms rather than a broken brain she would get the help from the council.

Dustyangel's comment about SWs saying people weren't claiming benefits made me wonder how many think like me ,that I shouldn't be claiming for looking after my DH as that surely is my duty. I am going to put a claim in now as my own mobility and health is not good at this time and we need to pay for transport and other help but I am not too hopeful.

Great info here thank you everyone. May I add the Carers Trust? They often have local affiliated charities who provide assistance and info to carers, this includes info on benefits and support networks.

When you fill in the long form to claim, do it with advice from someone who knows their way around it. There are different ways of stating what he needs help with, and some of them carry more weight with the assessors than others.

I agree with Elegran. I have just applied for the higher AA for mum and someone from Age UK helped me. It was that lady who told me about the exemption from Council Tax. Because they have been involved they know what the decision makers are looking for and it may be something you would think they would assume because of the other information you have given and not put down.

You have to go into all the detail of everything that you do for him, how long it takes, how often, and why.

That's right and if you don't live with the person you need to add in all the hours you do at home, shopping for them, etc. I don't claim carers allowance as we have brought carers in for some of the time, but I do wonder how you would count the fact that I am on call 24/7 for Mum's alarms

I wonder if anyone who has cared for their partner through, " end of life "dementia can give me some ideas about nutrition?
My husband is ninety, and I have looked after him, at home, for nine years; but for the last few weeks, he has started to refuse food. Now, I can only persuade him to take yogurt, or macaroni cheese.
Has anyone any suggestions for nourishing, home cooked, tempting meals for the very elderly?

Is it that he finds chewing food difficult Leonora?
I would try different kinds of soup - either a smooth puréed type like leek and potato, or mixed vegetable with macaroni or other pasta. Or cream of chicken. Or beef tea. Ask him what he fancies.
If you really wanted to go to town you could make your own stock with oxtail bones which would be very nutritious, but I think modem stock powders are pretty good too.
Good luck!

Or what about an egg custard?

Leonora I can only empathise. My H is 79 and diagnosed two years ago but fortunately at present his appetite is good although he has got very picky at what he will eat and instead of saying what he does like will just leave it, this is food he would have enjoyed ,or seemed to , a year ago.
I do think their "social skills " disappear, he will say things that he would never dreamt of saying before, sometimes to my extreme embarrassment.
I wonder if your H is having the swallowing problem that many patients develop. Ask for advice from your CPN if you have one or the Alzheimer's society.

*Leonora have you heard of the Alzheimer's Society's forum "Talking Point"?

It's a very helpful forum & usually whatever problem/query you've got someone else has had the same & can help with suggestions & ideas. My H has dementia & I've asked questions on there & have seen others talking about eating/swallowing problems.

It's a horrible disease but you have done amazingly well to have looked after him at home for 9yrs!

forum.alzheimers.org.uk/forum.php