For carers of dementia/Alzheimer's sufferers

I found it so hard to find decent information on funding and exemptions when trying to fund my Gran's care, there's so little transparency out there for what people are actually entitled to.

All I'd add to this thread is to not forget to apply for support and needs assessments and Carer's assessments from your local authority as you never know what help you may be entitled to unless you ask. Independent financial advisors who specialise in care can also be a great asset when contemplating the financial aspects of care - it certainly helped make funding my Gran's care easier.

MeggyMay. How are you? I hope you have support and practical help. My very best wishes to you both.

MeggyMay I hope you are getting plenty of help and support, you must take care of you as well.

Meggymay sending you my very best wishes for an impossible situation. When you think of sll the petty things some of us moan about, it is truly shaming.
I hope you are getting some support and that respite is available.
you have earned them.

My husband has dementia and advanced inoperable lung cancer. (Never smoked in his life.)The combination means sleep is shot to pot. When I manage to get him back to sleep after a coughing bout or a loo trip, I'm on alert, listening to the laboured breathing. Food is a bit of a challenge, as even when he would like to want it, he just can't face very much at all. Knackering and disheartening, I have to say.

Hello to all of you who have so kindly replied to my plea for ideas to tempt my ninety year-old husband's appetite.
He is in the final stage of dementia, and finds food with lumps a problem. So, I'll try both the egg custard and banana suggestions.
Thanks too, to those who mentioned various benefits - the wonderful Age Concern advisors helped me to claim all the benefits to which I was entitled, and for which I am deeply grateful.
I must also thank the Dementia Society's, Talking Point Forum, who have guided me throughout my dear man's nine year's degeneration into oblivion.

Ann I read that article and can understand how its smug tone upset you. But it was more about the bad relationship the writer and her mother had had when she was younger and how the illness had somehow enabled them both to see their relationship differently.
Your situation of seeing your DH of many years change before your eyes as the condition progresses as well as the burden of caring for him every day is not in the same league - I can well understand your feeling that your life is not your own and it is not in your control. I am looking after MrA at the moment after a hip operation and I know it's nothing compared to what you do for your DH.
for you x

I agree with janeainsworth about the egg custard. When I was worried about my mum not eating much, her friend told me how to make it and it went down quite easily.

annsixty you're right it is extremely hard work. I think it's worse as well when it's your partner. Everything is then on your shoulders. Living with it 24/7 without any respite grinds you down.

I'm glad that the decision for my H to be in care was taken out of my hands.

My thoughts are with you.

Leonora. My dad stopped eating and drinking, it's a long story but he was eventually sectioned and is now in hospital. There he eats and drinks and he does what the staff ask him to do whereas for me he would take nothing. They supplement meals with a liquid food but I know you can only get it on prescription. My best wishes to you, I know how difficult this situation is.

Yet another article in today's DT , leading to yet another book, about a family member caring for a mother with Alzheimer's. Except she lived hundreds of miles away and visited once a month and her care was to find a nice home for her. She says what a joy it was to care for her and how it strengthened their relationship. Well actually it is b....y hard work and I might feel joy if I was going home for for 4 weeks and living a life. I live my H's life,not my own. I don't often whinge but these articles make me see red. This morning I realised that we were nearly out of Memantine as the surgery had only prescribed 28 days, so I had to go out in the pouring rain to put the scrip in, got soaked and came home feeling sorry for myself which isn't often.

I presume you have electrolyte drinks, which are available on prescription.

The last three weeks of my husband's life, when he could hardly swallow, all he ate was bananas; a couple of bites at a time.

annsixty surely your husband should be getting at least the lower level of Attendance Allowance. I know it is easier for me because I claim for my mum and somehow that feel's less of a reflection on me although, given the choice, mum would not claim. I'm afraid I just don't explain too much.

If you decide to claim do contact someone like Age UK as they will often know better what information the decision makers are looking for, they will often visit to help you fill the form in and often tell you about other things that are available. An it is nice to chat on a normal adult basis .

As you have seen some benefits are "gateways" to others and they are all designed to help with the care your husband needs.

*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

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.

Or what about an egg custard?

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!

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?

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

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

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.

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.

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.

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.