• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Lost

Dawny

Registered User
Jun 16, 2003
3
Grimsby
I have just returned from visiting my father and mother and I am unable to sleep. My mum was been diagnosed with AD at the age of 63and my father is finding life very sad at the moment. My mother is so lovely and yet is unable to wash herself take herself to the bathroom and yet every night she thanks my father for all he does for her. Tonight he was very quiet and as I was leaving I asked what was wrong and he said he will never allow her to go into care as long as he is alive but noone visits anymore and he is tired and noone cares. His sister is gravely ill with cancer and all the family are ralling around and doing their bit. My father has lived with this nightmare for 6 years now and people seem to avoid calling on them and visiting........He is feeling let down by his own as well as the proffesionals.

He applied for carers allowance but was refused. I try and have them to meals as often as I can without trying to look like I am taking over. I wash her hair and set it twice a week and she is so grateful and hugs me. She has had a terrible time with her health for about 2 years and we have had conflicting stories as to why she goes 3 days and then messes herself so badly that my father is scared to take her out without full nappies. Noone seems to understand and I find dad is so proud he is carring too much himself. Is there any help out there???????? My father would not admit that we have a problem and I have been told not to discuss my mum with anyone as he does not want all to know.......But all do know and the wonderful lady I know is a shell of the woman I called mum. Please someone if anyone can help...........I have come home after spending 22 years in Aberdeen to be here for dad in Grimsby but I am so LOST and so sad that I don't seem to be any help.

Thanks ......
 

carol

Registered User
Jun 24, 2004
196
Surrey/Hampshire
Find your local Alzheimers Society, they have all the information you will need to know. Join a local support group, they are an invaluable source of information, you will wonder how you ever survived without them. In my local support group there are representatives from the social services, a community psychriatic nurse, an alzheimer support worker, a librarian that has a vast amount of books and information on the subject, and of course lots of people that I have made friends with that have been, or are going through the same situation as yourself.
 

Kriss

Registered User
May 20, 2004
513
Shropshire
Please apply for carers allowance again. When you fill in the forms be totally honest with yourself and put aside your "brave face" view. Fill in all the horrid details in their entirety - it is the only way. I learnt this lesson many years ago when my husband was disabled and forced to give up work. He applied for mobility allowance and initially was refused - we could not believe it possible - his disability is clearly visible to the world but he made the mistake of answering some of the questions with an optimistic slant instead of being brutally factual - it was very hard admitting on paper just how difficult he found things. He appealed and thankfully he was reassessed.

With AD your mother should be entitled to the rate that allows for 24 hour care. It may not be much but just by achieving a result you will all feel that little bit better. You need to get these small things out of the way as there are so many other areas that need your strength and focus.

It will be terrible for your dad to admit even to himself that he will need help and to get it he needs to talk. You will find that once in the open most people will be very understanding - I found that many others have been touched by similar experiences of which I had been unaware and were wonderful "listeners". We never got around to contacting our local branch of the AS when Dad was poorly but I spoke to them when my Aunt started to have problems. At the time I didn't realise that they dealt with all forms of dementai not just AD.

Very best wishes

Kriss
 

Kerry-Jane

Registered User
Feb 9, 2004
25
Surrey
Dawny
Last year I was in exactly the same position as you. We tried to hide my Mum's problems and deal with the situation on our own. My Dad was unable to deal with the problems and my sister and I (both living away from home) found that we were on call 24/7. I found that by talking to people here and reading through the postings a lot of our issues had been raised and answered before. Contact your parent's local council, many provide help for carers (some of which you may have to pay for, but they can be worth it). Get in contact with social services. But whatever you do don't take no for an answer. My mum is 63 thus she had to apply for disability benefit, with a caring and mobility section. We got this by being blunt and very honest. Getting this also meant that the social services were alerted and they have now managed to get Dad some help as well.
We have also learnt that it best to let people know what is going on. Relatives are now ringing to speak to my Mum and Dad more often (used to be just at Christmas and birthdays), presents for my Mum are arriving by post (she has developed an artistic streak) and we are able to release some of our tensions just by not having to keep our problems hidden. Alzheimers is not a dirty word - be honest with those around you and you might be surprised with the response - hopefully all good ones.

Good luck and keep in touch.
 

emscub

Registered User
Dec 5, 2003
124
Bath
We found out yesterday that our hairdresser has just been granted the carer's allowance when she doesn't live with her Mother (who has osteoporosis), arrange her meals, bathe her or do many of the things that my Mum does for my Nan. It's just that because my Mum works full-time she isn't considered to be caring enough for my Nan, whilst my hairdresser who works only part-time (at about double the rate of my Mum) fits into the category of caring for her Mum. It seems so unfair!
 

Kriss

Registered User
May 20, 2004
513
Shropshire
Just beginning to grasp the fact that you may all be talking about a different allowance to the one I got for Aunty. I quite easily managed to get the higher rate of Attendance Allowance for her.

Is there anything simple in the benefits system? No wonder there are apparently £millions of unclaimed benefits out there.

1 we dont know what they are
2 the method of claiming is fraught with confusion and difficulty and
3 it appears to be down to an individuals interpretation of the form data as to whether you get them or not.

Sorry - needed a rant!

Kriss
 

laura

Registered User
Oct 7, 2003
2
cleveland
carers allowance

I have just read the message regarding carers allowance. My mum is 57 and has Alzheimers. She lives with myself and my husband. I am a nurse and have just reduced my hours to one 12 hour shift a week to care for mum as she has deteriorated over the last few months. Despite the fact that I will be a full-time carer for 6 1/2 days a week I will not be entitled to carer's allowance because I will earn more than £77 a week. I have worked full time since I was 18, have always paid my taxes, have never been in trouble with the law as has my mum and husband yet typically we are penalised.
 

Kerry-Jane

Registered User
Feb 9, 2004
25
Surrey
With regard to the carers allowance my dad could not get it because he has now retired and I think that it is assumed that he is prepared to give up his life and any part time work to care for my mum. Because my mum was under 65 she could not apply for attendance allowance, but was told to apply for disability benefit which has a care and mobility section included. We have to go into details about the amount of help given to my mum (dressing, bathing etc), he fact that she could not cook for herself and that she had to be accompanied whilst in and out of the house in all situations. This meant that she got a high rate for attendance and caring section, low mobility because she is quite nifty on her feet (but we then got offered the blue mobility badge for the car!!) plus this is not based at all on current financial situation such as savings.
Speak to social services or your local carers or alzheimers group. There are benefits out there - we just have to learn how to get at it!
 

emscub

Registered User
Dec 5, 2003
124
Bath
Hi Laura,

You mentioned that you would be unable to claim carer's allowance because you earn more than a certain amount, but it was my understanding that carer's allowance is not means tested, although will only be given to those working less than 16hours a week (as those working more aren't deemed to be caring enough hours). I[m doing a training course with MIND at the moment and this was something we covered last week. I'm not sure if this is correct or not.
 

Meldrew

Registered User
Apr 28, 2003
53
London
Carers Allowance

Hello all
People who can get Carers Allowance (CA) are those caring 35 hours per week or more for someone who gets either of top 2 rates of Disability Living Allowance care component or Attendance Allowance at either rate.

Whlist it is not means tested there is a £79 per week net earnings limit for the claimant.

From October 2003, CA was extended to people aged over 65 - for many older people, there will be no obvious gain as CA overlaps with retirement pension. However, a successful application gives 'underlying entitlement' to CA which opens up carers premium within housing and council tax benefit and extra pension credit. Gives a Class 1 NI credit. Beware overlap between CA award and severe disability premium paid to disabled person.

You need to get the DS700 - Claim pack which includes information and application form. Obtain from CA Unit or Benefits Enquiry Line 0800 88 22 00

more information: http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_welfare.htm
 

Helen_old

Registered User
Dec 29, 2003
26
WALES
Carers Allowance

Hi all,

Just wanted to add that while the earnings limit is £79 a week that this is after deductions such as national insurance & tax, half of personal or private pension payments & they also deduct cost of childcare or care for loved one (up to a certain amount) but care must be provided by a non relative. People may also be put off claiming if they receive a pension but please note that private or occupational pension payments are not classed as earnings. I have a friend who gave up work & is receiving an occupational pension ,but who gets carers allowance though they tax it. Also if someone receives attendance allowance or disability living allowance at the highter rate they may be entitled to claim severe disability payment if they live alone. however if the person who lives with you also receives AA or DLA then the person is classed as living alone. same if the other person is registered blind. You can have the situation where one person claims SDP & the other person living with them has someone claiming carers allowance for them. Though the carer can't live in the house. Again if someone claims carers allowance but does not qualify as they receive too much pension for example they will still establish an underlying entitlement & can claim carers premium . The person they claimed carers allowance for would not then loose their SDP as the carer did not actually receive the carers payment. Its complicated but worth double checking as you may miss out on something you could have claimed, so best to get advice . If the Alzheimers society cant help then Age Concern may be able to or the Citizens Advice Bureau. If you do want to claim for carers premium pension credit , then best to put a claim in for pension credit & carers allowance in at the same time. Also if you claim carers allowance & attendance allowance for your loved one at the same time,then you may be rejected for carers allowance while the attendance allowance is still being processed . When attendance allowance is granted you can then reapply for carers allowance & they should back date it to the date you first applied. As you can gather i've been reading all the small print as i am currently sorting out my own claim for carers allowance. I gave up work to care for my mum but they are currently querying if my last payment from my previous employer included any payment in lieu of notice that they would class as earnings after the date i claimed from. or any holiday pay. Because of this they have not yet granted my claim.It doesn't so they can't get me on that one. However this query has generated more forms to be filled in. My claim has taken longer than the normal five weeks to process so its just as well i've got some savings to live on! I am determined i will get this allowance & keep chasing them. People have said on this forum that caring for someone with dementia makes you more assertive & your SO right. People say to me "but you used to be so quiet".

Hope this information helps

Take care

Helen
 

Kriss

Registered User
May 20, 2004
513
Shropshire
Good luck Helen - go girl!

know what you mean about the assertive bit. I'm still learning as it goes so against the grain with me to say anything unless I am already 100% sure of my ground.

The world is definitely geared to those who shout loudest isn't it.

Kriss
 

Helen_old

Registered User
Dec 29, 2003
26
WALES
Thanks Kriss

I'll keep you posted. I'm afraid your right about shouting loudest ,& as if we don't already have enough of a battle coping with our loved ones dementia.

Take care

Helen