New and confused - where to start???

[ceetee]

Hello,

my husband and us as a family are just going through the stage of memory clinics, scans and doctor's appointments to determine where the memory loss and change in personality come from. It looks very likely that it is Alzheimers (at the moment it is called cognitive impairment with memory loss or Dementia). Today we were told by a doctor that my husband should surrender his driving licence and we should start claiming benefits with the help of the Citizens Advice Bureau. We have never received any benefits so far. My husband is 62 and has always been working until he was dismissed via disciplinary procedure in January this year. His work standards dropped and he did do the wrong jobs. When confronted, he walked out of conversations or just stayed silence. At the time, I suspected depression or bullying at work, but it now is clear that he lost his job due to the illness. So far we could not claim anything because to the outside world it looks like that he did not work properly and got sacked for it. Now we have an underlying medical reason, help may be in sight. (We have been struggeling to financially survive this far with a mortgage and full-time childcare for a 4-year old.) I just don't know where to start. I would like to know what to ask at the Citizens Advice Bureau and I am not always sure if people tell you all the things you are entitled to or if you just have to find out for yourself??? The doctor mentioned Incapacity Benefit, the CAB lady on the phone said Disability Living Allowance and I come across Pension Credits for over 60-year olds. Also, is there any support for transport costs now my husband cannot drive anymore to get to places. We live quite remotely and you are dependent on a car really. So as it stands, my husband is stuck at home (not sure if he would cope with going out alone if he could) and I need to work full-time day and night to keep us ticking over. It seems a vicious circle. Where is the door to get out???
If you can help and guide me in the right direction, that would be great. I just feel a little overwhelmed at the moment and do not know where to take the time from to do lon-lasting research etc. beside working full-time, looking after my husband and doing nursery runs etc.PLEASE HELP!

Thanks for your time to reply! Ceetee

 

[BeckyJan]

Hello and welcome to TP, although it is so sad you need to be here.

There is a lot of advice and support here but you may need to take it step by step.

To start maybe you will find the link here helpful - its an AS Factsheet which gives guidance at your stage.
http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=122
I am sure you will soon be overwhelmed by the support here - please keep in touch and ask questions.

 

[CaPattinson]

Cab

Hello Ceetee, as the link mentions - the Citizens Advice Bureau (CAB)
are excellent. I think make an appointment. I'm sure they will be able to advise you regarding any benefits and also issues about your husbands dismissal - whether unfair or not and what you need to do.
Perhaps you could print your post which explains your concerns very well and take it with you? Best wishes, take care XX

 

[Rosalind]

As well as the CAB, look to see if there is a Carers' Association in your area. You should not feel alone, there is help out there for you.
Good luck

Rosalind

 

[ceetee]

Thanks feeling a little better already...

Thanks for the replies so far. I am really overwhelmed how quickly people are there to listen and help out with advice. The factsheet on benefits was helpful and thanks, XChris, for the suggestions regarding the CAB appointment and Rosalind for the encouraging words. Maybe there is a light at the end of the tunnel???

 

[elaine n]

Hello Ceebee, it's all so overwhelming isn't it? I got in touch with the alzheimer society and they sent out a Dementia Adviser to see us, although this was after my husband's diagnosis, not sure if you can see them before diagnosis, but if you phone them they'll be able to tell you. We were directed to the FAB (finance and benefit) team from DWP and they were brilliant at letting us know what we were entitled to. To have financial worries on top of everything else you have to face is awful so I hope you manage to get some help xxxxxxxxelaine

 

[BeckyJan]

Glad you are feeling better - please keep in touch and asking questions. We are here to support.

If you want some light relief please go to the Tearoom - its great and we all need some fun!

 

[elaine n]

You'll get loads of support here Ceetee, just post whenever you need! xxxxxxxxx

 

[Loopiloo]

Hellp Ceetee and welcome to Talking Point, although sorry you have to be here. It is very frightening and confusing at your stage, but you have come to a good place, lots of support, knowledge, experience and already you have had some good advice. Lots more of that when you need it.

Good luck and keep us posted on how it all goes.

Loo xx

 

[Necion]

Hi Ceetee, how sorry I am that you all find yourselves in this position. I can identify with much of what you say.

You've had excellent advice so far.

Just a suggestion, have you checked if you have 'critical illness' insurance cover on your mortgage?
You probably have checked, but it's one of those things we never expect to need, just a chance you may have overlooked it in the emotional turmoil.
A dementia illness is obviously devastating for anyone, whatever the age group, and brings added problems for those of us still working to provide for our family and retirement.

We're very much at the same stage of tests as yourselves, you have my full sympathy, it's a very very stressful time. I haven't a clue about benefits or anything either.

Best wishes to your whole family,
Love, Necion. x

 

[Helen33]

Dear Ceetee,

A warm WELCOME to Talking Point from me too I think it is wonderful that you have found Talking Point at this stage because I think it is an excellent source of information, support and connection with others. It certainly helped me overcome the huge sense of isolation that I felt.

I remember the beginning of this journey for me and I, too, hadn't a clue about any benefits. Like Elaine, I rang our local Branch of the Alzheimers Society (who deal with all kinds of dementia) and they sent out a support worker to see me. She was a wonderful source of information and support and she drip fed me rather than overwhelm me with masses of information. Someone came out to visit me to help me with all the claim forms because I just couldn't get my head round them myself as I was also working, caring for my husband and trying to sort out my sister's care!! Your situation with your husband having been dismissed is more complicated and I wonder whether you might benefit from ringing the Alzheimers Society helpline and asking to speak to their legal team. I haven't used them myself but I have heard that they are excellent. This is the link to the helpline http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200365

Love