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Newly diagnosed Alzheimers, what to do next?

(11 Posts)
madamginger Fri 01-Apr-16 10:07:41

My lovely step dad has just received a diagnosis of early onset Alzheimers at the age of 62 sad
At the moment it is still early in the disease and he is on the whole still functioning ok, and he is still working but we are not sure how long this will continue.
My sister and I try and help my mum where we can but we are starting to think about their finances and sorting out legal details and I have no idea where to start.
My mum is still very upset at the diagnosis and her head is over the place so I want to get as much information as I can before I speak about the practicalities of what needs sorting

CMOTDibbler Fri 01-Apr-16 13:27:05

The absolutely first thing you need to do, and soon is to get power of attorney - ideally both the health and welfare and financial. And if you can persuade your mum to do them as well while you are at it, then its a good thing!

The other aspect is whether they live somewhere suitable in the long term, or whether a move would be a good idea. Your step dad will cope with a move now, but in 5 years it might be too much

bilbodog Fri 01-Apr-16 16:59:53

Sorry to hear this - my father had dementia. Look at the alzheimers charity websites and read as much information as you can and look for forums. I found one sometime ago, but cant remember where which has stories and comments from people with dementia and it was interesting to read about the illness from their point of view.

FuckitAndStartAgain Fri 01-Apr-16 17:03:20

Yes to P of A, it is relatively easy to get done now, very difficult (and expensive) to do when people have lost the capacity to agree. I intend to do one, I am 50 (ish) but you never know what is round the corner. You can do them yourselves downloading forms from OPG and only pay for registering them. Or, you can pay a solicitor to complete them for you which would cost about £200 for each.

madamginger Fri 01-Apr-16 21:40:28

Thanks guys.

Knockmesideways Sun 03-Apr-16 20:03:51

Hi, definitely get the LPA sorted out. Also, check if you have an Admirals Nurse in your (or your parents) area.

This is a specially trained nurse who will help you sort out what is needed, where to get it and what your parents may be entitled to (my mum now gets attendance allowance as she is in her 80s - I think you get that when you're over 65), she also put us in touch with our local day centre as mum lives alone and the contact with others does her good.

The Admirals Nurse is a free service. They can help with assessments, respite, social services and act as a go between for your family if you really don't know where to go for help at any time. They are there, primarily, to support the family.

Helenluvsrob Mon 04-Apr-16 23:25:15

Power of attorney as above , health and welfare. ASAP and please , no " clever safeguards " my mother , bless her ( grr) put both my sis and myself on with joint signing for sums over 1k. Well 1k was a lot of money when they drew it up but now is less than 2 weeks care fees. Bit of a bugger when did now lives in Spain ! We couldn't have internet banking or debit cards etc just a cheque book ( from which I could singly sign as many chequers as I liked for £999...)

Yes to where to live / sort house / move now if desired but more than anything do the bucket list stuff. Start with the long haul and enjoy every minute. Leave the uk stuff for later..

Tessticklesyourfancy Wed 13-Apr-16 19:53:21

As others have said POA is an absolute must and I speak from experience. I didn't have it for my dad, long story, so it's a court of protection order I'm getting for him, I have an interim order at the moment and that had taken from the beginning of November to get this far and it's extremely expensive. I don't know where you are but here the referral from the GP goes to memory services and the memory clinic, they are very helpful and put me forward to the Admiral nurses again I'm not sure if they're in your area. Yes look to moving sooner rather than later and look into assistive technology, it may not be needed now but in the future. There are things like the care phone which can be linked to gas, co2, temperature monitors so if anything was left on such as the hob then the alarm would go through to the care phone oeople who would call the house. Door sensors which can be activated between certain hours if a person tends to wander, my dad did this. There are also gprs fibs so if they do wander they can be located. There are several clubs here too for sufferers and their partners to have a but if social , coffee mornings etc, all of which can help both your step dad and mum with support. The hardest part for me was dad didn't admit to having a problem and did his best to hide it so he was difficult to support. Good luck flowers

madamginger Wed 13-Apr-16 22:56:09

We're in Manchester, the memory clinic have arranged for social services to do a review of the house and they also arranged for an admiral nurse to come to the house and go through everything with them.
His GP has revoked his drivers license and he's finding that hard. He's still early in the disease and has more good days than bad at the moment (and long May that continue).
He and mum don't want to move house, they like where they are and it can be adapted as needed.
My sister took him to a coffee morning last week and he hated it, but it was mainly elderly suffers and their carers, and a lot of stuff seems to be during the day in the week and mum is at work so she can't take him.

Tessticklesyourfancy Thu 14-Apr-16 08:33:09

When the memory clinic referred dad to social services all they did was phone me to ask what he was capable of, lots and lots of questions, could he manage the stairs ok, wash and dress himself. They contacted me as my step mum has health problems. It took months and many phone calls before it was done properly. In fact it ended up with me in tears on the phone to memory services, they'd called me about something else, before it happened. I'm hoping that as your dad younger, though this is so sad, that he will get help far quicker. It was the lady from memory services who gave social services a kick up the backside. He had a home visit two days later and various recommendations were given.
I can understand your step dads reluctance regarding coffee morning as it will be mainly the older end, the admiral nurse may be able to point you in the right direction for support and meeting with similar people to him. He may well not want to attend anything like this though as seeing other Alzheimer's sufferes especially people who are more advanced may be very upsetting for him. At some point he will be offered a benefit check, there is attendance allowance which isn't means tested and is just over £55 a week, this doesn't need spending on care but as with dad I told him as he'd paid tax.all his working life it was a bit of extra help for when he needed it.

Tessticklesyourfancy Thu 14-Apr-16 09:02:40

Look on your council website too. There will be a section for care and support, that will give you an idea of what help is available through the council in your area both practical and support for your mum.

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