Alzheimer’s advice

[shewhoknows]

Would love some advice to help my Dad who is caring for my Mum. She had the diagnosis a year ago, but he says they have since had no guidance whatsoever (I think this is a lot to do with them not following up). They live at home. They have one family member 20minutes away but they aren’t in a position to help. I live 5 hours away. I come down when I’m able but it not regularly. They have a nice neighbour but I worry they might lean a bit much on that person in future if I don’t help him find help.

I think - at this point - he would like to have a chat with a doctor about the route forwards (he has no clue how far along she is). I think he would like to find out also about groups / visiting volunteers.

I will be googling the latter and I hope a doctor would happily have this conversation with him (he’s not proactive with this. It’s very frustrating) and probably be able to give him some local places to contact.

I just wondered whether anyone has any suggestions or advice.

Hi

I'm 3 years into this. Mum about to go into a home. Dad now has a live in carer (cheaper than a cleaner coming in, more flexible for him and more consistent staff). I feel for you.

Some GPs have a social prescriber who aims to bridge the gap between a GP and clients. Ours has been a god send. She has chased up the pathway, helped with carer lists and generally been a rock. She also helped my Dad come to the realisation that he needed carers, which he might not have taken from me.

Also Dementia UK have a service where you can book a 45 mins chat with a trained person. I found that very useful. It helped me get over the shock.

It's Alzheimer's UK or Dementia UK that have a forum where you can search for info.

With carers, try and get recommendations. Be really clear about what you want. We went through 3 agencies before we found the right one. They weren't awful just not right for them.

Age UK have activities in our area to take people but less active involvement.

I had to fill in a form for the Attendance Allowance. It's not means tested and as you have a diagnosis - it'll be backdated to that point. You can use it for whatever you want, the money is just paid into the account. It might help pay for a little extra help. Also, apply for a reduction in council tax, since your mum's diagnosis means that this is offered.

Make sure that a Lasting power of attorney is done for both mum and dad. The forms (health and welfare and finamce) is on the govt website. It's not difficult to fill in, getting the signatures in the right order is a bit tricky. You don't need a solicitor. I kept mine and my parents as brief as possible as you don't want them to specify too much (e.g.id like to go dancing every week), as your tastes/abilities change. It's better to do a later sheet which just guidance which you file with it.

Everyone's dementia journey is different. Alzheimer's UK have a set of stages they say people go through, my mum has had a bit of one and a bit of another.

It'll be worth getting some paid help for your Dad. You might want to paint it as a housekeeper or cleaner rather than a carer.

Thank you. This is really helpful!

Forgot to add our council website also had a list of charities that provide events etc, trips out, talks - the local library also hosted events. If it's for your dad, Google probus, university of the third age.

We're in a very similar situation. My mum has only recently been diagnosed, but this was really late - she's clearly had dementia for a while now. Although everyone's progression is different, I do find the stage descriptions quite helpful in giving a sense of where she is and what might come next, and the seven stage model has been pretty accurate in describing the way her symptoms have changed (she's somewhere within stage 5 now, I'd say).

My dad is very similar to yours, in that he's reached a stage where he theoretically wants support, but nothing's really happening. I try to encourage him to make notes at appointments, and I came across a sheet of paper where he'd written down various organisations that the GP had clearly recommended, but he hadn't contacted any of them. I think he struggles to know what support he and mum really need, and doesn't know what he should be asking. I've suggested trying some community groups, but he thinks mum would be resistant (and he's probably right). For a long time he's strongly resisted the idea of actual 'care', but things are now reaching a stage where the need is greater. He's still resistant though.

It's really, really hard.

My mum was already in care when we realised that she had dementia. I found the Admiral nurse was incredibly helpful:

https://www.dementiauk.org/information-and-support/how-we-can-support-you/admiral-nurse-dementia-helpline/?msclkid=f334bcbf3a3612306536d65e1b3923a8&utm_source=bing&utm_medium=cpc&utm_campaign=Dementia%20-%20Helpline%20%5BTier%201%5D%20%20-%20%20%5BDEM02%5D%7BMicrosoftAds%7D&utm_term=admiral%20nurses&utm_content=Helpline%20-%20Admiral%20Nurses&gclid=f334bcbf3a3612306536d65e1b3923a8&gclsrc=3p.ds&gad_source=7&gad_campaignid=21378921814

I only had one appointment but it was really positive and helped me come to terms with the way things were going.

It's worth completing a Herbert protocol in case she might wander off. https://herbertprotocol.com/

Social prescriber is really good and also look for local Facebook dementia groups. Also Google something like dementia support 'county'. Sometimes the local post diagnostic advice is provided by well know charity but sometimes it's a less known organisation although the service cancelled he just as good or better.
Can you say what county?

Is there a local dementia charity? When my relatives accessed that they were given information like “on diagnosis, x y and z should have happened” in the local area. It really made a difference. Like your relatives, they weren’t very active in following up (and like with many GP surgeries, they are so overstretched so it feels like a bother getting an appointment).

My other thought is. If you are self funding, don't get an assessment from adult social care. At the beginning, when they were phoning me due to a safeguarding referral (Mum had wandered off and the Police bought her home), I expected them to do something. Unfortunately if you have money, you are not the priority.

Adult social care are inundated . You can get this assessment from a care company. Ask that you have a named carer and specify what you want. Hourly care is more expensive than live in. As to what sort of care/hours etc, I would start with say 2-4 hours respite, cleaning or companionship and then work out from there. Just be aware that the care company won't advise what hours etc. you have to do that.

I would also go back to the GP. It's difficult as your Dad will be dealing but my mum was on patches specifically for Alzheimer's.