Checklist and action plan after diagnosis

[Barracker]

Does anyone know of a clear and simple bullet point of administrative actions that families of the newly diagnosed can check off in order, please?

*Power of attorney
*Contacting social services for a care assessment
*Visiting care homes
*Entitlement to council tax exemptions
*Informing the DVLA

That sort of thing?
I'm finding information in dribs and drabs, on webpages or forum threads, but it's all either disparate or incomplete.

This strikes me as the sort of thing that mumsnetters would have cracked onto and produced a "do this next" type idiot's guide.

If there is something of this nature, UK specific, could someone kindly signpost me to it please?

I have 10 years of experience caring for 3 relatives and this is what I have learned . Apologies in advance as this might be long.

The very first thing is to make yourself a file that goes with you everywhere. I am a dinasour so mine was paper. You will be asked for the same information and and over again. Quite often in the same conversation and also at times when you are feeling stressed.

Writer their name, address, telephone numbers, DoB, place of birth, DoM and place of Marriage, NI number, GP details, list of medical conditions, list of prescriptions, dates of hospital admittance.

Every time you phone on their behalf, make a note. When you phoned, what time, who you spoke with, what they said. They record your conversations and when they deny knowledge, quoting dates and times works miracles.

I found that the Utility Companies were the very best at understanding the needs of dementia customers. Let them know you have PoA and they are very kind. British Gas have a system where they will phone just before an engineer arrives and give the name . Unlike Hospitals who have been known to phone a dementia patient with a message of a changed appointment.

Get their post redirected to you, if necessary. This prevents scams on their Bank accounts, allows you to see if they are paying for things no longer required. [ pet insurance for a pet dead 2 years and paying too much for other insurance products.) in my case. This is also invaluable in keeping track of hospital appontments.

LAs work under extreme pressure so try to be a friendly as possible. However, using the phrase, “This is a vulnerable adult and I am desperately worried” often helps. If in hospital, find out which Social Worker and OT are dealing with them. Again note down and try and get their telephone numbers.

AGE UK are the most helpful, sympathetic and knowledgeable people. They have calmed my tears on many occasions.

If possible try to get yourself onto at least one of their bank account as a joint holder. This saves many issues around PoA which should be easy but often is not. Try to get their accounts consolidated and keep meticulous records of all transactions.

Have a conversation with them about final wishes in hospital. Although not legally valid,my Mother and Stepfather wrote living Wills. Doctors involved in their end of life care were grateful for this insight. In both cases it prevented them going into the ICU.

Please contact me if you have any specific questions. I am not an expert, but can probably point to one. The very best most supportive people are those on the MNet ‘Caring for Elderly Parents’ thread, the combined knowledge and kindness plus the fact that they are facing the same issues was a life saver for me.

Greta post Florentina, thank you.

Great post Florentina, thank you.

Thanks Florentina.
I am not the carer, this is regarding my dad. My mum runs their lives but is somewhat in denial about what she is, which is his carer, really.
So she currently is strongly opposed to any involvement from social services or 'help'.
Although she knows he is diagnosed with Alzheimer's, she just carries on as if this wasn't a problem.
Bills and finances etc are already organised by her.
She is not considering or making provision for the future. Cannot conceive of care homes.

My request, I suppose, is less how to take over bills and hospital appointments, because the day to day management is taken care of already.

I'm looking for a list for carers that I could give her that would suggest things like
Step 1. Organise a 'care assessment', with an explanation of what one is
Step 2. Claim this allowance
Step 3. This is what 'respite care' is, and how to get some
Step 4. Power of attorney etc
Step 5. Check out care homes for the future
Step 6. Inform the DVLA - criminal consequences if you don't
Etc

In all likelihood she won't prepare or act on any of it. But at some point Dad will deteriorate to the point that she can't just carry on pretending it's nothing more than a silly memory problem and nothing more.

If nothing else, it might be helpful to see the steps that other people crack on with when a loved one is diagnosed.
I don't think she has made any changes or plans for the future at all. They are both in their eighties and this can't continue forever.

I mean this very nicely Barracker but if your mother doesn’t want help there are limits to what you can do. And I say this as someone in your position only it’s my mother with dementia and my father in denial. I do what I can to suggest - but am not prepared to spoil my relationship with them. The last thing I want is for them not to ask for help when they finally realise they need it. It’s very frustrating - but it’s their lives.

Thank you, and I agree, but I just hoped to plant a seed.
Things are very, very difficult. I'm pretty much estranged from them for the last few months, having previously been very close, and it's due in part to their determination not to look reality in the face. I cannot play a part in the pretence any longer - because Dad can be a liability - and they have chosen to handle things as if none of this is a big deal.
Dad's diagnosis finally came last year but his Alzheimer's has been apparent to me for almost a decade.
I am hoping that at some point, she will understand that she cannot continue to manage their lives by pretending to both of them that nothing is wrong.

Some older people are very wary of any involvement by social services, either because in their minds they are needed only by the feckless/improvident, or because they think they will interfere and poke into their private affairs - or even split a couple up 'for their own good' by forcibly moving one of them into a care home.

If this last might be the case, it's worth pointing out that councils are so strapped for cash that it's very much a last-resort thing - they try to keep people at home as long as possible, even when family carers are on their knees with exhaustion.

Refusing help is very common, both from the person with dementia and the spouse/partner. Sometimes, sadly, you just have to wait for some sort of crisis to change things. I know personally of two couples where things had to get to serious crisis level before anything changed. It's very hard to have to stand back and wait, though.

@Barracker, I mentioned your thread to dh who is somewhat further along the dementia journey with his mother. His recommendations are (1) sort out PoA for both your parents if not already done; (2) sort out wills for both your parents if not already done (and also see 4 below); (3) ask his gp about the drug that slows progression - sorry we can’t remember the name; (4) if your parents own their home as joint tenants consider changing that to tenants in common setting up a will trust so that the share of the first to die is potentially ringfenced from care costs for the survivor; (5) consider splitting any jointly owned savings into separate names so that your mother doesn’t lose her share to fund care for your father; (6) spend time going through old family photos etc writing on the back who they are.

Hope some of this helps.

Thank you so very much...I really appreciate this insight.
I know my mum isn't ready for any of this yet, but I'm hoping that at some point she will be.