Df Alzheimer's & the start of a long journey.

[Jinglejinglejingle7]

Df diagnosed in October, memantine proscribed before Christmas. He has good and bad days. He has started waking in the middle if the night, getting up at 3am and making tea for my mum, bringing back up to her and waking her- this is the normal routine but not at 3am! He has a digital clock next to bed. Any advice in this? Im a little worried he will go out one night thinking it's daytime....
We've also had lots of obsessive behaviour- eg about his bank account- accusing my mum of moving his money out of his bank account etc. Telling people he won £22,000 on the lottery and is going on holiday etc
Both myself & brother have LPOA. Were getting to the point if needing to use it i feel.
2 things.
1- any ways we can practically help my mum manage?
2- He has good days too so don't want to take over but I feel he might do something silly with money, not sure how to try to balance this with bank etc- should we tell them he has Alzheimer's?

Sorry for the ramble!

I'd definitely tell the bank.

Yes telling the bank is a good idea.

Complete a Herbert Protocol form https://www.dementiauk.org/information-and-support/living-with-dementia/herbert-protocol/

Think about assembling a team of carers (assuming your parents have the means to pay) to take some of the load off your mum's shoulders.

Be careful when considering how to stop wandering at night. Its all very well saying lock up each night amd squirrel away the keys but in emergencies the key needs to be handy. Tricky one.

The disease can advance very quickly indeed, and the idea of a slow and gentle decline can be superseded by jumps downwards in abilities.

I am so sorry, it is awful.

Did the 3am waking start after the memantine, or was he already doing that? If it seems to be related to the memantine, he could try taking it at a different time of day.

It sounds like you should begin using your finance LPA. Have a look on the bank's website for their LPA protocol, I had to visit a branch with all the paperwork but that was several years ago so there may be a different procedure now.

Put a blocker on the landline to intercept cold callers to reduce the scam risk.

Consider a tracker bracelet to help find him when he wanders ( if he does) it’s not always possible to stop them as they can become very aggressive.

Im sorry you’re going through this.

Look up “sundowning”.

Some areas have courses/carer groups for partners/children, they can be a wonderful source of local information and insight.

I assume you have POA for Heath and Welfare too? If DF’s good days are good enough, can you have a (admittedly very difficult) chat with him about how he wants his medical needs to be managed? When he loses the ability to choose for himself you’ll be responsible for acting in his best interests, and that includes acting in accordance with his known wishes. I know this seems very premature but have a look at Compassion in Dying’s advance decision information to give you a feel for the sort of decisions that might have to be made.

If you do ask your dad's opinion on his care, I would be careful about making promises about 'we will never move you to a care home'. People with dementia often have fixed but unrealistic ideas about what they want, which is totally at odds with what they actually need. Some steadfastly refuse professional carers whether at home or in a care home. But at some point it is almost always necessary, and it feels easier to do it if you are not breaking promises.

Thanks all so much. Myself & brother have both LPOA so we will try to have a chat about medical too. He had a TIA a while back & heart investigation. Dad thinks he'll need a home (as his mum did) but believes ge nowhere near that yet. Mum is struggling but not wanting to fave caresses yet....

Ill look up sundowning now.
I've been into the back- they were great- all sorted now so I can do bills/ do online/telephone banking on their behalf and ill have a card too.(Barclays)
Ill try to block landlines cold callers and a tracker is a great idea as he's started going to a walk on his own- very suddenly- and can be gone over an hour!
I think the getting up started after the medication now youve asked so ill mention that to Dr.

Thanks all so much.

That is good news about the bank, that is one thing off your mind now.

My mother was initially offered memantine but the doctor decided against it as it wasn't felt to be that helpful. So at least I didn't have to worry about side effects from that.

It is good your dad has agreed previously he would need a care home, but of course he doesn't now understand what his needs are unfortunately.

If you get your dad a tracker, make sure it is one he will actually wear. My mother had a bracelet type and she would remove it as soon as the carers left. She would not wear anything 'foreign' to her like a pendant and she didn't reliably take a bag or wear a coat when she went for a wander, so there was no way of ensuring the tracker stayed with her.

so sorry to hear you are also on this journey.

I’d look at getting carers set up sooner rather than later, introducing small things they can do to help your mum out. It is easier to tea mo up care when needed than the teething probs associated with introducing it to parents, IME.

Thanks @rememberdecember that's a good idea.

Sorry your family are starting this journey, it's so tough

I would start registering LPOA with everyone, e.g DWP, Council Social Work, Council Tax*, Private Pension Company, NS&I if he has Premium Bonds etc.

Best to do it before you need it as some companies make it very difficult (Post Office and NS&I were flipping awkward).

We even had online banking for our relative with bank of Scotland which meant we could monitor daily and proactively cancel charity Direct Debits after MIL was set upon by cold callers.

*If you haven't already, apply for a 25% Discount from Council Tax. Should be a form on your Council website under the subject "severe mental impairment ". Also, he should be entitled to Attendance Allowance.

@OSTMusTisNT thanks, actually I hadn't thought of all that. Ill have a look at council tax- does this depend where you are?

Every Council is the same, it is set in legislation.

I came on to say about Attendance Allowance too. Also, I’ve found Dementia Uk charity really helpful.