Both parents now have cognitive decline

[Cheetoo]

My parents are early 80s . My dad has had parkinsons tor 7 or so years and my mother now seems to have early dementia. His memory is OK but his executive functioning v poor (mobility v stiff,couldn't answer when someone asked his address , cant handwrite or add 2 +2 etc).
Her short term memory v poor. She asked me about 15 times about the date/time of a party recently for example.
Their ability to manage admin has all but disappeared, any kind of paperwork is incredibly stressful and they cant operate phones or Internet at all (previously v savvy).
I am signed up as their POA but its not triggered yet as they are currently independent but I can see it coming

Don't know what im really asking just wondering has anyone any advice or similar experience. I am quite isolated as asides from my husband i am the only person really involved with them currently and hes great so i dont want to ask more of him than he already does.

@Cheetoo sympathy with you. Not sure if you ever visit https://www.mumsnet.com/talk/elderly_parents/5577860-cockroach-cafe-autumn

It can be a life saver.

My immediate advice is to look after yourself first and foremost. There are so many of us in this situation. Are they open to outside help such as meals delivered etc?

On their POAs for finance did they tick the box that it could only be activated when they have lost capacity, or that it could be used straight away?

Fingers crossed it's the latter as then you can just go and get them registered at their banks as it does take time.

DH and I have them for our mums and have found a slow pick up of admin tasks, which take us minutes on line but take them days, works well.

You will also need signed letters at their GP to give permission to talk to you, aside from the Health LPOA.

If you can have their NHS app that's also a great help.

Have you got other family members to share the load? It can be incredibly time- consuming and draining always being the go- to person, especially when other relatives keep asking for updates.

Good point about the letter for the GP. My mother refused to sign one for me and it is a nightmare. She refused everything to be fair. Good luck and take care of yourself.

In practical terms, they cannot do admin or use a phone, neither has functioning cognition for simple daily activities so they are by no means independent. I suspect the only reason they seem independent is due to your input.

You need to activate the financial POA. When I needed to use my mother's LPA because she could not deal with financial admin, my mother's solicitor (who held the original of the LPA document) asked for a letter signed by her requesting him to release it, so I typed it and she signed it. He then sent me authorised copies on request.

I am an only child, no other relatives so I had to do it all on my own (with my partner's support). It is hard, but there is a benefit - there is no other family to disagree with you and make it harder. Of course they were decisions I didn't want to have to make at all, but when I made a decision at least it was straightforward.

You will get lots of support on here if you keep posting.

Sending love

I am a few years past where you are now. Also an only child with 2 parents in cognitive decline. It can be lonely and isolating and the responsibility can feel overwhelming. However there are ways to reduce this. Reach out to support groups and charities- they can point you in the right direction with regards to what your parents may need. My parents have lots of tech in their home that has helped them stay independent. e.g. their heating and co2 monitor is linked to my phone so I can check if its working without driving over- as are their lights.. The TV remote is a simple on/off volume and channel buttons, as they were always confused with the old one and phoning for help. I had to get outside help, weekly cleaners, meal prep and delivery and they have a buddy who takes them to a pensioner club every week.
I still am there 4 times a week for household tasks and admin but its manageable with all the extra support.

My initial advice though would be get POA triggered asap

If admin is difficult its easier to start sorting that now as life gets busier and with everything it takes time. The sooner its sorted the better.
Get copies of the POA certificate ordered as everyone wants to see it.
It meant when I needed to bring in extra support and do more admin, it was so much easier.

I found the Cockroach Cafe really helpful. It felt less lonely in our own circumstances. I felt less guilty about my own decisions.

Our story goes back to 2024 when DF had a fall. He had undiagnosed dementia but living with mum. Both in early 90s. He never recovered physically. It was clear Mum had only been coping with his support. When he passed away mum was reluctant to accept carers. We were able to reduce the number of visits but as DS live a long distance away we insisted on them as welfare checks. Two years on Mum has rapidly deteriorated and now is in a care home.

Ref your POA - we have it but the bank just wanted consent - DM had to give verbal consent while my DSis was on the phone with them. Now with online banking it is much easier for DSis I can’t do it because I don’t have a UK phone number.

Cameras in the house was really helpful. We would get stressed when the phone went unanswered - cameras would show us if mum had just fallen asleep in her chair, or on several occasions if she had fallen. Eventually in the summer the cameras showed us that Mum was not safe alone at home.

You did not mention an Attendance Allowance - but that is something worth persuing to afford help with cleaning and in our case cutting the lawn.

These are just two suggestions. Can I offer a virtual hug too. It can be hard.

You are supposed to be able to use a code to identify that you have POA. I have set this up - but have found the first time I attempted when Dad was near the end of his life NHS did not seem to have any idea what I was showing.

🤦‍♀️

Thank you all so much for your replies I will definitely check out the cockroach cafe and online forums will definitely help me feel less isolated.

I think its a combination of feeling isolated myself in that i m not close to anyone IRL going through similar and at the same time my parents are becoming increasingly isolated aswell as their social life has really fallen off

Agree, however, most places have no training on POA which is why I have multiple copies. Banks and businesses want to see the actual certificate and I find certain banks want to check every time I am in. Others are more organised and have my details on file. Even this week my friend was asked for proof of POA to get her mums flu jag! The nurse was being over zealous but poor friend had to leave and reorganise the appointment.
@Cheetoo Check out if there are any support group for carers in your area. I used to go to one monthly. We did arts and crafts or yoga or such and it was a great way to meet people going through similar circumstances.

Same here, Dad has lost the physical capability to do admin (can no longer write, use a keyboard and his executive function is too slow to have a meaningful conversation, but he is still “with it” and has capacity. DM lilkewise has capacity but short term memory problems and extreme anxiety and had always let Dad do all the admin.

We had to get them to write to the solicitor to grant consent to them releasing the LPAs to us. I have only needed to produce the hard copies a couple of times, most places I have dealt with have accept the online codes for finance LPAs but they all have different systems and it can take weeks and they want various other bits of info. You can’t always do everything online either. My best advice is start as soon as possible, keep notes of what you have done, all the new logins, phone numbers. Whenever you need to phone a bank etc ask straight away for the LPA dept as normal customer service people aren’t usually trained in it all.

I keep scanned copies of the LPAs on my phone for emergencies (eg hospital) - I’ve never used codes for the health ones but as both have capacity I have been showing them to HCPs more for just in case and to prove that they can phone me instead of the other parent. I had to show them in a bank once too, but my parents main bank (Lloyds) just look it up on their system now if I go in.

Oh also make a note of their NHS numbers and NI numbers too, those are useful to have.

My mum activated POA with my grandad when he was generally struggling to cope with paying bills etc.. Do it asap, it will be far harder to navigate if they lose capacity.