To not tell my older brothers this..

[Capricorn8990]

So today I found out following a scan that my dad sadly has Alzheimer's. I'm usually the person who messages my brothers to let them know when he has been admitted to hospital and I update them on his progress. They never text him or call my mum and basically wait for my updates.. they've not bothered with them for some time but I update them cos they can't say they didn't know..

Do you think I should message them or wait until they call or text my dad which is very unlikely.. would I be unreasonable not to tell them?

My parents have tried over the years to communicate with them but they just don't seem to care.

@AlDanvers

I think if you ha e updated them to this point, this is such a big thing you should tell him.

Then tell him if he wants further updates, then he needs to get in touch and you won't be automatically be updating.

I really agree with this. You have set the status quo so should be letting them know when you are stopping and not stop by not saying something huge. This will come back to bite you otherwise.

I'm really sorry about your dad though. Give yourself a day or two to process the news if you need to before sending text.

As well.as the POA check he is vlaiming attendance allowance. It's not means tested. Age Concern helped ILs complete their claim.

I've got the ball rolling with a POA! Thanks for all the advice x

Well done.

It may be a little too early to apply for attendance allowance, though if you know anyone in care or perhaps AgeUK they may be able to help. It is a difficult form, first because you have to be negative about your parent’s capacity, and second you need to tick the boxes and professionals are better than this.

If your parent has a dementia diagnosis and you have POA you may be able to sign this unflattering portrait yourself in place of the parent. Your mother might be eligible for carers allowance. It’s not means tested so can be useful.

Next step.head off to the elderly parents board. It’s a tough old journey and there is real support and knowledge in this obscure bit of MN.

Thank you for the brilliant advice @Needmoresleep x

@Capricorn8990 sorry for the delay coming back to you. So take the following with a pinch of salt - this is just my experience and my Dad is years down the line from where your Dad is. We've seen the signs of memory issues for years, first classed as just short term memory loss but later as alzheimers. (Then 6 months later undiagnosed, then a year later re-diagnosed!! Did not help as in the intervening time my Mum did not get on any support pathway.) He did go on some meds but both of them didn't agree with him (made him depressed, other one gave him night terrors). Hopefully your Dad will get on better with his, they help to slow the progress. Does he remember his diagnosis now he's been told several times? My Dad was way worse when covid struck and he does remember that now - elbows only, no handshakes etc!

My Dad is still aware he has memory problems which is quite useful as we can remind him of that to help him put things into context. It took from 6 years ago seeing behavioural issues as well as memory problems (we had to manage him so he didn't get triggered by sensory overload from my kids boinging around) to 2/3 years ago he couldn't remember yesterday (even Christmas Day). Then 1-2 years ago my Mum and Dad would be driving away from lunch at our house and he would say 'you've got a lovely family' and she had to tell him but it's your family too. Whilst he remembered us in the house, he'd already forgotten who we were and who my Mum was as he was focussed on being in the car. Your Dad sounds a long way off this.

What I would say really helped was when my Mum, who was just honest to the core, learnt to lie to him. She struggled for a long time with lying, couldn't lie off the cuff and that caused friction. Much easier to go with the flow when you can with alzheimers, better for them, better for you.

Last summer my Mum very unexpectedly collapsed and died instantly and I had to drop everything and live with Dad for a few weeks until we had the funeral and got him a place in a care home (luckily we were pushed to the top of the list for a place as there was no way Dad could like on his own and there was a limit to how long I could stay there). It was such an eye-opener to live with him and see just how relentless he was, continually coming to find me when I was sorting things on the pc, asking questions, looking for Mum, not remembering she'd died "who died?" "my Mum died?" - no, your wife "my wife?" (can't remember wife) "but you're upset, who is she to you?" "need to put the outside light on Mum will be back soon" or, it would be like telling him for the first time and he'd be distraught. With the tunnel vision that his brain had, for a while he saw me as his carer, not daughter, as that was the role I was playing. That soon reverted once he was in a home. I do understand that the shock of the sudden bereavement had made him worse as well as suddenly so many things were different. My Mum would normally have been able to leave him for a few hours, go shopping see her friends, hide in my old bedroom and do craft things whilst my Dad would watch TV. There was some part of him that knew things were different when I was there.

So, when I say Mums don't tell you everything - that's what I mean. I often said to her that I could take him to his day centre and pick him up, or could babysit him - she didn't often take me up on it. I think to a degree she had got desensitised to it, also 'in sickness and in health' but I realised afterwards she must have been walking on eggshells a lot of the time to not trigger him and I'm really sad that I didn't know how bad it was to push her to accept more help.

Hopefully your siblings will step up in some way to support your Mum. I used to chat to my Mum daily so I knew lots of what went on, she didn't want to tell her friends as she thought they'd think "she's going on about her husband again". I don't think they would have. So I used to encourage her to chat about her day, what had gone on so that she wasn't holding it all in. Nothing either of us could do, apart from commiserate and sometimes we just had to laugh.

Anything to get the ball rolling with now will be a help to both of them in the future years. I can see that some people have given you other advice (I'm not in the UK so no idea about benefits etc) but search out what info you can as that will be really helpful going forwards.

Even though my Dad is now in a home I have started reading "Contented Dementia: A Revolutionary New Way of Treating Dementia : 24-hour Wraparound Care for Lifelong Well-being" which is looking quite good. I had never thought to read up on this before but wish I had.

In all of this, remember - this is slow progressing disease. Aside from getting the POA done, you have time to get your head around what this means for all of you and get things in place. Your Dad is in a good place that he is now diagnosed and both he and your Mum can start on a pathway to help them both.

If you want to message about anything please do. And remind yourself regularly to take care of you, you absolutely need to be looking after you too at this time x

Just to manage your expectations on POA. We sent forms off for my parents in July 2021. Mum's has just been completed. Dad's are still waiting, have a couple of minor issues, but they take weeks or months to actually write to you to get issues sorted. We are nearly there, but they are like the sloths on Zootropolis. Everything moves at a snails pace.

The whole administration around the elderly seems to have collapsed. We paid DMs inheritance tax 15 months ago and are still waiting for the vital tax certificate that will allow us to complete the probate.

The point of a POA is that the Attorney only takes over aspects of finances and decision making when the person starts to lose capacity. So you can set it up years in advance. If you don't have it you have to go through the Court of Protection, which was even before lockdown way further down the scale of sloths on Zootropolis, and far less user friendly.

So do it now.

If your parents are starting to struggle with finances and the POA is taking a while, your parents can sign a third party access form which would give a third party (you) access to their bank account. You can then do internet banking on their behalf. (My mother was vulnerable to fraud, so I set up a small second account, like a teenagers one with a card, but no overdraft or direct debits, which I could top up on my phone and hid her cheque books and bank statements so she could not give out bank details. I also got her to sign a mail redirect so she no longer received the mountain of charity begging letters. Sadly I also had to change her phone number because she was on too many lists.) But this is probably in the future. Perhaps a way of saying that going forward the focus will be your parents. Be polite to your brother but lower any expectations and try to cut off emotionally.

This might be a time to have the conversation about your future wishes. Is their home right for them of do they want to move to something more future proof, perhaps with company and support for your mother, or will their house need adaptations like replacing the bath with a level access shower. Also things like DNRs or funeral arrangements. This gives you a chance to research and ask around. My mother bought a flat in "very sheltered" housing through a provider called Retirement Security Ltd, which I would thoroughly recommend, which had with a 24 hour warden which saved her from going into a home, and not only provided more independence and better quality of life, but saved an awful lot of money. However it is important to research as some sheltered/elderly housing comes with a lot of restrictions, high service charges and low resale values.

I wouldn’t do jointly and severally tbh. That’s what we have for executors and trustees of our children’s inheritance in our will so I know it’s a great concept, but these brothers are not there, they haven’t cared, why would you set it up so a. You have to negotiate with these disengaged people to get proper care for your dad or B they can go from being awol to making critical decisions for him including finances while leaving you out? Don’t put anyone on the POA you don’t trust to have your dads best interests in mind.

When it came to time for POA for our mother, my brother and I set up the financial POA as 'joint' meaning that both of us had to sign off on any financial dealings. Brother and I trusted each other implicitly but just wanted to avoid any possibility of someone else thinking one of us was trying to pull a fast one, or if anyone tried to pull a fast one on either of us there would be two 'heads' making the decision. The medical POA was technically either with me listed as primary contact, brother as secondary if I was not available. My brother is not comfortable in 'medical situations' and just didn't want to be making 'life or death' decisions for our mother.

It worked just as we wanted it to and we never had a disagreement over finances. When it came to Mum's 'last days', she was diagnosed with Covid and given her severe dementia and age (99) I decided that she was to be kept comfortable and that she would be allowed to 'slip away' if it was her time to go. She died peacefully within 24 hours. My brother agreed (I consulted with him) but he said he'd never have been able to actually 'make' the decision rather than just 'go along' with it. A small difference for him, but allowed both of us to be at peace with letting her go.