Help! Planning next steps for ancient parents (one with dementia)

[Alcemeg]

So. Stupidly, I always imagined mum and dad would enjoy their quiet retirement in a small UK village, and one day pass away gently in their sleep. I lived alone for some time, and fondly imagined the surviving parent coming to stay with me for their final years. I'd make sure they had plenty of tea and entertainment, and it might even be a new lease of life for them in a way. I envisioned happy scenes with mum in the garden, sitting in the dappled shade of a tree, talking about old times.

In reality, I remarried and now live abroad. My parents are very old now; dad's over 90. They're both very frail and he keeps falling (syncope?), which is under investigation. He's also losing his mind. It's like a computer on the blink, with random pop-ups and the blue screen of incomprehension interspersed with patches of lucidity when he's engaged and alert.

I have two older brothers who live in the UK, a couple of hours' drive from mum and dad. They visit to do odd jobs and help with other things like online food orders. A recent triumph was that we found a local taxi service, and managed to get dad to sign the car over to my oldest brother to fix and sell (we lived in fear of dad driving into someone). Also engaged a local cleaning service.

Setting aside how depressing this all is, I am just wondering what happens next. We need to respect their independence, but up to what point? What happens when one of them wakes up to find the other dead? Should we be lining up a care home now? How hard is it to find a decent place?

This is all complicated by the COVID-19 situation, of course.

My brothers and I will be talking this through together and in preparation for our call, I'm curious to hear from other MNers who have navigated this sad and tricky situation. Thank you

Firstly do you have lasting powers of attorney for them? If not google and set up straight away. If may possibly be too late for your Dad already. If you have them - have they been registered?

My mum died at 67 from cancer so the problem didn't arise. My stepfather got to 83, and I bought a house with an annexe so that we could be on hand. He lived there happily for 8 years and died at 91.

@MrsPsmalls -- sorry, I forgot to mention that we are currently sorting out powers of attorney. Dad's still coherent for the most part.

That’s good that you are sorting out LPOA. What do they want to do? Do they want to stay in their home? They could have carers coming in a few times a day or even live-in care.

I spent the last 10 years of my parents lives managing their lives and care from afar so they could stay at home - in the end it was a daily carer (unless things had gone really wrong and then 4 times a day carers), district nurses every day, cleaner, lady to take mum out, handyman, gardener, lunch out everyday and an emergency call button thing. And it was incredibly stressful. A couple of times dad (physically the frailer of the two) got admitted to hospital and as mum wasn't safe to be on her own at all I had to use the social services emergency carer service to get mum into respite care the same day. I had a list of all the phone numbers for everything from their carers, volunteer car service, A&E, social services, preferred respite homes, and the funeral directors, and DH had this too as I normally travel for work - oh and all the things like DOB, NHS numbers and so on that people will ask you when you have a crisis on your hands
In the end, dad did drop dead (day 1 of lockdown 1 for added difficulty) and mum had to go into care which social services arranged.
Thankfully I had financial and health POA for both of them so was able to make hard decisions for mum. Their paperwork was a mess, but I was able to find everything in the end, but it really helps to know where everything is.
I'd also had to have a very tough conversation with dad about funerals, so at least I knew I was doing what he would have wanted, if of course not normal given the times.

They do want to stay in their home for as long as they can. They don't welcome visits from strangers and were somewhat reluctant to have a cleaner help out, but mum's eventually admitted defeat.

We're not rich people and I think the only way we could afford live-in care would be to sell the house, which sort of defeats the object. Perhaps I could move back to live with the surviving parent and look after them. This is all a conversation for me to have with my family.

I think by posting here, I'm just looking for any advice on finding a care home place, especially during COVID -- anything I might need to bear in mind, etc. I'm also fretting a bit about travelling to the UK for a funeral. The health system here is not very organised and I don't yet have a vaccine (working on getting one!).

I can relate to your fond imaginings OP!
But presumably they havd their own ideas about their old age and how it would have pan out, do you know what their plans are?

Thank you, @CMOTDibbler, that's helpful. I didn't know social services could help with placing someone into care. I wish I wasn't so far away.

so sorry to hear about your dad -- what timing!

@QioiioiioQ

I can relate to your fond imaginings OP! But presumably they havd their own ideas about their old age and how it would have pan out, do you know what their plans are?

I think their ideas matched mine, i.e. peaceful retirement with graceful passing-away in sleep one night.

I don't think their plans involved becoming quite as frail/confused as they now are.

I don't think you should volunteer to return to UK to look after either both or one. Unless you really want to. They need to buy in more help. It's a good start with the cleaner.

I wouldn't think too much about a care home place until you are set on needing one. Care homes can change, and whilst the might have waiting lists you can't really go on it unless you are planning to take the place when offered. Unless your parents lack capacity to make a decision it will be up to them not you anyway. In terms of paying for the care home, if one is still living in the house then it would depend on their savings whether the local authority pay towards it and this could affect what homes you can look at. I would suggest calling Age Uk or your local authority and ask them to tell you about the process and eligibility for a care act assessment and the processes around funding and organising care. In my experience a lot of people don't go into care homes and stay in their own home with an array of care and services. It is often when people have cognitive impairments like dementia that a care home is the only safe place.

The best thing would be if they would agree to having a health assessment with their g.p or nurse, many surgeries now have a dedicated frail elderly service where nurses, physio and ot can visit and see how they are physically and mentally and what help they need. Social services adult dept can also assess them, if they both have the mental capacity to make their own decisions and agree to having assessments it makes life a bit easier. If they own their own home they will need a financial assessment to see who pays for what but if they decide to stay in the house they can apply for equipment and grants. They might benefit now from a care alarm system and keysafe just in case they fall or need urgent assistance.
Maybe they would manage in warden accommodation or an aged care facility, not everyone needs a nursing home. Would anyone consider them moving nearer your siblings.
Age UK and CareUK have excellent resources and advice on their website about the formalities and what help is available.
If you are considering a carehome then Google homes in whatever area they would like to be in, the CQC do inspections but these got behind with covid. The best way is to have a visit. Some are offering virtual tours, you are looking at at least 1k a week each.

Your father, and possibly your mother too, may be entitled to Attendance Allowance. It is not means tested so financial stuff is not necessary. He needs to fill in a form, or someone else can do it for him, with every little detail about what he is finding difficult and falls etc. The money helps with anythings they need.
I find that people often don't know about this and could have claimed months before if somebody had told them.

Thank you so much, @Keha -- a care act assessment sounds like a good idea. I'm sure they'd both much rather stay put for as long as possible, but I worry for my mum being able to cope as dad fades. He's actually had an occupational therapist round a couple of times to assess him in relation to falls, but they were both very vague (in fact, rather mystified!) about how that came about and what the purpose of her visits might be. Talking to Age UK sounds like a good place for me to start.

@DogsSausages, I didn't even know about the care alarm/keysafe options. That's so helpful. And yes, for my mum certainly, I think warden accommodation would currently be a good option if all else fails (e.g. if dad dies). Even with help, I don't think she could cope at home and I think she might be glad of the company. Somewhere closer to my brothers would be good. I suppose what worries me is that things can clearly go downhill quite quickly at their age, so needs change all the time and it's hard to know what to anticipate.

I'll be doing my weekly Skype call with them both this afternoon (assuming dad can still remember how to use Skype; his technical competence varies from week to week!), so this has given me lots to talk through with them.

@Frankley, I knew nothing about attendance allowance either! It's a new phase in life for me, considering what to do with very old parents. I miss the days when they were in robust health. Not as much as they do, I'm sure; but as mum always says, whatever state they're in now is "better than the alternative" 💕

I'm so grateful for all this advice. I know it probably sounds really obvious to get in touch with Age UK etc (d'oh!), but I honestly wasn't sure where to start and now I have some really good pointers and feel a lot less helpless. Thank you

Attendance allowance is not means tested. It is worth getting help from age uk or carers uk to complete the forms.
Their county council website should have info about adul5 social care services.

Research your local Age UK or Age Concern for local services, and check out Independent Age. Lots of good advice above, but key is get those POA for everything in place before anyone loses capacity.

My advice would be once the claim for AA is in, to outsource as much as you can, as early as you can. Parents will always say they don't want strangers in the house etc, but I wish I had done all that much sooner, rather than playing along and pretending DM wasn't too bad. Cleaner, gardener, meals on wheels, patient transport account or companion/carer for trips to GP/hospital appointments.

Local FB groups can be good for recommendations for stuff like mobile hairdressers.

Yes Attendance Allowance is very helpful financially. Also if they have savings, this is what they should be using them for. If your parents say no, insist.

I echo PPs saying to get in as much care and help as you can. It is a steady decline from here unfortunately. Even things like cutting nails become difficult. I used to take my mum to the podiatrist (to cut her toenails - tried myself, couldn't do it) and hairdressers, but eventually got people coming to the house to do it as she became less mobile and unable to get in and out of cars easily.

Don't move back to the UK! Maybe plan more frequent visits.

Perhaps I could move back to live with the surviving parent and look after them. No, don't. If they need you to do this, it's because they need 24 hour care. And that can't be provided by one person.

Echo the outsource what you can. Your biggest contribution is with information gathering and decision making. And that's a big enough job in itself.

From my own experience I would be very slow to take action until the current situation really isn't working. Its very hard to predict what needs will be in the future, and moves are extremely stressful for older people.