Distance from parents with dementia

[runningpram]

Would hugely appreciate help.
Dad appears to have early stage dementia. Forgetting where he is, doing the same task, ie shopping multiple times a day I've taken him to the doc on numerous occasions and they have found he has memory problems wit test.
However he and my Mum are in denial about it and refuse to take it further or seek any help. I live 300 miles away with very young family and work full time and spend every holiday going up booking appointments etc. Does anyone have suggestions about how else I can help them? I think my Mum is getting very isolated from it and it's causing her a great deal of strain. We own a property nearer to where I live, so I could potentially get them to move in there - although it's highly unlikely they would agree. However I am really clueless about I can be doing/ should be doing.

Anyone?

Is there anyone they would listen to? Vicar , family friend? I would suggest trying to introduce help asap such as Gardner, cleaner etc to get them used to the idea and then ramp up as needed. Contact age uk or admiral( dementia nurses) for more specific advice. It’s really tough 🌺🌺 also diagnosis can mean reduced council tax, attendance allowance etc, not means tested.

How old are they?

Moving might accelerate your Dad's decline.

You can't make them do anything. Unfortunately if there's denial going on you have to wait for it to get so bad - to the point it's all crashing down about them and they're forced into facing up to the problems. I spent years getting abuse because I would say I was worried about my mum and her strange behaviour. My brother and to a lesser extent my father would take her side and they'd all gang up on me so I was the bad guy. It all came crashing down this time last year and finally mum is happy, clean and safe in a nursing home.

Moving them nearer to you is not a good idea going from their reaction so far and one I suspect they wouldn't want anyway.

Hi OP, my situation is very similar but I'm a bit further on. We suspected my dad had memory problems but they only became fully obvious when my mum died unexpectedly - their GP told me later than in many couples, one covers for the other when they develop dementia and makes up for the deficit. It's common to find as you have that both parents are resistant to outside help.

You mentioned your dad having memory tests - are these the ones the GP administers? That was the first stage in my dad's diagnosis; after that he was referred to the local memory clinic, where more memory tests were done, and finally to have an MRI which confirmed the diagnosis. The GP was receptive to all this coming from me, so I would contact them and explain your concerns and your desire to put more support in place.

One really useful thing was that very soon after my mum's death I organised getting lasting power of attorney, both the legal and the health versions, for me to look after my dad's affairs. Would your parents be open to setting this up for you? You can emphasise that it only kicks in when someone is deemed to have lost capacity, so it doesn't take away their independence in the meantime - this is what worries lots of older people. But it will really help you further on if you know you can legally step in when needed.

What are the main practical challenges that your dads condition is causing? Does he drive still? How much day to day help does he need from your mum?

I don’t want to sound mean to your parents but I think you should consider not spending every single holiday with them. Their situation could go on for a decade and you still need space to make family memories of your own.

can you find a decent reliable cleaner/ home help locally for them. they need someone compos mentis to keep a watching brief. but I think honesty and respect/ warmth is more important than domestic ability. they are very vulnerable, and there is the risk that some dishonest person will notice and under guise of helping, take advantage. this often happens.
there is no effective treatment for dementia, so medical input is not so crucial IMO. its not like cancer that might be caught early.
dementia is relentlessly progressive.
the only thing is with a diagnosis they might get some council tax reduction. attendance allowance should be available without specific diagnosis. but you cant make them go GP. tricky.
admiral nurses are excellent but don't operate everywhere. more for later stages really.
I know how difficult it can be. one piece of advice wish I'd realised, don't try to correct factual errors. it's not like with children. quite the opposite. you cant teach them, correct them. try to enter their world. don't contradict them. go with the flow. emotions are more important than facts.

one piece of advice wish I'd realised, don't try to correct factual errors. Yes, true. But very hard when they're talking complete nonsense. Even more difficult - more than not correcting factual errors, also avoid asking further questions or saying anything that might expose the flaws in their story - this will cause them distress as it reminds them their brain isn't working quite as it used to. And in any case they will simply compose something even more fantastic to close the gaps.

Denial is very common but really unhelpful for you.
Whilst it is a progressive condition and can't be cured, some medication can help and certainly the practical interventions available to aid with memory loss are much much more effective if introduced while the person has sufficient memory and capability to understand how to use them.
Your Mum will need help as he becomes more dependent.
Wills, power of attorney, getting reliable trustworthy help in for things like gardening or housework are good ideas. Depending where you live Age.uk has a great scheme of vetted staff who will do various tasks to help keep people independent - it's not free, but I thought the fees were very reasonable. My PIL used this for a little while in Shropshire.

Unhappily, there's not a lot you can do until they will let you. It's horrendous.

Can you approach adult social services for help, or if he won't accept that, try the local Advocacy service??

My DB had a stroke & lost his job as a result, was badly let down by the benefits system & was looking at homelessness. I'm in a similar situation as I'm over 300 m away, though I can't travel much due to my own & DDs health problems. The advocacy service were brilliant & acted as a voice from him & got him rehoused in a disability flat

I did try with my dad as there was worries there too, but he convinced SS he was fine & we were just after his money & after initially agreeing to to an advocate, he turned it down when he realised that as he's well off he'd after pay

I feel for you & hope you find help

Do they have household help? A twice weekly housekeeper who can report back what's happening is a good starting point, there's also people who act as local guardians I suppose to oversee vulnerable people who's relatives are far away, or don't have relatives and are appointed prior to their mental decline (I do this for several people, I coordinate carers, arrange cleaners, pay bills and sort food deliveries and well as visiting in person once a week.). But it's worth broaching their living arrangements, is their house suitable for adaptation?

Another thread just reminded me of this. We used this company for my DF & it's decent quality food, much of which DF loved,the bit I liked is that the delivery driver can go up to 3 times a week & they keep an eye & befriend lone elderly people. This was fantastic, until DF decided they were too nosey

Yours might be better though, especially if you've just lost DM too, as having his meals cooked for him would no doubt be appreciated. My DF found cooking fir himself very sad at the time, so this was a godsend

Oops, Link...

https://www.wiltshirefarmfoods.com/?gclid=EAIaIQobChMI37XmxrzV5QIVA7DtCh2inQotEAAYASAAEgKWoDD_BwE

It's also good to have emergency holdalls packed and tucked away in a wardrobe in their house if one or other has to go into hospital unexpectedly. You know the usual for a couple of nights in hospital - pjs, spare knickers, extra socks, set of day clothes toothbrushes, shampoo etc
This one is harder to achieve but maybe a Godsend when long distances are involved -a keysafe with a spare set of keys positioned on an external wall or fence somewhere. Gives you peace of mind if they ever lock themselves out or else you need to phone someone to help them... This took us five years to achieve and we eventually did it when they were both ill in bed and couldn't see us outside fixing it on.

the thing is, even with dementia, unless they are medically assessed as being unable to express their wishes, or make any decision, its their wishes that count. even someone diagnosed with dementia has a right to express their preferences if able to do so. so you cannot just take over and arrange everything however well-intentioned. and certainly if they have not been assessed as lacking mental capacity, a person is at liberty to live as they wish, however stupid or self-defeating it seems to outsiders.
I was reminded of this by a consultant psychiatrist, elderly care, recently. its a hard concept to get one's head around.
but its a matter of personal liberty, and even if deemed by an expert to lack capacity, they still have to try to elicit the person's preferences, where that makes sense.
I may not have expessed this well.
by the way, I've found Parsley foods, from Edinburgh, very good, esp as they are stored in a box/cupboard not fridge. some people get confused and put hairbrush in the fridge, remote control in the freezer and chill food in the shoe-polishing box.
I once had a dream that I was trying to wash clothes by flushing them in the lavatory, quite funny, or was it. its in my family, dementia.

Offer to help them find a cleaner, gardener etc, and investigate other local resources. If they decline, it’s up to them ...and on that note, it’s up to you how you use your annual leave, so don’t be at their beck and call. You can only do so much.