Elderly relative is losing it, but refuses to recognise she is losing it

[TuttiFrutti]

My aunt, 77, has had the early signs of dementia for about 2 years now. She has never married or had children so we are her only family.

At firs it was just forgetfulness, but now it's got to the stage where I am worried about her safety. She loses her keys and her diary, can't remember where she needs to go, and is incapable of making appointments or turning up to them without help. Her house is filthy and the garden is like a jungle. She owns a flat in London as well as her cottage in the country, but refuses to consider selling it.

In fact, she absolutely refuses to get help. I have suggested getting a cleaner and a gardener but she won't hear of it. She is quite well off so she could easily afford it, but she says it would be "too much hassle".

My sister and I have a lasting power of attorney (thank goodness!!!) which she signed several years ago when she was still in her right mind, but apparently if we exercise it it's a "nuclear option" and she would lose all financial control herself and no longer have a chequebook. This would be really hard ot explain to her.

We have contacted her GP but they need to contact her to make the appointment. She doesn't pick up messages on her answerphone. So far we have not got an appointment.

Has anyone else been in this position? What did you do?

Has anyone else been in this position? What did you do? Waited till they accepted the need for help.

Look at it from her point of view. She may be aware she's losing capacity, is desperately hoping it's old-age forgetfulness rather than dementia. You may want to "keep her safe" - she may be concerned at losing her autonomy. None of us likes the idea of someone coming in and rearranging our house, redesigning our garden without our agreement. Later on it extends to not being able to eat what we like when we like, not being allowed to get out of bed when we can't sleep.

You could see whetehr there was any technology that could help - Alexa based appointment reminders, location devices on key fobs, etc.

The whole issue of "capacity" is difficult - it means capacity to understand the decision and the consequences, rather than always making decisions that relatives think are the right ones. Capacity includes the capacity to make bad decisions.

I presume from your comments on PoA that it was set up only to take effect once she had lost capacity. Or was it an old style Enduring Power of Attorney?

I went through the same with MIL. I spoke to her Dr and he visited her. We got an appointment for hospital and eventually got a diagnosis of vascular dementia. It was a pointless exercise as there was no medication or treatment.

As time went on and things got worse my DD and I would clean her house when she wasn’t looking. Removed things that could be dangerous. Eventually disconnected the cooker and just left microwave meals.

Looking back I spent far too long trying to get her to agree to things. It was easier as her disease progressed and she was more childlike and easy to distract.

She refused to move in with me, but would always come for Christmas. When she came at Christmas we never took the tree down after and she just stayed. Spent the rest of her life eating quality street.

What I’m saying is she probably will never except she needs help. Find a way to give it that leaves her dignity intact.

Agree with other posters- LOVE the Christmas tree story!
Are there minor things you could do? Like a keysafe? And identity stuff in her bag?
Tracker type key ring? But as others said, losing independence is really hard.

@Dustymaiden She refused to move in with me, but would always come for Christmas. When she came at Christmas we never took the tree down after and she just stayed. Spent the rest of her life eating quality street. That is just brilliant!!

As someone who has been there and done that, OP, you have my sympathies. This is a hard road to travel. As others have suggested, thinking outside the box helps. Focusing on the important battles/challenges will help you, letting go of other things that are less important.

Are you sure on the Power of Attorney? My parents were still allowed a chequebook when I registered my PoA at the bank. I was told to call the bank when they lost the capacity to use it and then I would be given sole control of their finances, but for a while we both had some control, if I remember rightly.

Yy to getting the cooker disconnected at the right time. I did that too, advising Dad that "it was not safe" (rather than being more specific and saying that he was not safe with it") and that we would have to use the microwave for a while.

Yy to cleaning when she isn't looking, if you are able to visit regularly. It will be so much harder if you can't. Perhaps you could arrive for a day around her birthday/Christmastime, with a surprise cleaner for a morning who could be her Christmas present, to give the place a good going over? Then maybe repeat monthly - especially if you do find you can both have access to her accounts, and you could fund an essential clean - toilets, bathroom and kitchen - for her wellbeing?

For me, getting my relatives to the dentist was important, for example. It is one of the measures of child neglect, to not go to the dentist, so I decided we would. That was helpful because it helped my relatives stay used to the car, and they recognised that going to the dentist is important. It also gave me a measure of how they were doing. The day Mum went, but refused to open her mouth, clearly flagged up that we had moved to a new level. . .

Best of luck and keep posting. You will get a wealth of advice on MN as you go through this journey with your Aunt. It can be heartbreaking, but it is wonderful for her that she has you there - even if she doesn't recognise it at the moment.

You can use the LPA with her permission, and she still has access to her account.

My brother and I pay all my mum's bills, cancel the scammy subscriptions she signs up to from the TV thinking they're free (I'm looking at you, London Mint) and my brother supplies her with cash. But she still has her bank card and can still spend her own money.

I've just set up my own LPA and it says very clearly that my daughter's can use it at any time with my permission. Which is different from activating it and removing all control from me.

I’m going through exactly the same thing with my mum and it’s awful. You are lucky to have LPA, my mum adamantly refuses to even consider it, as some idiot told her it removes your civil rights. I do all her admin, but I have to do it with her so she can give her permission. She acknowledges that I do a lot but is on the phone to me constantly, I am the forth emergency service and often have to drop everything to go look for some lost keys etc that aren’t actually lost. I can imagine it’s awful for her but she refuses to accept it’s anything other than normal age related memory loss (she’s 63!) and won’t go to the dr. I know this is probably going to take over the rest of my life and I am supposed to just roll over and put up with it all like a saint, but I want my old life back.

Thanks everyone for your comments, it is good to know I am not alone in this!

I'm not sure about the PoA Notverygrownup, it's just a comment I heard from a friend, so you are probably right and if I can use it without my aunt giving up her chequebook that would be good news. I haven't yet crossed the bridge of using it, so will have to research what to do.

MereDintofPandiculation, I see what you mean about seeing it from her point of view. It must be awful for her, and terrifying to think you are losing your mind. But it's awful for us too to watch her deteriorating and refusing all help - it feels like she is a small child lving on her own who badly needs parenting.

if I can use it without my aunt giving up her chequebook that would be good news. Check the PoA document - there's a section in it where the donor can choose between it taking effect while they still have capacity, or it not taking effect until they've lost capacity. That will govern whether they can still have cheque books etc. Although my solicitor warned me that we (donor and attorney) shouldn't both have dealings with the same bank, "they can't cope with it". She might be right - one Building Society, despite me clearly having PoA and it being usable while my father still had capacity, wanted either my father to sign all paperwork or me to declare he'd lost capacity .

@saraclara It's not automatic that you can use the LPA when the person still has capacity - when it was set up, they had to choose the right option.

Yy to cleaning when she isn't looking I tried doing that when he was out at Chapel, but he got very huffy so I had to give up. He wouldn't tolerate my doing any cleaning when he was there "you shouldn't be doing this, I'm perfectly capable of doing it".

Despite that determination to be independent, when, after a series of falls, the OT asked him whether it might be time to move into a care home, he surprised us all by saying "I think it's well overdue".

than normal age related memory loss (she’s 63!) Most of my friends in their 60s complain of memory loss - we haven't all got dementia!

You need to check if you have POA over health AND Finances. They are two separate issues and they only kick in if it's deemed your aunty has lost capacity however remember capacity can always be regained for example if she has a UTI and delirium and wants to go home but is unsafe to do so and she is deemed to lack capacity to make that choice then you can step in and put her in a care home to recover, but once she has recovered she can regain her capacity back

It's a minefield so check where you stand

Also remember a person can make "unwise decisions" and still have capacity

She refused to move in with me, but would always come for Christmas. When she came at Christmas we never took the tree down after and she just stayed. Spent the rest of her life eating quality street.

That's just so lovely of you DustyMaiden

They are two separate issues and they only kick in if it's deemed your aunty has lost capacity No, that's not quite true. PoA Health and Welfare can only take effect when the person has lost capacity, but PoA Finance can be set up either to take effect only when the person has lost capacity or when the person still has capacity.

She refused to move in with me, but would always come for Christmas. When she came at Christmas we never took the tree down after and she just stayed. Spent the rest of her life eating quality street.

That is pure genius.
OP does your Aunts GP do home visits? Can that be arranged for when you will be at the house, so you can let him in.

“than normal age related memory loss (she’s 63!) Most of my friends in their 60s complain of memory loss - we haven't all got dementia!”

Repeating sentences without the same short conversation.
Forgetting dates, names and upcoming events.
Loosing keys etc every day
Accusations of stealing (me!)
Not doing any admin, paperwork or financial stuff
Baffled by any technology
Making up stuff

If your friends in their 60’s are putting their family through this they are probably fine.

@SinisterBumFacedCat

“than normal age related memory loss (she’s 63!) Most of my friends in their 60s complain of memory loss - we haven't all got dementia!”

Repeating sentences without the same short conversation.
Forgetting dates, names and upcoming events.
Loosing keys etc every day
Accusations of stealing (me!)
Not doing any admin, paperwork or financial stuff
Baffled by any technology
Making up stuff

If your friends in their 60’s are putting their family through this they are probably fine.

Ah, well that's a lot more than in the post I was responding to!

I'm afraid you have to let her go her own mad way until she's ready for help, if you can't get the GP involved. I would call the GP and try to talk out a solution though and then I might try social services if you really think she's unsafe. It might be worth letting her know that there are medications which seem to stabilise dementia ('help with memory issues')and so an appointment with the GP could be useful. We used the phrase 'mild cognitive issues' or 'memory impairment' for a long time instead of Alzheimers.