Feeling flat - a diagnosis finally, and nothing changes

[crossedgarters]

DM first started showing signs of cognitive impairment about five years ago (maybe a bit earlier, but that's when we started properly noticing it). For years, she's had repeated appointments, both medical and memory related, including scans, but no diagnosis. Meanwhile, her memory loss, confusion and personality change have continued to progress, and it's been obvious for years that she has dementia.

This week, finally, after all this time, she's been given a diagnosis of Alzheimers (with probable vascular dementia also), but nothing changes. The GP signposted various support organisations (I know this because dad wrote them down at the appointment), but it hasn't changed anything at all. Mum knows she's in a bad way but just says she's fed up with life and wants to die - she doesn't really understand about her diagnosis, and is violently opposed to any form of support. Dad doesn't really get that dementia is a progressive illness which will inevitably get worse - he knows mum's in a bad way but seems reluctant to do any planning for the future. Life at home for them is already quite tricky, and it won't be long before dad can't really leave mum alone at all - but he's not engaging with any of the suggested support networks. They currently have zero brought-in support.

I don't know where to go from here. Dad basically wants to 'look after' mum, but I don't think he really has any idea of how things will inevitably progress, sooner or later, and how hard it will become. I've offered to help him, organise things for them, call up support agencies etc to start getting a few hours of help/companionship/cleaning a week, but I'm getting nowhere. Dad is 'with it' enough to resist any attempts I might make to 'insist' on helping them put some form of care in place - but he's also less sharp than he was, so not quite up to appreciating the situation or remembering exactly what the doctor's said about how to start addressing it. I think I've persuaded him to apply for attendance allowance, but so far that's it.

I've read so many times on here that, ultimately, you have to let the situation fail - but I so want to avoid either of them experiencing a traumatic situation - and the outcome of any crisis will just be that they phone me anyway. I work full time and don't live that close, so it's impossible to do any regular popping in - I can only visit every few weeks, and it's very difficult to try to have a proper conversation with dad about mum's care, because she gets very agitated if he's out of the room for more than a few minutes. I just feel like I'm waiting for a crisis that I'll then have to deal with.

Anyone have any suggestions that I might not have thought of?

How old are they and do you have siblings?

It's difficult and I think you have to plant seeds and be patient. If we get some help with the cleaning dad, you'll have more time to look after mum.

Do you think he will manage the aa application on his own? I did my mum's - all 33 pages of it. It was quite challenging.

This sort of happened with my parents but dad kept asking for help and didn’t get any (not even carers) and he couldn’t cope any longer caring for her
if it ends up in a crisis then this might help
She slipped and ended up on the floor, didn’t hurt herself. I told dad not to lift her and she was taken to hospital. They went to discharge her and dad couldn’t refuse (he was so upset) so I did it and said she couldn’t come home, it wasn’t safe and dad was no longer willing to care for her so she was homeless. That got her placed in a care home finally

it’s also worth thinking about what happens if she gets pneumonia, a hip fracture etc things like that or needs CPR… what you want to happen

Thanks both. She's 79, he's 82. I have one sister - we're totally in sync, but she also works full time and lives several hours away, so also can't pop in. We have both forms of LPA for both of them, which is something.

Good question on the AA form - I don't know,to be honest. I found him the link and got him started with the first few questions, but we couldn't leave mum any longer than that. He's happy to accept my help with things, but not for me to do them for him, iyswim. I guess we'll see - I'll keep asking if he's done it, and offer to drive over one night to help him if he can't (mum goes to bed v early, so a late evenings after work might work).

Also good question re what they'd want if an accident or illness happened. As far as I can glean, the GP hasn't mentioned DNR etc - but they're both pretty unreliable narrators now, so I can't be sure. Dad would be pretty open to an advance statement of wishes - he's not at all squeamish about that sort of conversation - but I think mum would get very confused and upset by the conversation (and quite possibly suspicious and aggressive - a new trend, sadly), and dad would be much more hesitant about doing it for her than for himself. I can add it to the list of things to try to talk to them about.

They aren’t on the same timetable as you unfortunately and they don’t have the same priorities. While you want to plan and get ahead of the evolving situation, they want to keep things exactly as they are for as long as humanely possible. My MIL used to say ‘we’re no’ there yet’ and there was no way to persuade PIL that making changes in advance of ‘getting there’ was needed. For them - and my parents are now being similar - all their energy and decision making went into maintaining the status quo - even as it fell apart around them.

It took a crisis. MIL became delirious and collapsed (FIL had not been good at caring for her because he did not accept the reality of her illness - Parkinson’s and accelerating dementia). She was dehydrated and not taking meds, soiling herself and very very confused. She went to hospital and didn’t come home, going straight to a nursing home. FIL had to be coached to not accept her back home - she was doubly incontinent, immobile and unable to communicate. Even with four carer visits a day it would have been impossible. So yes, the well trodden path that many on here have experienced.

With the AA form, I printed two copies and did it as a work in progress over about 4 visits, pencilling the answers. When she was happy with it, I wrote an ink copy. There was a lot of medical information and supporting documentation to include. I did it by post and it was approved in about 4 weeks.

I reckon it took about 8 hours in total. Be mindful that if rejected on appeal, you can't reapply for 6 months.

Where they live, for a monthly donation of about £14, Help the Aged can help with things like this and also have screened gardeners, cleaners, carers/helpers. They have been marvellous and the rates are reasonable. There is also an org near them where you pay £25 a year and a good value volunteer cab service is provided, where the driver volunteer will wait for two hours at hospital appointments/supermarket trips, etc. Step is still driving but it helps with keeping mother calm and being dropped right at the door.

Have a google.to see what there is.

Is your mum taking any antidepressants? My Dad has had vascular dementia since his early 60s (about 10 years) and antidepressants are essential.

I think it is also typical for family to know their parent is suffering with dementia years before diagnosis.

Agree with the PP about making sure they have applied for AA. Do you have LPA?

I found with my parents that it was a lot easier for them to accept more everyday help that anyone might have, a cleaner, a dog walker with occasional gardening and handyman visits.

There are specific handyman services for people with care needs that are sometimes free or subsidised in different localities.

Have you asked your parents if there is any sort of support they would find useful? They may not want carers in the house, and might only accept them when forced into it. They might accept a gardener, a handyman, someone to accompany your mother on trips out, a Help the Aged type person helping with the attendance allowance form or using technology. If you can get them started on having regular support of any kind they will become more used to other people around.

Definitely apply for AA, the form has recently become much more straightforward. It can also passport other discounts (council tax for example) and services. Are they registered on Priority Services Register for utilities in case of emergency. You can ask Adult Social care to assess their home situation for any useful aids (grab handles, toilet seats, alarms if she gets out of bed at night etc) and to suggest other sources of help. PIL go to a dementia cafe once a week which also has a carers support group.