Dementia, sharpish decline and lack of support

[TheGenealogist]

Apologies in advance.. this is probably going to be long.

My parents are both in their 70s, Dad is 78 and mum is 74. Before Covid hit we had started to notice some concerns about my Dad - confusion over things, forgetfulness. He had a brain scan at the hospital and they said no concerns. Anyway, over the last 18 months things have got a lot worse. We visited over the weekend (we live 90 minutes away) as my brother and his kids were visiting - they live a lot further away and can only visit every 6 months or so, especially given covid restrictions. We all went out for a pub lunch, adults at one table, children (teenagers) at the other.

Dad must have asked Mum what she was choosing from the menu about 6 times, she gave the same answer each time and he just wasn't remembering. He asked her twice who the boy with the dark hair was - it's my youngest DS, he just didn't recognise him out of context in the pub, sitting with his cousins. And even when Mum said "that's Dave, your grandson, Ann and Jim's son", he was clearly still confused. DS has grown a lot and he comments on this very frequently, he seems stuck with DS as a 6 year old not as a teen. Dad is better in his own home with just mum or one of us visiting - take him out of that and stick him in an unfamiliar situation with lots of other people and he just can't cope.

He's also starting to struggle with things like putting his shoes and jumper on, shuffles along rather than walking.

The big elephant in the room is his alcohol use. During the day when he's not drinking he is docile and fairly compliant with mum if she corrects him or reminds him to do something. If he's had a drink he gets so argumentative and shouty with her (and anyone else). We didn't stay over as we drove home after lunch but brother did and said it was pretty awful in hte evenings. He is drinking a LOT. This is not necessarily anything new but he'll have a couple of glasses of wine at lunch, a wee bottle of beer mid-afternoon, more wine at dinner time, whisky in the evening. EVERY night.

I don't think either of them are being honest with the GP or consultant at the memory clinic who sees them every 3 months about how much he is drinking, and how it affects his mood/behaviour. On the other hand, they know that the GP will just tell him to stop and he won't. It's very hard on my mum, they currently have no support but I think it's getting to the stage we need to start exploring that even if just to give mum respite - she doesn't want to leave him on his own for more than 5 minutes as he may just wander off.

Before lockdown we'd found all these dementia support groups and activities and just as we were getting details, everything stopped. We're in Scotland and many things haven't resumed yet. Or the support groups are being done on Zoom and parents cannot/will not engage with technology.

Discussing with DH last night and I'm tempted to email their GP and lay out everything we have observed during our visits and expressing concerns. I know the GP cannot engage directly with me or my brother about his medical treatment or history but they can take our views and observations into account surely.

I am also thinking I will have to juggle things here and try to make the time to visit at least once a week, if just to give mum respite or help her tackle the gardening.

I'm well aware that things are only going to get worse from here on in and I think mum is too. They are both very reluctant to see the doctor, ever, or call for help. We had one situation about 6 months ago where Dad was being incredibly irrational, refusing to get up out of his chair, and kept repeating to mum that he was dying. Brother and I advised mum to call 999 and get him assessed in A&E. She flat refused. I have said to her on many occasions that I would like to be involved in one of their appointments at the memory clinic with the consultant, but that's banned because of Covid.

Anyway. Just needed to vent. It's really upsetting seeing your Dad not recognise his grandson. Luckily DS didn't hear, he'd have been absolutely gutted.

Your situation sounds a lot like what we went through with our Mother in 2015 but without the drinking, would it work to gradually reduce the amount of alcohol available at home or water it down.

Mother was adamant there was nothing wrong, we got a referral to the memory clinic and initially did quite well in the tests.

We had to stop her driving which caused a big hoo haw, she went out every day and bought so much shite from charity shops it was getting to hoarder level at her home.

Once we got a diagnosis of Alzheimer's we got assigned a social worker which was access to help in the home.

A big problem was her getting on the wrong bus and ending up all over the place, a tracker in her handbag helped.

She no longer leaves the home and is very frail and hardly speaks, we have carers going in multiple times a day.

It's a long and bumpy road OP and I wish you the best x

Has he been officially diagnosed with dementia? I know you said one brain scan had been fine supposedly but also that he's being seen regularly by the memory clinic. It might be better to contact the memory clinic directly rather than the GP.

Had the same thing with my dad and my DS. It is distressing but my DS got very good, bless him, at dealing with grandad calling him the wrong name or getting confused. He was able to understand that grandad still loved him but his brain didn't always work properly anymore.

I would think about how to work on your mum to get her to accept help. Visiting is good but spend the time with them, pay someone to do the gardening etc. You don't have to do that. Do they have savings / own their home?

Are your mum and dad being honest with you? If he is being seen regularly at a memory clinic he must have a diagnosis of dementia or they would have discharged him.

If so, dementia will progress, regardless of how much he drinks although this won't be helping.

One of the main jobs of the clinic is to support people to have help - difficult if your mum is busy telling them things are fine.

Has he got a social worker?

Some day centres are beginning to open up again so he may be eligible.

Also he may be entitled to funding for care in home. That can be used in different ways but could be used to get your mum respite.

I would get on to the social and see what you can do. We had to have a right moan at them before bit it did help.

We are probably also going to have to do the same again as Alzheimers patients have been forgotten about in Scotland due to Covid.

@GooseberryJam and @AnnaMagnani - no I don't think they are being honest. I think there's a lot going on. Mum first raised concerns about Dad probably around 3 years ago, he was seen by the GP who ordered blood tests and scans. Mum said there was nothing on the scan which indicated dementia so nothing was done. And to be fair, he was pretty OK at that point with just the odd periods of confusion, usually in the morning.

Over the next year or so, so probably about May 2019 onwards, mum did notice the confusion appeared to get worse and someone (GP?) sent out a mental health nurse around October/November 2019 who saw them both at home and was suffciently concerned to refer Dad to the memory clinic at the hospital. His first appointment was supposed to be in March 2020, Covid arrived, appointment cancelled. They spoke to someone at the hospital, presumably a doctor, who prescribed some tablets (again, no idea which) on the assumption that Dad had dementia and that the medication would slow things down.

Between March 2020 and May 2021 they saw nobody. GP, consultant, mental health nurse, dementia person, nobody. When dad had his "I am not getting out of this chair because I am dying" episode, mum called the mental health team who liaised with the GP and they changed his medication, and the timing when he takes it. They have had one in-person visit to the memory clinic and mum said the consultant was "very nice" but as I am not allowed to be part of these conversations I have no idea what's actually being said.

So in essence, I think he was definitely on the pathway to diagnosis in Feb 2020 and had that initial in person appointment gone ahead, the formal assessment would have been made. But that never happened, and they are working on the assumption of dementia given his symptoms.

But there is a lot of minimising and "not wanting to bother the doctor" from my mum, who completely has all her marbles btw, no concerns on that score. My granny (her mother) was just the same - don't see the doctor unless you are practically dying, don't speak about medical issues, don't question the doctor, certainly don't challenge what a doctor is telling you, never EVER ask for a second opinion or WHY something is or is not happening.

Alzheimer's Scotland has a lot going on in their area, and lots of their groups I think would be of huge support to mum especially. But they are not running at the moment and given the cautious approach of Ms Sturgeon, they won't be restarting for the foreseeable. Because people dealing with a spouse becoming increasingly irrational and confused obviously don't matter. I am going to call their local office and speak to someone - they will know better than me what support can be accessed locally, and the threshold for things like care and social work involvement.

(That will HORRIFY my mother, social workers are NOT for people like her, social workers are for the people neglecting their children or druggies )

I have heard of someone successfully getting their mum off the booze by gradually watering it down so that it no longer appealed.

Yes we've substituted his usual 40% whisky for 20% and I don;t think he's noticed. But that's just a drop in the ocean.

Have emailed the local Alzheimer's Society to ask what is happening locally.

Hi OP

What does your mum want to happen here? Is she looking for respite care or activities etc? Does she understand what the Dr / consultants are telling her - and will she tell you? Has she asked for your help - and what help has she asked for? Because at the moment it sounds like she is firmly in the driving seat, for better or worse.

We had a similar situation - minus the drinking. MIL was diagnosed eventually with Parkinson’s and the hardest part, for DH and SIL, was that FIL was not capable of understanding and then sharing what was being said at the memory clinic and other rdv. But as the spouse he was the one driving the whole thing - he was at the rdvs, he was speaking with the dr / consultants / Parkinson’s nurse / social worker / physio etc. and giving a totally false impression of what was happening at home. Like your mum he was very in awe of the Drs (Scottish also 🙄) and just kind of bobbed along.

What Dh and SIL had to do was find a way into the system. With FILs agreement they were given permission to speak to her GP. He also let them see the written reports from the memory clinic (they are in Edinburgh btw: the reports usually get sent out 7-10 days after the appointment). SIL basically insisted on going to as many rdv with them as possible, and she and DH set up their own calendar to keep track of the various clinics etc that she was going to, who the key medical / care staff were etc. But key to it was FIL letting them in.

Honestly? She wants to pretend that it's not happening and that everything is fine. She will ask for help for very practical things - so for example she was having a particular test at the hospital and was told she couldn't drive home afterwards. So she asked if I would take her to the appointment, leaving the teenagers to babysit grandad and make sure he didn't wander off or get confused about where she'd gone. She will ask for help to cut back trees in the garden or take a load of junk to the tip.

But emotional support? She won't ask. She does understand what is being told by the doctors, she's bright and switched on, but is a "don't want to bother anyone" sort of person too.

She's going to have to let us support her at some point.

Have a look at korsakoff syndrome. It causes dementia like symptoms, memory.

Would she respond to a different tack? Maybe that you and DBro are really stressed at being kept out of the loop, and for your own peace of mind you wish she’d tell you what’s going on because you are probably imaging the worst? Have you asked her directly if you can read any letters / reports etc. ?

Have you got POA? That was one way into the conversation with FIL and MIL (they got it done just before she really started to decline). Or talking about wills etc? We used my parents as an example - talking about why they’d been promoted to get it organised.

But I fear as with a lot of similar situations, there will be a crisis at some point and that will force a change.

It’s really hard to stand back and watch a car crash happen in slow motion,

So basically she wants your help to maintain the status quo. Maybe that’s good enough for now? Because things will change whether she likes it or not, and as you say she’ll need your support when they do.