Hi booflebear.
I'm in a similar position so know exactly what you're going through. The exception is I don't live with my parents but moved back to my childhood village where they live so they know I am close by.
Quick potted history from my side - Dad has Parkinson's - rigidity version with loss of balance and shuflling walking - but mentally still mostly intact although sad at his declining abilities. Mum has vascular dementia plus various other ailments that probably contributed to the vascular dementia. They have carer's 4 times a day plus a night sitter - mainly to stop Mum wandering off at night or falling down stairs.
Apologies if you've got all the following in place now, but here's what we've achieved so far. Hopefully it will yield something new for you
Night time: A good night's sleep works wonders for all. If your Dad has occasional trouble sleeping, there's Zopiclone - a mild sleeping pill commonly prescribed in hospitals for nervous sleepers/insomniacs. It can lead to a risk falls during nightttime visits to loo (from being groggy and bleary-eyed) but if you have someone stopping over at night that's less of any issue. I was given it myself once - it feels like a double brandy making it easy to nod off.
Things to support you and your parents:
- Do you have a community Nurse Case Manager assigned to you? Ours (here in Kent) is like a district nurse who oversees Mum and Dad's, helps co-ordinate health support, and documents their health issues in one place. She visits every 2/3 weeks to take blood pressures, oxygenation levels, etc and will treat any minor wounds like fungal infections, incontinence rashes, cuts, etc. Also she gets a sense of how they're progressing day-to-day. I text or email her with updates (hospital appts), etc as sometimes the systems in various parts of the NHS don't talk to each other. She has great insight what help is available locally and is a good support for me by chasing local services as she has more clout from working within the system.
To get this nurse, I spoke to the GP and they arranged for an 'Elderly Domicilary Consultant' to assess Mum at home - it was to get a snapshot of her general health using questions, a quick Q&A to see how their cognitive state is, plus input for family. (As we know elderly parents usually say "I'm fine" even if they're far from it. From this assessment, the Nurse Case Manager was assigned to us.
- Memory Clinic Assessments: This is from a GP's referral. The initial home visit was a very delicately handled Q&A. I primed the assessor that Mum was sensitive about 'dementia' so she handled it in a very casual way, like a friendly chit-chat, but still got the information she needed to assess Mum. Mum wasn't happy with having an MRI scan (she still had capacity at that point) but from her general health and from my written overview of life at home they were able to diagnose as vascular dementia. Once you get that diagnosis more services are available or sign-posted. The Memory Clinic is short-term assessment team but when Mum's condition changes, I contact them and the psychiatrists advise on revised medication for Mum's anxiety which they then request the GP to prescribe. It took a while to find a suitable anti-depressant at right level to help Mum's anxiety but now she's on Sertraline 50mg (half pill - 25mg a day) she's relaxed, chatty, and no longer has the afternooon 'sun-downing' tearful hours.
Continuing Healthcare Assessment NHS- Effectively, if eligible, the NHS pays for/contributes to care support for elderly people at the end of their lives. Most authorities try to restrict it to literally 'end-of-life' situations, but with a Nurse Case Manager you can put forward the best case and get some financial help. It's separate from the local Social Services Care Assessments and it is not means-tested.
Agincare: Locally (here in Kent) they will provide 4 hours per week FREE respite sitting, or 2 x 2hr blocks. Speak to your local Dementia Support Network Team or ask the Nurse Case Manager. That would give you a break or give you a chance to take Dad out for a coffee and a change of scene.
.
Age UK dementia day centres. Mum has just started going every Monday (10am to 3pm) to their mixed ability day. There are trained carers who will do nasty stuff like nappies, etc. The activities are things like story-telling, arts and crafts, listening to music and chatting about it, knitting, cooking, etc. I was cautious, but it's great. It's light and airy and cosy with friendly staff and is secure - for those dementia sufferers who wander. They do a home assessment first - we had a chat one-to-one with the assessor to avoid upsetting Mum wth unecessary direct questions about continence, etc. Those can be handled offline. Cost locally is £50 a week.
Attendance Allowance - as mentioned by another here, this is a free weekly payment (not means-tested) from the Dept of Work & Pensions. Your local Age UK office can send out someone to help you fill it in - I would recommend this as they're more familiar on how to complete the form appropriately. The upper payment is £82.80 a week, the lower is approx. £53. Both my parents receive the upper level. Once it has been approved it's paid into their bank accounts and backdated to the date of the application form.
Lasting Power of Attorney: Do you have this set up for Mum and Dad? The forms are online at Dept of Work & Pensions so if you're fairly ok with official forms, you don't need a solicitor to charge huge amounts to complete them with you. We didn't - it took us a couple of hours to do both sets for Mum and Dad (Financial/Property, and Health). Even if your Mum can't sign her name, someone else can with a witness, etc.
Dehydration - lack of fluids can intensify Mum's dementia. She immediately starts talking a lot more about her late Mum/Dad or imagining things. A few tumblers of blackcurrant cordial later she's back in reality.
Emotions - from experience Mum has regressed to a simpler emotional response mechanism. She's either too hot, too cold, too tired, too hungry without many gradual steps in between. It's almost the sophisticated part of her brain has gone, the control mechanism, leaving her like the earlier primitive part of the brain still intact. So, as with a grimacing baby you have to work out what's wrong through a process of elimination.
Activities - I know we're not allowed to promote products on here, so the best I can say it there are products from online retailers who have special jigsaws and arts/crafts, painting games, to help keep active minds for those with reduced concentration.
I've found the key to my Mum's happiness is social stimulation, a clean, uncluttered household and good meals. If she's refusing to eat (and to be honest who actually LOVES microwave meals..?, I tell the carers to do the meds and nappies, while I cook something to whet her appetite - meals with fried onions, garlic, bacon. A full tum is a happy Mum
Sorry this is long list but it's all stuff I've done over the last 5 years and hopefully may help you cut corners to get the help you need.
All the best,
Moog x