Where to go from here?

[Justadaughter]

So, my DF has dementia. He's 83 now and was diagnosed about 10 years ago.

He was extremely successful so still has his determined nature, though it's not manifesting itself in the way it was (I must succeed) but now that he "must" sleep, or he "must" eat sweets or he "must" check the back door/cars/when anyone at the house is leaving etc. On the other hand though, he still believes he does all the tax returns, gets people in to do maintenance, drives and guide the rest of the family ("I must do: who else would as i am the patriarch?"). And which ever way he lands, he's right and he must get his own way or he gets very grumpy.

So, today, having explained to me about some exam technique (I established at this point he thought I was about 14 when I am actually early 50's) I noticed as he walked away that he had a brown mark on his trousers. He has also been refusing showers for ages as well, ignoring my mums requests and just getting dressed. When I softly asked DM about his trousers she said it had actually been happening for a while but he's not incontinent, it's more just having an itchy bum. That he's not like other people with dementia and that he should be able to just be around people like those he's known all his life so she won't change anything as he can still do things himself and he only thinks I am younger than I am because I look young for my age.

This all makes it very hard to know how to deal or advise DM as she also oscillates. She won't hear anything about him actually struggling (there is always an excuse) and he should be able to hold his own in social situations, but on the other hand she recognises he does have zero recollection of things.

So what do I do? The idea of having people at the house all the time (which they could easily do) is just dismissed as unnecessary and embarrassing. But they do need help. it's all a bit maddening and I am not sure how I can actually help without causing offence as I don't see this as sustainable, but maybe it is and could go on for another 10 years? So, where do I go from here....

Bump

It does sound as though your DM is in complete denial and actually sounds quite scared.

Is there anyone that can be with your DF for a short while, like a relative or friend, so that you can take your DM out and try and talk to her?

If he's refusing showers I would particularly want to know how he's sleeping at night. I suspect that he probably isn't abc your poor DM is beyond exhausted

@Justadaughter I'd also recommend some practical things:

Apply for Attendance Allowance, if you haven't already. If you call for the formss* instead of filling them in online, they will backdate payments to the date you called for the forms.

Call the Admiral Nursess* and ask how you can best deal with your DM's denial and your DF's lack of hygiene.

Fill in the This is me leaflet and keep a copy on your phone/laptop. It is very useful if he is ever admitted to Hospital, has carers or goes into a care home. When DMIL was admitted to Hospital with Deliriumm* they were very grateful that we were able to email it across straightaway.

I'd also fill in the Herbert Protocol. You'll need to google the County they live and Herbert Protocol. It's a document you fill in that has all the information that the Police will need if, God forbid, he ever goes missing.

I'd also get in touch with the local Carer's Support Group /Hub and see what support would be available to them.

Will your DM have a bracelet in case she has a fall and has she given you POA for Health and Finance?

She's in denial. My mum was the same.

It's going to be a rough road to get her to see the reality, but i wish you the best.

I don’t know if it’s straight denial as he can’t drive now (he gets very upset every time he remembers which means she has to face that almost every day) and the place they live needs a lot of managing which she takes on herself as dad can’t do anything. Plus she has organised all the POA but things do take forever as she doesn’t get space as she’s always running things past him no matter how many times I say it’s not adding value.

However, she certainly seems to think that because he can on occasion hold his own and that he doesn’t smell it’s not that bad. She does manage to cajole into the shower every few days but if he was left to his own devices he wouldn’t bother which again she knows is different as he used to be fastidious. I am only saying all this because it makes it very hard to just say “come on DM, let’s face facts that it’s time for some big decisions’ so how on earth do I get anything through to her?

@CadyEastman thank you did the link to the Admiral Nurses. I will make contact

Can you take on the POA admin? It sounds as though your DM is no longer coping.

Is the car still at their home? I think I would sell or move it somewhere else and get your DM to say that it's in the garage and it will be back next week, if she will. That way he's not having a constant visual reminder and the daily associated upset.

I am only saying all this because it makes it very hard to just say “come on DM, let’s face facts that it’s time for some big decisions’ so how on earth do I get anything through to her?

Sadly you often can't. Is there someone she would listen to more like a brother or your DH/DP?

This is why many people with Dementia often go into Hospital and then a care home after a crisis.

I would try your best though to point out that if she want him at home, the only way that's going to happen is if she starts to accept that they both need help and has a cleaner and a gardener and some time away from your DF each week.

She has a cleaner and a gardener. She has accepted she needs some help
so has someone at the house one day a week.

We have told her to sell the car but DF would notice. Even when they are at mine (I don’t live near them so they have a driver bring them) it’s all about where the fucking car is and why his driving license is out of date and why can’t he get a new one?

We have told her to sell the car but DF would notice. Even when they are at mine (I don’t live near them so they have a driver bring them) it’s all about where the fucking car is and why his driving license is out of date and why can’t he get a new one?

I honestly don't think your DM is capable. They are no longer functioning how you remember. Your DF seems to have advanced Dementia and your poor DM is firefighting.

If the car needs selling I think you need to step up and do it.

Are you telling your DF little white lies to keep him content? So when he asks why his licence is out of date are you telling him that you've applied for a new one and it should be with him in a few weeks?

My DFIL was dead against telling any lies to DMIL but it caused huge problems and she was constantly upset.

Sometimes we have to bend the truth a little to keep our loved ones with Dementia content

@CadyEastman she doesn’t cos she is scared he would just get into one of the cars and drive off

If he thought he could still drive about

Hi OP, I'm sorry, it sucks. I think (from experience...) that the adjustment and acceptance can be particularly hard for people who've always been very capable, professional, independent etc, and have had very little need to rely on others or 'the system' for support. It's a harsh thing to say, but I think the realisation that social status and prosperity provide no protection against dementia can hit hard.

There's very little you can do. Would your DF perhaps be more likely to consider seeing a private consultant than engaging in the social services / local healthcare system? This was the case in my family. The one thing that prosperity can provide is greater choice over who you see, and how quickly, and the kind of care you can access. In our case, a private appointment did help to encourage acceptance of a dementia diagnosis and engagement with some bought-in care. But ultimately, the end game is the same: your DM is likely to struggle on with Inceasing difficulty, until the situation is no longer sustainable and permanent care is required (which is what has happened in our case).

What exactly are you most worried about and what do you most want to fix/avoid? Watching your parents wrestling with dementia like this can be overwhelming, it's heartbreaking, but you may have to accept your role is crisis management rather than prevention

That's no problem

@tobyj He's in the private system, always has been. Basically there was one place where DM wanted to put him because she thought it would be a place where he could be in luxury (which it was) talking to people ‘like himself’ about successes past. That sounds really harsh but I think that is one of the things that stops her. She doesn’t think he will go through the indignities because of his previous status, and I suppose coming to what @olderbutwiser is asking, how can I do that - how can I get her to face the truth as opposed to feel they can go down with the ship in top hat and tails…

how can I get her to face the truth as opposed to feel they can go down with the ship in top hat and tails…

Sometimes you just have to get them away from the person with Dementia and spell it out to them. She's exhausted, your DF needs more care than he's currently getting and unless things change it's going to end in an emergency.

It’s so hard when she just doesn’t see it like that at all.

I know. It's so hard isn't it? Our DFIL refused all help and just keep saying "I want to keep her at home".

It was the first lockdown and things had really deteriorated and we just didn't see it.

Plus it's difficult being my PIL and not my DPs.

If I had that time again I hope I would have done more to try and make DFIL see that the best way to keep her at home woukd have been to accept help.

I think in your shoes I'd try to accept that your DM is no longer capable of taking anything else on, she's frightened and she's not coping.

Would your DF try respite care say if his Doctor suggested it?

Ultimately, your DM's hand will be forced. We went through a little bit of this - tempted by the really 'naice' homes that looked more like a luxury hotel, with manicured grounds and swanky activities. And I'm sure those places are very nice for people who are perhaps single and lonely, or a bit physically frail. But the truth is, once someone has reached a moderate stage of dementia, all the frills of somewhere like that are pretty redundant, and that kind of home is unlikely to accept the person anyway. In our case, by the time the situation was reached that the person could no longer manage at home, a full-service unglamorous dementia home was the only option

In your case, is there any chance of increasing carers at home but positioning them as help for your DM, or arranging some respite in as luxurious a home as possible and using that as a time to have a more detailed conversation with your mum? Or perhaps seeking to communicate your worries to your father's doctor (assuming he's under someone's care) to see if the authority of a professional might help to encourage him to get more help?

So many very helpful posts on your thread OP. Our experience is very similar to PPs. My relative is now in a "no frills" nursing home but the carers they have there are amazing.

I just wanted to mention about your DFs reluctance to shower and wondered if you'd realised that a symptom of dementia can be difficulty with seeing items if the contrast in colour isn't obvious. So a bathroom that is predominately white, can be a big issue for a person with dementia. I know that you can buy bright blue or red toilet seats to help with this, but I'm not sure if there's a solution for the shower. Also, my relative struggled for a while with the shower as they didn't like the sensation of the water on their head. This doesn't seem to be an issue now but I'm not sure how they have overcome it. I do know that they use a shower seat - might that help your dad?

How are you tonight @Justadaughter? Have you managed to speak the Admiral Nurses?

The memory clinic told our LO they couldn’t drive which made it so much easier for us .we commiserate every time LO complains about it ( have more or less forgotten about driving now a year later ) and say well unfortunately it would be illegal cos you’re not insured now as the dr said you can’t drive but you can always do your driving test again if you like. They’d say maybe I will then forget it. I suppose you’ve tried all that but just suggesting in case.

Could the ‘driver’ actually be a carer? One that’s happy to drive them round and then start helping them out at home too?

@CadyEastman thank you for checking in. Moving forward slowly…

@Chouquettes Unfortunately he wants to take on the doctors and DVLA every single time he realises as he thinks it’s insane he shouldn’t be allowed to drive.