Very suddenly found myself needing this forum.

[SilverDragonfly1]

My FIL has dementia. My MIL has been covering it up for about 2 years. They don't live close by and MIL and DH both have an inherited condition that causes severe visual impairment, so neither of them drive and nor do I as we've never been able to afford it. So we haven't seen them for about 18 months, though MIL made a few plans to visit (with FIL driving) but cancelled each time because he was unwell. It's one of those things that's obvious in retrospect, but as it was gradual it just became 'normal' that they didn't visit. They did used to live very close to us, but moved while they were still in good health. MIL called every week and we called her, she seemed fine.

Four weeks ago, he went out in the car and vanished. We found out when MIL called to see if he was with us. He was found after about 12 hours, having had a minor but head on collision with another car in a town 120 miles away. He got some fractured ribs, thankfully no one else hurt and insurance have already paid out. After a night in hospital he came home.

Two weeks ago my brother in law phoned to say he was with Mum as she was suicidal after being kept awake for days on end by FIL getting in and out of bed and waking her. He didn't know why his chest hurt and had no memory of the accident. It seems to have accelerated his condition, which was already much worse than we had been told. He was taken into hospital that day and moved to a temp care home from there.

Because I have a degree and read books, I've always been the family's go-to person (they have actually lived their lives rather than reading about it- there's also a strong family history of dyslexia). Now I've gone from 'things are jogging along fine' to constant phone calls from MIL and BIL asking me about things, keeping me up to date and needing emotional reassurance. FIL is not eating in the home and was down to 2 weetabix a day long before he went there. MIL is distraught that he might die from not eating (which I see from other threads here is a common problem- not eating, not dying!). I've had to send emails to her doctor, find out about different meds, find out about dementia and care home policies, the works. No chance husband can do any of that as he is autistic as well and simply can't stay calm and rational in this situation.

I'm going up there on the train on Friday to see MIL and hopefully FIL as it is very difficult to do everything from miles away and with a MIL who's not able to read things any more.

I think this is more of a vent-type post (except I'm not angry) rather than having questions. I have Clinical Depression myself, and it has already been a very hard 12 months. I was just relaxing a bit and boom! I love my in laws, have always called them Mum and Dad but I can't get upset right now because I need to be the strong one.

I have been trawling the Elderly Parents and Dementia threads lately (might come in useful one day) and came across this www.mumsnet.com/Talk/dementia/2581273-Parents-with-dementia-where-do-I-start which I will be using as a template for each member of the family seeing as I am the only girl.

I have already bought an envelope for everyone and put a couple sheets of paper in. Next is to create and print a template to put in each file. If ever I get a phone call about someone, I only have to grab the file and head off, organised.

Good luck. It seems lots of people on here have great stores of strength to share with you.

Sorry you've been catapulted into this situation, OP. Your inlaws really need some intervention.

I've no doubt that your FIL's dementia has accelerated since the accident - no wonder your MIL is feeling so stressed. I'd suggest that you make an appointment to take them both to see their GP while you are there this week. There is help available for them both, but he'll need to be assessed before anything can happen.

He certainly shouldn't be driving any more - you'll need to bite the bullet and make the car keys "disappear" permanently. To be brutally honest, he could have killed someone else in that accident, or himself. This can't be negotiable - get the keys and / or the car itself and make them disappear.

Before you go on Friday, call Dementia UK on 0800 888 6678 - they can give you lots of support and information.

Best wishes to you - It won't be easy but there is help out there for you.

The car was written off and he won't be going back home now- he is in a care home for the duration. I can't believe he was still driving. I would have been onto the DVLA in a heartbeat if I'd known. He could have killed people!

Thank you for the ideas both of you, and for the number. I will try and get time to call them this week and will look at the linked thread.

Well, get him a sight test at some point to check he doesn't need a cataracts operation. That might have been the reason for the crash, but of course being over a hundred miles away in the car doesn't augur well.

Secondly, run tests to check for low sodium levels or a urinary tract infection, which can cause dementia-type symptoms.

Third, see if you can swing LPA in Health and Welfare for him, either giving it to you or trusted family member, if that's workable (it doesn't frankly sound it if he's really gone, then again getting in a car and going places means he does actually have some wherewithal).

Fourth, daily folic acid pills might help for the depression. Stay off filter coffee.

He has had massive trouble with low sodium levels before, I think the first episode triggered all this- that was about 5 years ago. Good idea, I will suggest testing for that. As he isn't eating (1 strawberry and a bit of a small pot of ice cream yesterday) everything must be out of whack now and I think if they can get him properly hydrated and fed he would improve a bit, though not to a level that would get him back home. But they aren't able to force him to eat (thankfully!) and can only encourage him, which they do.

Forticreme is good because it's like yoghurt but is packed with vitamins and goodness, failing that fortijuice.

Try having a small fridge in his room, as it makes all the difference having this stuff to hand, and at a cool temperature.

Lipton's Peach Tea was always good for my mother, as it was not too acidic, but it did come out of the fridge in her room (and left a bit, for the chill to go).

If you can get him using a straw, that is a turning point. You can get 300m down in one sitting then. Of course, a small water bottle you take with you on the Tube just in case is 500ml, for some perspective.

Thank you.

The home called my MIL yesterday asking permission/ informing her about a DNR. BIL saw him yesterday and apparently he is almost unrecognisable. So it sounds like the home think he won't last long.

So sorry your family is going through this 💐

Okay, I have good news and bad news... Dad has started eating and mobilising again after being given antibiotics and steroids for his chest infection! He went and sat in the tv room with some other residents yesterday and was able to talk to Mum briefly on the phone- he knew where she was but was lost when she mentioned having workmen in at their flat- he just said 'where's that?'

The home is lovely but it is a temp placement and social services are... not lovely. They've already told mum they won't take her disabilities (severe visual impairment and effects of a stroke) into account when deciding where to place him, so she's worried she won't be able to see him regularly. In addition, the home where he is most likely to be sent while having a very good inspection report, is actually not very good and her friend's husband is already there. Friend regularly finds her husband sitting in his own mess when she visits and is not happy at all.

So, any advice about mum's rights to be able to see him and so on, very helpful!

Social services won't deliberately be being awkward but ultimately they have to place him in an appropriate placement that can meet his needs that has a vacancy at that time. When I'm placing people the ability of their family to visit is extremely high on the list of important things to consider but a safe and appropriate placement that accepts somewhere near council rates will always have to take priority.

What level of care has he been assessed as needing? Dementia residential care?

I'm assuming only because you haven't mentioned it as an option that FIL is being funded by social services and MIL can't afford to pay a third party top up from her money to secure a place for him in a care home she would prefer?

Yes, it's dementia residential care. I am not 100% on finances unfortunately. It is social services funding but I think his occupational pension is topping up the place he's in currently. If only he could stay there!

It's a respite and rehab place, so he can't though. Interestingly, it is rated as RI but the care is amazing. So obviously the reports are of limited use in deciding.

His occupational pension won't be topping it up it will be paying part of the going rate. He will have been financially assessed as being able to pay a certain percentage of the fees and the council will pay the rest. Essentially the council are the ones topping up what he has so he can afford to pay for a care home placement.

What is the reason he can't stay where he is?

It is an NHS unit for respite and rehab care and doesn't have long term patients.

Luckily, they do live in an area with a high proportion of older people so there are several relevant homes just in their town. I think there's a high chance he will be placed locally as they do have some beds.

Thank you for clarifying the situation re funding. They used to have savings but they have trickled away. When my nan was in a home her children clubbed together to pay a top-up, but there are 7 of them- neither we nor BIL have incomes that would stretch to much.

If you are able to ask the GP or home to get his B12 checked. It is often low in the elderly and the stress from the accident can make what little he has get used up more quickly.

It may help in the reduction of dementia symptoms.

Just found he has been declining again throughout the day and talk now is of palliative care. Back on the emotional rollercoaster then. I will update when there is some concrete news.

I hope I've not upset Newspaper in any way.

No, Newspapers arrives regularly on care home threads to talk about their experience. I've tried to reassure them in the past that there isn't a social services conspiracy to kill off the elderly but it just adds fuel to the fire so I've stopped engaging. First time I've seen them actually deleted though

If he is palliative then there is a high chance he may be eligible for something known as Fast track continuing healthcare funding. This would mean that the NHS would pay the whole cost for his care. It's definitely worth keeping mentioning that to any professionals who assess him.

💐

The thing is, hatgirl, I am open about where I am on this, and you are not.

It's not your place to reassure me about any 'social services conspiracy' - how would you know?
Do you work for Surrey's Safeguarding teams?
I am the one who had a mother in seven care homes and had to attend daily - taking it in turns with my sister - to give drink. It took a while for the penny to drop.
Yes, that is the first time a post of mine about it deleted - a bit chilling. What next, deleting threads on contaminated blood and Gosport too? Because allegations about that were obviously a conspiracy, right?
I do pop up to talk about my experiences with care homes because a series of complaints to the CQC and Ombudsman get you nowhere - and when you learn the CQC sits on bad care home reviews for eight months before revealing them, or that the NMC has waited three years after I reported a dodgy care home manager before even taking a witness statement, well, you can't blame me for taking this view.
Took 30 years to get Gosport and Tainted Blood in the spotlight, and still no one charged.

Oh, and yes, if you get NHS Fasttrack Cont Healthcare, well, yep, better keep an eye on them, that's all.
My mother went on that, and it's the 'freebie with strings'.

Actually, I'm a bit bemused why that post was deleted. I'll have to ask, because there's far more incriminating posts of mine on other threads, and I assumed it was one of them that got the chop. On this thread, all I recall saying was that B12 is good - or is there a problem with saying that?

Your experience sounds dreadful Newspaper. I am perhaps more inclined to believe it than some, as I have had so many dealings over the years with the PIP and ESA assessment process and am well aware that my stories would sound paranoid and unlikely to someone who hasn't- even to those who have, but have been lucky enough not to be sacrificed to the target hitting yet...

FIL in hospital since sunday with breathing difficulties so no idea whether he will even end up going to a permanent care home. Last week I'd have assumed this was the end, but he keeps popping up again so just waiting really.

Thanks SilverDragonfly1, and I didn't mean to simply use your thread to air my own problems.
I obviously don't know what's causing your FIL's breathing difficulties, maybe look out for fluid in the lungs and see if you can get the hospital staff to have the suction machine at hand. If so, what happens, is you get them to show you how it's done so you don't have to keep asking them to do it. Press the nozzle on the back of the tongue, press down and you get a lot of gunk up, but don't go down the throat or anywhere near that flappy thing at the back of the throat of course.

We had a suction machine in the care home, the manager stopped us using it, social worker called in, upheld their decision, all our concerns ignored, Mum dead within weeks, manager got to charge the amount she wanted for the room.

That said, I don't actually know if your relative's breathing problems is due to fluid in the lungs, I am just trying to be helpful.
You could kindly ask if someone could check on your relative frequently in the night and sorry to broach this but arrange the 'Can you call me if things get worse?' conversation without making it sound like you're resigned to it.
Have cash in the house all this week so if you need a taxi or something, or if you lose your bank card it is not disaster stations.
See if you can your FIL gets enough to drink, using a straw.

Other than that, at the risk of being hypocritical, don't get too stressed, stay off the filter coffee, try Folic Acid imo for being down but try to avoid the Fight - Flee - Freeze mode these situations can put you in.
Stress peps you up and makes you more efficient - but it's like coffee - in that if you stay on it it just wears you down and makes youactually less efficient.

I'm sending this as a PM as negative comments about social workers can get deleted, I've been informed.

I don't want to derail but I have had a very similar experience to Newspaper. It does happen and it feels like shit when it does (understatement).