Help with elderly relatives - Parkinson's + Dementia issues?

Help with elderly relatives - Parkinson's + Dementia issues?

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aeropilot

34,574 posts

227 months

Saturday 22nd July 2017
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RC1807 said:
FIL is leaving hospital on Tuesday and moving to a very good rest home in Romsey. He's perfectly fine with that having spent 6weeks on/off in Soton General. MIL remains confused about most of this, but she's going to live with him at the rest home (very good dementia care service) in what appears to be a rare twin room in Hampshire.
That sounds promising.....

Although......as she gets worse, it maybe that your FiL will need his own room.

This is what happened with my Mum's sister and husband, when they went into the same home, but as her dementia worsened, within 12 months they ended up in seperate rooms as my uncle needed respite from her condition - as it does become a strain.


RC1807

Original Poster:

12,531 posts

168 months

Wednesday 26th July 2017
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Inlaws moved to the care home yesterday. FIL thanks my wife for finding them sucha lovely one for them, which was nice.
However, it only took my FIL about 3 hours before he had his 1st fall. st! rolleyes MIL went whizzing off on foot down a corridor and left him to shuffling along on his own. He stumbled and ended up with a bloody nose!
Care home manager said if he takes another fall they will send him back to hospital.

The asistants will make sure they're both in one of the 4 lounges tomorrow so they can keep an eye on the pair of them, and get them integrated with what's going on, not in their room and effectively alone.

It's pretty clear that, whilst they're together and that's what they want, FIL can NOT be left on his own as he wants to get up and move unaided, and my MIL forgets so much now (even that he cant' walk unaided) and she forgot again on Mon eve that he was still in hospital - where he's been for 6 weeks and where she's been every day to see him (apart from when she was in the hospital too).

You can't make this st up. frown

aeropilot

34,574 posts

227 months

Wednesday 26th July 2017
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RC1807 said:
Inlaws moved to the care home yesterday. FIL thanks my wife for finding them sucha lovely one for them, which was nice.
However, it only took my FIL about 3 hours before he had his 1st fall. st! rolleyes MIL went whizzing off on foot down a corridor and left him to shuffling along on his own. He stumbled and ended up with a bloody nose!
Care home manager said if he takes another fall they will send him back to hospital.

The asistants will make sure they're both in one of the 4 lounges tomorrow so they can keep an eye on the pair of them, and get them integrated with what's going on, not in their room and effectively alone.

It's pretty clear that, whilst they're together and that's what they want, FIL can NOT be left on his own as he wants to get up and move unaided, and my MIL forgets so much now (even that he cant' walk unaided) and she forgot again on Mon eve that he was still in hospital - where he's been for 6 weeks and where she's been every day to see him (apart from when she was in the hospital too).

You can't make this st up. frown
If FiL can't walk unaided/unsupervised I'm surprised care home have not instigated that he can only move around via wheelchair - its what happened to my Mum, although this was helped in that she couldn't actually get up onto her feet unaided by then, which if your FiL still can, that does make life a little difficult - if he still things in his mind he can walk around without any problem despite the fact that he must know he falls down when that happens.
Saying they will send him back to the hospital if he falls again isn't a solution to the problem!!

FlyingMeeces

9,932 posts

211 months

Wednesday 26th July 2017
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aeropilot said:
If FiL can't walk unaided/unsupervised I'm surprised care home have not instigated that he can only move around via wheelchair - its what happened to my Mum, although this was helped in that she couldn't actually get up onto her feet unaided by then, which if your FiL still can, that does make life a little difficult - if he still things in his mind he can walk around without any problem despite the fact that he must know he falls down when that happens.
Saying they will send him back to the hospital if he falls again isn't a solution to the problem!!
That! Or, at least, that they are not in more general terms putting in place a plan to help him get around safely.

Ask him about that powerchair - it'd preserve what independence he has… definitely not for everyone at his age but equally definitely of at least theoretical benefit to someone in his shoes. (Bonus points, put a safety belt on it that's a bit fiddly to undo…)

RC1807

Original Poster:

12,531 posts

168 months

Wednesday 26th July 2017
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Sorry, perhaps I should have been clearer.

It's the intention of the care home to get their residents walking as much as possible, even if they use a frame. W/chairs are available, but my FIL has effectively spent 6 weeks sat on his behind at University Hospital Southampton, and he doesn't want to lose the complete use of his legs. I agree, though, that a w/chair, after so many weeks of inactivity would be beneficial.

The fact that my MIL wandered off ahead and left him behind is what "annoys" me. She wanted them to be together, so she needs to ensure he gets the help he needs or he's better off without her around, despite all her tears and protestations in recent weeks. frown

I'm not sure if that's clearer now I've read it again... wobble

RC1807

Original Poster:

12,531 posts

168 months

Wednesday 26th July 2017
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Just spoken to Mrs RC.

FIL's moving around well on his zimmer frame today, quickly too! He has a fat lip and a swollen hand from his fall yesterday, so his GP's been called to check him over. His hand can't be too bad though as he is supporting himself well on his zimmer. (He still has a very strong grip and arms from many years of swimming.)

MIL spent all last week saying how much she wanted to cut his hair, "when he got home...", and she didn't get it done for him today at the care home's salon as the carers made the mistake of asking my MIL (she told them "no"!!) and not asking my FIL directly. Silly mare! Anyway, he's on the salon list for next Tue when the haridressers come in again.

Mrs RC continues to plough through mountains of paperwork at home to get it back in order...120l. wheelie bin filled with non-confidential paper recycling by us on Thu & Fri! eek


ETA: I forgot to note that in the mountains of papers we found an unpaid fine for the MIL's car - didn't pay her VED from end March, so £80 plus back taxes!! Wife got the car taxed on Mon!
Also found an unpaid speeding fine. MIL was caught at 34 i/o 30. FFS! Wife's sorted that with the authorities too, explaining stress from husband in hospital, etc. All done now!

Edited by RC1807 on Wednesday 26th July 12:57

aeropilot

34,574 posts

227 months

Wednesday 26th July 2017
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RC1807 said:
The fact that my MIL wandered off ahead and left him behind is what "annoys" me. She wanted them to be together, so she needs to ensure he gets the help he needs or he's better off without her around, despite all her tears and protestations in recent weeks. frown
This is where sadly you have to re-train yourselves to cope/understand your MiL....or rather, the person that is now your MiL, rather than the one you've previously known...and it will get worse!

The home is failing here in my opinion, from what I've seen in the home my Mum was in, and the one her sister (and late husband who didn't have dementia) were/are in.
There should be no reliance by yourselves or the home on your MiL having any imput into your FiL care - she clearly isn't capable and should be by-passed completely!


RC1807

Original Poster:

12,531 posts

168 months

Wednesday 26th July 2017
quotequote all
Aeropilot: thanks
Exactly the conclusion my wife and I came to this evening, £1500/week is for their care - not for us to "supply" a carer with dementia and still pay - and that's the conversation my wife will have with the manager tomorrow.


FlyingMeeces

9,932 posts

211 months

Thursday 27th July 2017
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RC1807 said:
Aeropilot: thanks
Exactly the conclusion my wife and I came to this evening, £1500/week is for their care - not for us to "supply" a carer with dementia and still pay - and that's the conversation my wife will have with the manager tomorrow.
Nail, head.

They can support them as a couple with a shared life without leaving him taking his chances with her as primary caregiver.


Mexican cuties

691 posts

122 months

Thursday 27th July 2017
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all the best to you and your wife, you have done so much. its nearly a year since my fil passed away, mil still does not know, never asks for him, or never asks now how long she is in there. quite happy to walk us to the door when we visit and wave us goodbye! so different from when she was in there initially on her own, has her own little gang in her home and loves helping out. she thinks she has been there for over 10 years and runs the place occasionally. just had her 85th, weight little low but generally she is happy, so just wanted to say things can get better, and the fact you have done all yours long distance, outstanding, just wishing you all the best, and keep us posted

RC1807

Original Poster:

12,531 posts

168 months

Monday 31st July 2017
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Thank you all for your continued comments and feedback. It really is very much appreciated.

My wife flew home on Sat eve.
She was very upset on Sat night thinking she may have left her folks feeling abandoned in the rest home, but the reality is that her Dad understands and greatly appreciates everything, and her Mum's no longer savvy enough to understand or retain much of what's happening. Even on Sat her mum said, "Well, when we get home....". Apparently my FIL rolled his eyes, and now my wife's not saying, "No, mum - this is where you live now....", or it starts a circle of questions/answers you've covered may times before.

BIL has been in touch! eek
From his (long, 1st in 15 years) conversation with my wife, it seems he has been speaking with his parents, but of course MIL didn't share any of the important details with him. I'm pretty my MIL kept a shorthand noted script for her phonecalls to lessen/completely remove the opprtunity for 2 children and her sister to think there was anything "wrong" with her. It failed with us, regularly.


Anywho, late last night, after a rare family dinner out and a trip to the movies, my wife voiced her concerns that her parents are now spending £75k/p.a in home fees, and that perhaps she should look at a live-in carer after all...
"OK, darling - if it will set your mind at rest. You know though that your Mum's already vetoed that, hence they're in the home...and you'll be left to deal with everything - adaptations to the house, organisation of the carer(s), contracts. payments, holiday cover, etc., etc., which you DON'T have to do now....and your folks can afford the care for many years to come, so...."
My wife knows I'm right on that, but it's more to ensure to herself that she's dotted all the i's, crossed all the t's, etc. The folks are genuinely better off where they are. We will have a car to sell before the end of Sep (insurance renewal time) and a house to sell at some point, but there's no rush now.

I suddenly thought about Council Tax last week, since we haven't lived in the UK for almost 20 years, but that there was probably a discount to be had on the empty house. Wife called Test Valley B.C. who immediately cofirmed there will be £0 to pay whilst the house is empty, so that's £2.5k p.a. already "saved"!
+ Not having the gas CH on @ 30C and hot water on 24/7 will also save >£250/month
+ Electricity we expect will save >£130/month - so that's already £7k a year,
+ water's on a meter, and so the taps aren't continually dripping, like they always were! (we turned off the valves on the water pipes to the taps)
+ MIL spent loads on food shopping, most of which was binned each week! I reckon another £10k p.a there!
....I confess, I did "help them out" with the +/-50 cans of Stella in the garage... rude not to, and I think I've earned them wink )

Q: Are there any other things we should think about for the house on the bills, utilities front?
Phone/internet: leaving for the moment whilst we're toing/froing
Subscriptions: still to be reviewed, but need to cancel a few that aren't being used, e.g. "Which?"
Telegraph subscription: they get a free Torygraph at the home, so we returned all the coupons the folks had for a refund. Hundreds of them!




Edited by RC1807 on Monday 31st July 12:49

aeropilot

34,574 posts

227 months

Monday 31st July 2017
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I think you've got most things covered regarding their house. Some stuff you won't be able to do until the finance LPA comes through though.....

However, a word of caution from experience.

I did all the same things once my Mum went into the home as far as her house was concerned, but after she was there 3 months and it was clear she was never coming home, I set about starting to clear the house in preparation for its sale....and I respectfully suggest you start to thing about this sooner rather than later.
Empty house are not good, its surprising how quickly they deteriorate with no one living in them and despite me living quite close by, the amount of looking after still to do was too much after a while, and I new it was going to have to be sold (or rented but I didn't want to go that route due to its condition)
The other thing is security.

If its good enough to rent out, its a good way to 'top up' the amount going out in home fees, and you could just put it all into an agency to deal with.
Or, as I was intending to do, sell and use the funds to buy a couple of easier flats to rent out to top the funds up.
It was clear I could almost get 40% increase in monthly income for Mum's care from splitting the house sale into 2 x smaller flats.

The sooner you make a decision on their house the better, although again, you won't be able to do anything until you get finance LPA, unless you can get your FiL to sign stuff etc beforehand.

If left, the house will become a real millstone around your necks in pretty quick time I can tell you.

arfur

3,871 posts

214 months

Monday 31st July 2017
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Apply for attendance allowance. You may find you are entitled to it, most people are, even if their parent(s) are in a care home

It's £82.50 pw ... granted not a great deal, but every little helps when self funding and it's backdated from when you call them.

(recent care home requirements for my mixed dementia mother brought up the access to this DWP allowance, even though self funding at the same 1/2 rate you mention in the thread but with my father still at home)

aeropilot

34,574 posts

227 months

Monday 31st July 2017
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arfur said:
Apply for attendance allowance. You may find you are entitled to it, most people are, even if their parent(s) are in a care home

It's £82.50 pw ... granted not a great deal, but every little helps when self funding and it's backdated from when you call them.

(recent care home requirements for my mixed dementia mother brought up the access to this DWP allowance, even though self funding at the same 1/2 rate you mention in the thread but with my father still at home)
Yes, I forgot about this.

My Mum was self funding, but she was still entitled to this allowance.

RC1807

Original Poster:

12,531 posts

168 months

Monday 31st July 2017
quotequote all
Cheers guys....

aeropilot: I'd LOVE to be able to rent the house out as the area could command probably 2k/month income, but it needs quite a bit of work already. You wouldn't want to live in it although legally it's the MIL's house on the Deeds, so probably a non-starter. She's more stressed about the effing piano than anything! You'd think it's a Steinway or something, but it's an upright that hasn't been played for >2 years!

We'll also look at the attendance allowance! Thanks!

aeropilot

34,574 posts

227 months

Monday 31st July 2017
quotequote all
RC1807 said:
Cheers guys....

aeropilot: I'd LOVE to be able to rent the house out as the area could command probably 2k/month income, but it needs quite a bit of work already.
Sounds the same as my Mum's then.

Would have needed probably 10k+ spent on it to get it to rentable status, and then in the area it was in, it was only going to be about £1.5k/mth, whereas a 1 bedroom flat in the same area was £1.2-1.3k/mth.
My man maths said sell, and use the funds to buy 2 x 1 bed flats and earn £2.5k/mth instead of 1.5..!
Which is what I had started to do, but sadly my Mum rapidly deteriorated just 2 weeks after putting house on the market, and she passed away the week after I'd accepted an offer, which meant the LPA ceased, and everything went on hold as property went into probate!!

As I said, once you have financial LPA for whoever's name is on the deeds, then I would start to look to clear and sell.

Is your MiL free to come and go from the home, or has she been subjected to deprivation of liberty?



RC1807

Original Poster:

12,531 posts

168 months

Monday 31st July 2017
quotequote all
Pinged a message to my wife and she was already looking at the Attendance Allowance this morning. thumbup

aeropilot said:
Sounds the same as my Mum's then.

Would have needed probably 10k+ spent on it to get it to rentable status, and then in the area it was in, it was only going to be about £1.5k/mth, whereas a 1 bedroom flat in the same area was £1.2-1.3k/mth.
My man maths said sell, and use the funds to buy 2 x 1 bed flats and earn £2.5k/mth instead of 1.5..!
Which is what I had started to do, but sadly my Mum rapidly deteriorated just 2 weeks after putting house on the market, and she passed away the week after I'd accepted an offer, which meant the LPA ceased, and everything went on hold as property went into probate!!
frown
I think we'd need to spend a similar amount: refit the GF shower room, review/re-do the electrics (FIL liked to run a spur or 4 here and there rolleyes ) and change some of the carpets due to recent falls or incontinence.

aeropilot said:
As I said, once you have financial LPA for whoever's name is on the deeds, then I would start to look to clear and sell.
You know, I stupidly keep forgetting this bit. A case of not seeing the wood for the trees at the moment!
Solicitor said the LPA should take about 2 months to register, but the Social Worker told us he had a couple dragging on for much longer...so we hope that's not the case for us (with both of them!)

aeropilot said:
Is your MiL free to come and go from the home, or has she been subjected to deprivation of liberty?
You know, I'm not sure. She'd certainly have to ask a staff member to open the door for her as they all have security tag exits. I don't know if she's asked to go out since moving there last Tuesday as my wife was running to/from the house/rest home last week.
I can only guess MIL will ask to get out at some point, although before it was only for the Torygraph in the morning and to Waitrose once a week, neither of which she needs to do now. Certainly since this area's been her home for 50 years, she knows it very well, but with her short-term memory there could be a risk of forgetting to return to the care home, probably returning to the house.

aeropilot

34,574 posts

227 months

Monday 31st July 2017
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RC1807 said:
You know, I'm not sure. She'd certainly have to ask a staff member to open the door for her as they all have security tag exits.
If the doors have security code exit locks, they will be under deprevation of liberty. You should be given the paperwork by the SS......once they have applied to the courts for it.....although, with no LPA, maybe you won't?

The staff won't allow her out unaccompanied, even if she asks.




RC1807

Original Poster:

12,531 posts

168 months

Thursday 3rd August 2017
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MIL's being a pain at the home. I don't even know where to begin. rolleyes

My wife's now exploring the option of having a F/T live-in carer at her parents' house, and making necessary bathing/starlift adaptations for her Dad! I told her this is NOT a good idea to take seriously given the level of care her Dad needs, and that her Mum isn't mentally able to cope with (a) home life/shopping/paying bills, (b) doing anything useful for her husband, and (c) having someone else in the house as a carer 24/7. We already had problems with the Social Services care team and her Mum vetoed a live-in carer, hence why they're in a home now.

This unfortunately led to a tough discussion the night before last, stressed as we both are. My wife's so run down now, has a very nasty cough, not sleeping, etc. I laid out facts, clearly, clamly, and got snappy responses. It didn't go well.

My fear is that if a F/T carer is installed, her Mum still won't be happy, even in her own home. Everything will be down to my wife to resolve or fix, so there's a risk that she'll end up almost commuting Lux-Romsey, probably every week to sort st out. I think this thought of F/T carers comes from worrying abnout the state of her folks' finances. There's nothing to worry about! I have to be honest, they've a LOT more than I thought they would have, so I really don't see the issue. FIL took the advice he gave to clients and used it himself, since he was a senior tax partner at a Top 5 firm.

We're heading to Bordeaux this weekend for our Summer holiday, although I'm also taking a bag that fits as ariline carry-on as I'm pretty sure my wife will end up flying to the UK during our holiday. The situation is causing a lot of tension between us due to the stress.

It's just all a bit st.

Sorry, not expecting any answers. Just typing is enough to get this off my mind.

Now it's 09:00CET. Time to start some proper work. Last day in the office until 21st.

aeropilot

34,574 posts

227 months

Thursday 3rd August 2017
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RC1807 said:
MIL's being a pain at the home. I don't even know where to begin. rolleyes

My wife's now exploring the option of having a F/T live-in carer at her parents' house, and making necessary bathing/starlift adaptations for her Dad! I told her this is NOT a good idea to take seriously given the level of care her Dad needs, and that her Mum isn't mentally able to cope with (a) home life/shopping/paying bills, (b) doing anything useful for her husband, and (c) having someone else in the house as a carer 24/7. We already had problems with the Social Services care team and her Mum vetoed a live-in carer, hence why they're in a home now.

This unfortunately led to a tough discussion the night before last, stressed as we both are. My wife's so run down now, has a very nasty cough, not sleeping, etc. I laid out facts, clearly, clamly, and got snappy responses. It didn't go well.

My fear is that if a F/T carer is installed, her Mum still won't be happy, even in her own home. Everything will be down to my wife to resolve or fix, so there's a risk that she'll end up almost commuting Lux-Romsey, probably every week to sort st out.
Yes, I'm with you, live-in carers is not the option from what you have described, but you have already learnt to see reality, you wife, largely as its her parents, is looking at it too emotionally (understandably) but you really have to detach yourself from it (as far as MiL is concerned)

And its very likely that your fear in that last paragraph will end up being what happens. You can see it - she can't. I suspect she is slightly in the denial stage of thinking this is only for a while until they get better, rather than realising, it will actually get a lot worse!

This is only the beginning - the MiL will get a LOT worse than this as the condition worsens, and she will then have to go into a specialist home at some point, so you'll be going through it all again.
Much better to go through the pain now, and once she settles (and she will, it will take a few months or so) then the two of you will be able to de-stress a little.

Your wife needs to think about her Dad more than her Mum, as the dementia is already changing her Mum into a person she won't know or be able to relate to as the condition worsens. Its not easy, believe me, but, and although it sounds cruel, you do have to learn to emotionally detach yourself somewhat from a parent/loved one who has this - as much for your own sanity as anything else!