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

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

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RC1807

Original Poster:

12,534 posts

168 months

Wednesday 19th April 2017
quotequote all
TLDR; helping elderly relatives when you live hundreds of miles away.
FIL has Parkinson’s, MIL has dementia, but won’t admit it or get help. HELP, us, please!

Apologies in advance, this may be a long post … we’ve not faced this situation before with elderly relatives. PHers have knowledge on so many topics, and I’d genuinely like to know what we can do, please – what (more local) help is available that we don’t know about, perhaps?

This is about my in-laws.
I love my in-laws to bits. They’ve been ace with me, my wife and our 2 (now teenage) girls. Now, though, age is taking a hold of both of them and they’re struggling more and more in daily life in Hampshire, whilst we (me, wife and children) live in Luxembourg, about 8 hours drive away.

FATHER IN LAW
My FIL had a stroke about 2 ½ years ago, aged 77, and to start with it seemed he wasn’t greatly impaired, either his speech or movement, which was a relief. Within a few months though he was no longer walking but shuffling along, really slowly. During his next GP visit the GP noticed this and referred my FIL to a specialist where he was diagnosed with Parkinson’s.

In the last 2 years he’s really become a shadow of his former self. He wasn’t ever a massive bloke, except for a wine filled belly, but he’s now taken to crawling on all 4s around the house (it’s faster than using his zimmer frame, but it’s heart breaking to see this), and he’s shrunk from around 14st to about 9st in the last year. He dribbles constantly. His speech is very difficult to understand, and is now very quiet. He falls asleep regularly, even whilst seated and using his electric shaver (I guess the noise may be sleep-inducing?), and, most difficult for him, he’s become incontinent so has to wear incontinence pants, which, more frustratingly, all too often leak. The house reeks of wee, and the heating's at 30C, so it's pretty bad in there frown

Before his stroke this man used to swim >1 mile/day before breakfast, walk for miles, cycle everywhere to avoid using his car, and now he’s virtually an immobile waif.


MOTHER IN LAW
My MIL has had more than her fair share of ill health before and around her retirement, and turned 78 last week. I noticed about 16 months ago that her short term memory was letting her down when she asked me the same question 4 times in <20 minutes. This is more of a concern for us now as, although she’s admitted it to us, she hasn’t seen her GP about it. It’s becoming worse, a major concern. She’s my FIL’s primary carer – dispensing his increasing daily meds.
Whilst we were in the UK last week we visited the MIL’s GP and asked for a note to be placed on her file to advise the GP we were concerned for her ongoing mental health, especially since she’s a F/T carer for her husband, which the receptionist very kindly dealt with.

As to what help/services may be available – my FIL has a physio who visits to help him with some exercises to try and keep him mobile, but I think he’ll be wheelchair bound by the end of the year.
They’ve had special toilet seat stands (with side rail handles) delivered, 2 zimmers and a special chair, which is so heavy my MIL can’t move it – so it doesn’t get used (!), and extra handrails have been fitted on their stairs.
They can not maintain their 4 bed detached house, physically or mentally, and ideally we’d like them to move to an apartment where there’s emergency help if they need it, since we’re so far away. They have a son who lives on the IOW, but he hasn’t visited his parents for 2+ years, the useless wker! I’ve been over to help them (fixing stuff, sorting paperwork, etc, that my FIL can no longer do...+++) 4 times in as many months.
They won’t move or downsize, although they really should.
This is the source of many sleepless hours for my wife and I at the moment.



So, to the crux of this: what kind of help, respite care, etc., is available in the UK, please?
Also, what can we do about my dear old MIL’s mental health, beyond what we’ve advised the GP’s receptionist?



Thanks for having taken the time to read, and thanks in advance for any help/comments!


Russell

RC1807

Original Poster:

12,534 posts

168 months

Thursday 20th April 2017
quotequote all
Tnank you both for your comments.

Freakuk: sorry to learn about your family's issues too. frown

We'll get in touch with the GP and see what can be done. He seems to have been helpful so far, but it may be that my inlaws simply said they were coping. They're not really.

RC1807

Original Poster:

12,534 posts

168 months

Monday 24th April 2017
quotequote all
Thank you all for taking the time to comment and also to share your difficult experiences, too.

It's a shame we didn't get to see my MIL's GP in person, but I do think my wife (at least) should have a phone appointment with him to explain the situation and see what help they can obtain.
I can't recall who posted it above, but I too think the idea of my wife having a power of attorney is a very good idea, too - thank you.

I'll also ask my wife to look at the Parkinson's Association for help. My FIL has regular home visits from a physical therapist, but since he's taken to crawling around the house on all 4s, the exercises seem rather "pointless", IYSWIM. frown

Again, thanks all - lots to take in and deal with - which we'll do everything we can to achieve.

We seem to say, "we'll cross that bridge when we come to it...", thinking it won't ever be needed, then it's right there in front of you like a mountain to climb.

Good luck too to those of you facing similar situations.

Russell

RC1807

Original Poster:

12,534 posts

168 months

Wednesday 26th April 2017
quotequote all
Thanks for taking the time to respond, Alex. Much appreciated.

My wife and I need to sit down this weekend and run through a plan together, moreso that I'm not seen as taking over. It's obviosuly more difficult for her as it's both her parents. Not ideal that it's my wife's birthday on Sat., but....

PH: it's not all cans of Red Bull and powerfully built co directors. wink

Cheers!

RC1807

Original Poster:

12,534 posts

168 months

Sunday 4th June 2017
quotequote all
A quick update

TLDR; GP did fook all, FIL in Soton General after a 999 call today, and the NHS are assessing with social services for daily carers to be appointed ASAP


Since we were in the UK at Easter we'd not heard of any bad or difficult things from the MIL whenever she'd spoken with my wife. We arrived in the UK again yesterday to celebrate my FIL's 80th birthday. Seeing his current state was genuinely heartbreaking for me, and I don't know how my wife didn't break down. Whilst we hadn't been informed, he'd had 5 falls at home in the past month and is covered is bruises and scabby grazes - knees, shins, elbows, forearms, etc., where he's falling. He also has a beard as he's not shaven, and my MIL seemingly didn't think to help him with that. He's also lost more muscle mass. Very sad.

This morning I woke early as I was going with a mate who lives fairly locally to the outlaws to run Poole 10km, but just as I was swinging my legs out of bed, our eldest daughter came in to tell us Granddad was on the floor in the entrance hall, and wasn't very responsive.
Oh, st!

Ran downstairs to sort him out and he was really confused, coudln't speak, couldn't move, and was in a lot of pain. Managed to get him on to a kitchen stool, but he was convinced he wanted to crawl on his hands and knees into the living room to his chair. Helping him down from the stool, he shrieked and gripped me so tightly as he was in pain.

Asking my MIL why he was downstairs without his walking frame, she replied that he'd slept on the hall floor - and has for weeks! Why? WTF?!?! He wouldn't go to bed. fk! I'm upstairs and my poor FIL is sleeping on the hall floor in his dressing gown - no bedding or pillow even - and she didn't tell me?!?! This is all fked up. There's a folding bed in the office. She didn't
think to ever move it for him! I was stunned.

I called 999 and the brilliant Soton ambulance crew were here in about 10 minutes. Really helpful, asked the important questions about an elderly person - having quickly sussed my MIL couldn't answer their questions suitably -
"Can his wife cope?"
No
Do you think he needs care or carers at home?"
Yes, please!


My FIL really didn't want to go to hospital. He swore at the ambulance crew, and he never swears. I knelt next to him and explained that even I struggled to lift and move him, so he needs hospital care until his wife gets the help need. I genuinely believe he's scared he will end up in a home, and he doesn't want to, but my MIL can not cope as she is.

The ambulance crew completed a care assessment ready for his admittance to hospital and he's had a load of tests during the day today, and is likely to be an inpatient for a week until careers can be sorted - since we have to head home tomorrow frown

MIL went in the ambulance with him, and my wife followed in the car. It fked up the planned 80th celebration for him this evening, but it wouldn't have been good anyway, since we've been so poorly informed by my MIL.

It's heartbreaking all round. I think we'll be doing more cross-Eurpoe weekend blast from now on.

frown

RC1807

Original Poster:

12,534 posts

168 months

Wednesday 7th June 2017
quotequote all
MIL and FIL were yesterday telling the staff at Soton General that they wanted him home and didn't need any carers or support. Thankfully they'd taken note of the MIL's memory issues and called my wife at home...wife told them there's no way they can go home without support, based on what we'd experienced at the weekend. FIL is retained in the geriatric unit until post-release care can be sorted.

0130 today, the phone rings. Oh. st.
Wife answers and it's the police. st. st!
They explain they'd been called to the inlaws' as my MIL was confused as to where her husband was.....hear her in the background repeating, "Where's my husband? Where's my husband?" The police had already worked out from the contents of my MIL's handbag that he's in hospital and had called Soton General and spoken to the duty nurse to check he was ok. (We don't know how this confusion or 999 police call came about as the MIL wasn't making any sense on the phone.)

MIL is put on the phone and my wife had to explain to her, a few times, that he was ok and in hospital, having been there since Sunday - "you were with him in the ambulance, Mum, remember?..." Finally she calms down and seems to recall, but the questions continue whilst the police are back on the phone to my wife....

Police suggest they get an ambulance out to check MIL for any infections - okaaaaay.... Not sure why that comes into effect, but this police officer seems to be keeping the MIL calm and may have dealt with this stuff before.

An hour or so later the phone rings again. Ambulance crew did a test for a urine infection and the MIL has one, so she's off to Soton General - where her husband is!
FFS, we're home in Lux - 500 miles away.
At least my MIL isn't home alone, and we are grateful to the police and the Soton Ambulance crew a once again for their help!

My wife will call the hospital later updates on them both, and it's now abundantly clear my FIL can not return home without the care support.


(My wife's brother, meanwhile, isn't having to deal with any of this stress, although he only lives on the Isle of Wight, about 40 miles away. He doesn't bother staying in touch with my wife or his parents, and hasn't visited the parent for 2 years. We've not seen him for 16 years! Let's see if this latest news can rouse the lazy . mad )

RC1807

Original Poster:

12,534 posts

168 months

Wednesday 7th June 2017
quotequote all
Thanks guys. Appreciate the repsonses. Hadn't thought of the dehydration issue.

I need to keep an eye on my wife too, making sure she's OK. She's handling this remarkably well and clamly - at the moment. I'm at work and the home phone's engaged, so I'm sure she's calling Soton General to find out the latest before we take the next steps...

My wife & I discussed the POA topic together only on Saturday evening, right before Sunday morning's events, so we will have to move ahead on that now in the current circumstances. My FIL understands everything that's going on, so I hope we can get some conclusion on this bit, at least.

Having a live in carer isn't an issue; there's space. Having a cleaner and/or housekeeper too, again, isn't an issue financially, it's getting it all organised. We can go over every couple of weeks now my business travel's over until September.


Edited by RC1807 on Wednesday 7th June 09:40

RC1807

Original Poster:

12,534 posts

168 months

Wednesday 7th June 2017
quotequote all
Thanks - all very useful to know, and greatly appreciated.

Russell

RC1807

Original Poster:

12,534 posts

168 months

Friday 9th June 2017
quotequote all
Just posted an update and it disappeared....

OK, a quick re-type

My wife's flying back to the UK today for the weekend. She needs to get stuff from her parents' home so they've clean clothes, etc., at hospital. There's no-one useful or with access to the house locally. (She's going this weekend as (a) it's needed, and (b) she doesn't want me to miss Le Mans next weekend. She's fking ace, my wife. cloud9 )

Soton General have been great. They've really helped in ensuring my wife's kept updated and informed. That's a real stress reducer for her. MIL is being kept in hospital until the post-release care can be arranged as they agree there are dementia issues at play - not scored well in even some basic tests. We await the CT scan results. She will be moved to the geriatric ward with her husband as soon as there's a bed available.

I've been in a bit of a daze at work this week, where this is playing more on my mind than I thought it could/would.
(That's not very good for me as we're dealing with a lot of regulatory changes at work, so I've been reviewing supplier contracts together with my legal team. Let's hope I haven't fked something up! eek )


RC1807

Original Poster:

12,534 posts

168 months

Saturday 10th June 2017
quotequote all
Hospital didn't find any urinary infection, so that's a bit of a confusing one on its own.



My wife's went to see her parents yesterday. MIL was visiting her husband's ward, so that made it easier.

MIL couldn't recall why she's at the hospital, so my wife explained it to her in front of her dad - the confusion, the 999 call, etc. As my MIL went to the loo, my FIL told my wife that he didn't realise her memory issues were so bad, and he now understands why she's still in hospital, and as much as he wants to go home, he simply can't.

That understanding is pivotal to getting them to accept carers are needed.

Social services, I think, now have a set of house keys so they can go in and make an assessment of what's needed in the house - bed, showering facilities, stairlift, etc., all of which my in laws can easily afford, and they now desperately need so my FIL can be clean and get to/from bed.

The Lasting PoAs (medical and financial) is a discussion for today.




RC1807

Original Poster:

12,534 posts

168 months

Monday 12th June 2017
quotequote all
FIL said he put an LPA in place about a year ago, in readiness, but he can't remember where he put the document...I think he meant he's changed the executor of their Wills, so my wife needs to check with their solicitor and IFA.

RC1807

Original Poster:

12,534 posts

168 months

Monday 12th June 2017
quotequote all
Thanks both
No letters received, so ulikely it's any PoA


RC1807

Original Poster:

12,534 posts

168 months

Wednesday 14th June 2017
quotequote all
Thanks again, guys

My wife's been back since Mon eve and has spoken with the hospital specialists and social services since. Target is for her parents to return home next Tue, so my wife's booked to fly back again on Tue. At least then, if there's any delay, my wife can at least sort clean clothes, etc., if her folks remain in hospital.

Next week will also given her a chance to speak to the folks' IFA and also go through the mountains AND mountains of paperwork my hoarding inlaws maintain, to see what's still needed, what isn't.... e.g., folders full of all the docs, invoices, etc., on his M reg V6 Cavalier that was part ex-d in 2004, bank statements dating back 30+ (yes, THIRTY) years, O.S maps for most of the UK that were used ONCE, etc. rolleyes

Again, and luckily for me, my wife's still letting me bugger off to Le Mans tomorrow. thumbup
If anything siginificant should happen to the outlaws whilst I'm away, and I need to, I'll get back to the UK ASAP.


RC1807

Original Poster:

12,534 posts

168 months

Tuesday 20th June 2017
quotequote all
Thanks again for the support, and opening up about your own experiences.

I remain genuinely amazed at how my wife's dealing with all of this. I got back from Le Mans yesterday lunchtime, and my wife took a flight to LHR earlier today and will be there until Sat afternoon.

Having spoken to the hospital and the social services peeps, the outlaws will be released from hospital on Fri, and carers will be in place in readiness. In the meantime, MIL has been moved to Geriatrics with her husband, so she won't be getting lost around Soton General.

Social Services did their assessment on the house and have some recommendations, including that a stairlift is needed. Until that's in place the folding bed can be used in the living room - NO more sleeping on the entrance hall floor is permitted! clap

Contact with my BIL has finally been made. rolleyes
He remains, even in the view of my usually very restrained daughter, "a cock". Wife had emailed him and he wanted to know the details - which he got - but he could only respond with, "Thanks for the update."
That's all. No, "I'll visit them ASAP!"
He's a genuine grade A cockwombling wkstain. punch

Anywhooo, wife needs to clarify LPA context and if there is one in place, who is it?


Thanks again.

Russell





RC1807

Original Poster:

12,534 posts

168 months

Tuesday 20th June 2017
quotequote all
That's not a bad idea on the carers; will discuss with my wife later.

I think an electric wheelchair could be useful too, but I'm not sure how steep an incline they can deal with. Their driveway is tricky. I will investigate that one... not really my kind of roadtest, but, hey laugh

RC1807

Original Poster:

12,534 posts

168 months

Thursday 22nd June 2017
quotequote all
Wife has spoken to the IFA; he doesn't have LPA on the finances.
He will visit the inlaws early next week to run thorugh their finances so at least my MIL knows (or has it all written down) as she has no idea of her husband's investments over the last 40 years.

Likewise, solicitor's been contacts. No LPA on file there either. Also learned that the re-drafted Will the inlaws did last year hasn't been signed (!!!), so the solicitor's been asked to get on that bloody pronto, and he will also do so early next week.

Otherwise, they're being moved home tomorrow, Social Services are dleivering a commode tomorrow too, and carers will start on Monday, so my wife will have to ensure they're sorted Fri night and OK on Sat before she flies home Sat p.m.

FINGERS AND TOES ARE CROSSED! smile

RC1807

Original Poster:

12,534 posts

168 months

Monday 26th June 2017
quotequote all
Inlaws are home and the carers already started on Friday.

They've both been very confused when in hospital, thinking they were on holiday. MIL asaid to my wife, "It's been a lovely break! The food's very good. Can't wait to come again!" My wife lost count of the number of times her mum said things like, "I can't remember where I parked the car.", when my wife had been using it all week. FIL wondered where his credit cards were so he could "pay the hotel bill"... all very sad now seeing how quickly they're deteriorating.

My wife, toghether with the hsopital, sorted medication deliveries from the pharmacy, all dleivered in speical blister packs so my MIL isn't distributing them, since she's forgetting many things.

Their solicitor will drop in with the unsigned Will, so that can be signed, and he's also sorting LPA. My wife left instructions for her folks to tell them. The IFA is also dropping round a list of investments so my MIL has everything noted, since my FIL did all of that before, so that's a few more things in play and close to being sorted out.

However, they both then quickly forgot when they got home that carers would be coming in. Pleased at least my wife was there Fri and most of Sat before retunring home, so she could at least explain the situation to the carers, who are a team of 8 - 4 of whom live locally to the inlaws. They've been realy good with my FIL, making sure he;s clean and shaved, which my MIL wasn't doing, and we're still not sure why that was, since she's very keen on ensuring she's smart for the day, even if she only goes to the papershop to get the Torygraph each morning.

Stair lift companies are coming in tomorrow and Weds to measure/quote, one local and Stannah, not that my FIL needs it yet - he can, apparently, ascend and descend the stairs very well, which leaves us more confused as to why he was sleeping on the floor in the entrance hall way 3 weeks ago. Nothing meakes sense any more, and I'm not sure it's supposed to with these 2 now. frown
(I think it's because my MIL wasn't doing anything to help him each morning, fussing about herself, but in the evenings she turns into a pain in the arse, buzzing around like a fly always up/down and insisting on helping him every minute. I think that pissed him off, and sleeping on the floor was his stubborn way of saying "F.U!", as he couldn't articulate it another way.)

We had a few days away planned next month - our 1st without children in 8 years - but that's now cancelled so we can go back to England again to sort out some stuff at the inlaws (emptying attic and sorting paperwork for a couple of days). We hope we'll get at least some evening sun on the beach at my brother's in Poole, where we'll be staying. We need it.

Anyway, my BIL has, in time honoured fashion, not made any effort since he returned from holiday and read the many emails my wife sent him. the last message to him was, "Get your lazy arse over to see mum and dad. You'll have to make your own way there - ferry and bus or train, whatever you have to do. Mum can't collect you from Soton as she'd get lost."
He lives on the IOW and hasn't been to Romsey for >2 years. Have I said before how much of a tt he is? Maybe...

Fingers cross the carers are OK with the inlaws this week as it's all very new to them. smile

RC1807

Original Poster:

12,534 posts

168 months

Monday 26th June 2017
quotequote all
TooMany2cvs said:
...You can choose your friends.
Quite.

RC1807

Original Poster:

12,534 posts

168 months

Monday 26th June 2017
quotequote all
fkety, fkety, fk!

Wife's just called her Mum to see how they are and the Paramedics are there as my FIL's had another fall. He's off back to Soton General to be checked over.

FFS. frown

ETA: On the positive side, the carer and occupational therapist were there just after he'd fallen, and could deal with the Paramedics better than my MIL. She's so confused now.
(Seems FIL also refused the carer's help last night when she went round to clean him up and get him ready for bed. This doesn't help as we know my MIL struggled to sort that properly and he always went to bed wet, and you wouldn't leave a baby like that. frown )

Edited by RC1807 on Monday 26th June 11:01

RC1807

Original Poster:

12,534 posts

168 months

Monday 26th June 2017
quotequote all
I agree.

My wife's realising that too, so that'll be the next task. st, innit.

Thanks both. smile