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

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

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RC1807

Original Poster:

12,480 posts

167 months

Wednesday 19th April 2017
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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

chilistrucker

4,541 posts

150 months

Wednesday 19th April 2017
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Sorry to read this and although I can't really help, (sorry) you have posted in the right place as I'm sure others will be along with good advice.

Freakuk

3,104 posts

150 months

Wednesday 19th April 2017
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I'm not sure I can really offer any advice unfortunately, but we're in a very similar situation with my elderly MIL (82).

She's had a small tremor for about 12 months but since Christmas her health has declined considerably and recently having 2 stints in hospital. She lives in a granny flat with us but within the last 2 weeks her health has declined to the point where she's in bed all day and needs helping onto a commode now, she's also not eating and confused. We have family popping in to see her and currently NHS carers coming in 4 times a day. I think she'll be back in hospital before the weeks out to be honest.

Her GP in my opinion is useless but I know the MIL doesn't want to know what's going on.

If your in laws GP is any good they have a duty of care obligation to get them the help they need or at least provide you with information on who to contact. Sorry little or no advice I'm sure but you're not alone believe me.

RC1807

Original Poster:

12,480 posts

167 months

Thursday 20th April 2017
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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.

hidetheelephants

23,731 posts

192 months

Thursday 20th April 2017
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Freakuk said:
I'm not sure I can really offer any advice unfortunately, but we're in a very similar situation with my elderly MIL (82).

She's had a small tremor for about 12 months but since Christmas her health has declined considerably and recently having 2 stints in hospital. She lives in a granny flat with us but within the last 2 weeks her health has declined to the point where she's in bed all day and needs helping onto a commode now, she's also not eating and confused. We have family popping in to see her and currently NHS carers coming in 4 times a day. I think she'll be back in hospital before the weeks out to be honest.

Her GP in my opinion is useless but I know the MIL doesn't want to know what's going on.

If your in laws GP is any good they have a duty of care obligation to get them the help they need or at least provide you with information on who to contact. Sorry little or no advice I'm sure but you're not alone believe me.
People who are bed-bound or otherwise struggle with going to the toilet often voluntarily restrict their fluid intake, which quickly sends them doolally through dehydration; ensure they're drinking enough.

Freakuk

3,104 posts

150 months

Thursday 20th April 2017
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TBH I think this is part of it however the confusion and lack of coordination means she cannot hold a glass/beaker to have a drink and often forgets to drink. It's mainly when you ask if she wants one..

HotJambalaya

2,023 posts

179 months

Monday 24th April 2017
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with regards to the last parts, my father was the same, wouldnt drink because it was hard to go to the loo, and would get urine infections, which would take it out of him cumulatively.

With regards to alzheimer's, the doctors at the hospital told me, alzheimers never kills anyone, they just stop eating or drinking. I went through absolute hell at the hospital once persuading them to put my father on IV antibiotics, because they believed that he had voluntarily stopped feeding himself and they classified it as forced feeding which they wouldnt do. Eventually they did, and as infections and confusion cleared up he called me and asked me to bring him a cheeseburger on my next visit. As perfect timing the doctor was walking past just as he was taking a huge bite and had a handful of chips, I looked at him and said, 'does that look like someone that doesn't eat?"

Have you spoken to the parkinsons disease society and/or alzheimers society? It may well be worth seeing what help they offer, some will offer in home help or care or have a list of agencies that they work with. At the very least they'll need someone stopping in every couple of days. The parkinsons may benefit from regular physical therapy too, which my local health service organised.

They are probably best left where they are as long as its easy for you to get there, and perhaps try to adapt the place for downstairs living. A change in environment could cause quite bad disorientation...

Edited by HotJambalaya on Monday 24th April 02:11

aeropilot

34,290 posts

226 months

Monday 24th April 2017
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Freakuk said:
TBH I think this is part of it however the confusion and lack of coordination means she cannot hold a glass/beaker to have a drink and often forgets to drink. It's mainly when you ask if she wants one..
My late mother went through this with what I realised was her increasingly dementia-like condition (which sadly proved to be the case)
The problem is we all think we can still do what we've always done, and won't seek help, hope it goes away, it will be OK etc.,etc.
My Mum wouldn't go to the doctor as she deteriorated as she didn't want to go into a home. The trouble was, by avoiding the issue, the situation got worse, she wasn't given the drugs at an earlier stage that could have in fact kept the condition at bay for a while longer that she could have kept her independence a bit longer.
I'm an only child and did what I could for as long as I could, but with no nearby family to help, and he stubboness, it all came to a head when she had dehydrated so much that she became so delusional that she set fire to the house and got taken into hospital for smoke inhalation and dehydration. Unfortunately she was obvisously then diagnosed with severe dementia while in the hospital and was deemed no longer capable of looking after herself, and after a month in hospital and a 3 month 'temporary' dementia home placement to see how she would respond. Sadly, after 3 months it was clear she would never be coming home, as she needed full time nursing care. She passed away in the care home about 6 months later, as the dementia just took hold so very quickly (she was 83)

From my experience, as much as you don't want it to be the case, from your description, your inlaws are close to the point (if not already there tbh) whereby they NEED full time 24/7 care, either live-in carer or residential care. The problem you could have is that unless your wife or her brother have power of attorney already (I suspect not) a lot of the decisions that will now need to be made will be out of your hands as the 'state' will have to make them, if its considered they are not capable themselves. I was lucky as I could see my Mum's condition deteriorating a few years earlier and she thankfully gave me power of attorney and, as difficult as it was, it was better that it was family making the decisions, not a 3rd party.




NormalWisdom

2,139 posts

158 months

Monday 24th April 2017
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A very difficult situation OP and one which I am experiencing myself.

The GP is a good start, I would be having more conversations with the GP and also try to make contact with the Health Liaison Team at your In-Laws' local council. Depending upon financial capabilities, it is quite possible to have carers sent 2, 3 or 4 times a day to do the basics; washing, a bit of cooking, cleaning and depending on the care company, administration of medication. I am surprised the GP didn't inform you of the options available.

My Mother has had degenerative vascular dementia for some 5 years. It all came out (my Father had been economical with the truth) about 18 months ago when he had to go into hospital for a spine operation. A stay of "3-4 days" became 3 months. I took time off work and stayed with Mum for the first few days but, when it became apparent Dad wasn't going to be out too soon, she went into a home for the 3-months. They too live in a big house, can't maintain it and a once pristine dwelling is now not a great place to be; they will not "downsize". The local Health Liaison Team (Berkshire) have put a lot in place (though Dad still refuses an overnight carer for Mum). They are both mid 80s, cannot walk unaided, Mum is at the point where she often doesn't recognise me when I visit and it is a very tough situation.

Do try the local council as well and maybe have a mode in-depth conversation with the GP. You have to be very assertive with these people in these situations as, as we all know, they have a lot on their plate!

aeropilot

34,290 posts

226 months

Monday 24th April 2017
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HotJambalaya said:
With regards to alzheimer's, the doctors at the hospital told me, alzheimers never kills anyone, they just stop eating or drinking.
Yes, this is correct to a point. The dementia type my Mum had means that not only is the issue that they just 'forget' to eat/drink, but, eventually, in the very late stages, the disjointed brain signals are thus that the they think they are 'full' and not hungry, so why they refuse food/drink even when being tried to be forced fed.

Its a grim ending when it gets to that stage I'm afraid..........horrible to see cry

RC1807

Original Poster:

12,480 posts

167 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

HotJambalaya

2,023 posts

179 months

Monday 24th April 2017
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RC1807 said:
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



Russell
You may find that your window of opportunity for getting a power of attorney has well passed, it may now be (I think?) a guardianship order or something similar. The fact being that the MIL can't sign over power of attorney if she isn't of sound mind.

Your local health association may also have a dementia team and specific nurse unit that deals with them, if you could get them properly synced with Parkinsons nurse visits you may have something. My dad was enrolled in the 'movement disorder clinic' which was basically an appointment every 2-3 months to check his symptoms.

As horrible as it may be, the crawling around the house on all 4s could actually be very good exercise for him.... In particular in keeping up the strength to lift himself off the floor, which my father couldn't do. I went out one evening and told him if the TV plays up to unplug it, and plug it back in. I come home hours later to him sleeping on the floor, because he got down to do it and couldnt get back up again...

Honestly its a horrible horrible disease.

Oh, I forgot to mention this:

https://www.amazon.co.uk/Parkinsons-Disease-Reduci...

This book is interesting, and I was in contact with the woman, lucille leader with regards to the nutrition component. She said that with managed nutrition certain drugs could be reduced or eliminated and some symptoms improved. She runs a nutrition clinic in london where she deals with Parkinsons stuff, it may be worth looking into it, I never got a chance to go too far into it because my dads condition declined very rapidly around that time, but in the sense of leaving no stone unturned its worth looking at.


In addition, I took an additional consultation with what is probably the top parkinsons consultant in the country:

http://en.wikipedia.org/wiki/Andrew_Lees_(neurolog...

Pretty much every parkinsons publication has his name all over it. He knew his existing consultant, and proposed a small change to existing medications, and added another one. Not cheap at £450 for a 45 minute session (and he was 10 mins late!) but well worth it in my book. Let me know if you're interested and I'll try digging out his office details.

aeropilot

34,290 posts

226 months

Monday 24th April 2017
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HotJambalaya said:
RC1807 said:
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



Russell
You may find that your window of opportunity for getting a power of attorney has well passed, it may now be (I think?) a guardianship order or something similar. The fact being that the MIL can't sign over power of attorney if she isn't of sound mind.
That's my feeling as well, from the OP's description of his inlaws situation, which is why phrased the wording about POA as I did.
It depends on how the independent witness to the POA application feels his inlaws respond to the question of understanding what is being asked.
Its still worth making the app if the OP knows a non-family member that knows his inlaws well enough to do the independent witness bit?
But, its definitely a don't delay situation OP, start by downloading the forms from the uk.Gov website (there's two POA's, one for health and one for finance)

https://www.gov.uk/power-of-attorney/overview





TooMany2cvs

29,008 posts

125 months

Monday 24th April 2017
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aeropilot said:
That's my feeling as well, from the OP's description of his inlaws situation, which is why phrased the wording about POA as I did.
It depends on how the independent witness to the POA application feels his inlaws respond to the question of understanding what is being asked.
Its still worth making the app if the OP knows a non-family member that knows his inlaws well enough to do the independent witness bit?
But, its definitely a don't delay situation OP, start by downloading the forms from the uk.Gov website (there's two POA's, one for health and one for finance)

https://www.gov.uk/power-of-attorney/overview
It's not necessarily too late... My father was diagnosed with Alz (with a bit of vascular, just to spice things up) at the start of last year - and the doctor at the memory clinic was happy to sign the application at that time. All they need to now is that the patient is aware of what they're signing, and happy that you're the right person.

As far as "what's available" - I presume that they own their own home, and perhaps have other assets and income? If so, then "what's available" is - quite simply - whatever they can pay for, since they won't be getting any help at all from the state. The combination of mental and physical problems does sound as if residential care is required sooner rather than later, unless you can get some fairly serious home care in place.

NormalWisdom

2,139 posts

158 months

Monday 24th April 2017
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TooMany2cvs said:
since they won't be getting any help at all from the state
This is not entirely true - I think it depends upon the local Council and their Social Services'budget. My parents are "cash poor", despite owning a very valuable home their joint income from pensions is less than £36k per annum and they have no savings, it is this liquidity that is used to calculate benefits granted. This qualifies them for 4, paid-for, care visits each and every day. That said, anything more (overnight carer or rest-home) would require them selling the property to fund it themselves.

aeropilot

34,290 posts

226 months

Monday 24th April 2017
quotequote all
NormalWisdom said:
TooMany2cvs said:
since they won't be getting any help at all from the state
This is not entirely true - I think it depends upon the local Council and their Social Services'budget. My parents are "cash poor", despite owning a very valuable home their joint income from pensions is less than £36k per annum and they have no savings, it is this liquidity that is used to calculate benefits granted. This qualifies them for 4, paid-for, care visits each and every day. That said, anything more (overnight carer or rest-home) would require them selling the property to fund it themselves.
Yep.

This is where it can become a problem, if no POA in place. With POA I was able to start the house selling process to be able to manage Mum's finances to pay for her residential care (over 3k per month) as what savings she had was being consumed very quickly by those costs.
If I hadn't had POA I would have had to apply to courts etc., to get and it all would have started to get complicated and time consuming.

With the change in law back in 2007 IIRC, the problems faced by many families now that weren't aware of the PO law changes and what it affects can be a big issue. I used to talk to some of the other relatives when visiting Mum, and some of the problems faced by some of them that didn't have POA made me feel very lucky that I'd found out about it, and Mum wanted to make the arrangement while she was able to.

CinnamonFan

980 posts

195 months

Wednesday 26th April 2017
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Hi OP,

You require an admiral nurse. They specialise in elderly care, particularly conditions under the blanket of dementia.

They are very good at signposting specialist services and then delivering them! Getting whoever requires help to accept it with a purposeful care package. I believe their GP can refer one to you/them. If not call NHS 111 and they will advise you further.

If tests for UTI's havent been done already, try and get those to happen. Delirium and periods of heightened confusion can be sudden and be caused by infection. Its a good thing to rule out before anything else. UTI's are more common in women than men.

If you require elaboration or anything else please drop me an email. Even just an informal chat.

Alex

RC1807

Original Poster:

12,480 posts

167 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:

12,480 posts

167 months

Sunday 4th June 2017
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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

TooMany2cvs

29,008 posts

125 months

Sunday 4th June 2017
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RC1807 said:
It's heartbreaking all round.
Of course it is.

But the important thing is that this is now all known about... This is where things start to improve.