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

[7w7]

My Grandad had dementia before he passed away.

Seeing a very tall powerful man become little more than a skeleton in his final weeks is something I'd rather not remember to be honest.

[Sargeant Orange]

Took the first steps in getting mum's dementia diagnosed today. Unfortunately the GP was absolutely useless despite me explaining how bad mum was in a phone appt yesterday.

She basically asked mum if she was having issues remembering things & mum denied anything being wrong. They then talked about her dry eyes for the rest of the appt! I could see on the GPs notes that at her previous appt some confusion had been noted and she was confused again today, answering different questions to those asked. But that seemed to be that as far as the GP was concerned, she'd told me on the phone that she couldn't do anything if the patient said there wasn't an issue.

We got halfway out of the surgery & I just turned us back around & stormed back in. I couldn't face mum deteriorating further when I know she could get help if it was diagnosed.

To cut a long story short I reeled off a load of examples of the confusion to mum in front of the GP (she got upset as its the first time I've been so frank about it to her) & asked her to take the test to prove me wrong. She agreed & then failed it miserably. Sitting there listening to her struggle to count backwards from 20 will live with me for quite a while

So waiting for a referral to the memory clinic now for more tests.

Don't take any st from these GPs, in my experience with mum and the in laws previously they haven't got an effing clue when it comes to mental health

[TooMany2cvs]

Sargeant Orange said:

We got halfway out of the surgery & I just turned us back around & stormed back in. I couldn't face mum deteriorating further when I know she could get help if it was diagnosed.

To cut a long story short I reeled off a load of examples of the confusion to mum in front of the GP (she got upset as its the first time I've been so frank about it to her) & asked her to take the test to prove me wrong. She agreed & then failed it miserably. Sitting there listening to her struggle to count backwards from 20 will live with me for quite a while

So waiting for a referral to the memory clinic now for more tests.

Good for you.

[RC1807]

Well done Sgt. Orange for making the GP listen. That's often the largest battle, and it really shouldn't be!


MIL's beocme institutionalised now, for wnat of a better phrase. My wife went to the UK to see her last week. MIL didn't even want a trip out of the home. She's more involved in their activities, which is backed up when we see the home's photos on FB, and she has absolutely zero record of time / how long she's been where she's been. Still asks where her husband is from time to time. It'll be 1 year since he died in a couple of weeks.

[geeman237]

I thought I'd take the liberty of jumping in on this thread after starting mine at the beginning of the year along similar lines.

https://www.pistonheads.com/gassing/topic.asp?h=0&...

I am about halfway through reading through RC's history with his in laws.

I will go through it all and see if I can glean some information on my situation.
Update as follows.
I live in the US, my brother in Australia. Mum and dad divorced many years ago. Mum is an only child with no other known living relatives. She's 78 and lives in Cornwall. If you see the thread link about for what started this, then great.

This summer, around July I think, mum's neighbour called to say she called on mum to see how she was. She found mum slumped in her hallway floor unable to get up and no clue how long she had been there. Ambulance called, mum off to hospital. Tests found nothing physically wrong, and now she's mobile again. But this finally got me some traction on getting her memory/dementia looked at. Only a couple of weeks before she went into hospital she agreed to a CT scan at the same hospital. Frustratingly the doctor looking at her had no access to the scan results! Anyway, social services stepped up their game and slowly things started to happen. Mum ended up in hospital for a couple of weeks and was then transferred to a smaller hospital. They told me tests and assessments would continue as they knew something wasn't right. TWO MONTHS in hospital and still I get no, what I would call formal, confirmation of her mental capacity, but they deem her not capable of looking after herself, and decide (after a conf call with my brother and I (that was fun with the time differences)) that mum needs to be in a care home for a few weeks for MORE assessments. So, now she's been in a care home about 6 weeks and they are recommending she stays there at about 900 GBP / week as its a dementia rated home.
We have the wellness POA in place and registered. We thought the finance was done, but then I found out mum had had it drawn up but not registered. Arrgghhh! Now that is being processed and fingers crossed it will be OK.

This coming Saturday I am flying over to spend a week in the UK to see what happens now. I am meeting at the care home with the Social Services to discuss things. Also meting with the solicitor.

Finances : Maybe some of you can give me some advice. Mum owns her home outright. She has, I think, <7k in other cash assets. Social Services said they are picking up the bill for now, but once things are permanent, that will be back on mum. So, it seems with her small bit of cash, and her house value, she falls into the self funding category, ie assests over 23+k. There is nothing my brother or I can do, other than sell the house when the Finance POA comes through I guess, and use the money to pay for her care. Mum hasn't has a financial assessment yet, but how can Social Services do that when she can't remember things properly?

I am meeting with a couple of house clearance companies during my week in the UK and will contact a couple of estate agents too.

She appears to be doing ok in the care home, fingers crossed.

This trip will be a bit more of a fact finding mission. I am looking for a cleaner to look after the house and have an odd job man lined up to meet too. The neighbour has been fantastic so far.

OP, sounds like you've had a it a lot tougher than me though.

[phumy]

Geeman,

I have never put this in writing before and have never really wanted to but here goes:

I responded to your original thread mentioning that i too used to work over seas and that i had to give it up and go home for my wife. The out-come for us as a family is that i stayed at home and cared for my wife for as long as i could manage on my own (with some daily care from outside agencies) but it all came to head when she deteriorated to such a stage that i could not care for her anymore so my sons and I decided that she needed to be in a care home. After many visits of many care homes we found one that we thought would take her on, they came and did a home assessment then she went in the next day, that in itself was traumatic, taking your loved one for 40 years into a strange place and leaving them there felt like i was dumping her. Anyway the upshot was that she got abusive with the staff and they then refused to take her and told me i had to take her back home. I really was in no fit state, mentally, to do this long term so as soon as i got back home with her i called Social Services and put the onus back on them, i was told the only other alternative was to section her under the mental health act under section 2. So thats what i did, rightly or wrongly the decision was taken once again by my three sons and myself so we were all in on what was happening, the very next day she was committed to a mental health unit to be assessed over 28 days,I can honestly say that this was the worst day ever of my life. I can go into specifics as it wells up inside me to even think about it, its happeneing now. Anyway she went in and i couldnt go to see her for the first week as the assessments were done.

I went to see her after a week and i could tell that she was under heavy sedation and had changed massively but was very calm, which was for once, nice to see. The unit that she was in was very good, it was a Dementia unit and they certainly knew their jobs, it was refreshing to see NHS working at its best, as far as i could tell anyway. After three weeks in the unit i was called in for a progress meeting and was told by the doctor that they wished to keep my wife in for longer and would have to be kept in for longer than the 28 days and the only way that could happen is to admit her under section 3 of the MHA, which i agreed to, this means that the hospital can keep her in for up to 6 months for assessments. Being changeged to a section 3 also changes the financial position too in kicks off section 117, this means that the local authorities and government are obliged to finance her accommodation for the rest of her life, which as you can imagine takes an enormous financial burden and worry away from me. She only stayed in hospital for about 8 weeks of the 6 months that they could have kept her as they deemed her ready to be discharged from the mental unit and be put into care, which she is now.

She went into care around one year ago now and although i miss her like crazy it really is the best place for her, she has all the qualified people around her that she really needs, i couldnt do what they do for her now. She went in one year ago very heavily drugged with 23 different types of drugs on a daily basis and around three months ago they started to reduce her drugs to try to get her personality to show through again, which is great. In that time she has started to converse more and has taken up knitting again which she hadnt dont for about 10 years, (way before she was diagnosed). She doesnt recognise me as her husband or our sons as sons, she know that our faces are recognisable as a person to her, its great just to get a smaile from her when we go to visit and a way bye bye at the end.

I have gone through so much turmoil over the whole episode over the last 4 years, I have grieved for her i have felt guilty about putting her in hospital, i feel bad about the good times that she is missing with her grandchildren, it just goes on and on.

I really hope i havent painted a bleak and terrible picture for you but i just wanted you, and possibly others to understand just whats you go through and the sacrifices that you might have to make for the ones that are important to you and the ones you love.

Once again i say to you, you can pm me if you want any info on anything, is she getting PIP, has she been assessed by the local authorities, these are all agencies that can help your mum financially and you may find that she is entitled to it, every little bit helps.

Edited by phumy on Monday 5th November 02:46

[RC1807]

Hi Geeman

Phumy and I both responded on your initial thread, and I'm pleased you're now able to go to the UK to start things off for your Mum.

Being outside the UK does complicate things, especially with such large time differences, to speak to the people you need to - so please have a clear list of what you need to achieve in the week you're over, as it'll soon pass.
Even though you don't have the £ PoA in place yet, please go to your Mum's bank(s) / building society to find out what they need to give you access once the PoA is available. All institutions differ in their requirements, and many of the banks you can't speak to directly, rather going through a long call tree or call centre, then the person doesn't know what's needed!
That can be very frustrating.
My wife closed some bank accounts the folks had as the banks were so sodding useless at putting the PoA in place and giving online banking access.

Although we're outside the UK, we're only an 8h drive door-to-door, so my wife's racked up more than 30k km just going to / from the UK in the last year or so to sort things out, and it did take a LOT of time as the folks (certainly FIL) should have gone into nursing care earlier, as MIL didn't want to be apart from him.

For the finance side of things, as I recall, Social Services will fund at their reduced rate (they get from the care home) until you're able to repay it - from the sale of the house, by the sound of it.

The PoA can be a "PITA", with certified copies being sent here and there, once it's granted, but knowing what's needed in advance helps a LOT.

Best wishes for your trip and getting things sorted.

[RC1807]

One year today since my FIL died.
Still thinking of you, mate.

[RC1807]

Christmas came and went, and MIL didn't make any fuss at all like she did about sending cards, present shopping as in 2017.

She seems to have become kind of "institutionalised" in her day dreaming in the last few months.
When my wife calls her, the call contents are more or less the same, depending on what's on TV in the background. There's sometimes a mention of "Don't know where your Dad is...", but that's becoming less, as is the, "I'll be going home soon...", which makes things easier for my wife, but the fact she's lost her Dad and her Mum's not all there must be difficult in itself.

I hope those others who'd posted in similar circumstances (being abroad from folks) have managed to progress favourably, too.

[thenortherner]

I didn't want to cross-post or set up a duplicate thread, but would be massively grateful for anyone's input into a thread I've started in the Finance forum:

https://www.pistonheads.com/gassing/topic.asp?h=0&...

I'm at a loss with what's best to do with my mum who has dementia and the financial situation concerning her care.

Thanks.

[Grandad Gaz]

[quote=TooMany2cvs

.........So - how's everybody else's demented relatives?
[/quote]

Not all that good I'm afraid.

My mum has had vascular dementia for a few years now. It has been getting gradually worse over the last year.
She still lives at home with my dad, who is himself very frail. Up until Christmas we were meeting up with them in town once a week for a coffee either on a Saturday or Sunday and things were relatively normal.
I had absolutely no idea until recently that he was getting her washed and dressed himself!
He has refused help from carers in the past. He always said he was managing.

It all came to a head a couple of days after Christmas when she had a fall and broke her arthritic hip. Doctors had no choice but to operate and give her a new hip.

Unfortunately, this had made her dementia ten times worse! She was not able to leave hospital until a care package was in place. So, carers come in four times a day, but even with this, my dad cannot cope with it any longer.

She has no idea where she is or what's going on around her. Anything she says makes no sense at all. She cannot be left alone for a minute.
My dad rang me this morning saying he cannot take it anymore.

What happens now?
I have emailed the social worker who arranged the care package when she left hospital and also the local care home, which will be self funded until her money runs out.

ETA, just had a call back from the care home. They can take her in almost immediately.

[WinstonWolf]

Grandad Gaz said:

TooMany2cvs said:

.........So - how's everybody else's demented relatives?

Not all that good I'm afraid.

My mum has had vascular dementia for a few years now. It has been getting gradually worse over the last year.
She still lives at home with my dad, who is himself very frail. Up until Christmas we were meeting up with them in town once a week for a coffee either on a Saturday or Sunday and things were relatively normal.
I had absolutely no idea until recently that he was getting her washed and dressed himself!
He has refused help from carers in the past. He always said he was managing.

It all came to a head a couple of days after Christmas when she had a fall and broke her arthritic hip. Doctors had no choice but to operate and give her a new hip.

Unfortunately, this had made her dementia ten times worse! She was not able to leave hospital until a care package was in place. So, carers come in four times a day, but even with this, my dad cannot cope with it any longer.

She has no idea where she is or what's going on around her. Anything she says makes no sense at all. She cannot be left alone for a minute.
My dad rang me this morning saying he cannot take it anymore.

What happens now?
I have emailed the social worker who arranged the care package when she left hospital and also the local care home, which will be self funded until her money runs out.

ETA, just had a call back from the care home. They can take her in almost immediately.

In her condition she *may* qualify for funding based on medical need. I'd certainly be asking for assistance. Some homes are very good at handling the funding application on your behalf as it can be a bit of a minefield.

[RC1807]

Grandad Gaz: I'm very sorry to read this, Your Dad has dealt with an awful lot, and it must have been very hard for him to admit he can't cope any longer, especially as I guess they will have been together for many years.

When I look back at the start of this thread (Apr 2017), I was voicing concerns over my inlaws following an Easter visit to the UK, and by June it really changed. However, I'm eternally grateful to all the PHers who gave support, comments and advice for my wife and I to work through the minefield of hospitals, social services, care homes and nursing homes.

PHers are, for the greater part, an amazing community of knowledge and information.
Thank you all!

WinstonWolf said:

In her condition she *may* qualify for funding based on medical need. I'd certainly be asking for assistance. Some homes are very good at handling the funding application on your behalf as it can be a bit of a minefield.

From memory, care / nursing homes are very helpful to work on the funding applications, well, because it's in their interests to do so, too. Certainly those who are more familiar with the content fo the forms are also best as these things can be confusing, and we found form filling and approvals for things took some time in Hampshire.

Best of luck.

[Grandad Gaz]

RC1807 said:

Grandad Gaz: I'm very sorry to read this, Your Dad has dealt with an awful lot, and it must have been very hard for him to admit he can't cope any longer, especially as I guess they will have been together for many years.

When I look back at the start of this thread (Apr 2017), I was voicing concerns over my inlaws following an Easter visit to the UK, and by June it really changed. However, I'm eternally grateful to all the PHers who gave support, comments and advice for my wife and I to work through the minefield of hospitals, social services, care homes and nursing homes.

PHers are, for the greater part, an amazing community of knowledge and information.
Thank you all!

WinstonWolf said:

In her condition she *may* qualify for funding based on medical need. I'd certainly be asking for assistance. Some homes are very good at handling the funding application on your behalf as it can be a bit of a minefield.

From memory, care / nursing homes are very helpful to work on the funding applications, well, because it's in their interests to do so, too. Certainly those who are more familiar with the content fo the forms are also best as these things can be confusing, and we found form filling and approvals for things took some time in Hampshire.

Best of luck.

Thanks for the encouragement folks!
My mum is going into care tomorrow. We visited the home this morning, they came out to assess her this afternoon and we are taking her in the afternoon. It will be difficult for her, we know that. We just hope she can settle in.

Main reason for choosing this particular home, it's very close to where my parents live, which will make it pretty easy for my dad to get to for visiting.

You are quite right about the care home helping with the funding application. They know exactly how to fill in the necessary forms.

Thanks again all

[Mexican cuties]

thanks for all the updates especially rc107, read your thread from start to finish, helped us so much when 2 years ago everything changed for us. 2 years on, house funds are going down, looking to start looking into options and what we are entitled to when the funds reach that critical limit, if nothing happens to the mil inbetween.

has anyone had to deal with this stage of dementia care when the funds are low

many thanks

[RC1807]

Mexican cuties said:

...
has anyone had to deal with this stage of dementia care when the funds are low

many thanks

Hi
I guess this is where a conversation needs to happen with the local social services / authority, to see if the care can be maintained at their cost once the funds have, sadly, all gone?
My wife's gran didn't have anything moneywise when she went into local council care, but MIL and her sister, back then, pushed the local authority to ensure she went to a good home in their hometown, of which there were only 2 to choose from.
Being in care is tough enough, but moving an elderly person once they're settled in a home can become very difficult for them.
Best wishes.

[RC1807]

Mrs RC1807 visited her Mum this week, together with our daughters. It was meant to be a bit of a special trip as MIL turned 80 on Tuesday. I wasn't able to join as I had a business trip on another continent.

However, after some recent medical issues, MIL was only returned to her nursing home on Monday from Royal Bournemouth Hospital, after about 9 days there. Fortunately my wife was on hand to move her.

It proved a very difficult visit for my wife and daughters. MIL not really interacting much, nothing to say, and for her granddaughters, none of the usual almost crushing hugs and big kisses they used to get from Grandma, but very little recognition at all. That was quite tough for them, I think, even though they're older teens.

Whilst MIL was still in hospital, it gave my 3 ladies a chance to sort out MIL's nursing home room, with many unexplained items being stashed, and the top of the wardrobes being used as a bin, which wasn't evident from the floor as the wardrobes have a cornice attached .... All kinds of stuff "binned" up there!

Physically she's fine. Mental capacity, however, now seems really reduced. No crosswords, reading or puzzles for her now. She used to be a demon on her Daily Telegraph crossword! The careers make sure she gets out of her room to join their extensive daily activities they organise.

We expect tougher times ahead, of course, and my wife's staying in touch with the home to see how her Mum is every couple of days, just to see if the recent behaviour was down to her having been in hospital. Who knows.

Best wishes to all.

[RC1807]

Our current fear is that MIL had a fall due to a stroke, which lead to her hospital stay (mobile issues - wanted her checked out for any fractures). Since her return to the home she continues to have some mobility issues and says her food and drink tastes odd, so she's not drinking / eating much.

My wife's made it clear she doesn't want her Mum sent back to hospital, and that the nurses at the nursing home are to try with the carers to find food / drink she will have so she can stay there as long as possible.

Her mental capacity, as I said last week, has deteriorated significantly, and realisation of what's to come set in as my FIL went the same way, quickly.

Edited by RC1807 on Sunday 21st April 11:08

[Grandad Gaz]

RC1807 said:

Our current fear is that MIL had a fall due to a stroke, which lead to her hospital stay (mobile issues - wanted her checked out for any fractures). Since her return to the home she continues to have some mobility issues and says her food and drink tastes odd, so she's not drinking / eating much.

My wife's made it clear she doesn't want her Mum sent back to hospital, and that the nurses at the nursing home are to try with the carers to find food / drink she will have so she can stay there as long as possible.

Her mental capacity, as I said last week, has deteriorated significantly, and realisation of what's to come set in as my FIL went the same way, quickly.

Edited by RC1807 on Sunday 21st April 11:08

My mum was back in hospital a couple of weeks ago with low sodium levels. They just monitored her for 5 days. Her stay there did nothing but make her condition worse. She had no idea where she was or what was going on. It's like taking a puppy to the vets, leaving it there for five days while the vet sticks needles in it three times a day, because that's where my mums mental state currently is.

I have power of attorney, so unless it's life threatening, then she stays at the home.

[wisbech]

In my father’s case - he went into hospital for a silly thing (choking on false teeth) and caught a bug there. Family consensus (especially my mother ) was to tell the doctors to prioritise other patients... he died peacefully surrounded by family. Yeah, we could have kept him alive longer with aggressive medicine but I am thankful the doctors agreed not too.