Dementia

[Mungler]

I know the PW massive is the font of all knowledge.

We are now, with the mother in law, where so many have been before.

We’ve done the care line, the trackers, cameras, PIR door reminders and so on but the old girl keeps going out at all hours, with not enough warm clothing, no bag, no keys and having ditched her care line monitor etc. She’s made the local Facebook group a number of times photo’d queuing for the local shop to open at 4 am and in her sparkly dress and odd shoes on.

Today she was out at 5 am, the care lined phoned us (we get notified if the front door opens before 7 am) and we had a look on the cameras - if she wanted to potter to the newsagents, no problem etc. and between the cameras and the trackers we should be able to keep an eye on her remotely. We are 5 miles away.

But no, she went to the end of the driveway, clearly forgot what she was doing / where she was going and then tried to get back in to her house but of course had no keys and now can’t remember the code for the key safe by the front door. The neighbours are good and have keys but once let back in by them she’s now reliant on them and her preferred method of getting back in at home is knocking the neighbours up. Obviously it can’t go on because their willingness to help can’t reasonably be expected to cover 5.45 am pointless in and out calls. 

We have an official dementia diagnosis and have dealt with social services - they will do anything to keep her in her home but there’s a game being played - it’s fine I get it. The old girl can put on a good show for 10 minutes in front of any health visitor and when ‘invited’ to engage in any process the old girl refuses and social services then say ‘well if she won’t engage we’re out’.

The concern now is that with cold and bad weather she’s going to go over on the ice or freeze having locked herself out. She’s not eating or drinking regularly or taking her meds despite electronic kit, reminders and a full fridge. 

We’ve tried carers but because the old girl is fit as a fiddle, she’s off and walking and wandering at all hours and when they come she often not there. The high street is a mile away and she walks there and back at least twice a day and can clock up 4-5 miles a day. Despite losing weight and becoming more frail before our eyes, she’s physically fit. She’s in her late 80’s and family history has everyone on her side going to their late 90’s.

It’s care home time but she will fight and she’s not that bad to go on a dementia ward - I’ve seen what they are like and how far gone others are.

Any ideas what to do next? We have LPAs activated and registered.

Its weird. Her memory is going backwards and she is living in 40-50 years ago, often demanding to go back to London and her telephony job. Today she has lost her purse which she thought was upstairs; she’s lived in a bungalow for just over 30 years. We are our brains, right?
.

Edited November 7 by Mungler

[steve_b_wales]

16 minutes ago, Mungler said:

I know the PW massive is the font of all knowledge.

We are now, with the mother in law, where so many have been before.

We’ve done the care line, the trackers, cameras, PIR door reminders and so on but the old girl keeps going out at all hours, with not enough warm clothing, no bag, no keys and having ditched her care line monitor etc. She’s made the local Facebook group a number of times photo’d queuing for the local shop to open at 4 am and in her sparkly dress and odd shoes on.

Today she was out at 5 am, the care lined phoned us (we get notified if the front door opens before 7 am) and we had a look on the cameras - if she wanted to potter to the newsagents, no problem etc. and between the cameras and the trackers we should be able to keep an eye on her remotely. We are 5 miles away.

But no, she went to the end of the driveway, clearly forgot what she was doing / where she was going and then tried to get back in to her house but of course had no keys and now can’t remember the code for the key safe by the front door. The neighbours are good and have keys but once let back in by them she’s now reliant on them and her preferred method of getting back in at home is knocking the neighbours up. Obviously it can’t go on because their willingness to help can’t reasonably be expected to cover 5.45 am pointless in and out calls. 

We have an official dementia diagnosis and have dealt with social services - they will do anything to keep her in her home but there’s a game being played - it’s fine I get it. The old girl can put on a good show for 10 minutes in front of any health visitor and when ‘invited’ to engage in any process the old girl refuses and social services then say ‘well if she won’t engage we’re out’.

The concern now is that with cold and bad weather she’s going to go over on the ice or freeze having locked herself out. She’s not eating or drinking regularly or taking her meds despite electronic kit, reminders and a full fridge. 

We’ve tried carers but because the old girl is fit as a fiddle, she’s off and walking and wandering at all hours and when they come she often not there. The high street is a mile away and she walks there and back at least twice a day and can clock up 4-5 miles a day. Despite losing weight and becoming more frail before our eyes, she’s physically fit. She’s in her late 80’s and family history has everyone on her side going to their late 90’s.

It’s care home time but she will fight and she’s not that bad to go on a dementia ward - I’ve seen what they are like and how far gone others are.

Any ideas what to do next? We have LPAs activated and registered.

Its weird. Her memory is going backwards and she is living in 40-50 years ago, often demanding to go back to London and her telephony job. Today she has lost her purse which she thought was upstairs; she’s lived in a bungalow for just over 30 years. We are our brains, right?
.

It's a sad world when this happens. My grandmother developed dementia and my mother did her very best to take care of her. But, sadly, the time came when my gran became a danger to herself, and she had to go into a care home. Only there a few weeks and then she passed away. Looking back at some of the things my gran said and did, brings back a smile and sadness. She would 'chat to the cushions' on her settee, asking her 'friends' if they would like a cup of tea. She also thought that my grandfather was 'living' upstairs (he died many years before her onset of dementia) as she could 'hear him calling her'. The stairs were blocked off to stop her going up there. There is no definitive answer to be honest, but I wish you all the very best.

[Mungler]

11 minutes ago, steve_b_wales said:

It's a sad world when this happens. My grandmother developed dementia and my mother did her very best to take care of her. But, sadly, the time came when my gran became a danger to herself, and she had to go into a care home. Only there a few weeks and then she passed away. Looking back at some of the things my gran said and did, brings back a smile and sadness. She would 'chat to the cushions' on her settee, asking her 'friends' if they would like a cup of tea. She also thought that my grandfather was 'living' upstairs (he died many years before her onset of dementia) as she could 'hear him calling her'. The stairs were blocked off to stop her going up there. There is no definitive answer to be honest, but I wish you all the very best.

Thanks for the kind words Steve. We’re resigned that it’s just part of life’s journey now. Not that many years ago, pre statins, booze and fags saw everyone check out in their 70’s and 80’s as bodies gave way, but now it’s the bodies that are lasting and the minds are checking out. 

We’re at home with the journey we’re on and it’s been going on long enough now - it was some time ago we had to get the gas supply to the cooker / oven disconnected for a mini electric oven with a timer that could never be left on for more than 60 minutes at a time. 

Talking to friends who have been down this road, many talk of the drop off to the care home being traumatic (you don’t tell them, they get dropped and you do it and go) but reports appear to be that 9 out of 10 love it after a week or two - company, looked after and fed etc. Here however the MIL is a keen gardener and she’s out there everyday. The loss of the garden, her fitness and a pre-existing stubborn streak a mile wide will mean the care home route is going to be uphill and a battle to come.
.

Edited November 7 by Mungler

[Old farrier]

A very difficult task for you to accomplish 

is there a possibility of a live in caregiver possibly a family member or even you and your wife 

or family member who may have enough room to accommodate her 

this may break the garden habit and semi prepare her for a care home 

very difficult time for you hopefully you can get a solution 

all the best 

of 

[enfieldspares]

I am sorry to hear that. The twilight years can be cruel. My late mother was the exact opposite. Bright as a pin until the last she'd do her crossword each day with her gardener and was alert and mentally capable until the last. Alas it was the body that failed. She found it hard, painful to walk, and her eyesight began to fail through macular degeneration. All of which of course she was fully aware of. But at least she was able to stay in her own house.

In her nineties (she died at ninety-four) I asked her if she wanted to get her telegram from the Queen. To which the reply was "No, I just want to die. I can't see, I can't walk, I keep falling over, my body is worn out". She finally fell on a Monday, into hospital the same day and died two days later on the Wednesday aged ninety-four. She had, as she said "been given Bert's years to live for him that he never had".

Bert being her first husband who was killed in March 1944 aged thirty. So at least she had that. Married at age twenty-one and a War Widow at age twenty-three.

The two that endure for me are that of "living Bert's years" and her verdict on the woman Ann Widdecombe and her then frequent television appearances dispensing instruction to others on how Ann Widdecombe thought they ought to conduct themselves. It was this "I was married at twenty-one and a War Widow at twenty -three. Ann Widdecombe? Anyone who takes lessons in life from a sixty-five year old virgin is a fool". 

So celebrate your mother's good physical health but you have my sympathy and sadness for her mental decline. The twilight years can indeed be cruel. But don't regret the difficulties but instead cherish the memories because one day when she's gone that's all that you will have. And then celebrate her passing that she has finally found rest from those difficulties.

[Mungler]

This is another problem. Most people assume a deep loving relationship between parent and child, because that’s been their life and family background, but that’s not the case here and there’s so much history I can’t even begin to describe. 

My wife is the only person in the MIL’s life - no other family talking to her and no friends - noting no one ends up anywhere in life with zero friends for no reason.

The wife is hanging on in there by her fingernails and notwithstanding that MIL spent most of her life being deeply unpleasant to my wife and an all round difficult woman. It’s still her mother (etc) and the wife is made of steel and has an old fashioned sense of duty and so we keep going but if it were me, I’d have cut her off years ago. 

Mother in law has no money and so I know I’m on the hook for care home costs if there’s no state route - it’s not the end of the world for me. Indeed, I’d happily write the cheques to get my wife back as brutal as that may sound.

 

[Scully]

I know it’s not ideal, but would anyone in the family be able and willing to move in with her? A mate gave up his job to become a full time carer for his parents, so it is doable, I just don’t know the financial aspect or logistics of it all. 
Funding from those family members who don’t want to see her in a care home but don’t want or can’t move in with her? 🤷‍♂️

The downside is this, or variations of this……..OH’s Dad is in palliative care with dementia and a brain tumour, literally next door. He is totally lucid, knows who everyone is, can hold a decent conversation most of the time, but is now fortunately ( for us ) bedridden as prior to that we had the 3am calls of ‘man down’ with bleeding head etc etc. We got trained how to use the hoist and ‘elk’ supplied for such events, but now he’s bedridden jemmying off the hinges of the toilet door to get him out is no longer an issue! Why the **** did you close the door John, nevermind lock it?!!

Anyhow, Hospice at home carers are present 3 times a day, plus others, plus a bit of respite for the MIL, because the  downside to all this is the toll it takes on those having to do the caring. MIL has it 24 hours a day; we do all we can but it’s that ever present issue that she has which starts to grind. I know because I did it for my Mother, but fortunately she didn’t hang about, bless her. 
This way your MIL gets to stay at home, enjoy her garden, go for accompanied walks etc etc, with the added bonus no one has to worry and the money stays in the family. Just my twopennarth worth. 
Righty oh, scrub the above, have just seen your last post. 

Edited November 7 by Scully

[steve_b_wales]

10 minutes ago, Mungler said:

This is another problem. Most people assume a deep loving relationship between parent and child, because that’s been their life and family background, but that’s not the case here and there’s so much history I can’t even begin to describe. 

My wife is the only person in the MIL’s life - no other family talking to her and no friends - noting no one ends up anywhere in life with zero friends for no reason.

The wife is hanging on in there by her fingernails and notwithstanding that MIL spent most of her life being deeply unpleasant to my wife and an all round difficult woman. It’s still her mother (etc) and the wife is made of steel and has an old fashioned sense of duty and so we keep going but if it were me, I’d have cut her off years ago. 

Mother in law has no money and so I know I’m on the hook for care home costs if there’s no state route - it’s not the end of the world for me. Indeed, I’d happily write the cheques to get my wife back as brutal as that may sound.

 

Does she own her home? 

[marsh man]

Thankfully neither my late wife or my close family had suffered from that terrible illness , but I watched how my late boss went from a very active person and who had very good manners to someone who would swear at anyone and everyone and went constantly downhill in a very short time , the family had deep pockets and could afford full time care and the carers lived beside the house they were in , he  carried on going downhill until he passed away in his late 70s , I remember we had a tenant in one of the estates cottages that had a thatched roof , this ole dear also had a form of dementia but for most of the time she wasn't that bad , then one day I got a call from the office to say there was smoke coming out of her downstairs window , I rushed round thinking she might be on fire only to find her putting paper and kindling on her electric fire that was alight , there was smouldering newspapers and sticks on her carpet and she was lucky she didn't set herself alight , we changed her heating for storage heaters but not long after she ended up going into care .   MM

[enfieldspares]

29 minutes ago, Mungler said:

 

Mother in law has no money and so I know I’m on the hook for care home costs if there’s no state route - it’s not the end of the world for me. Indeed, I’d happily write the cheques to get my wife back as brutal as that may sound.

 

No I don't think you would be. I'd seek early contact with Social Services. We are not "our brother's keeper" nor are we "our mother's keeper". If you mother-in-law owns her house then there will be a call on that. There will not be a call on your assets if you MIL has no legal interest in them. 

[steve_b_wales]

12 minutes ago, enfieldspares said:

No I don't think you would be. I'd seek early contact with Social Services. We are not "our brother's keeper" nor are we "our mother's keeper". If you mother-in-law owns her house then there will be a call on that. There will not be a call on your assets if you MIL has no legal interest in them. 

+1

[Mungler]

50 minutes ago, steve_b_wales said:

Does she own her home? 

Nope.

30 minutes ago, enfieldspares said:

No I don't think you would be. I'd seek early contact with Social Services. We are not "our brother's keeper" nor are we "our mother's keeper". If you mother-in-law owns her house then there will be a call on that. There will not be a call on your assets if you MIL has no legal interest in them. 

It depends on where she ends up with a place / space. If it’s as bad as I think it may be then…

I have clients that run care homes - some I would happily live in tomorrow and others I wouldn’t board my dog in 😆

[Cranfield]

We faced a similar situation with my mother in law. The distances from her to relatives was 35miles +.
Her being alone was the big problem and we had the "wandering" issues, and falls, etc., as well.
Initially my wife and her sister took turns staying 24 hours a day with her , consecutive days.
After a few months this became wearing, to say the least.
We then employed a local agency for a live in carer for some of the days and the sisters reduced their involvement.

The MIL did not want to go into a care home, but sadly deteriorated to the stage that she had no strong will left.
We located a good care home (took some finding) and she went there.
Within 2 months she developed a chest/respiratory condition that necessitated a time in hospital. When she was deemed well enough to leave, the Hospital said she had to go to a Nursing Home, as as she was not well enough to go to a Care Home.
This the NHS arranged and she remained there until her passing.

We paid for the Carers and the Care Home, but the Nursing Home is free under the NHS, no financial contributions need be made.

Some of this may help, but there is no easy, cheap, way of fulfilling this obligation.
(Its also worse if you are the only family member with any money🙄)

 

[ditchman]

Been there seen it got the tee shirt....i rekonise EVERYTHING you report....

There are several different faces of dementia...and all progress differently...your MIL shows excactly the same traits my wife did in the last 2 years of her stay with me ..before she was taken into care...where she was for a year and died suddenly...

Dementia progresses in stages....this current stage will soon change ..and if it changes how my wife changed...prepare yourself ,,it wont be pretty.....she will start to forget who family members are...and she will treat you as a threat...you will be locked out of the house and she will try and poison you...she will poor toilet cleaner into all open jars of marmalde...pickles...etc......she may even (like my wife) creep into your bedroom whilst you are sleeping with a kitchen knife.....

Her stomach will become very twitchy and there on occasions be excrement everywhere.....she will call the police and lie and HOW she will lie and very convincing too...

i looked after my wife 24/7 with no help from anyone...and it broke me phyisically and mentally.........unless you sort it .....it will take you down........

the reason i have replied to your post at length is because ...as i said before i rekonise ALL the traits of your MIL...

there are other forms of dementia which are just purley forgetful and non-threating to the carer....this is the type of dementia the govt likes to report....

im really sorry to be brutal....but this desease if not faced is a family destroyer ...trust me i know...ask me why i know..

Be brave and do what needs to be done...she needs homing now before she slips into the next stage

truly my thoughts and best wishes are for you

simon

[arjimlad]

Sorry to hear this Mungler. If it helps, my wife & I recently moved my FIL up from Hampshire to a care home 3 miles away from us and it has gone very well. Our boys go in to see him regularly as do we, so he has three or four visits a week. He crashed out of his family home after too many falls, the last one could have been a fatal bleed had he not landed on the laceration and compressed the cut with his body weight. 

He is sadly losing his capacity and has trouble remembering who is who and what day it is. His mobility means that he can't wander, as your MIL can, but the home staff have been wonderful with him, and they have a gardening club where residents are encouraged and equipped to look after the lovely gardens as they are able. There is a dementia section upstairs should it come to that but he is not quite at that stage yet. He does however say that he wishes he had made the move a long time ago and could not be in a better place. 

[oowee]

Sorry to hear your situation and also what others have been through a living nightmare. 

It's what many of us dread but it creeps up on you. Short lived is for the better but there is no way out. 

[Red696]

I’ve had several family members lost to this dreadful condition.  
 

In their lucid moments it is a joy to have them return, and in the bad moments it is comfort to know they are not aware how unwell they are..

Remaining at home alone is really not an option, and imo moving to a care setting is best done early as it saves avoidable trauma to MIL and yourselves.  Your wife would lose all of herself if she moves in to provide care, I’ve seen that happen and recovery is long and difficult.

Dementia was described to me as; our memory is a tall bookcase with recent memory on the highest shelf, dementia gets the bookcase rocking and the books at the top fall off never to be replaced whilst the books lower down remain accesible.  Thats why she remembers her earlier years.

Wishing you all well in whatever you decide.

[Mungler]

Thank you for all the replies, all of which resonate, and incredibly so.

My colleague at work has said that if she makes 80 she’s taking up smoking and drinking spirits again to insure against dementia. 

[wymberley]

25 minutes ago, ditchman said:

Be brave and do what needs to be done...she needs homing now before she slips into the next stage

This ^^^

I too have been there several times and on the last occasion apart from my two sons who are some 200 miles away I was the only other family. I was discussing the situation with a lady from the local authority and I had a feeling that she recognised that I was having trouble with this one - Mum. She asked if she could give me some advice. 'Yes, please'. She then explained that in her experience most people get it wrong twice before doing the right thing the third time. This because they think that they will have failed that person and consequently have acted out of guilt instead of what in all probability is best for the 'patient'.

Ditchy has it.

[Vince Green]

Having had experience of this in our family you will probably find (as we did) that Social Services are adverse to anything which involves them actually doing anything that involves effort.

They have cultivated buck passing to an art form and can deflect everything back towards you. Making you feel it's up to you to sort it out, but it's not up to you.

It's their job to sort it out and if your MIL has no money it's up to them to pay

 

[Bobba]

1 hour ago, Vince Green said:

Having had experience of this in our family you will probably find (as we did) that Social Services are adverse to anything which involves them actually doing anything that involves effort.

They have cultivated buck passing to an art form and can deflect everything back towards you. Making you feel it's up to you to sort it out, but it's not up to you.

It's their job to sort it out and if your MIL has no money it's up to them to pay

 

Experienced this with both my mother and mother-in-law. (Both had dementia) Not just social services locally who refused to recognise their responsibilities for their care, but also the dept of works and pensions. And they do not always understand their own rules. So how is Joe Public expected to? It is a difficult experience to deal with and it doesn’t help when they get it wrong.

One example was the DWP suspended MIL’s attendance allowance on the grounds that as social services were funding (part) of her care home costs she couldn’t have two sources of allowances from public funds. I pointed out that as she had a flat I had agreed with social services finance to place a charge on the property so that when she died we’d sell it and pay them back. Meanwhile we let the flat to help pay for her care costs. So I said to the DWP, when we pay back to social services the care home costs it means that she would not have received two sources of allowance from public funds. Therefore would they confirm that they would then refund the Attendance Allowance they had suspended. Did they reply. No. They didn’t understand the question. I sent reminders. No response. So I identified and wrote to the Minister for the DWP and asked that as his staff are refusing to answer my question would he now do so?

abracadabra. A letter on blue headed paper with a real ink signature and an apology from a DWP senior staff member. All suspended funds refunded. But it should have been unnecessary if only his staff knew their own rules.

Edited November 7 by Bobba

[yates]

5 hours ago, Mungler said:

I know the PW massive is the font of all knowledge.

We are now, with the mother in law, where so many have been before.

We’ve done the care line, the trackers, cameras, PIR door reminders and so on but the old girl keeps going out at all hours, with not enough warm clothing, no bag, no keys and having ditched her care line monitor etc. She’s made the local Facebook group a number of times photo’d queuing for the local shop to open at 4 am and in her sparkly dress and odd shoes on.

Today she was out at 5 am, the care lined phoned us (we get notified if the front door opens before 7 am) and we had a look on the cameras - if she wanted to potter to the newsagents, no problem etc. and between the cameras and the trackers we should be able to keep an eye on her remotely. We are 5 miles away.

But no, she went to the end of the driveway, clearly forgot what she was doing / where she was going and then tried to get back in to her house but of course had no keys and now can’t remember the code for the key safe by the front door. The neighbours are good and have keys but once let back in by them she’s now reliant on them and her preferred method of getting back in at home is knocking the neighbours up. Obviously it can’t go on because their willingness to help can’t reasonably be expected to cover 5.45 am pointless in and out calls. 

We have an official dementia diagnosis and have dealt with social services - they will do anything to keep her in her home but there’s a game being played - it’s fine I get it. The old girl can put on a good show for 10 minutes in front of any health visitor and when ‘invited’ to engage in any process the old girl refuses and social services then say ‘well if she won’t engage we’re out’.

The concern now is that with cold and bad weather she’s going to go over on the ice or freeze having locked herself out. She’s not eating or drinking regularly or taking her meds despite electronic kit, reminders and a full fridge. 

We’ve tried carers but because the old girl is fit as a fiddle, she’s off and walking and wandering at all hours and when they come she often not there. The high street is a mile away and she walks there and back at least twice a day and can clock up 4-5 miles a day. Despite losing weight and becoming more frail before our eyes, she’s physically fit. She’s in her late 80’s and family history has everyone on her side going to their late 90’s.

It’s care home time but she will fight and she’s not that bad to go on a dementia ward - I’ve seen what they are like and how far gone others are.

Any ideas what to do next? We have LPAs activated and registered.

Its weird. Her memory is going backwards and she is living in 40-50 years ago, often demanding to go back to London and her telephony job. Today she has lost her purse which she thought was upstairs; she’s lived in a bungalow for just over 30 years. We are our brains, right?
.

Sorry to hear this. Whilst she is still living in her own home you should look at something called 'The Herbert Protocol'.  This is something that you put in place in conjunction with police and other agencies etc for when a vulnerable person goes missing. My brother in law who suffered from dementia went missing overnight and was located because the Protocol had been activated. A member of the public heard of his disappearance on the local radio and was able to alert the police

Has she been assessed as to whether she has mental capacity?

[Aled]

So sorry to hear of peoples experiences with relatives and dementia. I do have some experience in this field, having worked as a Care Assistant in a home as a student. It was far more physically and mentally exhausting than the building site or factory floor.  I would like to take a positive out of this, once again the PW freely shares experience, and knowledge to help a person out. That's very much to everybody's credit. Well done guys, and wishing all the best to people who have suffered difficulties and are still doing so. 

Aled

[shaun4860]

Luckily our family have no experience of this but sisters MIL ended up in a dementia home.

Wasn’t that bad by all accounts but they will all differ.

I had one late friend that went through it when his mother contracted Alzheimer’s aged 50.

She ended up in a home/hospital and he used to visit regularly. Dr eventually advised him to stop visiting as she didn’t know who he was and is causing him distress. He said just get on with your life she is in the best place possible, hard as it was that’s what he did.

Horrible disease 

[stoggieman]

Nursed my wife the best I could for the last few years of her life with this terrible illness . She was late 60_70 years old Had to go into a home towards the latter end due to the fact that I am disabled .The poor girl only lived for a few months but I was aware that she was being looked after. Unfortunatly corvid struck the home and I could not visit. I would like to think that she got the best care at the end of her life.