Dementia

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Discussion

QuartzDad

2,259 posts

123 months

Wednesday 28th July 2021
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worsy said:
An update.
My mother has been prescribed Rivastigmine for the last few months, really has made a difference. Worth checking out IMO.

worsy

Original Poster:

5,812 posts

176 months

Wednesday 28th July 2021
quotequote all
QuartzDad said:
worsy said:
An update.
My mother has been prescribed Rivastigmine for the last few months, really has made a difference. Worth checking out IMO.
I think this is the meds she can't have due to Epilepsy.

2172cc

1,112 posts

98 months

Thursday 29th July 2021
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dirky dirk said:
mike74 said:
I've got a feeling my mother is highly likely to develop Dementia in the coming years, the trouble is I'm genuinely not sure how I'll be able to tell given that her 'normal' personality already ticks all the boxes for initial Dementia symptoms.. stubborn, awkward, ill mannered, impatient, unsociable, aloof, opinionated, absent minded etc

Edited by mike74 on Monday 26th July 08:46
is that a sign that thy will?

youve just described my 87 yer old mum
And mine too.....

BobToc

1,776 posts

118 months

Thursday 29th July 2021
quotequote all
worsy said:
Turns out FiL has been doing everything including having to dress her etc. He is knackered. So wife will be attending a bit more often and trying to give him a break. Also looking to see what help is available through the council.
Everyone’s situation is different, but my dad went through something similar with mum. Up all hours trying to deal with her confused state, temper, mind-numbing conversation. We managed to get help from the council to come around every day and help with cleaning her, which was a help, but the toll was still heavy.

It all came to a head when she fell and couldn’t or wouldn’t get up again. Dad had to go across the road and get a neighbour to help him. She ended up transferring into a home. Terrible guilt on my dad’s shoulders but I think after a few weeks he came to terms with it. She’s more settled and content while he’s not absolutely exhausted all the time. A think he’s a changed person now.

I wish we’d done it earlier but I can’t change the past. I suspect it takes a moment of crisis to finally convince a lot of people to relocate a loved one to a home. I know the stories about awful awful homes, but for mum it was the right thing to do.

worsy

Original Poster:

5,812 posts

176 months

Tuesday 3rd August 2021
quotequote all
BobToc said:
worsy said:
Turns out FiL has been doing everything including having to dress her etc. He is knackered. So wife will be attending a bit more often and trying to give him a break. Also looking to see what help is available through the council.
Everyone’s situation is different, but my dad went through something similar with mum. Up all hours trying to deal with her confused state, temper, mind-numbing conversation. We managed to get help from the council to come around every day and help with cleaning her, which was a help, but the toll was still heavy.

It all came to a head when she fell and couldn’t or wouldn’t get up again. Dad had to go across the road and get a neighbour to help him. She ended up transferring into a home. Terrible guilt on my dad’s shoulders but I think after a few weeks he came to terms with it. She’s more settled and content while he’s not absolutely exhausted all the time. A think he’s a changed person now.

I wish we’d done it earlier but I can’t change the past. I suspect it takes a moment of crisis to finally convince a lot of people to relocate a loved one to a home. I know the stories about awful awful homes, but for mum it was the right thing to do.
This seems to be where it is going. MiL discharged to local hospital for rehab. Seems like when she is drinking it goes down the wrong pipe. Doctors have engaged FiL on the DNR question.

Suggestion is unlikely to be going home, so care home is the living option. Wife spoke to her on phone yesterday and she had no idea how to use a phone let alone who her daughter was. Gone downhill very quickly.

Boringvolvodriver

8,994 posts

44 months

Tuesday 3rd August 2021
quotequote all
worsy said:
This seems to be where it is going. MiL discharged to local hospital for rehab. Seems like when she is drinking it goes down the wrong pipe. Doctors have engaged FiL on the DNR question.

Suggestion is unlikely to be going home, so care home is the living option. Wife spoke to her on phone yesterday and she had no idea how to use a phone let alone who her daughter was. Gone downhill very quickly.
Sadly a hospital stay can have this effect. A change of location into unfamiliar surroundings with people they don’t know has an adverse effect.

Happened to my MIL after she fell and broke her hip although she was really struggling before that.

I would try to visit as many care homes as you can to find the right one, even if it means a longer drive to visit. They are not all the same and the ability of the staff varies.

They may say they can cope with dementia but many really can’t and at the first sign of a client becoming more challenging, then they will give notice for them to leave.

My advice would be to get MIL into a more specialist one to start with as dementia sadly, only gets worse and the better homes will minimize that happening.

And also look at the NHS Continuing Care option - it is not an easy process by any means although with some care homes charging £1700 per week for specialist care, personal funds may not last long.

GT3Manthey

4,524 posts

50 months

Wednesday 4th August 2021
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QuartzDad said:
Not a lot I can add except I was going to start a very similar thread. My 75yo Mum revently diagnosed with late onset 'dementia in alzheimer disease' and it's frankly a complete bh.

A strong, numerate, intelligent woman is now unable to complete activities that wouldn't tax a three year old. She is the nicest, kindest person I know and has been married to my Dad for 54 years. This morning she told me with a fair degree of vitriol that on her wedding day her mother told her she was marrying the wrong man and she wishes she'd heeded her advice - all with my Dad sitting next to her. Seeing your 80yo Dad cry for this first time ever is pretty st.

fking disease can fk right off.
Man that’s heartbreaking so sorry

thetapeworm

11,243 posts

240 months

Thursday 5th August 2021
quotequote all
BobToc said:
worsy said:
Turns out FiL has been doing everything including having to dress her etc. He is knackered. So wife will be attending a bit more often and trying to give him a break. Also looking to see what help is available through the council.
Everyone’s situation is different, but my dad went through something similar with mum. Up all hours trying to deal with her confused state, temper, mind-numbing conversation. We managed to get help from the council to come around every day and help with cleaning her, which was a help, but the toll was still heavy.

It all came to a head when she fell and couldn’t or wouldn’t get up again. Dad had to go across the road and get a neighbour to help him. She ended up transferring into a home. Terrible guilt on my dad’s shoulders but I think after a few weeks he came to terms with it. She’s more settled and content while he’s not absolutely exhausted all the time. A think he’s a changed person now.

I wish we’d done it earlier but I can’t change the past. I suspect it takes a moment of crisis to finally convince a lot of people to relocate a loved one to a home. I know the stories about awful awful homes, but for mum it was the right thing to do.
My dad went through similar with my step mum, thankfully my step sister also lived nearby so offered some respite but he essentially packed up everything and became her full time carer. They already struggled with the one bed bungalow but as my step mums COPD worsened and medical equipment was needed to help her breathe he ended up sleeping on a camp bed in the living room.

He did manage to get some respite care on a couple of occasions to get a break but it was heartbreaking to see her decline and the huge impact it had on my dad. It was probably worsened as many of the traits she showed were like those my grandma had, the constant ripping / folding of tissues being the most prevalent.

Homes were looked into but by the time anything could be found she was so ill that it was deemed more sensible to care for her at home and have doctors / nurses daily to provide the stuff my dad couldn't.

When she passed away last year during peak lockdown Motorbility immediately cancelled the insurance on their car so my dad couldn't even use it to get to the funeral, they then left it parked outside his house for over a month. Unfortunately with her gone his physical and mental health has declined too.

It's an awful condition and I wish anyone dealing with it all the best.

David Baddiel's "The Trouble With Dad" is a good watch is you can find it.

https://www.youtube.com/watch?v=741OOIHfbXE

and31

3,047 posts

128 months

Thursday 5th August 2021
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My wonderful dad died in may from mixed dementia and Alzheimer’s ,(pneumonia actually killed him)
He was quite bad for a while,but fortunately we managed to keep him living in his own house until about five weeks from the end.
fking bd disease.
I’m heartbroken.
To compound all this my sister passed away less than two weeks after my dads funeral.
What a st year this has turned out to be.

GT3Manthey

4,524 posts

50 months

Friday 6th August 2021
quotequote all
and31 said:
My wonderful dad died in may from mixed dementia and Alzheimer’s ,(pneumonia actually killed him)
He was quite bad for a while,but fortunately we managed to keep him living in his own house until about five weeks from the end.
fking bd disease.
I’m heartbroken.
To compound all this my sister passed away less than two weeks after my dads funeral.
What a st year this has turned out to be.
Crikey really sorry to hear this especially the passing of your sister too ( assuming no age).

This last year has been awful all round.

Be strong fella

solo2

861 posts

148 months

Friday 6th August 2021
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My Mum was diagnosed years ago and has outlived the prognosis by years. My son was a toddler when she was diagnosed and now he's a strapping 6 foot 4!

She had been violent to my Dad for years backing him the corner of a room with a knife in hand occasionally but recently it got worse. She often called the Police saying there was an intruder in her house but it was Dad. Finally after one bad incident he called 999 as he had no other option and assumed they would just talk her down like before but this time she was whisked off to hospital. Five weeks later she was transferred to a Care Home which was around Easter this year and there she remains not knowing who were are or anything.

It's utterly heart-breaking for us, my Dad is feeling bereaved and struggling to come to terms with it. Just last week after visiting her he said about bringing her home again but it's not safe for him to do so nor does he have the energy for it. Even the verbal assaults are painful without adding in he physical ones. Care home has her on on to one care whilst we await a continuous healthcare assessment to see if they will fully fund her. If they don't I fear my dad will want to bring her home and then I will worry again about him.

I've said this on here before but mum has died, she died a long time ago and now we wait for her body to catch up with her mind and for to actually pass away. It's cruel to say so but I hope it happens soon because she promised up to never put her in a home and that is now where she is frown

RDMcG

19,188 posts

208 months

Friday 6th August 2021
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solo2 said:
I've said this on here before but mum has died, she died a long time ago and now we wait for her body to catch up with her mind and for to actually pass away. It's cruel to say so but I hope it happens soon because she promised up to never put her in a home and that is now where she is frown
This is very true.MiL is 87, was a high-achieving brilliant woman, smart, strong and effective and at 80 was unimpaired. Alzheimer's gradually took hold and is now advanced; recalls only closest people, no sense of time, cannot remember what she had to eat ten minutes after eating it. Is in a very good facility with excellent care but spends long time sleeping. She is not the person she was , so best to remember the whole person and not dwell on what remains.

HustleRussell

24,724 posts

161 months

Friday 6th August 2021
quotequote all
On Saturday we explained to my Mum’s partner that his driving licence has expired, that he wasn’t going to be able to renew it, and that basically his driving days are behind him.

He believes that he uses his car every day and in fact arrived in it that day, when in reality Mum and I have, to the best of our knowledge, managed to keep him from driving since Spring.

Mum wrote a letter to the DVLA months ago asking them to revoke his licence due to his dementia but guess what, the useless fkers didn’t bother doing a thing- so we had to keep him from driving until it expired and then lie to him about the whys and wherefores.

Motability came and took his car away today and we’ve just been through it all again. He forgets obviously so we’re having circular conversations which end with us saying that his licence and car are gone forever but every time’s like the first time for him.

Condolences to previous posters who have recently lost parents and to and31 for his sister. I can’t begin to imagine.

Edited by HustleRussell on Friday 6th August 19:54

and31

3,047 posts

128 months

Friday 6th August 2021
quotequote all
HustleRussell said:
On Saturday we explained to my Mum’s partner that his driving licence has expired, that he wasn’t going to be able to renew it, and that basically his driving days are behind him.

He believes that he uses his car every day and in fact arrived in it that day, when in reality Mum and I have, to the best of our knowledge, managed to keep him from driving since Spring.

Mum wrote a letter to the DVLA months ago asking them to revoke his licence due to his dementia but guess what, the useless fkers didn’t bother doing a thing- so we had to keep him from driving until it expired and then lie to him about the whys and wherefores.

Motability came and took his car away today and we’ve just been through it all again. He forgets obviously so we’re having circular conversations which end with us saying that his licence and car are gone forever but every time’s like the first time for him.

Condolences to previous posters who have recently lost parents and to and31 for his sister. I can’t begin to imagine.

Edited by HustleRussell on Friday 6th August 19:54
Exactly the same with my dad and his licence-it was a nightmare trying to get it revoked.He had a bloody XJR,and an absolutely lovely 1950’s 650cc Triumph Thunderbird that he adored.
And he always blamed me for him being unable to drive afterwards.In fact he was very angry about it.
And I will always feel bad about it-I know it was the right thing to do,but very sad all the same.
This was the man that positively encouraged me to drive one of his artics across a potato field when I was about nine years old,and always told me where my mum had hidden the keys to their latest hot hatch when they went on holiday hahahahaha.
I really thought I was ready for him to go ,as he had deteriorated so much,but fk me was I wrong.word of advice for anyone going through this now,make the most of the little bits of laughter and happiness they have-and there will be some(even when things were really bad with my father,we both managed to laugh at times-it helped that we have both always been able to see the funny side of everything.).he’s in a better place now but I’d give anything to be able to go to his house and watch afternoon telly with him now -even though he wasn’t really taking it in.
The lockdown did him no favours at all(same for most people obviously),but before that he was at least able to get on a bus to town and have a pint or two with some of his old friends.luckily the bus drivers all knew him and would tell him when he needed to get off at the stop outside his house!
Eventually I had to take control of his finances,as he liked to go to the bank and draw out several hundred pounds,several times a day ffs!
The day he went into his bank with a massive crocodile Dundee knife and put it on the counter saying he wanted some fking money was one that we’ll never forget!!!



Edited by and31 on Friday 6th August 23:00


Edited by and31 on Friday 6th August 23:03

GT3Manthey

4,524 posts

50 months

Saturday 7th August 2021
quotequote all
and31 said:
Exactly the same with my dad and his licence-it was a nightmare trying to get it revoked.He had a bloody XJR,and an absolutely lovely 1950’s 650cc Triumph Thunderbird that he adored.
And he always blamed me for him being unable to drive afterwards.In fact he was very angry about it.
And I will always feel bad about it-I know it was the right thing to do,but very sad all the same.
This was the man that positively encouraged me to drive one of his artics across a potato field when I was about nine years old,and always told me where my mum had hidden the keys to their latest hot hatch when they went on holiday hahahahaha.
I really thought I was ready for him to go ,as he had deteriorated so much,but fk me was I wrong.word of advice for anyone going through this now,make the most of the little bits of laughter and happiness they have-and there will be some(even when things were really bad with my father,we both managed to laugh at times-it helped that we have both always been able to see the funny side of everything.).he’s in a better place now but I’d give anything to be able to go to his house and watch afternoon telly with him now -even though he wasn’t really taking it in.
The lockdown did him no favours at all(same for most people obviously),but before that he was at least able to get on a bus to town and have a pint or two with some of his old friends.luckily the bus drivers all knew him and would tell him when he needed to get off at the stop outside his house!
Eventually I had to take control of his finances,as he liked to go to the bank and draw out several hundred pounds,several times a day ffs!
The day he went into his bank with a massive crocodile Dundee knife and put it on the counter saying he wanted some fking money was one that we’ll never forget!!!



Edited by and31 on Friday 6th August 23:00


Edited by and31 on Friday 6th August 23:03
So sorry for your loss.

Have to say I’d love to have seen the cashiers face on the day he turned up with the knife ! :-)

He sounds like a real legend of a father . The kind we can all only hope to be

worsy

Original Poster:

5,812 posts

176 months

Saturday 7th August 2021
quotequote all
Boringvolvodriver said:
worsy said:
This seems to be where it is going. MiL discharged to local hospital for rehab. Seems like when she is drinking it goes down the wrong pipe. Doctors have engaged FiL on the DNR question.

Suggestion is unlikely to be going home, so care home is the living option. Wife spoke to her on phone yesterday and she had no idea how to use a phone let alone who her daughter was. Gone downhill very quickly.
Sadly a hospital stay can have this effect. A change of location into unfamiliar surroundings with people they don’t know has an adverse effect.

Happened to my MIL after she fell and broke her hip although she was really struggling before that.

I would try to visit as many care homes as you can to find the right one, even if it means a longer drive to visit. They are not all the same and the ability of the staff varies.

They may say they can cope with dementia but many really can’t and at the first sign of a client becoming more challenging, then they will give notice for them to leave.

My advice would be to get MIL into a more specialist one to start with as dementia sadly, only gets worse and the better homes will minimize that happening.

And also look at the NHS Continuing Care option - it is not an easy process by any means although with some care homes charging £1700 per week for specialist care, personal funds may not last long.
Update - Doctor has suggested she is high risk and that she needs a care home. However the process is that she will be discharged home with 4x a day carers because straight to care home is not the done thing unless situation dire.

Occ Health have visited the in laws bungalow to check it is ok and have come up with a few suggested changes, one of which involves getting rid of their stressless couches for high back chairs. This has upset the FiL who is adamant that they are not being replaced.

We then find out he was abusive to the staff and yesterday called my wife twice thinking she had called him. We are now naturally beginning to worry about him as well.

My Dad died at 56, twenty years ago and I'm beginning to be thankful I didn't have to go through this with him.

2172cc

1,112 posts

98 months

Saturday 7th August 2021
quotequote all
It's really comforting to hear other people's experiences on how they deal or not with this horrible disease. I puts my situation into some sort of perspective. I've learnt a lot from reading the replies and even though there's not a lot I can do to make it better at least it's helped in understanding in some small way.

Boringvolvodriver

8,994 posts

44 months

Sunday 8th August 2021
quotequote all
worsy said:
Update - Doctor has suggested she is high risk and that she needs a care home. However the process is that she will be discharged home with 4x a day carers because straight to care home is not the done thing unless situation dire.

Occ Health have visited the in laws bungalow to check it is ok and have come up with a few suggested changes, one of which involves getting rid of their stressless couches for high back chairs. This has upset the FiL who is adamant that they are not being replaced.

We then find out he was abusive to the staff and yesterday called my wife twice thinking she had called him. We are now naturally beginning to worry about him as well.

My Dad died at 56, twenty years ago and I'm beginning to be thankful I didn't have to go through this with him.
Sorry to hear this update. My MIL went straight to a care home although she was living on her own and she had been having carers in every day for some time before so possibly different.

The thing to remember is that none of the services are joined up and whilst you and I would think that social services would talk to other people such as the council, they won’t!

My parents died of cancer at 62 and 68 after short illnesses and whilst far too young, I often say to my sister that it was preferable to seeing what my wife is going through with her mum. She has been in care for 3 years and has no idea who her family are, is double incontinent, can’t feed herself or put any words together that make sense. It is tragic.

and31

3,047 posts

128 months

Sunday 8th August 2021
quotequote all
Boringvolvodriver said:
Sorry to hear this update. My MIL went straight to a care home although she was living on her own and she had been having carers in every day for some time before so possibly different.

The thing to remember is that none of the services are joined up and whilst you and I would think that social services would talk to other people such as the council, they won’t!

My parents died of cancer at 62 and 68 after short illnesses and whilst far too young, I often say to my sister that it was preferable to seeing what my wife is going through with her mum. She has been in care for 3 years and has no idea who her family are, is double incontinent, can’t feed herself or put any words together that make sense. It is tragic.
That must be so hard for your wife.
Only consulaltion is that her mum doesn’t know that she’s the way she is.it’s when they have a moment of lucidity that makes it even harder-my father was taken into a NHS facility to be assessed,with a view to going into a care home,unfortunately in a pandemic.he had to quarantine,was then admitted to hospital,then had to quarantine yet again,so it was three long weeks until I could visit him.I spoke to him on the phone,his exact words were”if you don’t get me out,I’m going to die here..”
When I eventually was allowed to see him,he didn’t recognise me at all-not even a flicker.that’s hard for me to deal with.three weeks later he had indeed died there.
Four months ago now,and it seems like yesterday.I had to go and collect his personal items after he passed away,amongst them were the bags of liquorice allsorts I’d bought him-(he’s favourite sweets)all untouched.he’d got that bad he couldn’t even eat them.I don’t know how I made the journey home.
I’m sure if enough money was thrown at this terrible disease,great progress would be made.

Boringvolvodriver

8,994 posts

44 months

Sunday 8th August 2021
quotequote all
and31 said:
That must be so hard for your wife.
Only consulaltion is that her mum doesn’t know that she’s the way she is.it’s when they have a moment of lucidity that makes it even harder-my father was taken into a NHS facility to be assessed,with a view to going into a care home,unfortunately in a pandemic.he had to quarantine,was then admitted to hospital,then had to quarantine yet again,so it was three long weeks until I could visit him.I spoke to him on the phone,his exact words were”if you don’t get me out,I’m going to die here..”
When I eventually was allowed to see him,he didn’t recognise me at all-not even a flicker.that’s hard for me to deal with.three weeks later he had indeed died there.
Four months ago now,and it seems like yesterday.I had to go and collect his personal items after he passed away,amongst them were the bags of liquorice allsorts I’d bought him-(he’s favourite sweets)all untouched.he’d got that bad he couldn’t even eat them.I don’t know how I made the journey home.
I’m sure if enough money was thrown at this terrible disease,great progress would be made.
I feel for you - it is terrible time at the best/worst of times but the bloody rules in visiting were in humane to say they least. I would personally prosecute those that decided that people were unable to visit relatives in care homes and hospitals for human rights crimes.

My wife couldn’t visit for 6 months……….so wrong.

MIL is aggressive with it all, demented and clearly troubled with it all which makes it even harder. Especially since when she was of sound mind she said, on visiting a care home” if ever I get like that, , give me something and just tell me they are smarties”