Discussion
So many sad stories on this thread, so I'll wish everyone all the best. 
My MIL had it in the mid-2000s and had to be moved into a home because she couldn't cope in her own home, despite daily visits from my BIL to do her shopping and cook her dinner, etc. I think Mrs Tidy felt as though she had abandoned her when she moved in with me 200 miles away.
And the last few times we visited I could see how heart-wrenching it was when her Mum didn't know who she was.
My Dad suffered a major cerebral haemorrhage in 1975 at 61 that put him in a coma for nearly a week and he lost all use of his left leg and arm. My Mum visited him every day and he would often ask her to help him end it, but that has never been an option in the UK. When he pased away in 1988 the family were all sad, but in so many ways we had already lost him years before.
Mum was living in her retirement flat until we realised that even with carers and family visits she couldn't cope so we moved her into a residential home in July 2019.
Then we had to sell her flat to pay the fees but my sister and I visited every week and my niece and nephew + great grand-daughter visited every couple of weeks. Thank goodness we had LPAs registered.
Then March 2020 happened.
So I next got to have an outdoor visit masked and 2M away in June 2020 and she didn't know who I was which gave me a much better understanding of what Mrs Tidy had been through.
I managed to visit again in July with my sister and she did recognise us both, but from what she said it was obvious she had fairly advanced dementia. Things like needing to get back to work? But to be fair she was 98 so she had done pretty well!
Then the home stopped visits ahead of the next lockdown and I got a call on 3 November saying I had better get there ASAP. I lived 35 miles away so they also rang my sister who was 2 miles away, but even she didn't get there in time.
So then we had a service with limited numbers, social distancing and no singing - it really wasn't what Mum would have wanted.
As sad as dementia is Covid really has made it far more painful.
When I speak to the family now we try to remember the things we all did with them in happier times, because that's how we want to remember them.
My MIL had it in the mid-2000s and had to be moved into a home because she couldn't cope in her own home, despite daily visits from my BIL to do her shopping and cook her dinner, etc. I think Mrs Tidy felt as though she had abandoned her when she moved in with me 200 miles away.
And the last few times we visited I could see how heart-wrenching it was when her Mum didn't know who she was.
My Dad suffered a major cerebral haemorrhage in 1975 at 61 that put him in a coma for nearly a week and he lost all use of his left leg and arm. My Mum visited him every day and he would often ask her to help him end it, but that has never been an option in the UK. When he pased away in 1988 the family were all sad, but in so many ways we had already lost him years before.
Mum was living in her retirement flat until we realised that even with carers and family visits she couldn't cope so we moved her into a residential home in July 2019.
Then we had to sell her flat to pay the fees but my sister and I visited every week and my niece and nephew + great grand-daughter visited every couple of weeks. Thank goodness we had LPAs registered.
Then March 2020 happened.
So I next got to have an outdoor visit masked and 2M away in June 2020 and she didn't know who I was which gave me a much better understanding of what Mrs Tidy had been through.
I managed to visit again in July with my sister and she did recognise us both, but from what she said it was obvious she had fairly advanced dementia. Things like needing to get back to work? But to be fair she was 98 so she had done pretty well!
Then the home stopped visits ahead of the next lockdown and I got a call on 3 November saying I had better get there ASAP. I lived 35 miles away so they also rang my sister who was 2 miles away, but even she didn't get there in time.
So then we had a service with limited numbers, social distancing and no singing - it really wasn't what Mum would have wanted.
As sad as dementia is Covid really has made it far more painful.
When I speak to the family now we try to remember the things we all did with them in happier times, because that's how we want to remember them.
Thnaks to those posting, some of the stories are horrific and although we are only beginning the journey, it helps us focus the mind.
Some advice please.
We have had a call from the occ health team who advise us that MiL is unable to seat to stand on her own. This is a consequence of the dementia they tell us. They are using a Sara Stedy to help her but believe that it would not be suitable for her at home and she is classed as High Risk. they can not categorically advise her to go straight to care home but reading between the lines this is what they are saying. Of course when we call the council, they would prefer 4x a day carers etc.
Night before last she had a bit of an episode due to COPD. Sounds like they thought there was a lung clot but a scan revealed nothing (although some historical rib fractures were a concern). She is on IV antibiotics for the next 5 days so imminent discharge unlikely.
Unfortunately because Covid we can't see her, only FiL allowed so difficult to make our own determination.
For those who have been there, what do you suggest based on the info above. That is pretty much all I have to go on as well.
Some advice please.
We have had a call from the occ health team who advise us that MiL is unable to seat to stand on her own. This is a consequence of the dementia they tell us. They are using a Sara Stedy to help her but believe that it would not be suitable for her at home and she is classed as High Risk. they can not categorically advise her to go straight to care home but reading between the lines this is what they are saying. Of course when we call the council, they would prefer 4x a day carers etc.
Night before last she had a bit of an episode due to COPD. Sounds like they thought there was a lung clot but a scan revealed nothing (although some historical rib fractures were a concern). She is on IV antibiotics for the next 5 days so imminent discharge unlikely.
Unfortunately because Covid we can't see her, only FiL allowed so difficult to make our own determination.
For those who have been there, what do you suggest based on the info above. That is pretty much all I have to go on as well.
My mother suffered it in her last years. For a long time, we put it down to her cantankerous nature. She went thorough the stages of remembering things from the past, shuffling the order of events and becoming very angry with people as consequence. The aggression was very difficult to cope with. For relatives, it's better to think that the person that they used to know has largely left their body.
She, I think it's general, found it totally impossible to adapt to anything new, even something as simple as a kettle. It's better to try to not change any objects or appliances and keep everything that's familiar for as long as possible. In the end, a care home is inevitable.
She, I think it's general, found it totally impossible to adapt to anything new, even something as simple as a kettle. It's better to try to not change any objects or appliances and keep everything that's familiar for as long as possible. In the end, a care home is inevitable.
worsy said:
Thnaks to those posting, some of the stories are horrific and although we are only beginning the journey, it helps us focus the mind.
Some advice please.
We have had a call from the occ health team who advise us that MiL is unable to seat to stand on her own. This is a consequence of the dementia they tell us. They are using a Sara Stedy to help her but believe that it would not be suitable for her at home and she is classed as High Risk. they can not categorically advise her to go straight to care home but reading between the lines this is what they are saying. Of course when we call the council, they would prefer 4x a day carers etc.
Night before last she had a bit of an episode due to COPD. Sounds like they thought there was a lung clot but a scan revealed nothing (although some historical rib fractures were a concern). She is on IV antibiotics for the next 5 days so imminent discharge unlikely.
Unfortunately because Covid we can't see her, only FiL allowed so difficult to make our own determination.
For those who have been there, what do you suggest based on the info above. That is pretty much all I have to go on as well.
Hi Worzy - sorry to say for my mum it was similar scenario - GP/OCC opinion vs. Social Services. (Not knocking them - but Social Services were very slow to respond - everything to be reviewed at their bi-weekly meeting etc) Keep badgering/lodging calls (I only ever got a call back from my mums social worker as she worked part time etc) OCC/GP should have submitted their report saying at risk etc Some advice please.
We have had a call from the occ health team who advise us that MiL is unable to seat to stand on her own. This is a consequence of the dementia they tell us. They are using a Sara Stedy to help her but believe that it would not be suitable for her at home and she is classed as High Risk. they can not categorically advise her to go straight to care home but reading between the lines this is what they are saying. Of course when we call the council, they would prefer 4x a day carers etc.
Night before last she had a bit of an episode due to COPD. Sounds like they thought there was a lung clot but a scan revealed nothing (although some historical rib fractures were a concern). She is on IV antibiotics for the next 5 days so imminent discharge unlikely.
Unfortunately because Covid we can't see her, only FiL allowed so difficult to make our own determination.
For those who have been there, what do you suggest based on the info above. That is pretty much all I have to go on as well.
Persistence is key (my mums dementia assessment was delayed for months as Social Services kept saying it was a water infection causing her erratic behaviour) We got there in the end - just would have been nice not to have to go through the wringer with them when everybody/tests showed it wasn't the root cause of her behavioural changes etc.
Best of luck
worsy said:
Thnaks to those posting, some of the stories are horrific and although we are only beginning the journey, it helps us focus the mind.
Some advice please.
We have had a call from the occ health team who advise us that MiL is unable to seat to stand on her own. This is a consequence of the dementia they tell us. They are using a Sara Stedy to help her but believe that it would not be suitable for her at home and she is classed as High Risk. they can not categorically advise her to go straight to care home but reading between the lines this is what they are saying. Of course when we call the council, they would prefer 4x a day carers etc.
Night before last she had a bit of an episode due to COPD. Sounds like they thought there was a lung clot but a scan revealed nothing (although some historical rib fractures were a concern). She is on IV antibiotics for the next 5 days so imminent discharge unlikely.
Unfortunately because Covid we can't see her, only FiL allowed so difficult to make our own determination.
For those who have been there, what do you suggest based on the info above. That is pretty much all I have to go on as well.
For us, should my Mum get an infection it has been agreed not to treat it and let nature take its course. Sounds cruel and I know it is but thinking long term she's never going to get better, Alzheimer's is not something they can cure and she already has no quality of life. For all of us it would be a blessed relief I think. Some advice please.
We have had a call from the occ health team who advise us that MiL is unable to seat to stand on her own. This is a consequence of the dementia they tell us. They are using a Sara Stedy to help her but believe that it would not be suitable for her at home and she is classed as High Risk. they can not categorically advise her to go straight to care home but reading between the lines this is what they are saying. Of course when we call the council, they would prefer 4x a day carers etc.
Night before last she had a bit of an episode due to COPD. Sounds like they thought there was a lung clot but a scan revealed nothing (although some historical rib fractures were a concern). She is on IV antibiotics for the next 5 days so imminent discharge unlikely.
Unfortunately because Covid we can't see her, only FiL allowed so difficult to make our own determination.
For those who have been there, what do you suggest based on the info above. That is pretty much all I have to go on as well.
Yet every time my phone rings and I see the care home number pop up my heart jumps at the thought of it being 'that' call
solo2 said:
For us, should my Mum get an infection it has been agreed not to treat it and let nature take its course. Sounds cruel and I know it is but thinking long term she's never going to get better, Alzheimer's is not something they can cure and she already has no quality of life. For all of us it would be a blessed relief I think.
Yet every time my phone rings and I see the care home number pop up my heart jumps at the thought of it being 'that' call
How long has your mother been suffering with this and how old is she now May I ask ?Yet every time my phone rings and I see the care home number pop up my heart jumps at the thought of it being 'that' call
Lost my father to it last year... f
king awful disease, that strips away a loving parent and partner to leave an aggressive shadow of their former self.
But here's a funny story from our experiences of it - too much sadness in this thread.
My mother called me to moan about how bad, dad was getting.
"So I was stood in the kitchen, and I hear your father shuffle into the kitchen and I look round. He's stood there, trousers around his ankles, sporting a massive errection. Proudly he proclaims... Fancy a bit of this darling?".
Me... Laughing... "So did you?"
Mum "I did not... thank you very much"
RIP Dad.
king awful disease, that strips away a loving parent and partner to leave an aggressive shadow of their former self. But here's a funny story from our experiences of it - too much sadness in this thread.
My mother called me to moan about how bad, dad was getting.
"So I was stood in the kitchen, and I hear your father shuffle into the kitchen and I look round. He's stood there, trousers around his ankles, sporting a massive errection. Proudly he proclaims... Fancy a bit of this darling?".
Me... Laughing... "So did you?"
Mum "I did not... thank you very much"
RIP Dad.
worsy said:
Thnaks to those posting, some of the stories are horrific and although we are only beginning the journey, it helps us focus the mind.
Some advice please.
We have had a call from the occ health team who advise us that MiL is unable to seat to stand on her own. This is a consequence of the dementia they tell us. They are using a Sara Stedy to help her but believe that it would not be suitable for her at home and she is classed as High Risk. they can not categorically advise her to go straight to care home but reading between the lines this is what they are saying. Of course when we call the council, they would prefer 4x a day carers etc.
Night before last she had a bit of an episode due to COPD. Sounds like they thought there was a lung clot but a scan revealed nothing (although some historical rib fractures were a concern). She is on IV antibiotics for the next 5 days so imminent discharge unlikely.
Unfortunately because Covid we can't see her, only FiL allowed so difficult to make our own determination.
For those who have been there, what do you suggest based on the info above. That is pretty much all I have to go on as well.
If it helps at all, my mother is in exactly the same situation, with her dementia being severely advanced now (just a flicker of recognition every now and again).Some advice please.
We have had a call from the occ health team who advise us that MiL is unable to seat to stand on her own. This is a consequence of the dementia they tell us. They are using a Sara Stedy to help her but believe that it would not be suitable for her at home and she is classed as High Risk. they can not categorically advise her to go straight to care home but reading between the lines this is what they are saying. Of course when we call the council, they would prefer 4x a day carers etc.
Night before last she had a bit of an episode due to COPD. Sounds like they thought there was a lung clot but a scan revealed nothing (although some historical rib fractures were a concern). She is on IV antibiotics for the next 5 days so imminent discharge unlikely.
Unfortunately because Covid we can't see her, only FiL allowed so difficult to make our own determination.
For those who have been there, what do you suggest based on the info above. That is pretty much all I have to go on as well.
She's currently in A&E after having 2 falls in a day with a suspected fractured knee, her second visit to hospital in 3 weeks unfortunately. Rumblings that a care home setting will be better for her as they do not have the capacity to step up the carer visits from 2x a day to 4 due to a lack of staff and capacity issues resulting from the pent up demand on services due to Covid.
My dad is broken now, with the endless lack of sleep taking its toll, the effort to try and make her eat, to go to the toilet etc. Mum's been pretty much housebound now for 2 years which means effectively he has been too.
My only advice would be do what is best for the primary carer. When the dementia is highly advanced maintaining the person's independence can be more damaging on those around them than the perceived benefit it brings, or feeling that you're "doing the right thing".
Mum "died" for me around 2 years ago and as someone pointed out, it's just a waiting game of her body catching up with her mind in that regard. There is sometimes a glimmer of an old memory of her as a child but those are few and far between now.
My wife maintains that seeing her parents succumb to cancer in their 60s is a worse situation to be in but I respectfully disagree. That was a horrible time but mercifully it took place over 6 months only. Mum has been in decline for 6 years now and for the last 2 it has felt like a huge prolonged grieving process combined with the strain of maintaining some dignity for her.
Finally, thanks to whoever mentioned the ripping and folding of tissues/kitchen roll by their loved one, that made me smile! Mum has been doing it for years, and her mother who had dementia did exactly the same before her. I've told my wife to push me down the stairs if she so much as sees me eyeing up a box of kleenex in the supermarket
Sargeant Orange said:
My dad is broken now, with the endless lack of sleep taking its toll, the effort to try and make her eat, to go to the toilet etc. Mum's been pretty much housebound now for 2 years which means effectively he has been too.
My only advice would be do what is best for the primary carer. When the dementia is highly advanced maintaining the person's independence can be more damaging on those around them than the perceived benefit it brings, or feeling that you're "doing the right thing".
Mum "died" for me around 2 years ago and as someone pointed out, it's just a waiting game of her body catching up with her mind in that regard. There is sometimes a glimmer of an old memory of her as a child but those are few and far between now.
This is absolutely bang on IMO.My only advice would be do what is best for the primary carer. When the dementia is highly advanced maintaining the person's independence can be more damaging on those around them than the perceived benefit it brings, or feeling that you're "doing the right thing".
Mum "died" for me around 2 years ago and as someone pointed out, it's just a waiting game of her body catching up with her mind in that regard. There is sometimes a glimmer of an old memory of her as a child but those are few and far between now.
When my father first started going down hill my sister and I often thought my mother was exaggerating a bit, as he was able to keep it together really well for half a day or so when one of us came to visit. It wasn't until my sister stayed over a couple of night she saw the real situation. My mother spent several years where pretty much everything she did revolved around looking after him, and it really took a toll on her, emotionally as well as physically. She got a carer in for while and eventually the carer managed to convince her that it was too much work even for the two of them. She really felt like she'd failed him when she had to put him in a home.
However something a mate, who's mother had been primary carer for his sister for a long time, said really resonated with me. Let the carers deal with the bad stuff, so you can concentrate on the good times.
Putting him in a home meant he had a decent quality of care, but mainly meant my mother had some semblance of life back, and was able to go and see him every day and spend some quality time with him rather than dealing with the bad bits.
As above, we lost him some time before he died, there were times when I visited the home and he'd sit in a chair staring in the distance and not even know anyone was there
GT3Manthey said:
solo2 said:
For us, should my Mum get an infection it has been agreed not to treat it and let nature take its course. Sounds cruel and I know it is but thinking long term she's never going to get better, Alzheimer's is not something they can cure and she already has no quality of life. For all of us it would be a blessed relief I think.
Yet every time my phone rings and I see the care home number pop up my heart jumps at the thought of it being 'that' call
How long has your mother been suffering with this and how old is she now May I ask ?Yet every time my phone rings and I see the care home number pop up my heart jumps at the thought of it being 'that' call
Edited by solo2 on Friday 13th August 18:04
solo2 said:
She is 87 and she was diagnosed over10 years ago so she has done really well to survive this long as we knew something wasn't right for several years prior to her diagnosis.
Wow yes she’s done very will Edited by solo2 on Friday 13th August 18:04
I ask as my grandmother was around 83 when we first noticed it and she went on till 93
GT3Manthey said:
solo2 said:
She is 87 and she was diagnosed over10 years ago so she has done really well to survive this long as we knew something wasn't right for several years prior to her diagnosis.
Wow yes she’s done very will Edited by solo2 on Friday 13th August 18:04
I ask as my grandmother was around 83 when we first noticed it and she went on till 93
I went to visit mum yesterday at her home and she was in a bad mood. She had been hitting the staff all day and had thrown her lunch at the legs of a member of staff so when she would not come to see us I didn't push it. The staff get enough abuse as it is so we left. This was the first time we had not seen her during a visit but knew it was only a matter of time before it would happen.
My Dad was devastated.
Visited mum again this weekend, we only go once a fortnight as that is all my Dad can take.
She did come to see us but she had yet again no idea who we are and was very shouty to the staff when they brought her into the room. Whatever they get paid it is not enough, it must be so hard to be yelled at like that all the time even if they know it is not meant.
There was one tiny glimmer of hope, I showed her a picture of the family dog we have had for around ten years as she asked me if I had any pets and she instantly said her name, asked if she was still alive and cried for her dog.
Heart breaking for all of us.
She did come to see us but she had yet again no idea who we are and was very shouty to the staff when they brought her into the room. Whatever they get paid it is not enough, it must be so hard to be yelled at like that all the time even if they know it is not meant.
There was one tiny glimmer of hope, I showed her a picture of the family dog we have had for around ten years as she asked me if I had any pets and she instantly said her name, asked if she was still alive and cried for her dog.
Heart breaking for all of us.
My father was diagnosed at 73 but we had seen symptoms for years. My mother left him at 59 because she had lost her patience. With hind sight, it was dementia. Even before then, I worked with him and he would become overwhelmed by situations and struggled to put a sentence together. Shortly after I stopped working for him he sold the business and never worked again.
We knew something was wrong. He visited me and I’d have to tell him where his bedroom was every night. Unfortunately, I live in the US and he is in rural England. Every attempt I have made has been stopped. I have tickets booked for the start of October but that is a long month away with Covid cases rising.
Frankly, I don’t know what we would have done without the help of a family friend. We had to move my father last year and the family friend coordinated everything. He now gets compensation for helping my father but I’m very sure he isn’t in it for the money. We also have a team of people visiting each day to cook and clean and keep him company.
It’s been hard. My brother has done a great job with power of attorney and many other things. Sometimes it becomes too much for my brother though and he benefits from just talking. This whole thing has brought us closer together.
My father dreams of seeing Whales so I originally planned on driving him to Scotland and chartering a boat. Not any more. I’m going to keep him closer to his routine. Walking around the hills and him doing all the talking.
I have no idea how long he will last but I want to see him before he loses it. He is very aware of his decline and is fearful of losing his mind. He has told me many times he will kill himself when he knows he has lost his mind. I don’t think he realizes, it will be too late by that point. My grand mother in law (if that is a thing) forgot she was a hard core alcoholic. She stopped drinking over night. Her doctors were convinced that’s what killed her.
We knew something was wrong. He visited me and I’d have to tell him where his bedroom was every night. Unfortunately, I live in the US and he is in rural England. Every attempt I have made has been stopped. I have tickets booked for the start of October but that is a long month away with Covid cases rising.
Frankly, I don’t know what we would have done without the help of a family friend. We had to move my father last year and the family friend coordinated everything. He now gets compensation for helping my father but I’m very sure he isn’t in it for the money. We also have a team of people visiting each day to cook and clean and keep him company.
It’s been hard. My brother has done a great job with power of attorney and many other things. Sometimes it becomes too much for my brother though and he benefits from just talking. This whole thing has brought us closer together.
My father dreams of seeing Whales so I originally planned on driving him to Scotland and chartering a boat. Not any more. I’m going to keep him closer to his routine. Walking around the hills and him doing all the talking.
I have no idea how long he will last but I want to see him before he loses it. He is very aware of his decline and is fearful of losing his mind. He has told me many times he will kill himself when he knows he has lost his mind. I don’t think he realizes, it will be too late by that point. My grand mother in law (if that is a thing) forgot she was a hard core alcoholic. She stopped drinking over night. Her doctors were convinced that’s what killed her.
h0b0 said:
My father was diagnosed at 73 but we had seen symptoms for years. My mother left him at 59 because she had lost her patience. With hind sight, it was dementia. Even before then, I worked with him and he would become overwhelmed by situations and struggled to put a sentence together. Shortly after I stopped working for him he sold the business and never worked again.
We knew something was wrong. He visited me and I’d have to tell him where his bedroom was every night. Unfortunately, I live in the US and he is in rural England. Every attempt I have made has been stopped. I have tickets booked for the start of October but that is a long month away with Covid cases rising.
Frankly, I don’t know what we would have done without the help of a family friend. We had to move my father last year and the family friend coordinated everything. He now gets compensation for helping my father but I’m very sure he isn’t in it for the money. We also have a team of people visiting each day to cook and clean and keep him company.
It’s been hard. My brother has done a great job with power of attorney and many other things. Sometimes it becomes too much for my brother though and he benefits from just talking. This whole thing has brought us closer together.
My father dreams of seeing Whales so I originally planned on driving him to Scotland and chartering a boat. Not any more. I’m going to keep him closer to his routine. Walking around the hills and him doing all the talking.
I have no idea how long he will last but I want to see him before he loses it. He is very aware of his decline and is fearful of losing his mind. He has told me many times he will kill himself when he knows he has lost his mind. I don’t think he realizes, it will be too late by that point. My grand mother in law (if that is a thing) forgot she was a hard core alcoholic. She stopped drinking over night. Her doctors were convinced that’s what killed her.
Sorry to hear this. We knew something was wrong. He visited me and I’d have to tell him where his bedroom was every night. Unfortunately, I live in the US and he is in rural England. Every attempt I have made has been stopped. I have tickets booked for the start of October but that is a long month away with Covid cases rising.
Frankly, I don’t know what we would have done without the help of a family friend. We had to move my father last year and the family friend coordinated everything. He now gets compensation for helping my father but I’m very sure he isn’t in it for the money. We also have a team of people visiting each day to cook and clean and keep him company.
It’s been hard. My brother has done a great job with power of attorney and many other things. Sometimes it becomes too much for my brother though and he benefits from just talking. This whole thing has brought us closer together.
My father dreams of seeing Whales so I originally planned on driving him to Scotland and chartering a boat. Not any more. I’m going to keep him closer to his routine. Walking around the hills and him doing all the talking.
I have no idea how long he will last but I want to see him before he loses it. He is very aware of his decline and is fearful of losing his mind. He has told me many times he will kill himself when he knows he has lost his mind. I don’t think he realizes, it will be too late by that point. My grand mother in law (if that is a thing) forgot she was a hard core alcoholic. She stopped drinking over night. Her doctors were convinced that’s what killed her.
Same happened to my grandmother. The bit I remember most is ‘losing’ her for some years before she passed at 90.
She had always been such a determined and strong woman then suddenly she was found in her local high street at 4am wearing her bedclothes and that’s when my parents intervened.
HustleRussell said:
My Mum’s partner has been living with dementia for a couple of years now.
It is getting to the point now where he is going to need a lot more care. He generally can’t take care of himself autonomously e.g. showering every day, remembering to take medication, eating properly, managing appointments. He is beginning to forget how to use his mobile phone and the television. He has periods of severe confusion immediately before and after sleeping when he will forget where he is and who he’s talking to.
He is paranoid and suspicious of people. He often believes that people around him are trying to steal his money or things. He has accused my mum of being romantically involved with her widowed brother in law. He has become simultaneously very needy and very possessive of my Mum. She has received 40+ phone calls in a day from him before now. When she doesn’t answer he rings me, my sister, Mum’s friends and asks where my Mum is, why she won’t answer, when she can call him back etc etc.
He had a period of a few weeks after Christmas when he didn’t know night from day and would go to bed at 1pm and would be up in the middle of the night putting a wash on. He thankfully seems to have fallen back into a decent rhythm but sadly small improvements such as this seem quite rare in his case.
He has now been informed that he must stop driving until he completes another driving assessment (which are currently suspended due to Covid). We discussed at length the ramifications of this but he immediately forgot the whole conversation so we’re now going to have to get his car / keys away from him which will be difficult given the paranoia.
He has thankfully not been physically violent and has become quite passive, but it has been tragic to watch a proud and strong former serviceman who was unerringly punctual and immaculately turned out, becoming a vulnerable and confused old man who is in bits just trying to manage an appointment or a visit from an electrician.
He (John) became very confused coming into the winter as he did last year and lost his concept of time and day / night. We had a lot of episodes with falls and continence issues. He stopped washing himself altogether. At the same time his care was transitioned from one team to another- 'Start' team to private care- and they were not successful in persuading him to eat a proper meal or to take his medication. We also had them call up and explain that he was being abusive and that they would not be able to continue to offer care if it continued. He also raised his hand to Mum on a couple of occasions. It is getting to the point now where he is going to need a lot more care. He generally can’t take care of himself autonomously e.g. showering every day, remembering to take medication, eating properly, managing appointments. He is beginning to forget how to use his mobile phone and the television. He has periods of severe confusion immediately before and after sleeping when he will forget where he is and who he’s talking to.
He is paranoid and suspicious of people. He often believes that people around him are trying to steal his money or things. He has accused my mum of being romantically involved with her widowed brother in law. He has become simultaneously very needy and very possessive of my Mum. She has received 40+ phone calls in a day from him before now. When she doesn’t answer he rings me, my sister, Mum’s friends and asks where my Mum is, why she won’t answer, when she can call him back etc etc.
He had a period of a few weeks after Christmas when he didn’t know night from day and would go to bed at 1pm and would be up in the middle of the night putting a wash on. He thankfully seems to have fallen back into a decent rhythm but sadly small improvements such as this seem quite rare in his case.
He has now been informed that he must stop driving until he completes another driving assessment (which are currently suspended due to Covid). We discussed at length the ramifications of this but he immediately forgot the whole conversation so we’re now going to have to get his car / keys away from him which will be difficult given the paranoia.
He has thankfully not been physically violent and has become quite passive, but it has been tragic to watch a proud and strong former serviceman who was unerringly punctual and immaculately turned out, becoming a vulnerable and confused old man who is in bits just trying to manage an appointment or a visit from an electrician.
Mum visited him at his flat on Dec 23rd and found him in a severely confused state. He was admitted to hospital where they started treating him for what turned out to be a chest infection. We had suspected that some kind of infection could be exacerbating his behaviour and he had been on a course of anti-Bs but anyway.
At Christmas, Mum was much less stressed than she had been for some weeks. She knew that John was being monitored and cared for around the clock.
The admission to hospital has been a catalyst for a re-assessment of his care needs and it was felt by all that he needs residential care now. It is looking like he will be discharged from hospital tomorrow and transferred directly into a residential care home.
I really hope that being in a more sociable environment with continuity will enable him to recover some of his natural social behaviour. We don't really know what we've got with him recently, he has been unpleasant but this could have been aggravated by his infection and then the hospital environment.
It all seems to have progressed very fast, and one can never really be 'happy' about a loved one going into a care home, but I am looking forward to Mum having that relief and John having the care that he needs. Sadly if outside carers and very often Mum are unable to get him to at least eat, drink and take his medications, there was really only one thing for it. It seems crazy that he was driving into Spring 2021. The DVLA were literally speaking no help at all in that aspect. We were trying to get something done officially since the early part of the year but without the help of the DVLA he retained his licence until the end of July. Still no response to our letters nearly a year later.
HustleRussell said:
It all seems to have progressed very fast.......
The DVLA were literally speaking no help at all in that aspect. We were trying to get something done officially since the early part of the year but without the help of the DVLA he retained his licence until the end of July. Still no response to our letters nearly a year later.
You could be talking about my father but from his ex-fiancé's children's perspective.The DVLA were literally speaking no help at all in that aspect. We were trying to get something done officially since the early part of the year but without the help of the DVLA he retained his licence until the end of July. Still no response to our letters nearly a year later.
It seems fast when you have that moment of clarity and realise how bad things have got. My father was good at hiding his symptoms but when we look back we can see the decline was happening for years, even decades. He stayed with us over 10 years before he was diagnosed and it is only now that we know he was exhibiting clear signs that we did not yet understand.
The DVLA did assist me in taking his licence away. He is now grateful it happened but at the time he was very frustrated. This was after he destroyed 2 cars in a couple of months. The process did take some time because the initial doctors reports had him fit to drive. He still does not know it was me but is grateful he was stopped driving before he killed someone.
h0b0 said:
My father dreams of seeing Whales so I originally planned on driving him to Scotland and chartering a boat. Not any more. I’m going to keep him closer to his routine. Walking around the hills and him doing all the talking.
I have no idea how long he will last but I want to see him before he loses it.
Here is my update....I have no idea how long he will last but I want to see him before he loses it.
I made it over to the UK to see him in October '21. It was a mixed bag of emotions as he is really struggling. He tried to get in my car the wrong way around for example. I managed to bring the family together though and he has not stopped talking about it since.
And to the subject of Whales, I started a thread on pistonheads to ask for ideas on how to see them in the UK. I was even considering chartering a helicopter. Another idea was to set up an assisted holiday to Hawaii. That was until my mother turned up and said "You silly old fool. We saw Whales in.....". Years, bloody years I have had this on my mind and in that moment he just said "Oh, OK then I do not need to see them again".
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