Hi @NotTooLate
Did the person with dementia have some significant event prior to the first signs, or symptoms of dementia being noticed?’ Yes, or No?
Yes
Death of her husband - they were together for 60 years
I do my best to stay safe, thank you. I think my “clean” routines are in danger of becoming obsessional
Although my parents were together forever, they remained two very individual people They took the time to try to learn the others interests and support them. So, as mum loved to dance and dad had two left feet ... he took lessons and learnt to jive. Dad loved to sail and although mum swam like a brick, she wouId occasionally crew for him
The “vacant episode” was checked up the yin yan. Mum had come up to help me for a week and spent several days in hospital, she was scanned, poked and prodded, blood tested etc etc. No cause or lasting effects were found.
The epilepsy could be a red herring, but it’s worth adding to see if there is any mileage in it. Maybe add to the question of having epilepsy, a further question about vacant episodes or anti epileptic drugs prescribed. Just a thought.
This plateauing seems to be common in all the threads. A period that seems to get shorter after each dip. I don’t know if you could get an idea f the “average” length that might be, but suspect there wouId be many factors that interrupt it.
As they don’t understand why, they can’t find a cure, or a how. Some GP’s seem proactive in finding the best combination in slowing it down. Others seem to diagnose and then send you away. It’s a real lottery. As a self funder, the “off you go” attitude seemed to be all that was on offer. I found that the hardest part
I wouId add, my mum was a retired dementia nurse, she had nursed in all the local EMI homes and knew exactly what the end result was. I had a devil of a time trying to get her to look at “now” rather than some time in the future.
I accept that research requires proof and testing, but I also believe that listening to those at the front line might point to a direction that’s not been looked at
Its all very well putting out “info commercials” about preventing dementia, but it’s so sugar coated (it’s just a little memory loss) and frankly I don't think they are right. There is a lot of talk about keeping active, using your brain, socialising etc helping to prevent this disease, but .... either my mum was an isolated case, or it’s rubbish.
My mum walked the dog at least twice every day. A long walk, along the seafront, up and down hills and she wouId go for an hour. The walks got slower as she aged, but she still went. She was walking the dog three times a day up until her stroke, two years after diagnosis.
Mum also read extensively, she was rarely without a book in her hand. She always had one in her bag. She also watched the news every day and she paid attention, it wasn’t just background noise.
In addition, she wouId visit neighbours every few days. Hop a bus into town and walk for fifteen minutes to visit an old work colleague. She didn’t retire until she was in her seventies and then volunteered in a charity shop until aged about 76!!
Just a suggestion, feel free to ignore of course, but wouId a timeline be helpful ..
2009 - vacant episode (I’d have to check the year) - Year 0
2014 - May - Fall resulting in broken hip - Year 5
2015 - February - Sudden death of husband - Year 6
2015 - April - Diagnosis Alzheimers (early stages) - Year 6 plus 6 weeks
2018 - January - Stroke - Year 9
2018 - March - Fall resulting in broken wrist - Year 9
2018 - June - Fall resulting in same wrist broken again - Year 9
2018 - August - Death - Year 9
Perhaps they need the anonymity the site promises. Maybe they question how their info wouId be used, shared or even useful?
I hope something good can come out if this
Stay safe
Did the person with dementia have some significant event prior to the first signs, or symptoms of dementia being noticed?’ Yes, or No?
Yes
Death of her husband - they were together for 60 years
I do my best to stay safe, thank you. I think my “clean” routines are in danger of becoming obsessional
Although my parents were together forever, they remained two very individual people They took the time to try to learn the others interests and support them. So, as mum loved to dance and dad had two left feet ... he took lessons and learnt to jive. Dad loved to sail and although mum swam like a brick, she wouId occasionally crew for him
The “vacant episode” was checked up the yin yan. Mum had come up to help me for a week and spent several days in hospital, she was scanned, poked and prodded, blood tested etc etc. No cause or lasting effects were found.
The epilepsy could be a red herring, but it’s worth adding to see if there is any mileage in it. Maybe add to the question of having epilepsy, a further question about vacant episodes or anti epileptic drugs prescribed. Just a thought.
This plateauing seems to be common in all the threads. A period that seems to get shorter after each dip. I don’t know if you could get an idea f the “average” length that might be, but suspect there wouId be many factors that interrupt it.
As they don’t understand why, they can’t find a cure, or a how. Some GP’s seem proactive in finding the best combination in slowing it down. Others seem to diagnose and then send you away. It’s a real lottery. As a self funder, the “off you go” attitude seemed to be all that was on offer. I found that the hardest part
I wouId add, my mum was a retired dementia nurse, she had nursed in all the local EMI homes and knew exactly what the end result was. I had a devil of a time trying to get her to look at “now” rather than some time in the future.
I accept that research requires proof and testing, but I also believe that listening to those at the front line might point to a direction that’s not been looked at
Its all very well putting out “info commercials” about preventing dementia, but it’s so sugar coated (it’s just a little memory loss) and frankly I don't think they are right. There is a lot of talk about keeping active, using your brain, socialising etc helping to prevent this disease, but .... either my mum was an isolated case, or it’s rubbish.
My mum walked the dog at least twice every day. A long walk, along the seafront, up and down hills and she wouId go for an hour. The walks got slower as she aged, but she still went. She was walking the dog three times a day up until her stroke, two years after diagnosis.
Mum also read extensively, she was rarely without a book in her hand. She always had one in her bag. She also watched the news every day and she paid attention, it wasn’t just background noise.
In addition, she wouId visit neighbours every few days. Hop a bus into town and walk for fifteen minutes to visit an old work colleague. She didn’t retire until she was in her seventies and then volunteered in a charity shop until aged about 76!!
Just a suggestion, feel free to ignore of course, but wouId a timeline be helpful ..
2009 - vacant episode (I’d have to check the year) - Year 0
2014 - May - Fall resulting in broken hip - Year 5
2015 - February - Sudden death of husband - Year 6
2015 - April - Diagnosis Alzheimers (early stages) - Year 6 plus 6 weeks
2018 - January - Stroke - Year 9
2018 - March - Fall resulting in broken wrist - Year 9
2018 - June - Fall resulting in same wrist broken again - Year 9
2018 - August - Death - Year 9
There has to be a wealth of knowledge here, as you rightly state, but it is getting to it!? Case in point…. over 800 people have read this, Question Time for Carers, but half a dozen have taken part!? Why?
Perhaps they need the anonymity the site promises. Maybe they question how their info wouId be used, shared or even useful?
I hope something good can come out if this
Stay safe