Dementia- what’s useful to know before it gets worse?
Discussion
Mum (mid 80’s) has been diagnosed with this today. We knew she was declining a little over time so whilst it isn’t unexpected it’s still a huge shock. She’s had a huge decline over 72 hours and the worry is this is the new baseline. I can’t fault the medical care and the GP especially has appeared to have moved mountains.
For those who have been here before, what’s really useful to know before it gets worse? What do you wish you had done/said/arranged and what makes this s
t show a lot easier?
My daughter is incredibly close to Grandma and I don’t know how to best protect her.
I don’t know how to support my dad who seems lost (and has his own degenerative health concerns and we always assumed he’d be the one who declined first)
The last three days has already seen the mum I have known fade into the past and the future looks full of worry and sadness at the moment. Any advice is gratefully received.
For those who have been here before, what’s really useful to know before it gets worse? What do you wish you had done/said/arranged and what makes this s
t show a lot easier? My daughter is incredibly close to Grandma and I don’t know how to best protect her.
I don’t know how to support my dad who seems lost (and has his own degenerative health concerns and we always assumed he’d be the one who declined first)
The last three days has already seen the mum I have known fade into the past and the future looks full of worry and sadness at the moment. Any advice is gratefully received.
This is a difficult subject , there is no easy way to say this , but you will loose your mum in front of your eyes .
I speak from experience .
In the early days it will just be short term memory loss , accompanied with endless repeats of the same stories /recollections .
Sometimes names will get confused ,my mum would include our dogs names as she struggled to remember .
Later she would have no idea who people are , I was called by my dad’s name quite often .
Keep talking to her, relive old memories, stimulate her brain and keep it active
The final stages you will be looking at a blank person, that is when you have lost her forever , having to feed her as she reverts to almost a baby stage spitting food out , turning her head to refuse food .and incontinence is inevitable
My mum died long into the illness , but we lost her a long time before , so death was a release , for her , and for our distress in seeing her , once vital and full of love for her family drain away .
Writing this has bought me to tears , reliving her sinking into the depths of dementia
I speak from experience .
In the early days it will just be short term memory loss , accompanied with endless repeats of the same stories /recollections .
Sometimes names will get confused ,my mum would include our dogs names as she struggled to remember .
Later she would have no idea who people are , I was called by my dad’s name quite often .
Keep talking to her, relive old memories, stimulate her brain and keep it active
The final stages you will be looking at a blank person, that is when you have lost her forever , having to feed her as she reverts to almost a baby stage spitting food out , turning her head to refuse food .and incontinence is inevitable
My mum died long into the illness , but we lost her a long time before , so death was a release , for her , and for our distress in seeing her , once vital and full of love for her family drain away .
Writing this has bought me to tears , reliving her sinking into the depths of dementia
Edited by MXRod on Saturday 10th June 08:35
How old is your daughter ?
I think it's all part of growing up realising that nobody lives forever.
My kids are in their 20s and were very close to my wife's parents, so I know their deaths at the time hit them hard. But they were more concerned about their mother and how she was dealing with her grief.
I'd say, that it's best to make them feel useful. Go and see granny. Go and play a game with her. Take her out to the theatre. Etc.
I think it's all part of growing up realising that nobody lives forever.
My kids are in their 20s and were very close to my wife's parents, so I know their deaths at the time hit them hard. But they were more concerned about their mother and how she was dealing with her grief.
I'd say, that it's best to make them feel useful. Go and see granny. Go and play a game with her. Take her out to the theatre. Etc.
Already the mum I had last week isn’t the same person I spoke to today.
My daughter is 7. I’ve told her what’s happening to Grandma’s brain and how memories are made so she understands why Grandma can cook dinner but not remember where we are going.
It’s just such a st st thing to happen.
My daughter is 7. I’ve told her what’s happening to Grandma’s brain and how memories are made so she understands why Grandma can cook dinner but not remember where we are going.
It’s just such a s
t st thing to happen. MXRod said:
This is a difficult subject , there is no easy way to say this , but you will loose your mum in front of your eyes .
I speak from experience .
In the early days it will just be short term memory loss , accompanied with endless repeats of the same stories /recollections .
Sometimes names will get confused ,my mum would include our dogs names as she struggled to remember .
Later she would have no idea who people are , I was called by my dad’s name quite often .
Keep talking to her, relive old memories, stimulate her brain and keep it active
The final stages you will be looking at a blank person, that is when you have lost her forever , having to feed her as she reverts to almost a baby stage spitting food out , turning her head to refuse food .and incontinence is inevitable
My mum died long into the illness , but we lost her a long time before , so death was a release , for her , and for our distress in seeing her , once vital and full of love for her family drain away .
Writing this has bought me to tears , reliving her sinking into the depths of dementia
That's pretty much what I experienced too. My mum passed away 3 weeks ago only burying her this week and had suffered with dementia for around 5-6 years. She was in her own little world most of the time talking complete nonsense but occasionally making some sense. She would have a confused look on her face when shown pictures of my dad who we lost 13 years ago but could never remember his name but somehow sort of recognised the face. She would also call me her brother's name Victorio who died really young before the war. I speak from experience .
In the early days it will just be short term memory loss , accompanied with endless repeats of the same stories /recollections .
Sometimes names will get confused ,my mum would include our dogs names as she struggled to remember .
Later she would have no idea who people are , I was called by my dad’s name quite often .
Keep talking to her, relive old memories, stimulate her brain and keep it active
The final stages you will be looking at a blank person, that is when you have lost her forever , having to feed her as she reverts to almost a baby stage spitting food out , turning her head to refuse food .and incontinence is inevitable
My mum died long into the illness , but we lost her a long time before , so death was a release , for her , and for our distress in seeing her , once vital and full of love for her family drain away .
Writing this has bought me to tears , reliving her sinking into the depths of dementia
Edited by MXRod on Saturday 10th June 08:35
We ended up having to feed her also as she seemed to forget what to do and found a lot of comfort with a child's doll that she would talk to for hours. We put that doll in the coffin with her to keep her company.
The carers that looked after her for the last 3 years were brilliant and really developed a great affection for her although she would call them all sorts of derogatory names in Italian, they knew she didn't really mean it.
It's been really tough as it's almost like they are a completely different person not the mum you have know all your life but we did all we could to make her comfortable and she died with her family around her at home.
Best advice I can give is to make the most of any time together, try to stimulate her with old photos and music and keep talking to her as much as you can even though you might think it's a waste of time, trust me when she's gone you will wish you did.
Nothing makes it easier. It's a shocking way to see out a life, for the person involved and their friends and family.
As for your daughter, the more you talk to her and explain what's happening, when the inevitable happens it may be less of a shock. Kids understand death but they perhaps don't fully appreciate the impact. My son was 5 when my dad died with dementia.
Be patient with your mum. Use photos to help conversations about the past. If you have the same conversation every week it doesn't matter, it's always new to her and she'll be happy with that.
Look into possibility of care homes and financing that. Better to have done that research whilst there's still time. My dad was stuck in hospital for months waiting for a care home place to get sorted.
Other than that, I'm sorry for the position you're in.
As for your daughter, the more you talk to her and explain what's happening, when the inevitable happens it may be less of a shock. Kids understand death but they perhaps don't fully appreciate the impact. My son was 5 when my dad died with dementia.
Be patient with your mum. Use photos to help conversations about the past. If you have the same conversation every week it doesn't matter, it's always new to her and she'll be happy with that.
Look into possibility of care homes and financing that. Better to have done that research whilst there's still time. My dad was stuck in hospital for months waiting for a care home place to get sorted.
Other than that, I'm sorry for the position you're in.
My wife was diagnosed in 2014 and she sadly passed away in May last year, my 3 sons and I had 9 years of going through Dementia and would not wish anyone else to go through what we did. We effectively lost her in 2015 as it really took hold and the effects come in stages, roughly every 4 to 6 months, she seemed to drop off of a cliff to the next stage, it wasnt a gradual decline, these stages used to hit and she would drop to the next level.
Im welling up now just trying to write this now.
My lads, now aged 41, 39 and 30 all struggled with this too but we all kept very close during this disease, she spent 5 years in a Dementia care home and was finally taken away in May 2022, shes in a much better place now as she was so confused and almost unrecognisable to us as mum to our sons and wife to me, we had been married 44 years and she was a super lady, she really was.
Our grief probably started around 2017 as I/we knew that she had already been taken from us, she was only there in body and not in mind.
I learned the hard way in the early stages, i used to get angry with her when she had a "stage" change, probably because i didnt really understand what was going on. Its you that has to change and adapt to the new stage that they drop into, change your way of thinking, they are not resposinble for what is happening to them, they have absolute zero control over themselves, its you that has to change and adapt to the new them.
Please, show your love to them, show your compassion to them, kiss them, hug them, love them, do NOT get angry with them, they are not at fault.
Good luck OP i know exactly whats happening and what youre going through, its a bd disease and there is no great outcome from it either.
Im welling up now just trying to write this now.
My lads, now aged 41, 39 and 30 all struggled with this too but we all kept very close during this disease, she spent 5 years in a Dementia care home and was finally taken away in May 2022, shes in a much better place now as she was so confused and almost unrecognisable to us as mum to our sons and wife to me, we had been married 44 years and she was a super lady, she really was.
Our grief probably started around 2017 as I/we knew that she had already been taken from us, she was only there in body and not in mind.
I learned the hard way in the early stages, i used to get angry with her when she had a "stage" change, probably because i didnt really understand what was going on. Its you that has to change and adapt to the new stage that they drop into, change your way of thinking, they are not resposinble for what is happening to them, they have absolute zero control over themselves, its you that has to change and adapt to the new them.
Please, show your love to them, show your compassion to them, kiss them, hug them, love them, do NOT get angry with them, they are not at fault.
Good luck OP i know exactly whats happening and what youre going through, its a b
d disease and there is no great outcome from it either.My Dad passed a couple of years ago at 82 and had the beginnings of dementia.
Often thought he was somewhere else but could remember intricate details from a long time ago.
Usually on holiday somewhere or at his allotment. Never seemed in distress. Or my Mum never told me.
He was quite ill with cancer during lockdown and it hit my Mum hard with the isolation. We live 200 miles away.
She never really knew if she should play along or correct him.
I got to see him in hospital during lockdown and he was still with it.
Came out of hospital and into a care home where he died a few days later
Some very hard reads.
This is another cruel disease that is an effing effer.
Often thought he was somewhere else but could remember intricate details from a long time ago.
Usually on holiday somewhere or at his allotment. Never seemed in distress. Or my Mum never told me.
He was quite ill with cancer during lockdown and it hit my Mum hard with the isolation. We live 200 miles away.
She never really knew if she should play along or correct him.
I got to see him in hospital during lockdown and he was still with it.
Came out of hospital and into a care home where he died a few days later
Some very hard reads.
This is another cruel disease that is an effing effer.
hairy v said:
I would agree with other posters, lost my mum to Alzheimers.
One thing I now wish I had done is go through her photo albums with her - there are lots of old photos that I have no idea of where or who they are but would love to know.
Music is another good thing to play, as my wife was a teenager in the 60`s, whenever i visited her i used to play loads of 60s music to her and she absolutely loved it, their memory of music never fades as music memories are stored in a completely different place to the affected areas of Dementia.One thing I now wish I had done is go through her photo albums with her - there are lots of old photos that I have no idea of where or who they are but would love to know.
phumy said:
hairy v said:
I would agree with other posters, lost my mum to Alzheimers.
One thing I now wish I had done is go through her photo albums with her - there are lots of old photos that I have no idea of where or who they are but would love to know.
Music is another good thing to play, as my wife was a teenager in the 60`s, whenever i visited her i used to play loads of 60s music to her and she absolutely loved it, their memory of music never fades as music memories are stored in a completely different place to the affected areas of Dementia.One thing I now wish I had done is go through her photo albums with her - there are lots of old photos that I have no idea of where or who they are but would love to know.
OP you have my condolonces and I can echo what others have said. My father in law contracted it in his early 80s and went downhill very fast lasting only just over a year in a care home. That was a blessing.
They say that keeoing fit, keeping the mind active can keep the illness at bay but not in this case. The father in law was a heavy plant engineer and always intrigued by how things worked to the point of taking things apart and putting them back together his way. He would think nothing of nipping out after dinner to drop the gearbox on his car because he didn't like the sound it was making. With anything new his usual practice as to ignore the instruction manual!
He would swim every day, walk miles, had the patience of Job and would think nothing in his late 70s tinkering on his or my cars.
Looking back I remember now when he was in his mid 70s he say "It's not going in anymore" as if to say he couldn't remember how to take something apart. We dismissed it as 'old age' but I think now it was the early onset of the disease.
The last few years were horrible when he became violent, the mother in law was on permanent 'sentry duty' watching him all the time in case he got out of the house. Before that point we bought a vodafone tracker that we'd slip in his pocket so if he got lost on a walk we could find him - actioned a few times. On his last violent episode the police were called prompting the duty social worker and doctor when he was sectioned. On release from the secure hospital he was in the care home that we chose.
Depending on funding your choice of care home may not be the choice Social Services wants as they will go for the cheapest option and can be out of area, so expect to fight that one unless you finance any 'top up' payments. because FIL was sectioned there are different rules so our choice took primacy.
They say that keeoing fit, keeping the mind active can keep the illness at bay but not in this case. The father in law was a heavy plant engineer and always intrigued by how things worked to the point of taking things apart and putting them back together his way. He would think nothing of nipping out after dinner to drop the gearbox on his car because he didn't like the sound it was making. With anything new his usual practice as to ignore the instruction manual!
He would swim every day, walk miles, had the patience of Job and would think nothing in his late 70s tinkering on his or my cars.
Looking back I remember now when he was in his mid 70s he say "It's not going in anymore" as if to say he couldn't remember how to take something apart. We dismissed it as 'old age' but I think now it was the early onset of the disease.
The last few years were horrible when he became violent, the mother in law was on permanent 'sentry duty' watching him all the time in case he got out of the house. Before that point we bought a vodafone tracker that we'd slip in his pocket so if he got lost on a walk we could find him - actioned a few times. On his last violent episode the police were called prompting the duty social worker and doctor when he was sectioned. On release from the secure hospital he was in the care home that we chose.
Depending on funding your choice of care home may not be the choice Social Services wants as they will go for the cheapest option and can be out of area, so expect to fight that one unless you finance any 'top up' payments. because FIL was sectioned there are different rules so our choice took primacy.
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