Discussion
worsy said:
MiL has just been diagnosed with a combo of Vascular Dementia and Alzheimer's. Apparently she scored 60/100 in the test they do. Suggestion is that drugs are not available due to medication she has for epilepsy.
Anyone who might be able to provide some experience, prognosis etc?
My dad died a couple of years back, primarily of complications arising from vascular dementia. There wasn’t much anyone could do, regarding ‘treatments’ as there aren’t any. Adding Alzheimer's to the equation will complicate things, but almost certainly speed the demise along as well. Alzheimer’s is a terminal condition, the medics can make her as comfortable as possible, but ultimately, it is a terminal condition, and the patient loses pretty much all of their short term memory capabilities. The long term memory is often not so severely affected though, so they will remember things from years ago, but not remember who you are, within a few minutes. It’s a really difficult thing to deal with. Anyone who might be able to provide some experience, prognosis etc?
Indoraptor said:
worsy said:
MiL has just been diagnosed with a combo of Vascular Dementia and Alzheimer's. Apparently she scored 60/100 in the test they do. Suggestion is that drugs are not available due to medication she has for epilepsy.
Anyone who might be able to provide some experience, prognosis etc?
My dad died a couple of years back, primarily of complications arising from vascular dementia. There wasn’t much anyone could do, regarding ‘treatments’ as there aren’t any. Adding Alzheimer's to the equation will complicate things, but almost certainly speed the demise along as well. Alzheimer’s is a terminal condition, the medics can make her as comfortable as possible, but ultimately, it is a terminal condition, and the patient loses pretty much all of their short term memory capabilities. The long term memory is often not so severely affected though, so they will remember things from years ago, but not remember who you are, within a few minutes. It’s a really difficult thing to deal with. Anyone who might be able to provide some experience, prognosis etc?
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 b
h.
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.
h.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 s
t.f
king disease can fk right off.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.
Been through this recently (though not the nicest to start off with in my case). Accusing the Carer of stealing tins of food/conspiracy against her etc etc)h.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 s
t.f
king disease can fk right off.Op - sorry to say it’s going to be a rocky road ahead. But hold onto this one thought - it’s not her saying these hurtful things - it’s the disease.
In my mums case - she was still being assessed when cancer/heart issues took her.
Things I noted while mum was still alive:
1. Remembering events/people at random. Totally unrelated to current circumstances, and being really pleased (so I had to stop asking what that had to do with whatever we had been talking about)
2. Had to stop myself challenging/questioning her thought process - you won’t persuade them otherwise.
3. On the accusations she had made - not to agree/reinforce her beliefs (so often dismiss them/change subject). Luckily the helper was brilliant/had a lot of experience with previous patients.
4. My mum had wanted to move to somewhere better suited to her physical needs as they likely needed to ramp up. The vascular dementia (looking back it had started the year before) meant she didn’t settle/added to the mental strain she was under. Staff on-site were brilliant liaising with GP (brilliant/ Social services (not so brilliant v) constantly saying mums behaviour could be down to a water infection ... FFS !!
Advice for you/and the OP
1. Don’t tackle this yourself. GP/Social Services are there for the patient and you. Money/help will be there for extra help. Don’t be dcared to speak direct (Conversation of concern)
2. Try not to take the hurtful things to heart.
Best of luck
Lim said:
Worst part for me is the aggression stage. Not sure how common that is. It’s got a bit better now but there were times the police were involved.... it’s so hard seeing that unfold 
It was explained to me that when they are aware/confused to as to why they believe things - that the aggression (and in some cases physical as well I’m afraid to say) it’s the fight/flight - go on the offensive.For lack of a better way of saying - it’s easier for them when they do forget/lose their marbles - then they are more likely to accept/not question/lash out.
Lim said:
Worst part for me is the aggression stage. Not sure how common that is. It’s got a bit better now but there were times the police were involved.... it’s so hard seeing that unfold
That’s pretty typical. Because they can usually remember stuff from ages ago, but find themselves unable to function in the here and now, they often get confused, upset / angry, and will lash out quite readily. If you know it’s going to happen, and can accept that it’s part of ‘the game’ it makes it easier to deal with.MiL has FiL who is still lucid to care for her currently, plus of course MrsWorsy. So far we have only got to the confused stage. She'll not recognise me or MrsWorsy on occasions, and has trouble with phone calls, saying I'll get your Grandad rather than Dad.
She's always been a bit cantankerous, so episodes where she gets angry because we've popped shopping round and not said hello we can't tell if part of the illness
She's always been a bit cantankerous, so episodes where she gets angry because we've popped shopping round and not said hello we can't tell if part of the illness
My Grandma had vascula dementia and died in her early 90s. She'd had a long career in the MOD and remained very active into and beyond retirement well into her 70s and 80s (she was a board member of RAFA, for example).
She lived on her own right up until about 6 months before she died at 93. She'd been getting more and more forgetful for a few years but eventually had stopped looking after herself. She went to live with my sister.
It was a fairly swift downhill, with TIAs, lucid then not lucid, psychopathic episodes, the lot. It used to infuriate my sister because she always remembered me and my kids, but half the time thought my sister was a nurse.
My MiL died about 18 months ago at 70 odd with Parkinsons and early onset dementia. She had been a headmistress and, like my grandmother, was a very intelligent and strong willed woman.
Horrible diseases, but at least in each case my relatives didn't have to live with the worst of it for very long. Some people last years.
She lived on her own right up until about 6 months before she died at 93. She'd been getting more and more forgetful for a few years but eventually had stopped looking after herself. She went to live with my sister.
It was a fairly swift downhill, with TIAs, lucid then not lucid, psychopathic episodes, the lot. It used to infuriate my sister because she always remembered me and my kids, but half the time thought my sister was a nurse.
My MiL died about 18 months ago at 70 odd with Parkinsons and early onset dementia. She had been a headmistress and, like my grandmother, was a very intelligent and strong willed woman.
Horrible diseases, but at least in each case my relatives didn't have to live with the worst of it for very long. Some people last years.
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.
So sorry to read this, how upsetting for all of you. h.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 s
t.f
king disease can fk right off.It's horrible, the person you know and have known all your life becomes someone completely different with multiple personalities at different times of the day. There are plenty of examples of classic dementia behaviour I see every day and it's can be very trying. They end up living in there own little world and there's nothing you can do to change it. I have carers coming in 4 times a day that do take a lot of the burden away otherwise I don't think I would have been able to cope with it whilst still working .
Edited by 2172cc on Friday 5th February 18:58
One of the hardest decisions you will have to make will be when to move her into a care home!
I don’t understand how some people deteriorate faster than others with the same disease. My mother was diagnosed with vascular dementia about 5 years ago and has been in a home for the last two.
How she is still alive is a mystery. She cannot walk at all, or even move her limbs now. Her brain doesn’t know how to move them anymore. She cannot talk, has to wear pads and has lost the ability to chew food. She is spoon fed with protein drinks by the staff which can take up to an hour.
Once she loses the ability to swallow food, then the end will come quickly. Food gets into the lungs and causes an infection.
We have agreed with the care home that she will not be admitted to hospital when this happens. Putting her on a drip is out of the question. She will not die in hospital!
All the best OP, it’s a bugger of an illness.
I don’t understand how some people deteriorate faster than others with the same disease. My mother was diagnosed with vascular dementia about 5 years ago and has been in a home for the last two.
How she is still alive is a mystery. She cannot walk at all, or even move her limbs now. Her brain doesn’t know how to move them anymore. She cannot talk, has to wear pads and has lost the ability to chew food. She is spoon fed with protein drinks by the staff which can take up to an hour.
Once she loses the ability to swallow food, then the end will come quickly. Food gets into the lungs and causes an infection.
We have agreed with the care home that she will not be admitted to hospital when this happens. Putting her on a drip is out of the question. She will not die in hospital!
All the best OP, it’s a bugger of an illness.
My father has Vascular dementia with Alzheimer's which was diagnosed in late 2019. If we are honest with ourselves we have seen a decline over many years. I had his driving license taken off him even before the diagnosis because his driving worried me. This was the second car he wrote off in 2 weeks in 2017.
He went back to the same dealer and bought another one within a couple of days. The Honda dealership described him as their best customer.
When it was diagnosed he had just moved in with his sister who had recently lost her husband. Unfortunately, this was not a great idea and due to other family issues we had to extract him and move him to a more appropriate housing. COVID descended and complicated everything as I am based in the US and my brother is 200 miles away in the UK. With help from places we wouldn't have even thought of and support of family friends from 20-30 years ago we have moved him to a facility that will support him through his decline. Currently, he is in independent living with careers visiting daily. He loves the place because it is his own flat with a view over the countryside. The next step is in the same small complex to assisted living and then nursing.
One thing that has really stunned me was the impact of his vision on his mental state. He had cataracts operations on both eyes and and his vision deteriorated significantly. He was unable to see contrast which meant he could not see white on white. We all assumed it was a function of his dementia as was confirmed by multiple doctors and optometrists. At the end of 2020 he revisited the hospital that had done the original cataracts work and met with a new doctor. The new doctor told him he would clean the eyes up for him there and then. It has been transformational for him and his mental well being.
Now the bad bits... We have been through several care staff because he has lost his temper. Nothing violent yet but we have to be realistic. Of his team of two, one was consistent from the start. Unfortunately, recently she refused to go back because she thought he was being unreasonable. We have switched to only men now which he is responding well to. I am not sure he fully appreciates that if he screws this up we will have to move him to the next stage in the care community and he will lose another level of independence.
He went back to the same dealer and bought another one within a couple of days. The Honda dealership described him as their best customer.
When it was diagnosed he had just moved in with his sister who had recently lost her husband. Unfortunately, this was not a great idea and due to other family issues we had to extract him and move him to a more appropriate housing. COVID descended and complicated everything as I am based in the US and my brother is 200 miles away in the UK. With help from places we wouldn't have even thought of and support of family friends from 20-30 years ago we have moved him to a facility that will support him through his decline. Currently, he is in independent living with careers visiting daily. He loves the place because it is his own flat with a view over the countryside. The next step is in the same small complex to assisted living and then nursing.
One thing that has really stunned me was the impact of his vision on his mental state. He had cataracts operations on both eyes and and his vision deteriorated significantly. He was unable to see contrast which meant he could not see white on white. We all assumed it was a function of his dementia as was confirmed by multiple doctors and optometrists. At the end of 2020 he revisited the hospital that had done the original cataracts work and met with a new doctor. The new doctor told him he would clean the eyes up for him there and then. It has been transformational for him and his mental well being.
Now the bad bits... We have been through several care staff because he has lost his temper. Nothing violent yet but we have to be realistic. Of his team of two, one was consistent from the start. Unfortunately, recently she refused to go back because she thought he was being unreasonable. We have switched to only men now which he is responding well to. I am not sure he fully appreciates that if he screws this up we will have to move him to the next stage in the care community and he will lose another level of independence.
h0b0 said:
My father has Vascular dementia with Alzheimer's which was diagnosed in late 2019. If we are honest with ourselves we have seen a decline over many years. I had his driving license taken off him even before the diagnosis because his driving worried me. This was the second car he wrote off in 2 weeks in 2017.
He went back to the same dealer and bought another one within a couple of days. The Honda dealership described him as their best customer.
When it was diagnosed he had just moved in with his sister who had recently lost her husband. Unfortunately, this was not a great idea and due to other family issues we had to extract him and move him to a more appropriate housing. COVID descended and complicated everything as I am based in the US and my brother is 200 miles away in the UK. With help from places we wouldn't have even thought of and support of family friends from 20-30 years ago we have moved him to a facility that will support him through his decline. Currently, he is in independent living with careers visiting daily. He loves the place because it is his own flat with a view over the countryside. The next step is in the same small complex to assisted living and then nursing.
One thing that has really stunned me was the impact of his vision on his mental state. He had cataracts operations on both eyes and and his vision deteriorated significantly. He was unable to see contrast which meant he could not see white on white. We all assumed it was a function of his dementia as was confirmed by multiple doctors and optometrists. At the end of 2020 he revisited the hospital that had done the original cataracts work and met with a new doctor. The new doctor told him he would clean the eyes up for him there and then. It has been transformational for him and his mental well being.
Now the bad bits... We have been through several care staff because he has lost his temper. Nothing violent yet but we have to be realistic. Of his team of two, one was consistent from the start. Unfortunately, recently she refused to go back because she thought he was being unreasonable. We have switched to only men now which he is responding well to. I am not sure he fully appreciates that if he screws this up we will have to move him to the next stage in the care community and he will lose another level of independence.
Indeed the temper and really unpredictable bad moods are one of the worst aspects. It's really hard to convince yourself that's it not different person your dealing with.He went back to the same dealer and bought another one within a couple of days. The Honda dealership described him as their best customer.
When it was diagnosed he had just moved in with his sister who had recently lost her husband. Unfortunately, this was not a great idea and due to other family issues we had to extract him and move him to a more appropriate housing. COVID descended and complicated everything as I am based in the US and my brother is 200 miles away in the UK. With help from places we wouldn't have even thought of and support of family friends from 20-30 years ago we have moved him to a facility that will support him through his decline. Currently, he is in independent living with careers visiting daily. He loves the place because it is his own flat with a view over the countryside. The next step is in the same small complex to assisted living and then nursing.
One thing that has really stunned me was the impact of his vision on his mental state. He had cataracts operations on both eyes and and his vision deteriorated significantly. He was unable to see contrast which meant he could not see white on white. We all assumed it was a function of his dementia as was confirmed by multiple doctors and optometrists. At the end of 2020 he revisited the hospital that had done the original cataracts work and met with a new doctor. The new doctor told him he would clean the eyes up for him there and then. It has been transformational for him and his mental well being.
Now the bad bits... We have been through several care staff because he has lost his temper. Nothing violent yet but we have to be realistic. Of his team of two, one was consistent from the start. Unfortunately, recently she refused to go back because she thought he was being unreasonable. We have switched to only men now which he is responding well to. I am not sure he fully appreciates that if he screws this up we will have to move him to the next stage in the care community and he will lose another level of independence.
h0b0 said:
My father has Vascular dementia with Alzheimer's which was diagnosed in late 2019. If we are honest with ourselves we have seen a decline over many years. I had his driving license taken off him even before the diagnosis because his driving worried me. This was the second car he wrote off in 2 weeks in 2017.
He went back to the same dealer and bought another one within a couple of days. The Honda dealership described him as their best customer.
When it was diagnosed he had just moved in with his sister who had recently lost her husband. Unfortunately, this was not a great idea and due to other family issues we had to extract him and move him to a more appropriate housing. COVID descended and complicated everything as I am based in the US and my brother is 200 miles away in the UK. With help from places we wouldn't have even thought of and support of family friends from 20-30 years ago we have moved him to a facility that will support him through his decline. Currently, he is in independent living with careers visiting daily. He loves the place because it is his own flat with a view over the countryside. The next step is in the same small complex to assisted living and then nursing.
One thing that has really stunned me was the impact of his vision on his mental state. He had cataracts operations on both eyes and and his vision deteriorated significantly. He was unable to see contrast which meant he could not see white on white. We all assumed it was a function of his dementia as was confirmed by multiple doctors and optometrists. At the end of 2020 he revisited the hospital that had done the original cataracts work and met with a new doctor. The new doctor told him he would clean the eyes up for him there and then. It has been transformational for him and his mental well being.
Now the bad bits... We have been through several care staff because he has lost his temper. Nothing violent yet but we have to be realistic. Of his team of two, one was consistent from the start. Unfortunately, recently she refused to go back because she thought he was being unreasonable. We have switched to only men now which he is responding well to. I am not sure he fully appreciates that if he screws this up we will have to move him to the next stage in the care community and he will lose another level of independence.
My old man caused a horrific accident when he crashed his car driving the wrong way on a road he used to know well, it was at that point he ended up in a care home.He went back to the same dealer and bought another one within a couple of days. The Honda dealership described him as their best customer.
When it was diagnosed he had just moved in with his sister who had recently lost her husband. Unfortunately, this was not a great idea and due to other family issues we had to extract him and move him to a more appropriate housing. COVID descended and complicated everything as I am based in the US and my brother is 200 miles away in the UK. With help from places we wouldn't have even thought of and support of family friends from 20-30 years ago we have moved him to a facility that will support him through his decline. Currently, he is in independent living with careers visiting daily. He loves the place because it is his own flat with a view over the countryside. The next step is in the same small complex to assisted living and then nursing.
One thing that has really stunned me was the impact of his vision on his mental state. He had cataracts operations on both eyes and and his vision deteriorated significantly. He was unable to see contrast which meant he could not see white on white. We all assumed it was a function of his dementia as was confirmed by multiple doctors and optometrists. At the end of 2020 he revisited the hospital that had done the original cataracts work and met with a new doctor. The new doctor told him he would clean the eyes up for him there and then. It has been transformational for him and his mental well being.
Now the bad bits... We have been through several care staff because he has lost his temper. Nothing violent yet but we have to be realistic. Of his team of two, one was consistent from the start. Unfortunately, recently she refused to go back because she thought he was being unreasonable. We have switched to only men now which he is responding well to. I am not sure he fully appreciates that if he screws this up we will have to move him to the next stage in the care community and he will lose another level of independence.
My wife has had it for 6 years now, she was 59 when diagnosed, its been a terrible road to travel, she is in a care home and as one poster said above moving her from home to the care home was the hardest thing ive ever done, even typing about it brings it all back and brings tears to my eyes right now.
Indoraptor said:
My dad died a couple of years back, primarily of complications arising from vascular dementia. There wasn’t much anyone could do, regarding ‘treatments’ as there aren’t any. Adding Alzheimer's to the equation will complicate things, but almost certainly speed the demise along as well. Alzheimer’s is a terminal condition, the medics can make her as comfortable as possible, but ultimately, it is a terminal condition, and the patient loses pretty much all of their short term memory capabilities. The long term memory is often not so severely affected though, so they will remember things from years ago, but not remember who you are, within a few minutes. It’s a really difficult thing to deal with.
SWMBO's uncle has it often doesn't even recognize his wife and asks her where [insert her name] is.TX.
My mother is 86, and has had worsening dementia for about five years now. We (my girlfriend and I) live with her full-time. Fortunately she thinks I'm my late father, which means she does what I ask/tell her to do without too much difficulty. I think she thinks my girlfriend is some sort of hired help.
She is also incontinent at night, which despite nappies and absorbent mats means almost daily bedding changes. Despite living in the same house she has been in for the last twenty five years, she thinks she's just visiting and that her real ome is where she grew up before the war. She has to ask us for directions to the toilet more or less every time, although if we leave the light on and she follows the arrows and toilet signs at night, she occasionally makes it there from her bedroom at night. On other occasions she just wanders into any room, pulls down her pyjamas and nappy and does it wherever.
The worst thing about lockdown is that she can't go to a daycare centre where the interactions with others would keep her occupied. We've tried music etc. but she doesn't follow TV programmes unless she's sitting with someone.
Apart from Vera Lynn and occasionally swing music videos, I found Monty Python (Life of Brian and Holy Grail) were the ones she enjoyed most, as each scenes is a short sketch which she could follow, although she almost certainly didn't get the whole story.
Reassuring hugs are the best thing when she is upset. My mother was never a particularly affectionate parent, but that doesn't seem to matter now. Don't try to have an argument, you will just stress each other out. Avoid having TV programmes on which contain arguing, such as soap operas, reality TV, etc. Wildlife documentaries and Youtube videos of funny animal stuff are best.
Having a pet around gives a person with dementia something to focus on. Probably a dog or a budgie, as they will be around more than a cat. My mum calls our dog by my name for some reason!
One more thing, which from discussions is quite common. Mum picks up envelopes, handbags, shopping bags etc. and fills them with random stuff; tissues, pens, combs, coasters, letters, driving licences, credit cards, money, you name it. The collections will then disappear under pillows, into drawers, anywhere you least expect to find them.
Big Clive's description of the stages of dementia is the best I've come across, I strongly advise watching it. Big Clive - Dementia
She is also incontinent at night, which despite nappies and absorbent mats means almost daily bedding changes. Despite living in the same house she has been in for the last twenty five years, she thinks she's just visiting and that her real ome is where she grew up before the war. She has to ask us for directions to the toilet more or less every time, although if we leave the light on and she follows the arrows and toilet signs at night, she occasionally makes it there from her bedroom at night. On other occasions she just wanders into any room, pulls down her pyjamas and nappy and does it wherever.
The worst thing about lockdown is that she can't go to a daycare centre where the interactions with others would keep her occupied. We've tried music etc. but she doesn't follow TV programmes unless she's sitting with someone.
Apart from Vera Lynn and occasionally swing music videos, I found Monty Python (Life of Brian and Holy Grail) were the ones she enjoyed most, as each scenes is a short sketch which she could follow, although she almost certainly didn't get the whole story.
Reassuring hugs are the best thing when she is upset. My mother was never a particularly affectionate parent, but that doesn't seem to matter now. Don't try to have an argument, you will just stress each other out. Avoid having TV programmes on which contain arguing, such as soap operas, reality TV, etc. Wildlife documentaries and Youtube videos of funny animal stuff are best.
Having a pet around gives a person with dementia something to focus on. Probably a dog or a budgie, as they will be around more than a cat. My mum calls our dog by my name for some reason!
One more thing, which from discussions is quite common. Mum picks up envelopes, handbags, shopping bags etc. and fills them with random stuff; tissues, pens, combs, coasters, letters, driving licences, credit cards, money, you name it. The collections will then disappear under pillows, into drawers, anywhere you least expect to find them.
Big Clive's description of the stages of dementia is the best I've come across, I strongly advise watching it. Big Clive - Dementia
Edited by GliderRider on Saturday 6th February 01:23
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