Stages - How do we know?

[jay6]

How do we know what stage we are at with Dementia. I know it's a hard question as everyone reaches stages at different points and no one shows same but what stage is the PWD (Mine has Vascular, front affected from bleeds)

1. Never seeing they are at fault? So impossible to reason with.
2. Really verbally nasty towards me the carer, yet fine with everybody else. (Was always abusive but really escalated) I'm walking on eggshells.
3. Bed wetting?

Are these still early stage 1? Or have we now moved to stage 2?

I keep reading everything I find but still unsure.

 

[Izzy]

I used to find that my husband seemed to fit into different parts of the stages and not just one - if you see what I mean. I ended up not considering the stages and just facing each change as it came along.

I know you've read lots and I apologise if you've already seen it.

The progression, signs and stages of dementia

Dementia is progressive. This means signs and symptoms may be relatively mild at first but they get worse with time. Dementia affects everyone differently, however it can be helpful to think of dementia progressing in 'three stages'.

www.alzheimers.org.uk

 

[jay6]

I used to find that my husband seemed to fit into different parts of the stages and not just one - if you see what I mean. I ended up not considering the stages and just facing each change as it came along.

I know you've read lots and I apologise if you've already seen it.

The progression, signs and stages of dementia

Dementia is progressive. This means signs and symptoms may be relatively mild at first but they get worse with time. Dementia affects everyone differently, however it can be helpful to think of dementia progressing in 'three stages'.

www.alzheimers.org.uk

Thanks Izzy yes have read that but still not sure if we've reached next stage here.

 

[nitram]

I didn't bother about stages.
I just compared how my wife was at a previously identifiable time eg thinking at Easter 'she could do this at Christmas', making allowances for any acute events.
I did not see any point in trying to predict what might happen next by progression through stages.

 

[tonebear]

I'm beginning to understand that the stages don't matter, unless i'm trying to explain to someone I.E. a professional, for me and my mental health just roll with what ever comes along.

 

[Agzy]

I used to find that my husband seemed to fit into different parts of the stages and not just one - if you see what I mean. I ended up not considering the stages and just facing each change as it came along.

I know you've read lots and I apologise if you've already seen it.

The progression, signs and stages of dementia

Dementia is progressive. This means signs and symptoms may be relatively mild at first but they get worse with time. Dementia affects everyone differently, however it can be helpful to think of dementia progressing in 'three stages'.

www.alzheimers.org.uk

Exactly as I do @Izzy

 

[JaxG]

My husband doesn't fit all the criteria for the moderate stages of dementia but does have some aspects. He can dress himself and is not incontinent, but he now gets lost outside the house, is forgetting to eat and drink and would never shower if I did not remind him. He struggles to follow conversations or tv programmes, has almost no short term memory, is losing his long term memory but still know his family. He seems to have no significant independent functioning but is verbally fluent and this masks much of his deterioration to others. He can still be left alone because he can take himself to the toilet and does nothing all day so is not a danger to himself but I can see a time when this will change. He has been extremely verbally and physically aggressive but the anti psychotic medication has taken this away and he is now quite passive. He's deteriorated a lot in the last 6 months but it's a really strange mix of symptoms. I imagine that it all depends on the parts of the brain being affected, and this must be different in almost every person.

 

[jay6]

Thanks @nitram @tonebear and @Agzy , I was thinking about stages as just not sure how much more I can take. If this is still very easy stage, I dread to think what's coming.

 

[jay6]

My husband doesn't fit all the criteria for the moderate stages of dementia but does have some aspects. He can dress himself and is not incontinent, but he now gets lost outside the house, is forgetting to eat and drink and would never shower if I did not remind him. He struggles to follow conversations or tv programmes, has almost no short term memory, is losing his long term memory but still know his family. He seems to have no significant independent functioning but is verbally fluent and this masks much of his deterioration to others. He can still be left alone because he can take himself to the toilet and does nothing all day so is not a danger to himself but I can see a time when this will change. He has been extremely verbally and physically aggressive but the anti psychotic medication has taken this away and he is now quite passive. He's deteriorated a lot in the last 6 months but it's a really strange mix of symptoms. I imagine that it all depends on the parts of the brain being affected, and this must be different in almost every person.

Mine has some similarities to yours. He can wash and dress but impossible to get him to shower. No eating problems but is struggling to follow TV. But struggles to get words sometimes. His short term memory isn't so good but I do sometimes wonder if he only remembers what he wants to and a bit selective.
He can get to the toilet ok during day but has to use bottles at night. Unfortunately wet the wed a few times lately and think he dribbles a bit on floor when using bottles which is probably down to loss of one arm from stroke. GP suggested a catheter as he goes every hour in night, but he's flatly refused.
I can leave him for short times as he just sits in front of TV. with no motivation to do anything else. But I do worry leaving him encase he falls because he can't get back up on his own. His mobility is increasing worsening but I'm having a go at him if I suggest anything which will help.
It's the verbal abuse which gets me most. There is absolutely no communication from OH The only time any talking starts is if I try to start a conversation, but as soon as I've said something he doesn't like he's off. Gets really abusive then totally turns it on being my fault. Stating he is the one who has said something I don't like. When I ask him to back up his statement, he can't. Nothing is EVER his fault. He has taken to telling me everybody hates me and knows what I'm like but again can't back the statement up. He has been a bit like this in past, nothing has ever been his fault but it's really escalated. So I really don't know how much is personality verses dementia.
I feel like all I ever do now is complain. Nothing I ever do is right.

 

[canary]

It's the verbal abuse which gets me most. There is absolutely no communication from OH The only time any talking starts is if I try to start a conversation, but as soon as I've said something he doesn't like he's off. Gets really abusive then totally turns it on being my fault.

I understand this.
I have now accepted that OH cannot actually engage in conversation as he has lost this skill. So I dont start conversations now. The only time that he now speaks is if he wants to tell or ask me something and I respond appropriately, or I might ask or tell him something that he needs to know. But I dont make conversation. Its lonely, but better than arguments because he doesnt understand what Im trying to convey.

 

[Lawson58]

My husband has some form of dementia but no one can attach a name to it. He was originally diagnosed as having Alzheimer’s then 9 years later considered to be no diagnosed.

So he declined slowly over 10 years but this last year he has been going downhill more quickly.

Our conversations are now pretty much about getting him organised for an appointment or something that has to be done. He tries to do crosswords but has now forgotten lots of words or as he says, he has never heard that word before. He insists he can’t see yet at his last eye test, he could read the eye chart perfectly with his glasses on.

He is retreating socially but somehow still manages to play bridge. His physical health is deteriorating quickly which complicates the picture of his dementia. So it’s impossible to say what stage he is in and really it doesn’t matter.

The important thing is to remember to cross your bridges as you come to them. Worrying about what or what might not happen is exhausting and frightening. Worry is a wasted emotion as it achieves nothing but being concerned is a different thing and allows for planning and getting organised.

Take a deep breath, now another one and now start thinking about how to move into the future. There are strategies you can use to cope with bullying and never being wrong but it takes time to work out what suits you personally.

 

[sunshine chrissy]

I didn't bother about stages.
I just compared how my wife was at a previously identifiable time eg thinking at Easter 'she could do this at Christmas', making allowances for any acute events.
I did not see any point in trying to predict what might happen next by progression through stages.

I agree,I was always trying to find info about stages 2 years ago,there are no real answers,kept a diary,still do and I can see for myself the decline when I read it back.Even the professionals have no answers for me,my husband has Frontotempural dementia,even they are puzzled by some of his behaviours,constantly trying different meds to see what works for his behaviour.I don't know what's coming next,I just get by day by day,it's all I can do though it's still hard to accept and come to terms with,he's 62,I have good days and bad days.

 

[sunshine chrissy]

I'm beginning to understand that the stages don't matter, unless i'm trying to explain to someone I.E. a professional, for me and my mental health just roll with what ever comes along.

👍

 

[sunshine chrissy]

I didn't bother about stages.
I just compared how my wife was at a previously identifiable time eg thinking at Easter 'she could do this at Christmas', making allowances for any acute events.
I did not see any point in trying to predict what might happen next by progression through stages.

👍

 

[JaxG]

Mine has some similarities to yours. He can wash and dress but impossible to get him to shower. No eating problems but is struggling to follow TV. But struggles to get words sometimes. His short term memory isn't so good but I do sometimes wonder if he only remembers what he wants to and a bit selective.
He can get to the toilet ok during day but has to use bottles at night. Unfortunately wet the wed a few times lately and think he dribbles a bit on floor when using bottles which is probably down to loss of one arm from stroke. GP suggested a catheter as he goes every hour in night, but he's flatly refused.
I can leave him for short times as he just sits in front of TV. with no motivation to do anything else. But I do worry leaving him encase he falls because he can't get back up on his own. His mobility is increasing worsening but I'm having a go at him if I suggest anything which will help.
It's the verbal abuse which gets me most. There is absolutely no communication from OH The only time any talking starts is if I try to start a conversation, but as soon as I've said something he doesn't like he's off. Gets really abusive then totally turns it on being my fault. Stating he is the one who has said something I don't like. When I ask him to back up his statement, he can't. Nothing is EVER his fault. He has taken to telling me everybody hates me and knows what I'm like but again can't back the statement up. He has been a bit like this in past, nothing has ever been his fault but it's really escalated. So I really don't know how much is personality verses dementia.
I feel like all I ever do now is complain. Nothing I ever do is righ

As others have said, I don't start conversations, any answers are as short as possible since it has been impossible to predict what might spark the rage. OH has thrown me on the floor, rammed a door into my back, barged me with his shoulder and threatened to punch me. But the years of verbal aggression were the worst, and this has been completely resolved by the use of anti psychotic medication and I wonder if this is something that might help you if you reach the point where you can no longer cope? This sort of cruelty is hard to take.

 

[Donk1]

Thanks @nitram @tonebear and @Agzy , I was thinking about stages as just not sure how much more I can take. If this is still very easy stage, I dread to think what's coming.

You are not alone in thinking that wayx

 

[Anthoula]

Following OH`s diagnosis I read what I could about the "stages" of vascular dementia, but as the years have passed I have given up thinking of stages and trying to determine which umbrella OH comes under. All I can be sure of is that it is a progressive disease and that no 2 days are alike. There are days when I can cope and there are days when I can scream. There are days when OH is much like his old self, and there are days (like to-day) when he behaves very much like a 2 year old.

 

[jay6]

As others have said, I don't start conversations, any answers are as short as possible since it has been impossible to predict what might spark the rage. OH has thrown me on the floor, rammed a door into my back, barged me with his shoulder and threatened to punch me. But the years of verbal aggression were the worst, and this has been completely resolved by the use of anti psychotic medication and I wonder if this is something that might help you if you reach the point where you can no longer cope? This sort of cruelty is hard to take.

As it's so hard to actually speak to the dementia doctor, I have e-mailed him to ask if OH can be put on meds. He was put on one that had no effect so was taken off but I've now ask if there is something else they can prescribe. Don't know how long it will be before I get an answer though.

 

[jay6]

@Donk1 re: You are not alone in thinking that wayx
unfortunately there are too many of us struggling. I think as long as GP's etc. know they have someone at home, we just get 'left to it'

@Anthoula I think I have more days trying to deal with a 2 year old than adult. Funny how he completely changes in other company though.

 

[JaxG]

As it's so hard to actually speak to the dementia doctor, I have e-mailed him to ask if OH can be put on meds. He was put on one that had no effect so was taken off but I've now ask if there is something else they can prescribe. Don't know how long it will be before I get an answer though.

I think if you call your doctor and say you can't cope any more, that you will leave if you don't get help, the system kicks in, it becomes an emergency and the help speeds up. That's what I did and thankfully the Older Adult Mental health team got involved. The SW was wonderful, but I've just been signed off now and feeling a bit lost and 'abandoned'!!