• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Stage five ad

devorah

Registered User
Sep 25, 2013
9
0
Can someone tell me if the geriatrician can know exactly what stage AD my mother is at when they see her for 45 minutes and I see her every day for years? I guess it is possible ts to be partially stage 5 mixed in with another stage. My mother can still remember most close family members' names when she looks at photos but she doesn't remember how to lie down properly in the bed, or when to go to the washroom, or how to get dressed, and keeps asking "what do I do?". She is hardly eating anymore, except for anything sweet, i.e. ice cream, cake, cookies, candies. She doesn't seem to like any food anymore. Does anyone have an idea what stage this sounds like?
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
Hi Devorah,

You ask a very good question.

Of course nobody can know exactly what stage a person is in because there are no definite stages. Some people believe in a 3 stage passage with dementia, some 7, some 9.

Any discussion of 'stages' is just an attempt to group together a number of common symptoms to provide some sort of awareness of how far into the process someone is. If someone is in stage 2 of a 3 stage process then they may or may not be at stage 5 or 6 of a 7 stage process.

In reality, each journey is slightly different, with some things that may appear to be one stage for one person appearing only in another one at a different stage.

While it is good to have some idea of a journey, I think it is better to look at particular things - eating, etc - and try to make them better in some way. Certainly tastes change but if so, just go with what works. No need for the 5 a day rule, and if they want cream buns for every meal, try to get a quantity discount on the buns!

Dementia isn't all about memory by any means. It is not about misplacing a key - it is more like wondering what on earth a key is for that can get confused.

You will probably learn more here on TP about managing these things that any 'professional' will ever pass on.

I hope this helps, just a little.
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
0
At the beginning of Mum's dementia (Ad plus VasD), I wanted some kind of idea what the route ahead of us was ... then the 7 stage path was a helpful guide.

Now Mum's fairly late on into the dementia (stage 5? stage 6?), I've come to realise "experientially" the idea of stages is only a rough guide. Mum can't remember she needs to go to the loo or what she's read 10 seconds earlier BUT there are still flashes of her earlier warm, caring self (as well as times when she's absolutely horrid), she's still got a far-ranging vocabulary and she reads fluently.
 

sleepless

Registered User
Feb 19, 2010
3,223
0
The Sweet North
Bruce, you wrote

'Dementia isn't all about memory by any means. It is not about misplacing a key - it is more like wondering what on earth a key is for that can get confused.

You will probably learn more here on TP about managing these things that any 'professional' will ever pass on.'

A wealth of experience has led to your understanding of dementia, and you demonstrate this so well in these two paragraphs.
 

marsaday

Registered User
Mar 2, 2012
541
0
I understand the need to put them at a stage. I think it helps us face what might be to come. But they are all so different.

I would put my Mum at stage stage 6 for some things but definitely 7 for others. She has recurrent UTI's - speech not great though wants to tell you something and stops halfway through - Can't prepare any food and needs prompting with eating - Can't do any personal grooming or dressing and, though not fully incontinent yet, has accidents at night and needs full guidance in the bathroom- mobility is decreasing as she walks with shuffling steps and needs to hold on to someone. But she still knows who most of her immediate family are-sons/me/brother/sister even nieces. This surprises me. I think she has forgotten the youngest grandchild (15 yrs old now). Also can't follow TV or read. BTW she is in a nursing home now and boy she still knows how complain about that.

You don't mention about incontinence. Can your Mum prepare the foods that she eats even though they are simple or does she know where to go and get them and help herself? How is her speech and mobility?
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
At the beginning of Mum's dementia (Ad plus VasD), I wanted some kind of idea what the route ahead of us was ... then the 7 stage path was a helpful guide.

Now Mum's fairly late on into the dementia (stage 5? stage 6?), I've come to realise "experientially" the idea of stages is only a rough guide. Mum can't remember she needs to go to the loo or what she's read 10 seconds earlier BUT there are still flashes of her earlier warm, caring self (as well as times when she's absolutely horrid), she's still got a far-ranging vocabulary and she reads fluently.

Sounds just like my MIL!
 

stillcaring

Registered User
Sep 4, 2011
215
0
it is fascinating how different people lose different abilities first

my mum is still cooking for herself, continent, able to dress herself (though not always in appropriate / clean things), runs the washing machine every Monday etc etc.

But she doesn't always know who I am, isn't sure if she was ever married, doesn't have the concentration to read or watch telly or sit still for more than about 30 seconds

her speech is fine, but she is starting to shuffle when she walks

we have repetitive conversations and she is now starting to lose earlier memories, like being married, how many brothers / sisters she had, where she lived

you can't put a stage on something so varied though I guess we all want to so we can put ourselves in a category (I care for a stage 5 / 6 etc) and also to know the future. Just one of the many things that's tough about this horrid disease.
 

jaymor

Volunteer Moderator
Jul 14, 2006
15,162
0
South Staffordshire
it is fascinating how different people lose different abilities first

my mum is still cooking for herself, continent, able to dress herself (though not always in appropriate / clean things), runs the washing machine every Monday etc etc.

But she doesn't always know who I am, isn't sure if she was ever married, doesn't have the concentration to read or watch telly or sit still for more than about 30 seconds

her speech is fine, but she is starting to shuffle when she walks

we have repetitive conversations and she is now starting to lose earlier memories, like being married, how many brothers / sisters she had, where she lived

you can't put a stage on something so varied though I guess we all want to so we can put ourselves in a category (I care for a stage 5 / 6 etc) and also to know the future. Just one of the many things that's tough about this horrid disease.

I have read everything I can on dementia in all it's forms since my husband was diagnosed 8 years ago. The only thing I have not looked up is the stages of the disease. As you say every sufferer of this horrid disease travels the journey differently. I know where the journey ends, we live each day as it comes and personally I don't want to know which stage he is at. If dementia had never entered our lives would any of us thought about stages, no I think we all would just be getting on with living. For me stages of dementia is certainly a negative.

Jay x


Sent from my iPad using Talking Point mobile app
 

Brucie

Registered User
Jan 31, 2004
12,413
0
near London
The concept of stages can be useful; it is simply a back of the envelope estimate. However, stages do provide an indication of the range of ways a person may be affected by their dementia.

Knowledge of what may happen in the future can be beneficial for family in coming to terms with the illness.

I had over 20 years to mull over all this as my late wife's dementia developed. The one thing nobody could tell me was when it would all end. In retrospect, that was probably a good thing.
 

Padraig

Registered User
Dec 10, 2009
1,038
0
Hereford
Jay, Very well put. Why would anyone wish to know about stages? Certainly I would not wish to know, especially from reading many of the posts on here. Is it any wonder so many loved ones live in denial? The fear of being 'put away', fear of losing control and not wishing to be a burden on a family member.
Personally I knew nothing of the stages, nor did I wish to and like my University of Life education I lived each day at a time and towards the end each moment of 'the NOW'. I observed, listened, asked questions of myself, then learned.
By the time I came to use the Internet we had almost reached the end. I never came to give or receive advice, but to relate some of my experiences of caring all the way. How can people give advice about an individual they don't personally know?
Some of us have an advantage, I knew my wife since she was 18 and married her when she was 21. We were blessed with 52 years marriage, which included the final 13 or more with her AD.
In my case I can say; thank God I ignored doctor's advice as they lacked the personal experience. Sorry I view doctors just like any other profession, some good, bad and indifferent. They just might be having a bad day at home and the quick and easy manner to move some patients on, is to prescribe drugs. It's a stressful job.
I accepted there is only one end to AD and learned to expect the unexpected then learned another lesson, always knowing time was running out. When the end did come, I had few regrets in having cared in my own way.
The big pity was that outsiders were unaware how disruptive they could be. Lone caring takes up every minuet of each day with washing, ironing, house work, shopping, cooking etc etc. Sorry if this seems blunt but it's how it is.
 

Noorza

Registered User
Jun 8, 2012
6,542
0
Someone once likened mental health issues to the Olympic rings - with rings 1 3 and 5 overlapped and joined by rings 2 and 4 - that's how I see the stages of AD or dementia with the stages overlapping but general trends are there, those trends being different in everyone.
 

marsaday

Registered User
Mar 2, 2012
541
0
In response to Padraig's question: Why would anyone want to know about the stages?

I would say: Why would anyone not want to know?

I am the sort of person who wants to be armed with as much info as possible about anything that affects me. It's just a natural curiosity. Unlike Jay, I just couldn't not look up the stages.

We are all different indeed.
 

devorah

Registered User
Sep 25, 2013
9
0
I understand the need to put them at a stage. I think it helps us face what might be to come. But they are all so different.

I would put my Mum at stage stage 6 for some things but definitely 7 for others. She has recurrent UTI's - speech not great though wants to tell you something and stops halfway through - Can't prepare any food and needs prompting with eating - Can't do any personal grooming or dressing and, though not fully incontinent yet, has accidents at night and needs full guidance in the bathroom- mobility is decreasing as she walks with shuffling steps and needs to hold on to someone. But she still knows who most of her immediate family are-sons/me/brother/sister even nieces. This surprises me. I think she has forgotten the youngest grandchild (15 yrs old now). Also can't follow TV or read. BTW she is in a nursing home now and boy she still knows how complain about that.

You don't mention about incontinence. Can your Mum prepare the foods that she eats even though they are simple or does she know where to go and get them and help herself? How is her speech and mobility?

My mother is in a retirement home with extra care as she requires help getting dressed and needs someone to bring her to the dining room. She won't leave her room without someone being with her. She is in the RH now for three weeks. She was extremely depressed at the beginning and all she kept saying was she hates it there and wants to go back to her own place. Well three weeks later and she is not complaining anymore about wanting to go home. Three weeks ago she never used a walker, although she had one in her condo for 2 years but refused to use it. Now she cannot walk without it. She shuffles when she walks, does not really speak unless asked a question, only likes to eat sweets. Some days she can use the bathroom herself and some days she has no clue what to do. She kept throwing her underwear in the garbage and finally I bought her pull ups (disposable underwear). She has food in her fridge in her residence but would never even open the fridge. All she wants to do is look at photographs of her family over and over again and points to each person and remembers most of their names. She used to love watching TV and read the newspaper every day. Now she does not watch TV or read. All she seems to want to do is sleep or look at photos. At least she smiles now if you smile at her. The other day as I helped her dress, I thought to myself how many years ago, the situation would be reversed, and who would have ever believed that I would have to be helping her get dressed? What a heartbreaking experience:-(
 

Padraig

Registered User
Dec 10, 2009
1,038
0
Hereford
Why would anyone not want to know?

You answered your own question: we are all different. I'm only too aware that I'm very much different to most people. My outlook on life does not conform to the norm, and therefore my perspective and approach differs. In the hope of helping others I try to pass on some of what I learned while caring for my wife.

As for why would I not wish to know? Who knows what tomorrow will bring? Live for today, what will be will be. After my wife passed away I had a check-up and it was discovered that I had stomach cancer. Was I shocked? No, just one more challenge, and the positive aspect was, that it was not discovered till after my caring days. Now I live in daily pain without any stomach. Support: what support? That's OK, I learned to cope on my own from early childhood. With any look I'll soon join my wife. In the meanwhile I'll keep on running. I wish you well and the strength you seek.
 

jaymor

Volunteer Moderator
Jul 14, 2006
15,162
0
South Staffordshire
In response to Padraig's question: Why would anyone want to know about the stages?

I would say: Why would anyone not want to know?

I am the sort of person who wants to be armed with as much info as possible about anything that affects me. It's just a natural curiosity. Unlike Jay, I just couldn't not look up the stages.

We are all different indeed.

Marsaday,

I too am someone who wants to be armed with as much information as possible which is what I put in my original post but for me knowing what stage he is at wont help me in any way. I see it as a countdown, like counting down the months to a holiday but not with the same final result.

I just choose to travel the journey with him in days, weeks and hopefully years, just not in stages. From the Olympic symbol description I understand there are 7 stages and still don't know how it will help me knowing whether he is at stage 3 or stage 6.

As you say we are all different and it would be a very boring world if we were all the same and had nothing to debate.

Take care,


Jay
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,272
0
71
Dundee
I just choose to travel the journey with him in days, weeks and hopefully years, just not in stages. From the Olympic symbol description I understand there are 7 stages and still don't know how it will help me knowing whether he is at stage 3 or stage 6.

That's exactly how I play it Jay.
 

Noorza

Registered User
Jun 8, 2012
6,542
0
Marsaday,

I too am someone who wants to be armed with as much information as possible which is what I put in my original post but for me knowing what stage he is at wont help me in any way. I see it as a countdown, like counting down the months to a holiday but not with the same final result.

I just choose to travel the journey with him in days, weeks and hopefully years, just not in stages. From the Olympic symbol description I understand there are 7 stages and still don't know how it will help me knowing whether he is at stage 3 or stage 6.

As you say we are all different and it would be a very boring world if we were all the same and had nothing to debate.

Take care,


Jay

The Olympic ring analogy helped me to understand how mental health has many overlaps and there are no direct measurable stages. Sorry if the analogy didn't work but I know I find it hard to pinpoint a stage, as the behaviour also fluctuates.
 

AlsoConfused

Registered User
Sep 17, 2010
1,953
0
I think we're each trying to make the unbearable a little more so, whichever strategy we follow.
I need context and as much certainty as I can get - so finding out about dementia was an important way for me to come to terms with what was happening to Mum (and therefore to the rest of the family). Other people cope better if they only deal with what's happening now.