Question Time for Carers

[Sam Luvit]

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

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

 

[Agzy]

I’ve been trying to find other fellow sufferers of dementia, to share our experiences in hope that together we can do something positive about it.

However, I’m not having much success, yet, but I will keep trying. So, while I continue on this task, I realised that there is another avenue to explore in regard to all things dementia related and that is of course Carers.

Carers’ have a unique and extensive knowledge, based on first hand experience. I’m hoping you will help me by sharing that knowledge and expertise. On this forum alone, there are over 64 thousand registered members and together with my own findings, evidence suggest that the majority of those registered are Carers. This means that a far greater pool of knowledge exist here, than any I would hope to find related directly to people sufferering first hand with dementia.

This is how I would like you to help;

Each week I will produce a small set of questions. I wish to keep the number of questions low, so I can focus on a theme for the questions and avoid the drudgery of that tedious batch of questions that jump from one theme to another. Hopefully by doing it this way, you are more likely to be willing to contribute. I’m hoping that, because it will only require a very short amount of your time to respond, a large group will be happy and keen to get involved and the higher the response the greater the related outcome.

I will require no names, or any personal information. The answers given will be based solely on trust. I don’t see that anyone in the roll of a Carer, or patient, would want to falsify answers. I was told that to give any value to the information I gained, I would need to verify the source of that information. This is true if I was taking an academic path, but I’m not. This is purely for the benefit of sharing collated information to those that could hopefully benefit from it ie, those that have a direct, or indirect connection with some form of dementia, now and in the even those to come in the future. I think it is important to accept your sincerity and give value to the answers you give and think they deserve.

As the answers to the questions arrive, I will collate the findings and keep you informed of the progress and outcome. I want people to be aware of the results and maybe make conclusions based on those findings, plus raise concerns, ideas and suggestions, that will lead to further questions that can be set here at a future date. In this way I see the information and findings developing as we progress, rather that setting out to answer a singualr question.

I hope that you will to accept my explanation and will happily take part. I’m excited to see how the response and method develops. If you have any ideas, suggestions, possible questions, then I would be truly grateful to receive them?

Please note: It is obvious that the response of a Carer, may be different to that of anyone with dementia, so I would ask that I start each week’s questions by asking you to say if you are a Carer, or have dementia.

The questions relate to the person being cared for, or the person with dementia.

Please try and keep your anwsers concise as possible.

Below are this week’s questions.

Are you, or have you been a Carer, or do you have Dementia?

1. What is the name of the Dementia?

2. What was the first signs, or symptoms you noticed?

3. How many years ago did you first notice these signs, or symptoms?

1. I am a carer
2. Alzheimer’s disease
3. Memory issues in small ways, anger and mood swing issues in major way and very out of Character.
4. Diagnosed 4 years ago after nearly 2 years of worsening first signs/symptoms.

 

[Chaplin]

HI @Chaplin

Thank you for taking the time to answer, much appreciated!

You Mum had her operation 40 years ago, but the you noticed the first signs only in 2011, so do you think this is connected?

I think there is a connection between epilepsy and dementia, but if there is, the question has to be, what can be done about it? My epilepsy seems to reset my brain. If I was a computer, it would be like rebooting me, by turning the mains off. I think if this is a continual process, the brain cells becoming increasingly damaged and this leads, possibly, to dementia symptoms. So, medication to control these seizures seems to be a good thing. My own medication helps greatly with grand mal seizures, but not the petit mals, the small, absence type seizures I get and these seem to have this same rebooting problem.

Apathy and lack of interest is a common symptom you hear a lot. It seems that this is almost like a shutting down. For me I find that there are moments when I start to becoming withdrawn, as though I’m going into a low power state. I could eagerly just sit and the day would go by and really, I don’t think I would notice this happening! I have to have a planned day and make sure I stick to it. I have continual reminders on my phone, watch and iPad. My life is based on the calendar and keeping active, both mentally and physically!

I don’t think I have heard of ketoacidosis in relation to dementia, but it is about the sugar in the body, or more the lack of the bodies ability to produce enough insulin, which can cause problems in the brain.

So the diagnosis was in 2015, how is your Mum now, well I hope?

Please stay safe and keep well!

Richard
hi, no idea if there is any connection between the tumour and dementia, I was merely making the point the doctors dismissed any of our concerns about her behavioural changes and memory issues as all related to the ‘damage’ caused by removing the tumour.
Mum is type 2 diabetic, she had been unwell with sickness bug and in her sleep she has a seizure and was taken to hospital who said she had ketoacidosis and had the seizure not woke my dad she probably wouldn’t of survived!
Sadly mum has deteriorated a lot in the past 2 years or so and is now in a residential care home.

 

[Bikerbeth]

Mum was diagnosed with Alzheimer’s officially Jan2019
Mum made an appointment with her GP in Sept 2018 after staying with her sister in the August who she knew had Vascular Dementia and Mum recognised that she had some similar issues, mainly being forgetful. Although I visited Mum about once a month I was totally ignorant of the situation really until we spent 24/7 for 12 weeks in Feb 2019 when she had cataract operations. I then realised apart from being forgetful she could no longer cook (although could for a while heat food in the microwave) and had lost other cognitive skills - so could not follow instructions

 

[Mousehill]

Hi @NotTooLate and many thanks for your response. I'm actually pretty sure that, unfortunately, the macular degeneration was a big red herring when it came to identifying the problems mum was having. When she was first diagnosed, she took it very well and did all she could to mitigate against the effects, like eating leafy greens, wearing sun glasses etc. I've no doubt, as you say, that it was a blow to her and did curtail her enjoyment, but here's the thing...

Mum has declined these last 12 months or so, but looking back, she had her fair share of days with dad when he was alive when she struggled just as much as she does now on her bad days. Again, I've no doubt that losing him did knock her massively, but again, I also think it masked the complexity and depth of her problems because each time I tried to get cousins and even the GP to listen to my concerns, I was patted on the head and told it was 'just shock'.

Looking back, there have been so many missed opportunities by Social Services and the NHS, I could literally scream. Maybe I was too soft and polite, because I was (and still am to an extent) afraid of being seen as 'a nuisance' and not taken seriously at all.

Firstly, when I called Social Services round they did an assessment and despite me explaining very clearly the problems mum was facing, they based everything on the MD, to the extent they actually turned up with indicator stickers for using the cooker even though she'd actually forgotten how to use it and had been regularly under, or over-cooking food for dad for the past 12 months+ and they were more or less relying on ready-meals in the microwave.

No matter what I said, the starting point was always the MD!

Secondly, to get a blue badge so I could take mum out and about, she had to go to the local town to be referred by her optician, which in itself was a drama, as she couldn't walk far at all and really struggled. She was referred to the hospital and the consultant put her through the full range of eye tests and examinations and concluded that actually, yes, she has MD, but it wasn't at all advanced. Her eyesight itself was very good for her age, as was her general health and there was no way she could be given a diagnosis of visual impairment - so bye bye blue badge hopes!

I remember saying, "but mum can't see! She can't manage!" only to be told rather bluntly, "Well, it must be the way her brain picks up things from her eyes because her eyes are fine."

"What's the next step?" I asked. She shrugged and said it wasn't her department, but maybe neurology.

Again, I questioned the GP and Social Services and again, I was told it was 'shock' 'grief' 'poor eyesight'. The GP said I could try Memory Clinic, but mum would have to go of her own choosing and she chose not to for some considerable time!

I just wish that back when dad was alive, someone - optician, GP? had questioned a bit more deeply about the level of mum's MD and what difficulties she was actually facing. I try hard to make sure she has things to do when she's feeling up to it and that does make a huge difference. We've been making cornflake crunch cakes recently and rhubarb crumbles and doing some hand-knitting with huge wool, so I can make the loops and mum can pull the yarn through.

If there was one thing I could change about dementia care and awareness, it would be better understanding and working between opticians, GPs and Memory Clinic. It was just taken as a 'given' that because mum has MD, any visual and spatial problems had to be MD. Nobody actually questioned why the extent of the MD and the extent of her difficulties didn't match at all. When we finally got to Memory Clinic, I brought her eye test results with me, to show how good her eyesight actually is and the nurse just handed them back, saying she didn't understand eye tests!

The things that throw mum are more often the little things - specifically, trying to cope with people in the room who (in her words) 'yap' all the time! She can't follow a conversation with more than one person and although she does enjoy the idea of visitors, it means she quickly finds them hard work and with all the good will in the world, she just can't follow what they are saying, or find the words in time to reply. Likewise, she enjoys a little trip out every now and then, but there's always the risk of the 'grabbers' - those well-meaning souls who grab her by the arm and talk non-stop when poor mum just needs little prompts and time for the prompts to sink in! Life is about mitigating the yappers and the grabbers for us

 

[Woo2]

After reading @mousehills post i thought I would let you know about a friend , He was 82 but had macular dengeneration and bladder cancer , the only thing his family notices was a complete change of personality , no empathy , harsh at times , he lost his wife and was ok for a while , he then developed double incontinence which was put down to recurring bladder burning for cancer treatment , the literally within a month he had a fall , taken to hospital , found a tumour in his bowel , had that removed and he developed delirium , moved from hospital in to a home and died within 4 months , never diagnosed with dementia although every health professional presumed he had it . Don’t know if this helps at all it was just seeing the mention of macular degeneration that made me mention it .

 

[Countryboy]

I’ve been trying to find other fellow sufferers of dementia, to share our experiences in hope that together we can do something positive about it.

However, I’m not having much success, yet, but I will keep trying. So, while I continue on this task, I realised that there is another avenue to explore in regard to all things dementia related and that is of course Carers.

Carers’ have a unique and extensive knowledge, based on first hand experience. I’m hoping you will help me by sharing that knowledge and expertise. On this forum alone, there are over 64 thousand registered members and together with my own findings, evidence suggest that the majority of those registered are Carers. This means that a far greater pool of knowledge exist here, than any I would hope to find related directly to people sufferering first hand with dementia.

This is how I would like you to help;

Each week I will produce a small set of questions. I wish to keep the number of questions low, so I can focus on a theme for the questions and avoid the drudgery of that tedious batch of questions that jump from one theme to another. Hopefully by doing it this way, you are more likely to be willing to contribute. I’m hoping that, because it will only require a very short amount of your time to respond, a large group will be happy and keen to get involved and the higher the response the greater the related outcome.

I will require no names, or any personal information. The answers given will be based solely on trust. I don’t see that anyone in the roll of a Carer, or patient, would want to falsify answers. I was told that to give any value to the information I gained, I would need to verify the source of that information. This is true if I was taking an academic path, but I’m not. This is purely for the benefit of sharing collated information to those that could hopefully benefit from it ie, those that have a direct, or indirect connection with some form of dementia, now and in the even those to come in the future. I think it is important to accept your sincerity and give value to the answers you give and think they deserve.

As the answers to the questions arrive, I will collate the findings and keep you informed of the progress and outcome. I want people to be aware of the results and maybe make conclusions based on those findings, plus raise concerns, ideas and suggestions, that will lead to further questions that can be set here at a future date. In this way I see the information and findings developing as we progress, rather that setting out to answer a singualr question.

I hope that you will to accept my explanation and will happily take part. I’m excited to see how the response and method develops. If you have any ideas, suggestions, possible questions, then I would be truly grateful to receive them?

Please note: It is obvious that the response of a Carer, may be different to that of anyone with dementia, so I would ask that I start each week’s questions by asking you to say if you are a Carer, or have dementia.

The questions relate to the person being cared for, or the person with dementia.

Please try and keep your anwsers concise as possible.

Below are this week’s questions.

Are you, or have you been a Carer, or do you have Dementia?

1. What is the name of the Dementia?

2. What was the first signs, or symptoms you noticed?

3. How many years ago did you first notice these signs, or symptoms?

I’ve been trying to find other fellow sufferers of dementia, to share our experiences in hope that together we can do something positive about it.

Well tell me How many with a Dignoses of Dementia did you find ???

 

[NotTooLate]

Hi @Jan L thank you for the information.

So you noticed things 20 years ago, was there anything that happen prior to this? It sounds like he could have be depressed and rightly so!?

Do your think there is a family/gene connection?

I find this point you make very interesting, ‘once it was confirmed he stopped trying!’ I think there is a lot in this. Being told you have something that has no cure, no treatment and effectively no hope to overcome, is devastating! I know, because that is what I felt and I’m sure most that get this feel the same, but I changed my outlook. When a doctor tells you that, in there opinion you have dementia, they are telling you what you already know. They repeat the signs and symptoms as if it is something they have discovered. With certain dementias’ there is quite a clear path, but for many there isn’t. You only have to read the stories here, so many similarities, but far more differences!

I was given no hope. I thought, and my son and daughter thought, it was just a matter of time, certain decline and I was going home to die!

My belief is that there is hope and for many, we can live with dementia!

You mention this loss of sight, the second case I have heard. How do you snap an optic nerve?

Scans are an amazing tool, but that is all they are. It is the user that makes it special. If they are not using it, or looking for a particular thing, they don’t see it, maybe!?

Please don’t apologies for getting your thoughts down, we don’t get the chance that often! I am terrible for rambling!

Stay safe and keep well!

Richard

 

[NotTooLate]

Hi Richard.. It was me noticed my husband forgetting how to get to familiar destination when driving.. And slow reaction.. Progressed to the ocational seeing things not there.. It took a few years for this to register as something which kept cropping up.. Then difficulty dressing.. Poss overall 3years when mobility ie walking slouched and dragging feet prompted a visit to docs.. By then I knew the outcome and just over a year ago we had the diagnosis of Lewy body dementia.. With some parkinsons symptoms.. He was 79 at the time.. Now hallucinations and paranoia have increased. But now we know how best to deal with them and other problems such as urge incontinence we deal with as we go... Hope this is helpful xx

Thank you!

 

[NotTooLate]

Hi @samluvit

Thank your for all your input, much appreciated!

It sounds as if your parent’s had a very active life. There is something here that I believe can help all of us and that is having a go at something out of our comfort zone! Our brains love to be challenged. It keeps it firing, the messages route and reroute continually, the more we do this, the greater that process develops. On the downside, I think it is when something happens to stop this happening, or we just get older and realise we can no longer take on certain challenges, but we still have to try!

I do believe there is a connection between epilepsy and dementia, this is based on my own experience and what I have read. As for the drugs, well I’m at this very moment, coming off Gabapentin, one of the four drugs I take that impact on epilepsy. Not good!

Plateauing, it does seem to be a common thing. My theory is that as the brains cells start to turn off, stop functioning, or die, this is restricted and starts in certain areas of the brain and manifest itself in particular problems, memory, spacial awareness, hallucinations etc. As more brain cells become afflicted and different parts of the brain become involved, then different signs and symptoms start to show. The time between these points are what I think as the plateauing times. As this process continues, more and more parts of the brain stop working, until a point that a rapid decline is experienced and the plateauing times become shorter in duration.

I think the problem with looking for a cure, is that I think too often, it’s too late! What I mean by this is, when we see the signs and symptoms, the damage is done. They already know that the cause of many forms of dementia happens decades before the symptoms. I wish they would do research into what was happening in peoples lives before they get this, so called diagnosis!? I think coming up with a diagnosis takes so long, because they can’t do anything about it, so try and spread the time out, to a point they can send you home, with nothing to do!

I’m a big believer in Living With Dementia. I change my life to best deal with what is happening now, like getting old. If you just let it happen, it will! If you do everything you can to keep what you have running as best it can, then you can slow, or stop this thing! That is what I think and given the alternative of the medical profession, what have I got to loose!?

Waiting for this cure, is just time wasted and time none of us have!

The timetable was a bit help.
The physical problems related to the broken hip I think can have an impact on our mental state, the same goes for loss of a loved one. The stroke and the falls, it seems like the pattern was there to see.

Many thanks again for this valuable insight!

Please Stay Safe and Keep Well! Keep cleaning, but not too much! ?

 

[NotTooLate]

1. I am a carer
2. Alzheimer’s disease
3. Memory issues in small ways, anger and mood swing issues in major way and very out of Character.
4. Diagnosed 4 years ago after nearly 2 years of worsening first signs/symptoms.

Quick Question: Was there any event that happened prior to the first signs and did you both notice them?

 

[NotTooLate]

Richard
hi, no idea if there is any connection between the tumour and dementia, I was merely making the point the doctors dismissed any of our concerns about her behavioural changes and memory issues as all related to the ‘damage’ caused by removing the tumour.
Mum is type 2 diabetic, she had been unwell with sickness bug and in her sleep she has a seizure and was taken to hospital who said she had ketoacidosis and had the seizure not woke my dad she probably wouldn’t of survived!
Sadly mum has deteriorated a lot in the past 2 years or so and is now in a residential care home.

Thank you for this information!

 

[NotTooLate]

Hi @Mousehill

Thank you for your reply!

Wanting to Scream… this is something many of us feel! Frustration, you see it, but nobody else does! My Mum and Dad, saw doctors as being on the right hand of God. I think I am like you, too polite, too soft, but really, I don’t want to be overbearing… I just want, what we all want, time! This I think is the major problem. The last GP I saw, stated by saying, I only have ten minutes, so what is the most important thing!? Didn’t really do anything for me…. just a big inner scream!

I was pleased to hear that you try hard to have things to do together. It not only sounds like for your Mum enjoy these moments together, but as you state, it does make a huge difference. It is understandable that a lot of this is not what you want to be doing with your life, but that is life. We take the cards we are dealt and play them the best we can.

Dementia is a label that helps the medical profession in many ways. They can’t do anything about it and it becomes a great excuse to use… well that is my opinion!

It sounds like you are doing a fantastic things! Please keep at it!

Stay Safe and Keep Well!

Richard

 

[NotTooLate]

After reading @mousehills post i thought I would let you know about a friend , He was 82 but had macular dengeneration and bladder cancer , the only thing his family notices was a complete change of personality , no empathy , harsh at times , he lost his wife and was ok for a while , he then developed double incontinence which was put down to recurring bladder burning for cancer treatment , the literally within a month he had a fall , taken to hospital , found a tumour in his bowel , had that removed and he developed delirium , moved from hospital in to a home and died within 4 months , never diagnosed with dementia although every health professional presumed he had it . Don’t know if this helps at all it was just seeing the mention of macular degeneration that made me mention it .

Hi... just wanted to mention something I have noticed a lot, across all forms of dementia. That is that a change in personality is often seen as a first sign and often this is, as you say, harsh at times! My personality has changed, I’m not the person I was, but the worse thing is, I know it. I don’t think many do!?

 

[NotTooLate]

I’ve been trying to find other fellow sufferers of dementia, to share our experiences in hope that together we can do something positive about it.

Well tell me How many with a Dignoses of Dementia did you find ???

On this site... 5. I thought there would be more, like me, still able to communicate and share, but I think maybe here, too many have passed that point! I'm just hoping there are more, like me, out there!? I'll keep looking!

Stay Safe and Keep Well!

 

[NotTooLate]

Results so far:

Seizure	2
Fall	3
Blow to the head	4
Accident
loss of a loved one	2
Illness	1
Heart Attack	3
Mental illness
Drugs issue
Drink issue
Depression	3
None	4
Infection	1
Stroke	2
Severe Pain	1

 

[Sam Luvit]

Please Stay Safe and Keep Well! Keep cleaning, but not too much! ?

You are very welcome @NotTooLate

Yes, my parents lived very active lives. Both retired “late” and both volunteered for charity shops into their late seventies. The blurb put out about how to prevent dementia says to keep active, keep social, keep using your brain. Mum did all three but still got Alzheimer.

You might find this interesting, looking at the link between epilepsy and dementia. I only read the first page!

Cognition and dementia in older patients with epilepsy

Older people with epilepsy are more likely to suffer from dementia, while individuals with dementia are at higher risk of developing epilepsy. Sen et al. c

academic.oup.com

I’ve read and been told that Alzheimers is where parts of the brain die, this is confirmed with a scan, which shows the brain shrinking. With other brain injuries, the person can “re learn” how to walk, talk, do, by creating new pathways in the brain. With Alzheimer’s the brain continues to die, so each new pathways, each new memory of how to hold a fork or cut with a knife, gets lost again. Access to memories becomes disjointed, picking up unrelated fragments and piecing them together to form a memory that never happened

Personaly I don’t think the diagnosis is deliberately delayed, I think it’s more trying to find anything else it could be. There are other medical conditions that can be mistaken for dementia, those conditions can be medicated to cure or at least managed.

I do believe that experienced doctors can diagnose dementia across a crowded room. There is something about dementia, a look, a way of looking ... I don't know how to describe it, but there is definately something that can be seen

I think I enabled mum to “live“ with dementia. We went abroad for a fabulous holiday. We visited friends around the country. We mooched around charity shops and she drank gallons of tea and ate mountains of cakes around the town. These were interspersed with massive anxiety and fear that she wouId do something silly and people wouId look at her, or call her a silly old woman. I believe that with support you can live and enjoy life, it may be limited at times, but we all have limits at different times of our lives. As you say, you have nothing to lose

I think I need to clarify a bit ..
Mum was the oldest person at rehab following her broken hip, she was also the most determined to get her mobility back. The nurses were astounded at her determination and how much effort she put into it

The last two falls were a result of bleeding in the brain (spotted following her stroke), where medication was not adjusted

My theory regarding fall, loss of a loved one, stroke etc, as a precursor to dementia is more along the lines that “something” happened which caused a tiny brain injury. That injury developed into dementia, where the brain continues to be injured (in my layman basic English).

We already know that a GA (General Anaesthetic) exacerbates Dementia. Maybe they should monitor post Op patients for brain tissue changes, in non dementia patients to see if anything unexpected shows up. That’s just my personal view

I’m off to wash my hands

 

[Agzy]

Quick Question: Was there any event that happened prior to the first signs and did you both notice them?

A bit to far back to recall but overriding recall is of illogical anger and moos swings dominate but also changes in tastes and likes/dislikes

 

[Agzy]

Quick Question: Was there any event that happened prior to the first signs and did you both notice them?

Not sure if this will work but copied word link of my 1st year with dementia journal. https://1drv.ms/w/s!AhAUxKJe9080rDAlUKG1d0aTBAyA

 

[Jan L]

Hi @Jan L thank you for the information.

So you noticed things 20 years ago, was there anything that happen prior to this? It sounds like he could have be depressed and rightly so!?

Do your think there is a family/gene connection?

I find this point you make very interesting, ‘once it was confirmed he stopped trying!’ I think there is a lot in this. Being told you have something that has no cure, no treatment and effectively no hope to overcome, is devastating! I know, because that is what I felt and I’m sure most that get this feel the same, but I changed my outlook. When a doctor tells you that, in there opinion you have dementia, they are telling you what you already know. They repeat the signs and symptoms as if it is something they have discovered. With certain dementias’ there is quite a clear path, but for many there isn’t. You only have to read the stories here, so many similarities, but far more differences!

I was given no hope. I thought, and my son and daughter thought, it was just a matter of time, certain decline and I was going home to die!

My belief is that there is hope and for many, we can live with dementia!

You mention this loss of sight, the second case I have heard. How do you snap an optic nerve?

Scans are an amazing tool, but that is all they are. It is the user that makes it special. If they are not using it, or looking for a particular thing, they don’t see it, maybe!?

Please don’t apologies for getting your thoughts down, we don’t get the chance that often! I am terrible for rambling!

Stay safe and keep well!

Richard

Hi Richard, thank you for your reply, I noticed the change, but at the time put it down to being made redundant after working for the same company for over 35 years, then the pension scheme going bust, at 58 that is a heck of a blow when you were thinking you would have been able to retire at 63 having paid the maximum into the fund. Life was turned upside down and full of uncertainty. I had to work hard to keep my job and pension as it was the only security we had. I didn't think it was Dementia at the time, it was only with hindsight I realised that it was probably the cause. He refused to discuss it and it just became a bone of contention between us. You are correct I do worry that it is in the genes as I have two Sons in their 40's who I know are worried that in 10 years from now they could be on the same road. Neither of his Grandparents had Dementia, his Father did but his Auntie didn't, Paul has it but his younger Brother is okay so far (he is in his early 70's). I think his Father who started in his late 50's and took early retirement at 61 had Alzheimer's but there weren't the tests and scans there are now and the Doctor treated him for nerves and put him on Valium and another drug. His Mother developed Vascular Dementia in her late 80's, she died at 92 following a stroke, her Father also had Dementia in his 90's for a couple of years prior to his death. I try to reassure my Sons that it took two of us to produce them and I don't know of anyone on our side who suffered with it.

On the subject of the loss of sight in his one eye, with no explanation at the time as to why this could have happened, no bang on the head or rugby injury etc, but I have read somewhere on the Alzheimer's Website that it is possible for the plaque from the brain to get around the nerves of the vital organs, dry out and cause the nerve to snap, in my Husband's case, the optic nerve, so it was clearly a symptom of his condition. If the Consultant was looking for a reason, I would have thought he would have been able to have seen the problem. That was in 2007.

My big regret is that he wouldn't talk about it to me when we could, he can no longer speak and communication was definitely a factor in the early stages and lack of awareness. He just tried to carry on as if there was nothing wrong and blamed me for all the things which were going wrong. He just deluded himself, I even said that if he hadn't got a problem we should go to Relate if we were to have any chance of staying together. He wouldn't go of course, and I knew by then what the problem was. We lost the closeness we once shared, and when I had to bully him into going to the Dr's and was eventually diagnosed it was classed as moderate/severe, that was 5 years ago. Up until then he had been a Walk Leader with Walking for Health but I had to stop him doing that, although most of the walkers realised the situation and supported him, he was no longer able to do his presentation at the start of the walks and I stopped him driving so he wasn't able to get to the locations anyway. He was also Chairman of the Group for about 5 years, but it was me that covered for him doing all the work behind the scenes then he got he couldn't make the announcements at the meetings.

We seem to have lost out on so much all these years, partly my fault, but we were never in it together, his Mother always used to say when she told him things that she could share anything with him because he kept everything to him self, he was like a "clam". I put it down to a Boarding School education in the 1950's, sometime you have to share your fears with those closest to you to make a relationship work. I have had 40th and 50th Wedding Anniversaries, with no recognition from him, because he was unaware. I did organise a meal for friends and family at our 40th, he did a little speech about how wonderful his Sons were, not mention of me (it was our anniversary) when I asked him the next day why there was no acknowledge of me or our marriage, he didn't answer, I understood and could between us have seen the funny side, he could have made amends by offering to take me out for a meal, a weekend away, or a trinket of some sort to make up, but he just walked away and it was never mentioned again. Our 50th last year when largely unnoticed but our Sons and Families did take us out for Sunday Lunch at the hotel we had our reception at also my Sister, so that was very nice to spend time with the Family, but sadly he didn't know what it was all about.

There you are another ramble. Perhaps I should write a book!
Stay safe and well.
Jan L

Hi @Jan L thank you for the information.

So you noticed things 20 years ago, was there anything that happen prior to this? It sounds like he could have be depressed and rightly so!?

Do your think there is a family/gene connection?

I find this point you make very interesting, ‘once it was confirmed he stopped trying!’ I think there is a lot in this. Being told you have something that has no cure, no treatment and effectively no hope to overcome, is devastating! I know, because that is what I felt and I’m sure most that get this feel the same, but I changed my outlook. When a doctor tells you that, in there opinion you have dementia, they are telling you what you already know. They repeat the signs and symptoms as if it is something they have discovered. With certain dementias’ there is quite a clear path, but for many there isn’t. You only have to read the stories here, so many similarities, but far more differences!

I was given no hope. I thought, and my son and daughter thought, it was just a matter of time, certain decline and I was going home to die!

My belief is that there is hope and for many, we can live with dementia!

You mention this loss of sight, the second case I have heard. How do you snap an optic nerve?

Scans are an amazing tool, but that is all they are. It is the user that makes it special. If they are not using it, or looking for a particular thing, they don’t see it, maybe!?

Please don’t apologies for getting your thoughts down, we don’t get the chance that often! I am terrible for rambling!

Stay safe and keep well!

Richard