Question Time for Carers

Banjomansmate

Registered User
Jan 13, 2019
5,392
0
Dorset
Good Morning @Banjomansmate

It seems that it was quite a rapid decline after the diagnosis, although I think you already knew.

I’m a big believer in the mantra, if you don’t use it, you lose it, but it seems that in BanjoMan’s case, this wasn’t true and it seemed that his musical abilities were some of the first things to sadly be impacted.

I’ve heard that this weight loss is something seen in some cases where someone is suffering with signs of dementia, but never really been able to pinpoint it to any particular form of dementia. A few studies suggested that it may be due to apathy, or loss of taste, or smell, but nothing confirmed. It has been suggested that it could be an early indication of pending dementia problems. However, there seems to be as many studies that contradict this and some go as far as suggesting that obesity may raise the risk of dementia.

BanjoMan sounded like a real character and I would have loved to have known him. It is nice to know he was still singing to the end. I find music and singing something special! It does something to you that nothing else does! It sounds like you were well suited and complemented each other. You had a large following and social scene too! I'm sure he and you, are missed so much!

Autoharp… we had one of them in the cupboard at my last school. It didn’t look that easy to play, but it was good at gathering dust!

I can’t start to imagine what you went through and I’m so sorry for your loss.

Do you still play and get involved with the music groups?

Keep singing!

Richard

The autoharp in the cupboard, was it black with a red rose on it? I have two like that, a nine bar and a twelve bar. They are not that difficult to play ‘cos I can do that but they are devils to tune! To my shame I have to admit that I relied on The Banjoman to tune them for me. As I only really sang with him (he gave me the confidence) I haven’t done anything since his dementia meant we could no longer play together.
I must admit that I was surprised that it was his manual dexterity and musical ability that went, he had been playing and singing for most of his life but it was his form of dementia that affected things. A few months before he died, just before he fell and broke his hip and deteriorated rapidly, he could still remember the date of some very early Bluegrass/ Old time country music recordings and recognise who was singing when we were listening to a CD. He had no idea of that day‘s date or time though!
 

Linton

Registered User
Jul 27, 2019
166
0
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
I am a carer
Lewi body dementia
Forgetting how to get to destinations
4 years ago
 

Chaplin

Registered User
May 24, 2015
354
0
Bristol
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 was a Carer until last October when my elderly mother moved into residential care. Mum has mixed dementia, Alzheimer’s and vascular.
Mum’s case was complicated as her early symptoms were linked to a brain tumour successfully removed around 40 years ago. This operation left her with epilepsy so when we noticed some of her behaviour changes and memory issues it was attributed to her epilepsy which was controlled with medication.
Around 2011 we noticed a deterioration in her memory followed by apathy and lack of interest in things she previously enjoyed. We finally had a confirmed diagnosis when she was taken to hospital in 2015 suffering with diabetic ketoacidosis.
 

Woo2

Registered User
Apr 30, 2019
3,652
0
South East
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?
Hi
1. I am a carer for mum who is diagnosed with AD although a psychiatrist who assessed her in Dec agrees with me that it’s FTD. Her mum and sister died of Vascular Dementia . My mum is only 70 so def had early onset .she told gp she had no family history of AD and that she had had no symptoms pre 65 .

2. there was quite a few signs but we put it down to lifelong depression until dad retired and realised it was more than that . She would put meat in the oven to cook after the veg was put on to steam , was a very social person but stopped going out as much , took serious umbridge at a family member that was very close to and refused to see them ever again. Lots of things we can now see where signs going back at least 20 years . Was eventually diagnosed as moderate 3 years ago after refusing to go to gp for 7 years .
 

Jaffy

Registered User
Oct 24, 2013
180
0
78
Ohio USA
I love this! It is exactly what the "old me" would have done! Thank you.
I am 74 - wife; mother, etc. I have Parkinson's and was unaware that a dementia was attached to it; most likely Lewy Body. I noticed something was REALLY going wrong with my health 1991, doctor dismissed it to pre-menopausal. I finally self-diagnosed it 1995 along with fibromyalgia because pain isn't supposed to be a PD symptom!!!

I finally went to a doctor, again, 2008 and was diagnosed with PD. By that time, I knew my mind was leaving me to live with a person (myself!) whom I didn't like! I had always liked to be alone, with myself and my books and papers, I was a writer and had just had my first novel published, had plans for 4 more sequels but they never came-to-be.

What was the first signs? The sad, sad, sadness that I (the old me) no longer existed! It was overwhelmingly SAD. I kept refiling my files until the stack of "unfiled" took over my desk and onto the floor! Because, I unfiled what I had filed! Yet, I couldn't re-file them!

I thought when someone was getting dementia or had it, they were unaware of it. My son's mother-in-law had it and had no idea! What a blessing, I thought. (Although her daughter, disagreed with me because her mother would almost every day "find out" that her parents had died (years ago - to us) and grieve horribly, all over again! Where if she was aware, she would know they were gone and that would be that.) Sorry for the rabbit trail.
I think that about covers your questions +! Now, I want to mention my present, return problem. I guess it is a form of "sun-downers". It hit 2 days ago, the rooms are closing in on me, I am "seeing movements" of bugs, mice etc, that don't exist. It comes with the trees beginning to leaf out, hiding the sky, tho very little at the moment. We have moved to our daughters property where there are no trees and the sky is wide open, I never expected it. But our home is now very small and not many windows and they are smaller than I like. I am about to scream while I write this but it is only 5:49 am and hubby is asleep and would not appreciate it! This is the first time in about 2 years that I have awakened in the night (again sun-downers) in this "mood"!
Will close, getting too emotional, going to have to find something to get this off my mind. I do hope to remember to return and tell you about my husband and his undx'd dementia!
 

Banjomansmate

Registered User
Jan 13, 2019
5,392
0
Dorset
Jaffy, The Banjoman had Lewy Body Dementia and he was always seeing bugs and other creatures. He kept insisting there was a cat that was coming into his flat.
I hope you remember to come back.
 

Mousehill

Registered User
Nov 28, 2018
69
0
Hello,
I am the main carer for my mum.

She was diagnosed by telephone due to lockdown as having Alzheimers. She went for her assessment to Memory Clinic in person though. I am not 100% convinced she has Alzheimers alone. I raised this with the doctor who did the over-the-phone diagnosis and said I suspected Lewy bodies. He said that was unlikely, as she is still alive nearly 10 years after we first noticed anything different.

I'll be as concise as I can about the progression, but there's quite a bit to cover!

Mum is 86 now. Until her mid-70s, she'd been what I would now describe as a 'Saga Holiday Model Pensioner' (although she and dad never actually went on a Saga Holiday!) She was fit, healthy, active, and definitely young at heart. She and dad were forever going off on little holidays and she enjoyed life.

Around the age of 70, mum had been diagnosed with age-related macular degeneration, which sadly meant eventually she had to give up knitting, which was something she loved. She was one of those knitters who could churn out an Arran jumper while chatting and watching TV!

Around 75 / 76 she just had to stop knitting altogether, as well as doing crosswords and sudokus and people she'd known for years were complaining that she'd 'blanked' them in the local shop where she went every morning for newspapers. She and dad both put it down to the MD, but for her safety, dad eventually told her not to go out alone to the shop again as the road was busy and it wasn't really safe for her.

Around 76, I was looking to move to be closer to my parents, so I could be handy if they needed me. The first time I really saw a change in mum was when she offered to come house-viewing with me and almost in an instant, when we were walking from one viewing to the next, her mood just dropped like a stone. in an instant, the street wasn't nice; the people looked dodgy; it was too cold; she needed a cup of tea...I ended up ringing the agent and cancelling the viewing, which didn't go down well! A few months later, when I had my new house, I grew some veg and brought her a bag of courgettes. She had no idea what they were or how to cook them, which shocked me because she used to grow them herself in the garden for years!

I can't recall the exact year, but around the age of 78/79 she suddenly had to stop reading at church because (in her words) one day, the words on the page just stopped making sense and disappeared in front of her. Again, we all put it down to MD. She also started to get bouts of depression, which dad put to the fact she no longer enjoyed her hobbies because of her eyesight. Tellingly, she refused to acknowledge her 80th birthday - which was totally out of character.

Over the next couple of years, she had a couple of falls, where dad had to ring me to come and help because she seemed incapable of following instructions to get up and the only way I can describe it is like her being in a trance. She started to shuffle and develop a blank look - but these phases came and went, so on a good day (or good hour, even) it was easy to forget there was a problem. We still clutched at straws. We knew she wasn't drinking enough, so we put it down to dehydration!

From around 82 to 84, things got worse. Mum loved her books and collected Ladybird books. However, her behaviour started to really become concerning as she'd go upstairs and arrange and re-arrange her books and demand I printed out lists of all the Ladybirds ever published and spend hours up there, until she was exhausted and in tears of frustration - claiming 'nobody would help her (yet refusing any offers of help) Time and again, I would go round and find her sitting staring blankly saying she'd 'never forgive' dad for not offering to make her a brew.

She also stopped getting dressed properly some days and would just slip a cardigan over her nightie. Once I went up to her room and found her refusing to come down as she had 'nothing' to wear. I realised the whole upstairs was full of clothes all in a muddle. She also became convinced dad was moving and hiding things.

Tragically, when she was 84, we lost dad after a very brief illness and had to move mum in with us for a while and then managed to bring dad home to their home to die and move in with mum there, so we could be together.

That was nearly 3 years ago and in that time, mum has gone from being able to manage on her own with a few visits, to needing a hospital bed (with sides) and having me come in to get her up, washed and dressed, helped to the loo and all meals and drinks made. My brother has moved in with her, so he's there in the evenings to do the evening meal and I come back to put her to bed. He ability to walk and her cooridnation, eyesight, perception of vision and ability to process information continue to come and go, although she is definitely on a downward curve. She hallucinates and has vivid dreams that she believes are real. She has urinary incontinence at night and on a bad day, when she's been confused or upset about something, she will un-knowingly take off her night-pants and urinate in the bed.

Okay, that's all pretty grim - so there's a bit more I need to say. We have never, ever stopped loving her or remembering her as the human dynamo and domestic goddess she was. We have managed a few little short-breaks with her and these have been amazing. On her good days, she is still cheerful and we have developed a great appreciation for toilet humour! One thing she can't cope with is too much information, or background chatter. I have concluded that she was a lovely, sweet little toddler and right pain as a teenager. There are awful days, but we're in it together and whatever dementia throws at us, we'll take it.

Mum knows (on her lucid days) that there is something wrong and she talks about planning ahead if and when her care needs outstrip my capabilities in terms of lifting etc. On her bad days, she is completely lost to us and worse, to herself and all the frustration and sorrow comes out.
 

Jaffy

Registered User
Oct 24, 2013
180
0
78
Ohio USA
Jaffy, The Banjoman had Lewy Body Dementia and he was always seeing bugs and other creatures. He kept insisting there was a cat that was coming into his flat.
I hope you remember to come back.
Remembered: so-far-so-good! I see I am in with the best, love banjo music. I recall 5 years ago or so, I stood behind our recliner petting this big beautiful black cat, lying there! It finally dawned on me that we didn't have a cat and this one was not real!
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi @samluvit

Hope I find you safe and well?

60 years together, wow! That is sometime to be together and I’m sure the two would become one, if you know what I mean. They must have know so much about each others ways and everything!

The anti epilepsy drugs interest me. I have been on these for many years and although have few grand seizures, I still suffer the absences, these ‘vacant episodes.’ I’ve always thought that they have an impact on my memory, for after an episode, I feel like I have been rebooted, like my memory has been cleared. There are quite a number of people with some form of dementia that also suffers with epilepsy too, but not a lot of research into this.

Maybe a question I could add; Did, or does the person with dementia have epilepsy? What do you think?

The next bit, is this plateauing you mention. A lot of case seem to follow this pattern, mine certainly does. Most of the time, in my case, they have followed major physical changes at the same time of these dips, like my heart attack, epilepsy, Meniere’s and then dementia etc.

Again this is something I could ask; Does the person with dementia, seem to be ok for a time and then have a stage where their symptoms get worse?

I think GPs feel frustrated, because really, there isn’t anything they can do and being old too, it’s a double whammy!

This week I am only putting up one question; ‘Did the person with dementia have some significant event prior to the first signs, or symptoms of dementia being noticed?’ Yes, or No?

Additional information can be added: The nature of the event ie,

Stroke
Seizure
Fall
Blow to the head
Accident
loss of a loved one
Illness
Other

This goes along with your belief, and mine too, that there is often a link between a traumatic event, physical, or mental, that is the trigger to dementia related problems.

Carer’s do have a vast amount of knowledge, based on individual experience, but this does not have accreditation, something the medical profession demand. So, you often will get the seemingly patronising situation, where you tell them, but they don’t hear it! I’ve told my doctor, certain things that I experience and he said categorially No! Now that is Crazy!

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?

keep safe and stay well my friend!

Richard
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi @ToonyOony

A big thank you for taking the time to take part, so much appreciated!

You say that your Mum had VD, but it was thought that it may have been Alzheimers, I’m not sure what they would have done differently, but I would like to know why this was considered?

Could you tell me how long it was that you first started noticing signs, before the diagnosis?

The signs and symptoms seem to be quite sever and must have been frightening for both you and your mum too. Did they develop quickly?

It seems that your Mum’s decline became quite rapid in the last two years, while at the CH?

Interesting about the bad fall and pelvis break and you thinking that this was about two years before problems started. I noticed that as people become less able to do things for themselves and their life becomes more sedentary, dementia type symptoms often show. So, people getting older and having major falls and breaks, causes their live into this sedentary state and maybe could be a link. Hope that makes sense?

It must be extremely depressing to go from someone very independent, to becoming forced into a situation where you can no longer cope. This also is another factor, I believe, why dementia starts to get hold. People get lost in depression and their brain starts to focus solely on the negative points happening in their life and the brain almost shuts down! Well, that’s one of my ideas!

It is impossible to know what goes on inside someone’s mind, when it doesn’t appear to you, to be the same person. I’m struggling daily with my grip on reality and my dream world, without my support dog Finn as an aid to let me know when it is real, I am becoming a bit lost. I see my son and daughter as much as we can get together, but I have to think hard to know when I last saw them.

Hindsight a good thing, I don’t think so… it would be a lot better if we could do something with it!?

We are all guilty of this, in all walks of the life we lead. Now, looking back and in hindsight, I think if you believe something's not right, then you should do something about it, but then again, that’s hindsight for you!

You end saying that there may have been early signs. Where these physical, or behavioural and something you may just have thought of as, a part of getting old?

Stay safe and keep well!

Richard
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi @Linton and thank you for taking the time to take part!

You say, forgetting how to get to destinations, was this something you notice, or did they, or both?

How long was it before the diagnosis that the signs were being noticed?

Stay safe and keep well!

Richard
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
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
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
HI @Woo2

A big thank you for taking the time to reply!

Diagnosis is a strange subject with dementia. There are so many forms and so many similarities, but no test that can confirm, unless of course there is obvious physical damage, so it does come down to experience and personal judgement.

When they come to a conclusion, does it change the treatment and outlook!?

Her Mum and Sister, both died of VD, was there a physical underlying problem that they both had?
Did you think that your Mum had VD, because of the link to her Mum and Sister?

Depression again. Seems to keep popping up as related problem, but is it the cause or affect?

Your Mum was diagnosed 3 years ago, but you say there were signs at least 7 years before this. Did you and your Mum, both know there was a problem?

How is your Mum now, well I hope?

Stay safe and keep well!

Richard
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi @Jaffy

Thank you for taking part and giving your input!

I think I’ve found another me! The first one, other than me that is!

The first thing is you are aware, something that I often hear I shouldn’t be, even the doctors treat me as if I have already gone! Diagnosis… End of life…. Nothing more to be done!… Just talk to the carer….tick!

I love the idea that doctor thought it was, pre-menopausal! Maybe I should ask the doctor, could that be my problem too!?

This sounds so familiar, ‘my mind leaving me and me as someone I do not like!’

Your first signs were of being sad, being depressed because you were no longer you. Was this following any event, or illness etc. I became depressed follow illness and becoming disabled and deaf. The my mental state of feeling alone, different and very low and sad, was much later.

I too thought if you had dementia, you would be unaware of it! I think this is what most people think, even doctors and doesn’t help us at all! The fear that I have, with being aware is this feeling as if I know what is coming. Being on a railway line, knowing the train will inevitably arrive, but you cannot get off the track! I also fear, greatly, of going into this, locked in syndrome, where I am here, but to everyone else, I’ve gone. I feel as though I live inside my head and view the world as though it is distant. I don’t fear death, but I dread the thought of dying. That long, slow, lonely and lost state! Sorry to be so cheerful! However, there is an upside, I think I can live with dementia, in fact I believe that by what I do in my daily life, I can slow, stop and maybe reverse it. That really is the only reason I’m here! I’m Living with dementia, not dying with it!

Seeing, hearing and feeling things is an occurrence of my normal daily life. Finn, my support dog used to help me filter out the real from my dreams world. I struggle now!

When I find that I’m going around and around, in a rut, I have to force myself to change. My planned daily routine helps and I couldn’t live without this now.

I think many have problems that could be classed as dementia, but we just don’t know it, or maybe refuse to see it!

Keep going, Stay safe and keep well!

Richard
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
HI @Mousehill

Thank you for taking the time to take part!

Wow! That is some reply!

Well I’ve read a few times and things certainly got me thinking!

The start seems to be associated with your Mum’s Macula Degeneration. Before this point she was, as you put it Saga Holiday Pensioner, fit, healthy, active and young at heart and by all accounts liked her knitting, tv and puzzles etc. Then after, all was to change. We all know that being fit, healthy and active, both in body and mind is good for us, so it is easy to assume that the opposite is true. So, you Mum’s live changes and this seems to have had an impact of her whole life.

I believe in the old adage, ‘If you don’t use it, you lose it!’ and this I think is true for the old grey matter. Brain cells need to work and if they don’t they shut down. As this process continues, more and more neurones die and as there are fewer brain cells left to cope, the progress of the symptoms escalates to a final rapid decline. This can be seen in scans, the black portions of the scan show where brain cells have died. This is often noted as brain shrinkage, but in reality the brain hasn’t shrunk, there is just less brain to function. Ask the doctor, or memory clinic. The reverse seems also to be true, the more you use the brain cells, the more new pathways are formed; called Neuroplasticity!
Something everyone should do, throughout life, is to keep the mind and body both active! If you cannot do one thing, then do something else! I’m not saying this is the answer to all dementia, but I think it goes a long way to helping and what have you got to loose? If you have dementia, in whatever form, there is very little that the medical profession can do!

Your Mum and Dad must have been together for a far number of years, so the loss must have been tragic and the circumstance, as you describe must have been horrendous for your Mum. Then within 3 years, she is in need of full time care. This doesn’t surprise me and something you hear a lot. We often think of dementia being related to some physical problem, but more and more, I read about problems following mental related problems, caused by such things as losing a loved one.

Interesting that you say your Mum is aware, or on her lucid days, as you put it, but you think she is completely lost on other days. Then you mention the frustration and sorrows comes out, do you mean from you Mum, you, or both!?
I have problems speaking. Not so much with my son, or daughter, but with others, even the doctors and nurses. It goes like this, I start, or try to answer, I get stuck and search for the thing I want to say, then the jump in, start to give me answers. I get frustrated and the problem gets worse. I start to want to ask them to wait and frustration can get the better and I swear a bit, curse, moan, shout and it all seems a miss mash of nothingness. Then I might get the smile and helpful hand on mine, or the gentle word of encouragement. It doesn’t work. It’s too late. I can’t speak! My son and daughter, wait, don’t patronise, give me space, pass me the pen and paper. They know me, when they start to loose this connection, then I think, they will think, maybe....I have gone!

I’m sure you make her happy days, happy as they can be! I’m sure she will remember in her way! But, that is only my take on it… I’m sure many here may disagree!

Stay safe and keep well!

Richard
 

Woo2

Registered User
Apr 30, 2019
3,652
0
South East
HI @Woo2

A big thank you for taking the time to reply!

Diagnosis is a strange subject with dementia. There are so many forms and so many similarities, but no test that can confirm, unless of course there is obvious physical damage, so it does come down to experience and personal judgement.

When they come to a conclusion, does it change the treatment and outlook!?

Her Mum and Sister, both died of VD, was there a physical underlying problem that they both had?
Did you think that your Mum had VD, because of the link to her Mum and Sister?

Depression again. Seems to keep popping up as related problem, but is it the cause or affect?

Your Mum was diagnosed 3 years ago, but you say there were signs at least 7 years before this. Did you and your Mum, both know there was a problem?

How is your Mum now, well I hope?

Stay safe and keep well!

Richard
I can’t think of anything underlying ,she my nan worked full time up until she fell in the snow and broke her hip aged 85 , within a year she died , it was a steep decline , my aunt again it was a one event that really stepped up the vd, Mum was a lot younger than both of them when hers started to manifest itself . I didn’t really add it all up , it was dad once retired that could see there was something more going on than depression .

she is deteriorating as expected now as dad died a year ago , she lives with me and my family , she is relatively happy and certainly is quite healthy , dr said she could live another 10 years. Thank you and good luck with your research . Stay safe .
 

NotTooLate

Registered User
Jun 10, 2017
301
0
Alvechurch
toolate.blog
Hi again @Woo2 and thank you for your reply!

It sounds as if she is in the best place and happy with you too!

It is one of those things I hear more and more, this relationship between the loss of a loved one and decline with symptoms of dementia.

Give her a hug from me, although she will probably wonder what the hell is going on, and if you tell here it's from me, I don't think that will help much either! ?

Stay Safe and Keep Well!

Richard
 

Jan L

Registered User
Mar 26, 2020
96
0
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 am a Carer for my Husband

1. My Husband has the combined Alzheimer's and vascular dementia.

2. It is nearly 20 years ago I noticed he was becoming detached from me and wouldn't talk to me about anything, or plan, I put it down to the problems with having been made redundant, his pension scheme which he had paid into since 1965, going into administration, his Mother in her late 80's having Dementia and having to sell the Family home, I thought it was weighing down on him and making him distracted.. I had to carry on working full time passed by 60th birthday to provide some financial security, both income and to pay towards my small pension for our retirement. Things worsened when I found out that he was lying to me about things I had asked him to do in relation to his Mother's financial affairs, when I reminded him to do things he said he had done them, only to find out when she died that he hadn't been round to the old Family home to check if there was any post for her, and it turned out he hadn't cashed any of her pension giros while she had been in the home. His Father had Alzheimer's (although the Doctor said it was nerves) from the early 1970's when he too was in his late 50's, he had to take early retirement, so I recognised early on that he was going the same way as his Father. I tried to get him to get help but he refused and blamed everything on me. This acted as a wedge between us, his communications skills continued to get worse, I eventually bullied him into going to the Doctors and he was diagnosed with the combined dementia in 2015 as moderate/severe. Things have gone down hill since then, once it was confirmed he stopped trying.

3. Taking into account what I have already said it was about 15 years ago that I was sure what the problem was, although he didn't seek medical help until 2015. He lost the sight of his one eye in 2007, they couldn't find out why so sent him for tests at the regional Eye Treatment Centre, this included a brain scan. It wasn't until 2 years later when they couldn't understand why, after 3 operations on his eye, he still couldn't see. When the Consultant went through all the tests again he found the brain scan which showed that it was the optic nerve which had snapped. When he had his diagnosis in 2015 the specialist then said that his dementia problems showed up on the scan he had in 2007 but no one picked it up at the time. Obviously, it wouldn't have sudden come on in 2007 for it to be so obvious.

Sorry you asked me to be concise and I have rambled on, but felt I needed to explain fully.

Jan L
 

Woo2

Registered User
Apr 30, 2019
3,652
0
South East
Hi again @Woo2 and thank you for your reply!

It sounds as if she is in the best place and happy with you too!

It is one of those things I hear more and more, this relationship between the loss of a loved one and decline with symptoms of dementia.

Give her a hug from me, although she will probably wonder what the hell is going on, and if you tell here it's from me, I don't think that will help much either! ?

Stay Safe and Keep Well!

Richard
Thank you , I will sneak a hug in ? from you . She is happy enough , she doesn’t talk about dad at all I think she has blocked it out in self preservation, that or the memories have disappeared although at the moment she seems to be in the era of the 80’s when her , dad and I lived together . Take care of yourself , watching this thread with great interest .
 

Linton

Registered User
Jul 27, 2019
166
0
Hi @Linton and thank you for taking the time to take part!

You say, forgetting how to get to destinations, was this something you notice, or did they, or both?

How long was it before the diagnosis that the signs were being noticed?

Stay safe and keep well!

Richard
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