Question Time for Carers

[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.

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?

 

[nae sporran]

Everyone is different, of course. My partner was diagnosed with vascular dementia a year after having a stroke. Her memory and cognitive abilities had not shown any sign of recovery. It was 2 years after that before I noticed a serious change. That was all between 2011 and 2013.

 

[kindred]

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 for 4 years 2014 to 2018
Alzheimers
None
My husband had a fall and banged his head. He was sent to have a scan and they discovered he had Alzheimer’s. We had a very close marriage and had not noticed anything different about him or his abilities. He deteriorated quickly after that as a result of his head injury.

 

[Baker17]

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 have been a Carer for my husband since 2007
Late onset Alzheimer’s
Unable to concentrate on things like crosswords and puzzles
In 2007 immediately after his cardiac arrest

 

[ebas]

Vascular dementia
He was crawling round the shed on his hands & knees
June 2016 until March 2020 when he died

 

[annielou]

Carer for my mum
Alzheimers
Mum found out she had a full macular hole, a partial macular hole and cataracts and while going to hospital about these she kept forgetting what she was going for and also kept ringing me to tell me she had a blurred spot in her eye as if it was new and first time she'd noticed it. That was when I realised how often she'd forgot or mixed things up lately, she had started to change her mind about things a lot and I realised she had probably actually forgot what she'd said before. She also was more grumpy and aggressive than previously, especially about things she had forgot or got wrong.
This was october 2017, she was diagnosed november 2019

 

[NotTooLate]

Hi @naesporran and a big thank you for being the first and taking the time!

You are right, everyone is different, but often things seem to get lumped together.

I’m not trying to segregate or group in any particular way, but I am looking for patterns, things that might suggest something! Hope that makes sense?

The next part of your reply, instantly gave me the reason to add another valuable question to this weeks list:

4. Was there any illness, accident or event that precede the onset of the signs or symptoms?

I found it really interesting that out of the five replies, three of them refer to something happening prier the onset of the signs, or symptoms.

What do you think about adding question 4?

Hi @kindred thank you for taking part!

I find it interesting that your husband had no signs, or symptoms, before the fall. I take it the fall was just one of those things, an accident?

You say the scan showed he had Alzheimer’s. Was this that the brain was reduced in size, what they call shrinkage?

For 4 years you cared for him and in this time did his abilities change in a way that would be recognised as Alzheimer’s?

Hi @Baker17 Thank you for taking part!

You say your husband has, Late onset Alzheimer’s, was this diagnosis made in 2007?

I find the fact that he had a cardiac arrest prior to the problems interesting.

I also had a heart attack on boxing day, 2007. While having stent fitted, I had another. I don’t think I had any different problems following this, but not sure. My diagnosis is, Mixed, or non specific dementia, although it was first recorded as vascular dementia… a problem related, I believe, to blood flow?

Hi @ebas and thank you for taking part.

I’m so sorry for your loss.

I’ve just realised it is so recent!

I will come back to you at a later date, if that is ok. I don’t want to disturb you at this time!

Hi @annielou and thank you for taking part!

So the first signs were your Mum forgetting recent things, such as hospital appoints, or the reasons for the appointments and this discovering over and over, something to her that was new, the blurred spot?




I would like to thank you again for taking part. I hope more will follow?

Do you think I should ask the age of the person?

Did you mind me asking questions, or making comments about your replies?

Please stay safe and keep well!

Richard @NotTooLate

 

[Banjomansmate]

Friend/Carer - until death October 2019

Lewy Body Dementia

2012/13/14 - We would be rehearsing songs and The Banjoman would change key/arrangement from one day to the next then back to the original. Then he started forgetting the words of songs and needed them on a music stand. This was someone who had an enormous repertoire of songs in his head.
Dementia didn’t occur to me until I found he could no longer do easy Sudoku puzzles. By 2015 he was losing weight and it became obvious something was wrong.

Although he had a pacemaker fitted after his heart stopped in 2009 I felt his brain function started to deteriorate after a general anaesthetic for another operation at a later date. Cannot remember exactly when though.

 

[kindred]

Hi @naesporran and a big thank you for being the first and taking the time!

You are right, everyone is different, but often things seem to get lumped together.

I’m not trying to segregate or group in any particular way, but I am looking for patterns, things that might suggest something! Hope that makes sense?

The next part of your reply, instantly gave me the reason to add another valuable question to this weeks list:

4. Was there any illness, accident or event that precede the onset of the signs or symptoms?

I found it really interesting that out of the five replies, three of them refer to something happening prier the onset of the signs, or symptoms.

What do you think about adding question 4?

Hi @kindred thank you for taking part!

I find it interesting that your husband had no signs, or symptoms, before the fall. I take it the fall was just one of those things, an accident?

You say the scan showed he had Alzheimer’s. Was this that the brain was reduced in size, what they call shrinkage?

For 4 years you cared for him and in this time did his abilities change in a way that would be recognised as Alzheimer’s?

Hi @Baker17 Thank you for taking part!

You say your husband has, Late onset Alzheimer’s, was this diagnosis made in 2007?

I find the fact that he had a cardiac arrest prior to the problems interesting.

I also had a heart attack on boxing day, 2007. While having stent fitted, I had another. I don’t think I had any different problems following this, but not sure. My diagnosis is, Mixed, or non specific dementia, although it was first recorded as vascular dementia… a problem related, I believe, to blood flow?

Hi @ebas and thank you for taking part.

I’m so sorry for your loss.

I’ve just realised it is so recent!

I will come back to you at a later date, if that is ok. I don’t want to disturb you at this time!

Hi @annielou and thank you for taking part!

So the first signs were your Mum forgetting recent things, such as hospital appoints, or the reasons for the appointments and this discovering over and over, something to her that was new, the blurred spot?

Thank you, as far as I am concerned, you can ask what you like. This is valuable work.
My husband simply tripped on the carpet and fell against the video. An accident.
I don’t know what happened to his brain, the doctor simplywaved the scan at us and said you have Alzheimer’s.
Oh yes, his condition certainly accorded with classic symptoms at this point. Loss of cognitive abilities, following me around, incontinence. But he never had any repetitive behaviour and was still a.capable of wisdom!

warmest, kindred



I would like to thank you again for taking part. I hope more will follow?

Do you think I should ask the age of the person?

Did you mind me asking questions, or making comments about your replies?

Please stay safe and keep well!

Richard @NotTooLate

 

[nita]

My mother developed Alzheimer's at the age of 86. She had had chronic pain (arms and shoulders mainly) and a lot of medication for that which didn't help, for 9 years before. I think she was depressed, looking back, which was understandable, given the level of her pain. She started to show signs of forgetting things very suddenly in August 2010. She couldn't remember which medication she'd taken and got in a muddle writing it down. Before that she was very diligent with the different meds she had to take.

 

[Just me]

Hi NotTooLate

I am the carer
1. Vascular Dementia
2. She kept saying ‘I can’t think’, unable to understand money, repetitive counting notes, unable to carry out everyday tasks such as putting tea bags in electric kettle, making a sandwich without bread, wearing same clothes day after day....
3. I noticed about 3 years prior to diagnosis.
4. Went to doctors and found that parathyroid not working correctly and producing excessive calcium in the blood. Had been advised years previously to leave it alone but symptoms can cause confusion and it was decided to remove a parathyroid gland. The confusion did retreat for a while after but to my mind the damage had already been done. No evidence of a stroke following brain scan.

 

[Baker17]

Hi @naesporran and a big thank you for being the first and taking the time!

You are right, everyone is different, but often things seem to get lumped together.

I’m not trying to segregate or group in any particular way, but I am looking for patterns, things that might suggest something! Hope that makes sense?

The next part of your reply, instantly gave me the reason to add another valuable question to this weeks list:

4. Was there any illness, accident or event that precede the onset of the signs or symptoms?

I found it really interesting that out of the five replies, three of them refer to something happening prier the onset of the signs, or symptoms.

What do you think about adding question 4?

Hi @kindred thank you for taking part!

I find it interesting that your husband had no signs, or symptoms, before the fall. I take it the fall was just one of those things, an accident?

You say the scan showed he had Alzheimer’s. Was this that the brain was reduced in size, what they call shrinkage?

For 4 years you cared for him and in this time did his abilities change in a way that would be recognised as Alzheimer’s?

Hi @Baker17 Thank you for taking part!

You say your husband has, Late onset Alzheimer’s, was this diagnosis made in 2007?

I find the fact that he had a cardiac arrest prior to the problems interesting.

I also had a heart attack on boxing day, 2007. While having stent fitted, I had another. I don’t think I had any different problems following this, but not sure. My diagnosis is, Mixed, or non specific dementia, although it was first recorded as vascular dementia… a problem related, I believe, to blood flow?

Hi @ebas and thank you for taking part.

I’m so sorry for your loss.

I’ve just realised it is so recent!

I will come back to you at a later date, if that is ok. I don’t want to disturb you at this time!

Hi @annielou and thank you for taking part!

So the first signs were your Mum forgetting recent things, such as hospital appoints, or the reasons for the appointments and this discovering over and over, something to her that was new, the blurred spot?




I would like to thank you again for taking part. I hope more will follow?

Do you think I should ask the age of the person?

Did you mind me asking questions, or making comments about your replies?

Please stay safe and keep well!

Richard @NotTooLate

Hi, my husband wasn’t diagnosed until 2015 after going through many mental investigations with various mental departments

 

[NotTooLate]

Hi @Banjomansmate Thank you for taking the time to answer these questions.

I understand the User Name, now! Like it!

I’m not that up on, Lewy Body Dementia, but I will research it as I think it is important to understand the differences and the similarities too!

When was he diagnosed?

It sounds like the signs and symptoms started to be noted around 2013 to 2015. Was it you that noticed this happening, or was your mate aware of it too?

It does seem that there is a time lapse from having his pacemaker being fitted and the first signs of any problems.
Interesting to hear you think that you thought he was having problems after general anaesthetic. I have read other bits about this, but this related to Vascular Dementia, which makes more sense, or I should say, it makes more sense to me.

As a bit more about me. I used to play guitar, but lost a lot of the fine control of my right hand. I tried for a while with keyboard, then Ukulele was becoming popular, so I tried and I’m still playing, or trying at least. I cannot remember the words of a complete song and now rely on a folder of songs, but that’s ok.

I’ve never really been into sudoku, but I have tried it. I also tried jigsaws and I find that I can’t do large jigsaws. I use an app and I’m up to about 50 pieces now. Can do the corners and the edges, it’s the middle bit that becomes a bit…. lost! I have to keep all the pieces upright too, it’s the orientation thing. Keep trying, that’s what I say and it is worth having a go!

Do you still play together? Would love to know what songs you were in to?

Hi @nita and thank you for completing the questions, much appreciated!

So, your mum was 86 when she was diagnosed?

You say you noticed a sudden change in August of 2010, did your mum know she was having problems?

Chronic pain is a big problem and my own feeling is that the medication, while helping with the pain, has too many other side affects. I was addicted to morphine and still am addicted to other medication that on and have been on for many years. I think the medication depressed me, if that make sense? This is based on my experience with neuralgic pain and muscular pain. For me the problem was that no body was keeping an eye on my consumption of these drugs, I just got them every month.

How is your mum now, did she plateau, or did it get worse?

How are you coping… carers’ have a tough time? I certainly think my carers’ have a hard time dealing with me sometimes!


Hi @Baker17 A big thank you for getting back in touch!

I’ve heard this so many times… this extended length of time from signs and symptoms that you notice and any diagnosis!

So you both were struggling along from 2007 to 2015 and I take it the situation wasn’t getting any better?

I suppose a lot of it comes down to that they just do not know what to do and as soon as they diagnose someone, you would expect help!

I felt very frustrated and disappointed and still do! I was diagnosed about 2 years ago, that may have changed a bit, but within six months, I was on my own. They had given me any drugs that may help and that was it. My son and daughter were told to find a cafe for me to join, or seek others online.

For the first year, or two, following the diagnosis, I became very depressed and my condition took a major turn for the worse. I didn’t want to be here and I think without my son and daughter’s support, I would have just got worse. I’m now fighting for every breath of life I have left and intend to get everything I can out living with my dementia.

Hope you and your families stay safe and keep well! Christmas will soon be here!

 

[Baker17]

Hi @Banjomansmate Thank you for taking the time to answer these questions.

I understand the User Name, now! Like it!

I’m not that up on, Lewy Body Dementia, but I will research it as I think it is important to understand the differences and the similarities too!

When was he diagnosed?

It sounds like the signs and symptoms started to be noted around 2013 to 2015. Was it you that noticed this happening, or was your mate aware of it too?

It does seem that there is a time lapse from having his pacemaker being fitted and the first signs of any problems.
Interesting to hear you think that you thought he was having problems after general anaesthetic. I have read other bits about this, but this related to Vascular Dementia, which makes more sense, or I should say, it makes more sense to me.

As a bit more about me. I used to play guitar, but lost a lot of the fine control of my right hand. I tried for a while with keyboard, then Ukulele was becoming popular, so I tried and I’m still playing, or trying at least. I cannot remember the words of a complete song and now rely on a folder of songs, but that’s ok.

I’ve never really been into sudoku, but I have tried it. I also tried jigsaws and I find that I can’t do large jigsaws. I use an app and I’m up to about 50 pieces now. Can do the corners and the edges, it’s the middle bit that becomes a bit…. lost! I have to keep all the pieces upright too, it’s the orientation thing. Keep trying, that’s what I say and it is worth having a go!

Do you still play together? Would love to know what songs you were in to?

Hi @nita and thank you for completing the questions, much appreciated!

So, your mum was 86 when she was diagnosed?

You say you noticed a sudden change in August of 2010, did your mum know she was having problems?

Chronic pain is a big problem and my own feeling is that the medication, while helping with the pain, has too many other side affects. I was addicted to morphine and still am addicted to other medication that on and have been on for many years. I think the medication depressed me, if that make sense? This is based on my experience with neuralgic pain and muscular pain. For me the problem was that no body was keeping an eye on my consumption of these drugs, I just got them every month.

How is your mum now, did she plateau, or did it get worse?

How are you coping… carers’ have a tough time? I certainly think my carers’ have a hard time dealing with me sometimes!


Hi @Baker17 A big thank you for getting back in touch!

I’ve heard this so many times… this extended length of time from signs and symptoms that you notice and any diagnosis!

So you both were struggling along from 2007 to 2015 and I take it the situation wasn’t getting any better?

I suppose a lot of it comes down to that they just do not know what to do and as soon as they diagnose someone, you would expect help!

I felt very frustrated and disappointed and still do! I was diagnosed about 2 years ago, that may have changed a bit, but within six months, I was on my own. They had given me any drugs that may help and that was it. My son and daughter were told to find a cafe for me to join, or seek others online.

For the first year, or two, following the diagnosis, I became very depressed and my condition took a major turn for the worse. I didn’t want to be here and I think without my son and daughter’s support, I would have just got worse. I’m now fighting for every breath of life I have left and intend to get everything I can out living with my dementia.

Hope you and your families stay safe and keep well! Christmas will soon be here!

There were times when it was struggle in that time but we have an excellent gp and the memory matters team were and still are brilliant support and were involved before the official diagnosis

 

[Banjomansmate]

The Banjoman played Bluegrass Banjo, guitar, ukulele, ukulele banjo (George Formby),bass and autoharp and sang. He taught me to play the autoharp. He was the musician while I was the support for more than 15 years, making banjo lesson sheets and song sheets on my computer.
Sadly it was his musical skills that were among the first to really disappear - suddenly he couldn’t even tune any of his instruments although he was still trying to sing along in the weeks before he died.
After we got together and he retired from work we ended up singing in folk clubs and doing charity concerts with a wide range of songs including singalongs to 1920’s and 30’s numbers. He also belonged to our local Variety Show group, his range of music was extensive.

i was the one who realised what was happening, he never really understood. It was once he started talking about seeing people in his flat that I did some research and recognised the symptoms of Lewy Body Dementia . He was already under investigation for his weight loss and after many tests and seeing a Neurologist incase he had Parkinson’s Disease, he was finally officially diagnosed in 2016 I think, maybe 2017. After a while it all becomes one long blur with all the hospital and GP appointments!

 

[NotTooLate]

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

 

[Sam Luvit]

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?

4. Was there any illness, accident or event that precede the onset of the signs or symptoms?

5. The age at diagnosis

6. Weight loss or loss of interest in eating

I hope you don't mind that I’ve added in the other questions you’ve raised as a response to replies

I was a Carer for my mum from 2015 to 2018

1. Alzheimers, early stages, later possibly with VD

2. She became almost clingy, where she had been fiercely independent. She also seemed confused, but we put it down to grief as her husband, my father had just passed very suddenly

3. There were no signs prior to this

4. My father died suddenly, he had been suffering with headaches, was sent for a brain scan, but the doctor filed the results without offering any treatment, he died four months after the scan following a fall. He had fluid on the brain and my mum felt incredible guilt for not getting anything done. (We had all chased the elusive results but were told they were not back yet)

5. 80

6. Severe weight loss, this is what forced the issue and I moved in with mum. From what I could see, she had lost the ability to cook a meal. She didn’t plan it. She wouId peel potatoes and put them in to boil, then sit down with a cup of tea and forget about it. Her meals could be vegetables with no meat, or potatoes than were reduced to liquid, while she waited for the meat to cook therefore, she ate very little. She gained it back as I cooked and placed it in front of her. I also found that by eating with her she ate more. Later, it was apparent she had forgotten what cutlery was, saying she wasn’t hungry, but by my picking up a knife and fork, she copied me and then ate well

Thank you for doing this. I know there is a mantra about everyone is different and if you’ve met one person with dementia, you‘ve met one person with dementia etc, but there are similarities in the same way that every cold is different, but we all recognise the symptoms.

Keep safe

 

[NotTooLate]

Hi @SamLuvit

First I would like to thank you for taking the time to reply, but second, if I wanted an example of how I would like replies to my questions to be, this is it! It mirrors the questions and you even added the updated idea of additional questions. I couldn’t have asked for more!

The death of your father really had a major impact on your mum, understandably. At 80 I’m assuming they were together a long time?

You say your mum had no problems before and only started after, can I ask how long between the two events?

This might sound like a strange question, but did you mum take any medication, like anti depressants to help with the pain of that time?

I think we have all heard of people that seem to give up, to have no will to carry on, especially when their other half is no longer there, but you would think this is more psychological, but your mum’s symptoms were definitely physical! I haven’t heard of any study that looks at psychological causes that brought about physical dementia type symptoms, but I’m going to look a bit more. If this was a case, then it’s something the medical profession should be looking into more. If you could get the data in, dementia diagnosis following the recent death of partner, you could look at it statistically if nothing else, but it would be a starting point. Could ask the question here?

You say you cared for your mum from 2015 to 2018, is she still alive? I ask to look at the rate of decline.

As for your dad’s sudden death, what can I say, it often seems after the event, when it is too late, we ask why. Four months, a fall and a whole lot of guilt held by your mum. This couldn’t have helped!

I’ll end with your last paragraph; when you’ve met one person with dementia, you have met one person with dementia, is so true! There are similarities and that is often the problem. The medical profession like it when something can be categorised, it just helps. If you tick enough boxes you get in. But, as you rightly say, there are similarities. The brain is a complex thing and it is clearly known that certain areas of the brain, have, more often than not, particular functions, so if those functions are effected then a box is ticked. Dementia is about damage of neurones, or non function of neurones and these can be anywhere in the brain. The cause of this damage, or disfunction can be many things physical, toxic, blood supply depletion and diet etc, but the outcome of these can and will be similar. I’m not saying that my few questions will give any major answers, but it is a start.

I wish rather than obscure, small centred research, a major campaign to collate information could be funded, as I believe this would have a huge impact. Now, with AI and the ability to see data changes visually as changes are made, means the potential is enormous! On this site alone there are over 64 thousand registered users. That means each one is, or has been a carer, or is someone that has dementia. All that data, sitting there!?

I’m just me and it does seem a bit like, head, wall, bang!

Here for example: 3, or 4 Simple questions… and there have been 500views, but only 8 replies!?
Don’t get me wrong, those 8 replies meant everything!

I’ll keep going, for my own sake and sanity, as long as I can and if I can help others, help others too, I will!

Stay safe and keep well!

Richard

 

[Sam Luvit]

I’m just me and it does seem a bit like, head, wall, bang!

Hi @NotTooLate

Yes, my parents were together nearly 60 years, my dads job meant he was away a fair bit of the first 5 years, but they were together for all of the remaining 55 years

The time between my fathers death and mums diagnosis was 2 months. She just happened to be called into the GP for tests as the surgery was doing a batch of “checking health” for the over 80’s. Pure fluke that she was tested and failed, she was early stages, so didn’t display any symptoms

Mum was on BP meds, but wouldn't take anything else, very proud of the fact she didn’t reach for pills for every ache n pain. She was also taking a very mild anti epilepsy drug, following a “vacant episode” approx 6 years earlier. She was checked over very thoroughly and there was no cause found, but the drug was as a preventative measure as such episodes can indicate increased risk of stokes in the future

Mum was diagnosed in April 2015, I cared from a distance, but moved in when I could see her weight loss and general health was slipping. I took over every stressful thing I could think of; bills, shopping, cooking etc and she plateaued. After two years there was a dip across everything, confusion, memory, aggression, loss of interest etc. Her GP was pretty useless, telling her it was “just part of getting older” and telling me he wouId not review her meds as she was on the best

She fell and broke her wrist January 2018, then did it again in June 2018. At the second admission the Consultant asked my permission to stop the epilepsy drug as it was also a blood thinner and it had been noted on her January admission she had a few bleeds on the brain. Her GP had not removed the drug as per the hospital suggestion. This now meant the few bleeds were innumerable. She was discharged home to die, which she did five weeks later in August 2018

Dad had his brain scan in August. I asked about the results, but he said they weren’t back. Mum asked the surgery and was told they couldn’t tell her (not even if they were back). We asked a few more times. Dad fell a few months later. I raised merry whatsit with the paramedic, who checked the records and found the results. No action had been taken. He died 2 months later following a stroke, loss of 30 years of memories and 2 bouts of pneumonia. The second and final admission saw us all standing round a resus bed, telling jokes, dad telling us how much he loved us (I should have known then), but we left him. I drove 80 miles home, went to work and got a call at lunch time “I don’t like to do this on the phone, but your dad died an hour ago and we can’t get hold of your mum”. I’m surprised I’ve not been diagnosed myself!

My mum felt incredibly guilty. Felt she should have pushed for the results. She was a retired nurse, so thought she should have done more.

I’ve long thought there is a link between a “shock”, be it the death of a loved one, a fall or broken bones. if you read through the threads, you will see over and over again “had a fall”, “broke a hip”, “death of partner, child or lifelong friend” and diagnosed within months. It’s too much of a coincidence for me for there not to be a correlation

I’ve heard a nurse describe dementia as a brain injury. With Alzheimers the brain keeps on dying. The pathways are destroyed and new ones formed, but it can’t go on forever. It’s a very cruel disease.

There is a lot of head banging with this. As a Carer, you see it up close n personal, yet the medics often dismiss us. I knew my mum was declining, but was told I was wrong We notice the changes and diagnose UTI’s, TIA’s but often get told we are wrong, until we are proved right. No apology naturally

There is a wealth of knowledge on this site, if it could be tapped into and used by researchers, it could indeed prove invaluable. It’s a great place to rant at the world, moan about our invisibles and look for answers or moral support. The anonymity means we can be brutally honest. It also probably means many will not want to get involved, but I hope you can find a way to use what you find to help everyone. It’s what we all want at the end of the day.

I’ve reviewed the guidelines and changed them to “act like everyone else has the virus ... “. It’s the only way to really keep safe

Keep safe

 

[Toony Oony]

Hi @NotTooLate
Fascinating to read others' full experiences as it were, other than just seeking a solution to an immediate problem!
So, to answer your questions, with the addition of anything of relevance I can think of:

I was Mum's carer, before I moved her to a Care Home .... and in many ways also her carer while she was there. She died at the beginning of February. She was 91. She was in the CH for just over 2.5 years.

1. She had Vascular Dementia, although it was mooted after a while, that there may have been a bit of Alzheimers too.
2. The first signs I noticed were depression and withdrawal in a person that thrived on company and social situations. A very odd reaction to new dentures resulted in not eating, with inevitable dramatic weight loss and associated medical issues. Dramatic hypochondria and neediness, inability to use phone/TV/washing machine etc and constant panic phone calls rang alarm bells. The hypochondria and constant anxious contact with GP was the diagnosis trigger. A type of food 'anorexia' (think food flushing, throwing out of the window, pushing down sink, depositing in communal areas and thinking she was fat when she was skeletal) was another sign.
3. From diagnosis to death - about 2014 to 2020. Once moved into Care (from Assisted Living) the dementia was much more obvious. Previously lots of 'hostessing' happening and an abundance of (initially believed by me!) explanations of weird occurrences.

Mum had a bad fall and broke her pelvis in 3 places about 2 years before things started to not seem 'quite right'. Despite the severity of the fall and her inability to walk unaided, she went against medical advice, would not remain in hospital and discharged herself to a house with an upstairs bathroom, no help and told them not to tell me. I am her only relative and we had a close and loving relationship. Thankfully her friend tipped me off! Mum did not seem to recognise that there was a problem, but had no idea how she would cope. Hindsight is a wonderful thing - but perhaps that was the start? I just thought Mum's fear and hatred of hospitals was to blame.

Mum would not have lasted as long as she did if she had not had 24/7 assistance. The depression never left and she really hated what she had become and particularly the need for personal care. However, for the last year she could not communicate properly and had some quite strange behaviours. The saddest for me is that for the whole 6 years she could never remember my very frequent visits and therefore thought she was forgotten. She was even telling a Carer at the CH that noone ever visited her when my daughter was just behind a door 'spending a penny' in Mum's ensuite bathroom!

With hindsight, my daughter and I have recognised incidents that occurred well before things started to be noticeable that we previously paid little attention to. However with with the benefit of hindsight we are sure these may have been early symptoms.