Question Time for Carers... Week 2...Only 1 Question?

[NotTooLate]

Hi @Wakky

Quick Questions:

Your Mum died within 5 years of her diagnosis, can I ask how old she was please?

Sorry to hear your husband now has Alzheimer’s. I take it he was diagnosed after scans and test?

Can I ask how old he is and what were the symptoms you noticed?

Did your husband know that he had problems?

Stay Safe and Keep Well!

Richard

 

[NotTooLate]

Hi @TNJJ


Interesting you say nobody noticed, but you did! Close family members are a valuable source of knowledge that is more often than not overlooked, or ingnored! In my opinion!



So, it sounds as though the problems would have been an impact on his blood supply to his brain and maybe the reason the dementia problems develop.


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

Stay Safe and Keep Well!
Richard

 

[Wifenotcarer]

Hi @Wifenotcarer

Like the name!

So, was there anything before the signs of short term memory loss, such as illness, depression, drink, drugs, accident, injury, or fall etc?

I’m sure the fall didn’t help. Another one of those things you hear again and again; someone has a fall and demential symptoms get worse.

Interesting about the stroke thing… so you and the doctor thought it was a stroke. Did he show signs of a stroke, face down one side, slurred speech etc?

So, what did they say cause the onset of the disability problems that followed?

How are you both coping now?

Stay safe and keep well?

Richard

Sorry I have been avoiding Talking point (and the Daily updates) because I find them too worrying and upsetting.
To answer your questions. No he did not have the drooping face and as for slurred speech, he could not speak at all for a while afterwards. As to the original diagnosis it was Post traumatic Stress Disorder! OH had polio when he was 17, spent months isolated in an infectious diseases hospital and lost muscles in his left arm which was always weak thereafter. However he was determined to beat it and took up drumming as therapy, playing in many bands well into his 70s until the Dementia took hold. He also carried on working as a Carpenter and Joiner, though often in great pain. It was the weak arm that he broke and dislocated so the psychiatrist decided that the trauma resulting from the fall had brought back the trauma of the polio. Later he had a brain scan which showed clear evidence of deterioration in both frontal lobes and thus to his diagnosis.

He has been resident in a Care Home in our village since last August and has blossomed there, much calmer and contended. Last week he was ill with cellulitis but now is much better having been swiftly diagnosed and treated with antibiotics. Of course I cannot visit which is a torment. I have seen him via skype - he looks well but says he is bored.

 

[Wakky]

Hi @Wakky

Quick Questions:

Your Mum died within 5 years of her diagnosis, can I ask how old she was please?

Sorry to hear your husband now has Alzheimer’s. I take it he was diagnosed after scans and test?

Can I ask how old he is and what were the symptoms you noticed?

Did your husband know that he had problems?

Stay Safe and Keep Well!

Richard

Hello Richard. My mother was a month away from her 73rd birthday when she died.
My husband was 71 in January. The main thing I noticed was behavioural changes, he seemed to be very "volatile" and ask why I kept arguing with him, when in fact I was agreeing with him! They were totally irrational "spats" which left me dumbfounded. We were staying with friends in Somerset and he had one of these irrational spats with my friend. Afterwards, she said that I such encourage him to see our GP. He was also more forgetful, denying that I had told him something and refusing to believe me when I insisted I had. Often, he would say that he mustn't have heard what I said, or he hadn't been paying attention.
When we went to the Gp, who did a short memory test and even at that time said he thought it was AD. He did routine blood tests, all normal apart from folate deficiency. He referred us to the memory clinic and a full set of written and verbal tests were done. The specialist referred him for an MRI scan, but told us there and then that he had AD, but that it was in the early stages.
Scan showed some brain shrinkage, but nothing of great significance.
My husband did not, and to some extent still does not, believe he has a problem. He says he has never been good with remembering names or addresses and says that as he has never done much reading, he is not good with words.
I am sorry for the rambling answer. I did ask a couple of friends to let me know if there were any odd incidents, and one couple informed me about 2 things they had noticed, just before the time when he saw the GP.

 

[NotTooLate]

Good Morning @Wifenotcarer

Thank you for getting back in touch.

Polio what a terrible thing, we are so lucky that it is not around now!

He certainly didn’t let any problems keep him down.

PTSD known to come back years later and one of those areas I think may have a detrimental physical affect on the physical brain in later life.

It seems that the broken and dislocated arm had a major impact on him and understandably so.

It is good to hear he is doing well in the Care Home, too often we hear negative accounts. It is a pity you cannot get to see him, but soon hopefully?

I hope you are finding things to do and keeping active as much as you.

Stay Safe and Keep Well!

Richard

 

[NotTooLate]

Good Morning @Wakky

Thank you for the information.

Aggression is one of those strange symptoms that hit a lot of people suffering dementia, including myself. I tried to rationalise my own, but I couldn’t put my finger on it. Silly things would tricker me off and then it’s hard to let go, the more this went on, the worse it would get. In the end I would be ranting about anything and everything, related or not… crazy! I’m like a dog with a bone. The best thing that we have found is to leave me be. Not to get involved and just give me space. I then seem to settle in time and realise how much of an idiot I’ve been, usually end up saying sorry. However, this doesn’t stop those triggers, that I just cannot block.

Denial, is another common thing. Who would want to know and believe they have this thing that is seemingly eating the you out of you!? But, it isn’t just one side is it, you know?

The one thing that really gets me, is the knowing. I am so aware of what is happening, that I often wish I didn’t, to be oblivious. I certainly do have problems and they have been grouped into this thing called dementia, but I believe these symptoms only point to a problem. Now, finding the problem is my quest, but I think I can beat it once I find it.

Dementia is a group of symptoms and not a thing we catch. They say, ‘You cannot kill the monster till you first give it a name!’

I hope you are keeping yourself well and active!?

Stay Safe and Keep Well!

Richard

 

[PaulEd]

Last week I got 15 amazing replies and this gave me a lot to think about!

My parents went through a separation in their mid and late 70s: it was awful to witness and I seriously believe that this event had a a role in hastening the disease. Of course there are pathological causes which have been building up over the years but the stress of the separation took its toll. My mum lost her confidence (6 years ago she would travel easily on her own between the UK and other countries). There's lots of evidence now that poor sleep in younger life can lead to Alzheimers and so does a difficult menapause.

 

[Emmcee]

Hi there,
In 2012, when my Mum was 80 years old, and at a time when she was fully independent, still working from home and running her own business, she had two very distinct episodes within the space of a few weeks.
1) A minor car accident that left her very shaken up and resulted in a complete loss of confidence when driving.
2) She was diagnosed with a chest infection, prescribed antibiotics that she was allergic to, admitted to hospital and developed hospital acquired CDifficile. (She was hospitalised for a fortnight and also presented with a mild delirium).
Following these events, in addition to a noticeable slowing of thought processing and an inability to divide attention, she started to display a number of other deficits of executive function. She started smoking & drinking in a way that was quite new, started falling quite a lot and this, in turn, resulted in a few epiosdes of hospitalisation following various injuries. After sustaining a shoulder displocation and damage to the nerves and muscles, she was then prescribed Gabapentin which reduced her cognition further....
To me, it was obvious that she was displaying a progressive cognitive impairment but she was only formally diagnosed with vascular dementia in August 2017 although it had tentatively been suggested by various psychiatrists in the two years prior to this. (I think they were reluctant to make the diagnosis before because her Addenbrooke's Score remained withing normal limits although her performance for Frontal Lobe function was deteriorating.
Emm

 

[NotTooLate]

Good Morning @Emmcee

Thank you for your valuable information.

When I read something like this, it seems obvious and then hearing your understanding of your Mum and the situation, just adds to where it was going! The more I hear things like this, the more I come to believe that those with the power to do something just don’t listen. They are listening for those things that fit into the tick boxes. They just don’t have the time to do anything else. You end up going around and around in circles, all the time desperate for answers and help, which they all know isn’t there…. Which is another major factor in diagnosis delay!

I’ve not heard of C.Difficile related to dementia, but that is just my small bank of knowledge. However, there is a growing thought that gut bacteria and the functioning brain are related. C.Dfficile is very much related to the gut and can cause fever and the related mental problems this brings. C.Difficile is not good!


You talk of mild delirium and then go onto mention that she had a few episodes in hospital. Was this due to the injuries?

Gabapentin can be prescribed for neuralgic pain, but as you mention, it can have an affect of cognitive function. I’m trying to come of this now and it is horrendous!

Did you ask why it was VD rather than any other form of dementia? Not that it would have made any medical difference in terms of treatment?

There doesn’t seem to be any consistency of testing, it just seems to come down to preference of the person in-charge.

I’ve added a some notes about the Addenbrook’s Test, just in case anyone would like to have a look and maybe try it for themselves? Addenbrook's Test Notes

It was obvious that you knew what was going on. Was your Mum aware of the problems?

How is your Mum now?

Stay Safe and Keep Well!
Richard

 

[Wakky]

Good Morning @Wakky

Thank you for the information.

Aggression is one of those strange symptoms that hit a lot of people suffering dementia, including myself. I tried to rationalise my own, but I couldn’t put my finger on it. Silly things would tricker me off and then it’s hard to let go, the more this went on, the worse it would get. In the end I would be ranting about anything and everything, related or not… crazy! I’m like a dog with a bone. The best thing that we have found is to leave me be. Not to get involved and just give me space. I then seem to settle in time and realise how much of an idiot I’ve been, usually end up saying sorry. However, this doesn’t stop those triggers, that I just cannot block.

Denial, is another common thing. Who would want to know and believe they have this thing that is seemingly eating the you out of you!? But, it isn’t just one side is it, you know?

The one thing that really gets me, is the knowing. I am so aware of what is happening, that I often wish I didn’t, to be oblivious. I certainly do have problems and they have been grouped into this thing called dementia, but I believe these symptoms only point to a problem. Now, finding the problem is my quest, but I think I can beat it once I find it.

Dementia is a group of symptoms and not a thing we catch. They say, ‘You cannot kill the monster till you first give it a name!’

I hope you are keeping yourself well and active!?

Stay Safe and Keep Well!

Richard

Hello Richard, thank you for your response. It was very interesting to hear you describe what you feel like when getting into a "ranting" episode. My OH can be very intimidating when he is ranting at me! I do try not to get involved, but if I try to walk away, that incenses him too!!!! Your description of how you feel having an awareness of this horrible illness almost broke my heart. Research for this is bottom of the heap, care seems non-existent especially for self-funders, until all the assets you worked for have been used, and care in AD homes costs more than in others!!! Part of me is still thinking that if I got Covid19 and died, I wouldn't have to face this (nor would my OH if he got it) Sorry, I am being miserable - it's past midnight and I am sitting up on my own. Best wishes and goodnight

 

[MaNaAk]

Dear @NotTooLate,

Dad started to get forgetful a few years before Alzheimers was diagnosed but a specific date in 2015 seemed to be a turning point when he lost his sister-in-law. He seemed to be coping with her death but it was just after this that he was putting things in strange places and seeing people who weren't there. However he also had other health problems such as diabetes type 2 but this was well controlled and he was also deaf. Unknown to us and him his hearing aid prescriptions were out-of-date and we found that his ears were very blocked and we were told that this had significant impact on his dementia.

MaNaAk

 

[EdgsonW]

Last week I got 15 amazing replies and this gave me a lot to think about!

All were extremely well stated and informative. It was obvious that these were people with a lot of first hand knowledge regarding all things related to dementia.

What did disappoint, a bit, was that there were over 870 people that viewed this post!

This week I’m going to try again, but only with one question.

This will be based on the main findings of last week’s questions.

This Week’s Question:

Did you, or the person you cared for, or are caring for, have some significant event prior to the first signs, or symptoms of dementia being noticed?’

Yes, or No?

If you would like to add the information about the nature of the event, I would be grateful!

Such as:

Stroke
Seizure
Fall
Blow to the head
Accident
loss of a loved one
Illness
Heart Attack
Mental illness
Drugs issue
Drink issue
Depression

or anything else that you think may be related?



Thank you for your time!

Stay Safe and Keep Well!

Richard

Yes, my wife developed a bladder problem and as the diagnosis took a long while to discover (cancer) she became more worried about it and then her memory began to deteriorate. We thought this was worry but finally Alzheimers was diagnosed after 3 years and then a cancer was discovered which is now protected. So I'm still caring after 6 plus years.

 

[PaulEd]

......


d damage to the nerves and muscles, she was then prescribed Gabapentin which reduced her cognition further....
To me, it was obvious that she was displaying a progressive cognitive impairment but she was only formally diagnosed with vascular dementia in August 2017 although it had tentatively been suggested by various psychiatrists in the two years prior to this. (I think they were reluctant to make the diagnosis before because her Addenbrooke's Score remained withing normal limits although her performance for Frontal Lobe function was deteriorating.
Emm

Thank you.

 

[Linton]

Quick Question: This blindness is a strage one and just because the medical proffession did find anything, doesn't help! There must have been something wrong!

Did this happen shortly before symptoms related to dementia started to be noticed?

Hi.. Yes it did.. Unexplained.. But stopped us going on camping trip as he was worried about driving.. Can't remember how long after I noticed some changes in memory.. But possibly about 6 months... Wonder if loss of sight crops up. Even for a short time. In anyone else?.. Good luck with everything ?

 

[Sally1975]

Hi Richard, my Dad was diagnosed with Alzheimer’s almost 6 years ago, and he had heart condition and diabetes. They said the combination of these 2 things is what caused the Alzheimer’s. Again there was no warning, apart from the memory loss obvs. Hope you get the answers you are hoping/looking for.

 

[WeeDido]

Last week I got 15 amazing replies and this gave me a lot to think about!

All were extremely well stated and informative. It was obvious that these were people with a lot of first hand knowledge regarding all things related to dementia.

What did disappoint, a bit, was that there were over 870 people that viewed this post!

This week I’m going to try again, but only with one question.

This will be based on the main findings of last week’s questions.

This Week’s Question:

Did you, or the person you cared for, or are caring for, have some significant event prior to the first signs, or symptoms of dementia being noticed?’

Yes, or No?

If you would like to add the information about the nature of the event, I would be grateful!

Such as:

Stroke
Seizure
Fall
Blow to the head
Accident
loss of a loved one
Illness
Heart Attack
Mental illness
Drugs issue
Drink issue
Depression

or anything else that you think may be related?



Thank you for your time!

Stay Safe and Keep Well!

Richard

Hello @NotTooLate My husband had a massive brain stem stroke in 2011 (diabetes and smoking were major contributors) He's been in a wheelchair ever since . Around Aug/Sept 2018 we, the family, started to notice my husband was forgetting simple things, not remembering names etc. So I mentioned this to his GP who arranged an appointment in March last year with the memory clinic and the diagnosis was vascular dementia. He's had monthly visits from a CPN up until the start of this lockdown. His CPN suspects his dementia has been a result of more damage to his brain cells albeit very very gradually after his serious stroke. He is only aged 72 now and already has a good bit of confusion, his communication is slowly getting worse, seems to have developed a bit of OCD. Other than that, he seems not bad. Thanks.x

 

[Shelagh Higgins]

Last week I got 15 amazing replies and this gave me a lot to think about!

All were extremely well stated and informative. It was obvious that these were people with a lot of first hand knowledge regarding all things related to dementia.

What did disappoint, a bit, was that there were over 870 people that viewed this post!

This week I’m going to try again, but only with one question.

This will be based on the main findings of last week’s questions.

This Week’s Question:

Did you, or the person you cared for, or are caring for, have some significant event prior to the first signs, or symptoms of dementia being noticed?’

Yes, or No?

If you would like to add the information about the nature of the event, I would be grateful!

Such as:

Stroke
Seizure
Fall
Blow to the head
Accident
loss of a loved one
Illness
Heart Attack
Mental illness
Drugs issue
Drink issue
Depression

or anything else that you think may be related?



Thank you for your time!

Stay Safe and Keep Well!

Richard

Hi, my Son’s wife wanted a separation, so he had to move house, lost his job, separated from his children. His whole world was turned up side down. He was only 46 at the time. Now 51. Doctor said he was depressed. No family in his area, so I moved up to look after him. Eventually got diagnosis when he was 47.