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Very chronic risk, Vascular Dementia

F

First Officer

Member
Messages
9
Type of diabetes
Type 1
Treatment type
Insulin
Don't know whether to put this in general discussion or type one forum, however...

We thought we had dodged it all. After 55 years of type one diabetes, we had no indications of any diabetic complications. No loss of sensation in fingers and toes. No indications of renal problems. Only a tiny amount of retinopathy in the eyes. blood pressure was only ever so slightly elevated and being treated with an absolute minimum dose. We were looking forward to a happy retirement.

But there was a sniper waiting for us in a form of vascular dementia.

I now realise the first symptoms were visible in 2021. Loss of concentration forgetfulness becoming physically weaker. At the time it looked like lockdown depression. The symptoms were very similar. Of course it did not help that the NHS took lockdown to heart and decided our job was to protect them from seeing patients. So we got no diabetic care all the way through lockdown. Early spring of 2022 we finally saw a GP who recognised something was wrong. And ordered an MRI and cognitive function tests. I got a telephone call from the GP who said "the MRI shows indications of small vessel disease of the brain, look it up on the Internet" then she put the phone down. What a way to tell somebody their wife is about to die. Progression of the illness has been horrifically fast. In just three years she has gone from just a bit forgetful and not quite able to concentrate so well to having absolutely no memory and no longer able to walk.

The purpose of this is to alert people to the risks of vascular dementia associated with very chronic diabetes.

It appears the evidence is starting to build that very chronic diabetes carries an high risk of vascular dementia. Obviously, such evidence could not build until people have been able to be kept alive with improvements in diabetic management over the last 40 years.

I don't know what people can do to protect themselves, but I do know that no one talked about vascular dementia ever. All the talk about diabetic risk was in terms of Retinopathy in the eyes neuropathy and fingers and toes and renal problems.

The only thing I can contemplate is elevated blood pressure is a cause or a risk factor.

Please look after yourselves.

I would hate for someone else to go through what I've just gone through for want of a bit of knowledge
 
I'm so sorry @First Officer What an awful time you and your wife are having, and words fail me regarding the gp who gave you such a diagnosis over the phone, and then put the phone down. That's just disgusting!!!

I hope you've got support from family and friends. I know it's not always easy to find some time for yourself when you are looking after someone else, but take care. Sending you both hugs xx
 
First Officer said:
Don't know whether to put this in general discussion or type one forum, however...

We thought we had dodged it all. After 55 years of type one diabetes, we had no indications of any diabetic complications. No loss of sensation in fingers and toes. No indications of renal problems. Only a tiny amount of retinopathy in the eyes. blood pressure was only ever so slightly elevated and being treated with an absolute minimum dose. We were looking forward to a happy retirement.

But there was a sniper waiting for us in a form of vascular dementia.

I now realise the first symptoms were visible in 2021. Loss of concentration forgetfulness becoming physically weaker. At the time it looked like lockdown depression. The symptoms were very similar. Of course it did not help that the NHS took lockdown to heart and decided our job was to protect them from seeing patients. So we got no diabetic care all the way through lockdown. Early spring of 2022 we finally saw a GP who recognised something was wrong. And ordered an MRI and cognitive function tests. I got a telephone call from the GP who said "the MRI shows indications of small vessel disease of the brain, look it up on the Internet" then she put the phone down. What a way to tell somebody their wife is about to die. Progression of the illness has been horrifically fast. In just three years she has gone from just a bit forgetful and not quite able to concentrate so well to having absolutely no memory and no longer able to walk.

The purpose of this is to alert people to the risks of vascular dementia associated with very chronic diabetes.

It appears the evidence is starting to build that very chronic diabetes carries an high risk of vascular dementia. Obviously, such evidence could not build until people have been able to be kept alive with improvements in diabetic management over the last 40 years.

I don't know what people can do to protect themselves, but I do know that no one talked about vascular dementia ever. All the talk about diabetic risk was in terms of Retinopathy in the eyes neuropathy and fingers and toes and renal problems.

The only thing I can contemplate is elevated blood pressure is a cause or a risk factor.

Please look after yourselves.

I would hate for someone else to go through what I've just gone through for want of a bit of knowledge
Click to expand...
Sorry to read this, @First Officer .

I missed the early signs with my dad as I dropped round my parents house regularly 7 miles across the city.
He was type 2 & reasonably active.
He wasn’t a mechanically minded chap, one weekend morning he was revving the hell out of the engine on his car?
When I enquired as to what he was doing. He mentioned an issue with the “clutch.”
I checked it out & the car drove fine..
I thought no more of it?

A couple of weeks later at work, I had a call from my mum.
They been out shopping & were coming home, he’d stalled the car at a junction & totally forgot how to drive…
My mum don’t drive. A kind passer by drove them home & she’d called an ambulance..

To be fair.
Our family GP (retired now.) was fantastic.
He offered every support going at the time during this period in my dad’s life to help my mum.

You & your wife have my best wishes at this challenging time.
 
First Officer said:
The danger is that by the time you recognise the symptoms for what they really are, it’s way too late.
Click to expand...
I agree..

The problem is with insulin dependant people that are in our lives is the cognitive dysfunction can look like a hypo?

Since the demise of my dad. My mum developed Alzheimer’s.. (this is a non-diabetic clean living vegetarian. The “memory clinic” people couldn’t work out “why?”)
At first, I thought it was a reaction & grieving process after my dad’s demise?
The early sign looked like a “normal thing..” I happen to know bacon is one of the first temptation off the “V wagon.”

My mums always been eccentric. I’m sorry to say I dropped the ball on that one, too..
 
It's a cruel cruel disease. My T2 fil had it for probably the last 10 to 15 years of his life, but his progression was slow and it was only when the cognitive disfunction became really obvious that we all realised. Then of course you look back and see that he had been acting "strange" for a number of previous years. I think it is a complication caused by diabetes and high bgs rather than by T1 alone?

But is there any treatment available to slow it? I agree that earlier diagnosis probably helps the carers/family , but without any practical treatment I'm not sure whether it helps the patient to know? It is something I fear for myself, given my length of diagnosis, I have no idea how I would cope with T1 if I had significant mental impairment.

All my sympathy to you, your wife and friends and family, @First Officer .
 
Thank you everyone for your thoughts.

What is important to me now is to raise awareness (gawd I hate that phrase) of the link between chronic diabetes and elevated risk of Vascular Dementia.

Like I said, we thought we had a clean bill of health because the doctors only talked about neuropathy, renal problems, retinopathy etc.

No one ever mentioned vascular dementia.

Even the slightly high blood pressure was not linked to vascular issues.
 
First Officer said:
Thank you everyone for your thoughts.

What is important to me now is to raise awareness (gawd I hate that phrase) of the link between chronic diabetes and elevated risk of Vascular Dementia.

Like I said, we thought we had a clean bill of health because the doctors only talked about neuropathy, renal problems, retinopathy etc.

No one ever mentioned vascular dementia.

Even the slightly high blood pressure was not linked to vascular issues.
Click to expand...
From my experience as a carer.

All you can do is let them know they are loved & safe.

I was there when my dad passed & my sister & I are about when my mum night walks looking for her childhood home.
She now lives with my sister. We do “shifts.” (A female carer looks in for the hygiene side of things, whilst I’m on duty.)

Mum & I have interesting conversations. It’s like a 6 year old getting to grips with a 93 year old body?
I also don’t sound like me. (Sometimes to her mind. ) but I somehow look like me. What was she expecting, a perpetual 8 year old? Key points in her life, stick.
I’m sure my mum was told on my diagnosis as a kid all the things that happen to diabetics that never manifested.

I’m here for her now.

I would agree with you that dementia or a variant was never one of the risks…
If it happens to me?
To be frank.
I will be well past caring about “it.”
 
My husband is type 2 diabetic and was diagnosed with mixed dementia (alzheimers and vascular) about 15 months ago. We never realised the link between diabetes and dementia until recently. More information should be available and signposted to help with awareness of this terrible disease.
 
Yorkie121 said:
My husband is type 2 diabetic and was diagnosed with mixed dementia (alzheimers and vascular) about 15 months ago. We never realised the link between diabetes and dementia until recently. More information should be available and signposted to help with awareness of this terrible disease.
Click to expand...
Hi @Yorkie121 ,

My T2 dad had vascular dementia.

My mum has alzlhiemers. She is non-diabetic, but what I read is the particular cognitive condition has been dubbed as a “type 3?”
Like a sort of insulin resistance in the brain from what I can understand…
Oddly, at ceartain times of evening & night her confusion & seeing “things” are likely to happen.
I was told at the “memory clinic” from what they understand alziemers can affect perception?
There are “people who are not there” sat on the sofa or in an arm chair, that is just a big cushion. (On further investigation to belay my mum’s concern.)
There is also a fixation on a “white cross” on the house behind the garden. Which is just the glazing UPC frame structure to the conservatory to the house we are sat in?

My mum & I both share the journey on this one…
There does seem to be some form of link. Even though my mum isn’t technically diabetic?
 
It might not be to late get evoo down the Peron two tb spoons a day cook with ev coconut oil cook your chips in lard the brain needs fats!
 
I read a very informative book called "Someone I Used to Be" sorry can't remember the author but it'll be on the internet somewhere. The writer has since written two more books on the progress of her dementia and is now sadly no longer in this world. I gained so much understanding. Also learned a lot of coping skills for the incidents - and others - that have been mentioned here.
 
Jaylee said:
Hi @Yorkie121 ,

My T2 dad had vascular dementia.

My mum has alzlhiemers. She is non-diabetic, but what I read is the particular cognitive condition has been dubbed as a “type 3?”
Like a sort of insulin resistance in the brain from what I can understand…
Oddly, at ceartain times of evening & night her confusion & seeing “things” are likely to happen.
I was told at the “memory clinic” from what they understand alziemers can affect perception?
There are “people who are not there” sat on the sofa or in an arm chair, that is just a big cushion. (On further investigation to belay my mum’s concern.)
There is also a fixation on a “white cross” on the house behind the garden. Which is just the glazing UPC frame structure to the conservatory to the house we are sat in?

My mum & I both share the journey on this one…
There does seem to be some form of link. Even though my mum isn’t technically diabetic?
Click to expand...
My aunt used to ‘see’ people in the room
even to the extent of offering them a cup of tea! In one occasion, because I didn’t want her to be worried about strangers in the room, I went round sitting on every chair saying ‘see, there’s no-one here’. I eventually realised that it wasn’t worrying her at all, and the doctor said my actions were the opposite of what I should have done. Apparently I should have agreed with her because, the doctor said, the images were very real to her and it was more likely to worry her if I disagreed.
 
JudiP said:
My aunt used to ‘see’ people in the room
even to the extent of offering them a cup of tea! In one occasion, because I didn’t want her to be worried about strangers in the room, I went round sitting on every chair saying ‘see, there’s no-one here’. I eventually realised that it wasn’t worrying her at all, and the doctor said my actions were the opposite of what I should have done. Apparently I should have agreed with her because, the doctor said, the images were very real to her and it was more likely to worry her if I disagreed.
Click to expand...
I lift the cushion & agree to the point on how it could look like someone slouching in a tee shirt or jumper..
She seems satisfied with my explanation.
Oddly, during the morning & up to mid afternoon. She’s nobodies fool.
If I jokingly respond to what’s for breakfast? With “guineapig.” I get the response of “oh come on?!!”
Giving her her tablets, “what’s this? Will it do me in??” Nope, but my cooking will…
She gets the joke. But I’d never play around if there is stuff that isn’t there.

I think it depends on how well you know the person..

I’ve read & heard accounts from the more spiritual carers that when the person they were caring for saw “someone,” they took great comfort in the contact of the patient by this “spiritual realm?”
Not the way to have your bias confirmed..
 
My dad had vascular dementia & Louis body dementia, he was also blind & deaf, his last 2 years were terrible to watch, was totally bed bound couldn’t move, very difficult to stimulate his mind as he couldn’t see at all or hear that well. He just lay in bed with his thoughts, he used to say that the furniture was moving and that they were changing the walls. He would tell stories from his past over and over - I knew the stories well from his cognitive years so they were always correct if sometimes a little mixed up.

He was in a fantastic care home wilt an amazing dementia unit. They used to tell me that he talked to my mam all day (she’d passed before his dementia) they did dozens of cruises and he was always on a cruise with her or arguing about packing lol - it broke my heart to hear him but then I realised he was in his happy place.

He died Christmas Eve 2019 - the hours before he passed he was able to sit up unaided and move his head & legs. Hadn’t been able to do that for months. He was also very lucid, knew who was there and who we all were. He kept pointing his hand up into the corner, I asked him what he was pointing at and he said “my mam and your mother but I think I can see my dad too” ( his dad passed when he was 10) make of that what you will but it did give me a lot of comfort
 
lovinglife said:
he used to say that the furniture was moving and that they were changing the walls. He would tell stories from his past over and over - I knew the stories well from his cognitive years so they were always correct if sometimes a little mixed up.
Click to expand...
My mum don’t recognise the house she’s living in which is a fully functioning annex attached to my sister’s place giving her the whole run of the house.
But then know where the loo is, if she needs it?
She talks about her childhood friends, (I’ve met some of them as adults.) but never mentions the war which puts her mind set at a possible 6 years old?
She has trouble reading. My sister thinks it’s her eyesight but the time I spend with her it looks more the reading level at the age of a 5 or 6 YO?
She keeps asking what happened to her parents & acknowledges they are no longer with us.
I just repeat they died a ripe old age & both had great lives..
My mum was actually with my grandfather when he died, she swore he could see her mum?

I reinforce my mum is the parent now. & she can name her 4 kids. If I add on “don’t forget Dopey, sneezy, dancer & Rudolph.” She knows I’m winding her up.. “you’re ‘avin me on!”

I’ve just learned to accept that’s how she “is.” She still my mum.
 
Guys.

Don’t hug me.. I need no hugs. (But thanx.)

It’s a fact of “life.” Our loved ones become vulnerable..

We make sure they have dignity.
 
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