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Memory Loss after years of bad hypos

speedmaster

Member
Hi, my Mum is 78 and a type 1 diabetic (diagnosed over 60 years ago). My Dad passed away 3 years ago and Mum and she has been extremely depressed since.
For years she has had bad hypos.
When she first became a diabetic, she was on bovine insulin until 5-10 years ago. Since then she was on porcine insulin. Her blood sugars were all over the place. She had a lot of hypos over the decades. She went through some weeks having multiple hypos a week, even a day at one point.
Back in July this year she ended up with delirium and was in hospital for weeks. She was hardly eating, had forgotten to take her meds and injections. Her blood sugars varied between 2 and 33 (the Accucheck only reads up to 33 so they were higher than that).

I call her every day and got her to do her bloods and injections (I live far away). But over the years her personality has changed. She's got more argumentative and depressed but most of all her memory has deteriorated.
Since then she has moved to Humulin insulin and despite her eating very little her blood sugars have been far better and stable between 6 and 15.

Mum refuses to go to a memory clinic (although I can't get the GP to refer her either). I think she has dementia (she forgets people's names, names of food, thinks the PM is called Boris, doesn't know what year or month it is or the name of the current monarch). Dementia charities say treatment is available. Her GP and District Nurses say it's pointless getting diagnosed and there is nothing you can do.

But could this all be linked to her hypos?

If so I may be able to persuade her to get help. Otherwise I know she will refuse all help and will not go into a home (I don't want her to either) as she used to work in one.
Getting help is frustrating. I've noticed the decline over decades, even more so since Dad died and I don't know what to do.
Is there any way of finding out if Mum has dementia or related to something else related to diabeties? Is her memory loss possibly diabeties/hypo related? Is there a treatment?

She's also on statins.

Any help would be appreciated. I'm pulling my hair out.
 
Hi @speedmaster , welcome to the forum.

I'm sorry to hear that your mum isn't doing well, sounds like it's very hard for both of you.
I have very little experience with dementia, but what you describe does sound like it to me. There is no cure for dementia (or for possible brain damage caused by hypos).

I'm tagging @Jaylee for you, he has lots of experience with his mum, who has Alzheimer's, and he may have some tips for you.

I also found two helplines in the UK, it may be very helpful for you to talk to them with your questions:

Admiral Nurse Dementia Helpline

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.
www.dementiauk.org
and

Dementia support services

Alzheimer's Society provides help and hope to anyone affected by dementia. Call our support line, join our online community, find support in your local area or get dementia information.
www.alzheimers.org.uk

All the best to both of you!
 
"Her GP and District Nurses say it's pointless getting diagnosed and there is nothing you can do" That's not particularly helpful of them saying that how unsympathetic can you get! I am so sorry what you and mum are going through. There are many helpful links that Anje77 have dropped and I totally understand the situation you are facing. My mum became the same after dad passed and we had always had a very frosty relationship that was compounded 100 fold. You will get there, I just wanted to send you lots of hugs in the process x
 
Quick answer - memory can be lost by low BG - sometimes returns, and on extremes can be lost for ever. I've experienced this.

My mum has dementia (always refused to be checked so technically un-diagnosed, my wife worked in care so has experience and training on dementia so pretty certain).

It sounds very much like that - I'd suggest you talk to her GP and see what they recommend - they might be able to send some one out to assess, telling her something like its a standard check up.
 
speedmaster said:
Her GP and District Nurses say it's pointless getting diagnosed and there is nothing you can do.
Click to expand...

Not many things rile me, but advice like that certainly does. So I'm not an expert but I would ignore their advice.

Also agree about asking Age Concern or Alzheimer's society for advice.

The memory clinic can be difficult for the patient to deal with and so I'm not going to suggest you force your Mum into going, but I would try to persuade her.

There are different types of dementia, but what you are describing sounds familiar to my mum who had Alzheimer's (but not diabetes). She was given some drugs but we were warned that at most they may slow the decline, but there is no cure.

As far as I know the biggest part of a diagnosis will focus on the memory clinic, but should also include brain scans and also blood tests looking to rule out alternative reasons, so even if your Mum is unwilling to go to the memory clinic I would still try to get the other tests done.

At the very least a diagnosis should mean that you as family should get access to professional advice about what to expect if your suspicions turn out to be true. I have no idea how traumatic this is for the patient (but apparently it varies between people), but I know it is almost always very traumatic for the family.
 
Another thought, does anyone hold Power of Attorney for your Mum?
There are two kinds and you, siblings or a trusted other will need both, one for her health and one for her finances.
If they’re already set up and need to be activated, there’s a government website that will tell you more.

Make, register or end a lasting power of attorney

How to make a lasting power of attorney (LPA): starting an application online, choosing an attorney, certifying a copy, changing an LPA.
www.gov.uk

If your Mum’s not set up Power of Attorney then you/siblings can apply to be a Deputy

Deputies: make decisions for someone who lacks capacity

How to become and act as a Court of Protection deputy - eligibility, responsibilities, how to apply, fees, supervision and when your deputyship ends.
www.gov.uk
 
@speedmaster - it might all be made worse by the statins.
I was talking about the same situation on Sunday at the folk club - when I was given atorvastatin my memory was badly affected - I also got bad aches and pains, but my memory was just gone.
My brother in law was prescribed statins as a precaution - he is almost exactly the same age as myself, and he went from an active easygoing husband who read books and had lively discussions with my sister to a grouchy old man who sits in front of the telly with little idea of what he' watched, no longer reads and can't hold the thread of a conversation.
The club organiser was saying how his old friend and neighbour used to be a pleasure to go to visit in the care home, but a few weeks after her arrival she was put on statins, and suddenly lost her memory and her vocabulary, and where before he had to look for her as she was normally up to something with the other more lively inmates, she is now always in the same chair and half asleep.

Some people report they take statins with no ill effects, but it seems that some, like me, are susceptible to damage.
I could not recognise my mother in a photo taken with her sister - I asked my sister which one was which and put a note on it. I have relearnt several hundred songs I used to sing from memory. I have reported the reaction on several occasions to different GPs and it still was not on my records in November last year, so it is no wonder that 'statins are safe and effective' can be claimed.
 
Hi,

Welcome to the forum.

My 93YO non-diabetic mum has Alzheimer’s.
My sister & I share POA. My mum resides with my sister.

My mum was referred to a memory clinic for diagnosis by her GP, they recommended she attends the assessment with someone who know them well.
To which I took her.

She was a vegan non-smoking/tee total with an active life.
They had no idea what could cause this, due to the above.

Bizarrely.
She can’t remember 1 minute ago. I can spend every waking minute explaining where my sister is, that the van parked outside is mine, that the “person” sat on the sofa is just a pile of cushions?
From what I know, Alzheimer’s affects perspective on vision, taste & smell. She quit often tells me she can smell “something burning.”
But she knows her family & even my wife.
Can’t recall what day it is or the PM.
But happily recalls old tune lyrics, singing along.
& blurted out 3 correct answers on the “weakest link” game show we were watching the other night? (Among other things that come up on the news.)
There was something about Grenfell tower. She said, “didn’t that place catch fire?”
When a door came off an airplane? “Wouldn’t they all get sucked out?”
“What’s a pangolin?” Like an ant eater. “What’s an ant eater?” Like an aardvark. A ruddy badger with scales…
We’ve always shared an off beat sense of humour..
Yet she forgets where she lives…

Statins.
My mum had been on statins up until sometime last year.
I enquired to her carer (who comes round whilst I’m “mumsitting” for the hygiene side of things.) on a certain pill missing from the box? I was told the GP took her off them.

I’ve read there can be cognitive affecting side effects with some users?

You have my best wishes, @speedmaster .
I’ve just come back from staying down with my mum whilst my sister gets a break? (Been doing this mumsitting every couple of months for the past 12 years.)
I’m lucky my mum will laugh at anything, she’s easily brought round to the sunshine if confused & fretful..
 
Thanks for all your replies.
Jaylee, sadly My Mum also has extreme depression. She has stopped answering my calls and now also drinks. I bought her wine before Christ,as because she said she was giving them out as presents. She didn't. I can't say anything because she gets angry, but when I didn't order wine with her Tesco delivery she didn't answer my calls for 8 days.
After Christmas I noticed she was drunk one some calls and can get quite abusive or upset. I don't think she realises and probably forgot what she has had.
Her personality has changed. She's not the same Mum.

I will ask the GP about Statins.

I've been in contact with the Age Concern and Alzheimer's society as well as Dementia UK.
Their advice has been pretty consistant. THey say the medications do work at slowing it down but you need to get officially diagnosed first.
That's the problem.
Unless the GP agrees I can't get an appointment with the memory clinic.
If they agree and refer her, my Mum has to agree, which she currently doesn't and refuses to go.
Even if she agreed, the waiting is ONE YEAR to see the memory clinic.
Mum refuses the GP to share anything with me. That's because she is paranoid about going into a home. She used to work in one and was a home help for 20 years. But I've told her countless times I won't put her in a home. I can't anyway, I don't have power of attorney. But because of the dementia she doesn't remember anything I've said.

And I've noticed it's getting worse. I can't talk about the past because all her memories are humbled up, they changed and become these elaborate stories she's convinced are true but are very different from the same ones I"ve heard over and over through the years.

She's getting aggressive and angry on the phone.
She keeps saying she wants to go out and to cancel the carers that come in, but she doesn't go out on her own and hasn't for years.. She sleeps all morning and the carers often wake her up so them not being there wont make any difference anyway.

It's catch-22. There seems to be nothing I can do. Every turn is a roadblock.
It seems almost impossible for Mum to get diagnosed with dementia unless they change the system. There is NO help available in this case.
 
Fairygodmother said:
Hi @ speedmaster,
I’m sorry to hear about your mum’s difficulties.
Is there a branch of Age U.K. in your Mum’s area?

If there is, you could ask for their help. You could ring them anyway for advice.
Click to expand...
I had already contacted them. They went and saw Mum and she refused all the available help. They wont do anything unless Mum agrees to it, or asks.
There is nothing I can do, even though I'm her only son and next of kin. Mum refuses to even wear a necklace or bracelet that will sent alerts in case of a fall. She wants to cancel the carers she has.

It's so frustrating I want to scream.
 
I've been through that and sort out all her financial stuff because DAd did all that and Mum has a panic attack whenever a bill come sin (and she puts them all over the house). But she refused POA for her health and wellbeing because she is paranoid about putting her in a home (which I wouldn't do and constantly tell her I won't). But I expect that the dementia and her being paranoid.
Looks like under the current system, there is nothing you can do for someome who has dementia but doesn't want to go to be tested or have. Gp that ignores all your evidence and bases everything on one visit where Mum could count from 10-1 (oddly that is something she can do but she doesn't know the name of a banana).
 
To be honest a POA on health & wellbeing are pretty useless as they only click in when someone has been deemed as unable to make their own decisions, different from a POA that can be used anytime (I had both on my dad and he had vascular dementia & Louis body dementia & I never used the medical one even when he was on end of life) any doctor can override a medical POA if it’s in the interests of the patient, the onus is on the holder of the POA to prove it isn’t.

I’m really sorry that things are so difficult with your mum, dementia can change their personality and the way they are but remember your mum is still in there somewhere. My dad talked about his past memories a lot and they were always a bit muddled. Go with it as for them it’s real and it confuses them greatly and is more upsetting for them than us when we try to correct or disagree

For example My dad used to tell a tale on a regular basis - one time suddenly a monkey became part of the end of the tale, didn’t contradict him just asked what kind of monkey was it, he remained happy & calm and I still enjoyed interacting with him (and learned a lot about a monkey as he was spot on! lol)
 
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