Mum has completely lost all memory.

[Woozysue]

Hi there,
as per the title, my mother, 79 with vascular dementia, has completely lost her memory of everything now.

She doesn't know she has any family at all now. When we visit, she takes a minute to study faces, then recognises her children-somewhat, although she doesn't recognise us as her children, or even as anyone close to her, just someone she is vaguely familiar with.
If my Mum's asked if she has children, she says no. If our names are mentioned she asks who are they.

Other long term family members, such as in-laws, grandchildren etc. she sadly hasn't had a clue about for a good while now .

My Mum doesn't even recall that she had any siblings, or who her parents were etc. she doesn't know any places she used to live, work or have any long or short term memories at all.

In her bedroom, she cannot remember that she has an en suite bathroom and doesn't use it unless someone takes her, then it's a surprise each time.

If you give her sweets or chocolate, she throws them in her teacup, as she has forgotten what they are, or what to do with them.

I've read that vascular dementia patients usually don't completely forget close family, but obviously my Mum has and so it makes me sad to think that she might feel alone.

I knew to expect memory loss, but this is so severe, it's very difficult to try having any conversations with my Mum at all, as she cannot remember a simple sentence even.
You have to repeat yourself at least 5 times, in the slowest, simplest form, then she'll begin a reply, but it changes based upon what she's last seen,
eg;
Me- Mum do you like chocolate? (X5)
Mum- yes the bird (babble incoherent)
She doesn't ask anything anymore, she's unable to think of anything and is mostly disinterested in us, but likes to watch what others are doing.

Other than that she's reasonably well, eating ok, less fussy than ever, as she's forgotten she doesn't like a lot of foods. 🎉
My Mum doesn't seem unhappy, although she did start getting a bit aggressive a couple of months ago, with staff and other residents.

Has anyone else experienced this total loss of memory, but their loved one seems well otherwise? Is this a normal part of the decline?

Mum seems too well to be heading towards the later stages, but I'm shocked at how she cannot recall a single thing about herself, or her life, despite many stories and prompting.

I'm wondering if the dementia is progressing further and faster than I think it is, perhaps?

Thanks for reading. x

 

[McSuffolk]

Hi @Woozysue
I hope it will come as some comfort to know you are not alone in the situation that you describe as my mum is 77 and while maybe not quite as far along as yr mum, she is moving along that same trajectory of appearing to have almost no memory. Can’t remember any jobs, her ex husband (my dad), her home of 46 yrs, and although she recognizes me still (not always describing me as daughter, sometimes I’m her sister), I am pretty certain that she doesn’t recognize her grandchildren anymore. My sister hasn’t been identified as her daughter or any sort of relative for around 2 years now, although mum always seems happy to see her and enjoys her visits.
Thankfully at this time she lives ‘in the moment‘ and seems, on the whole, to be happy most of the time.
It’s very difficult to experience this and like you I wonder how she can present as being so very well with little else wrong when her brain doesn’t retain anything! Like yours, my mum expresses no interest in us, in anyone, or really in anything and although she is not incoherent her sentences aren’t making sense lots of the time. It’s such a very bizarre thing.

 

[Grannie G]

I never monitored my husband`s memory so have no idea what he did or did not remember.

I didn`t ask him anything, other than are you hungry/thirsty, do you want a drink/some food?

When he saw me and our son, he smiled but I didn`t know if he really knew who we were. He smiled at anyone who greeted him.

When he was at home with me, he would stand at the living room door, looking left and right, not sure which way to turn

When he went into residential care, he had no idea where he was or where anything in the home was.

Some people test their people with dementia for reassurance, they show them photos, they ask if they know who they are.

Others expect little from them as long as they are safe and comfortable.

on the whole, to be happy most of the time.

but likes to watch what others are doing.

This is good.

 

[Angel55]

💗 Hello

Dad still has good speech still and chat but and here's the big but the words are just that really, I notice that he picks the wrong word sometimes and he cannot always understand what we are saying and we have to repeat ourselves in another way with less words or slow down and also I notice we that we are on repeat far more, there are other things that notice when I visit that are just best described as getting worse as you would expect with this illness, just generally things are getting worse.

I used to test his memory out but now I just hope he is as comfortable and safe as he can be.

 

[helpingpeggy]

This sounds familiar, my mum has forgotten a lot of the same things, but is physically fit and very mobile. I find it easier to have activities to do with her, like simple jigsaws or arranging flowers or going for a walk or looking at a magazine. I try not to test her with questions about what she can remember.

 

[McSuffolk]

Yes, there’s no testing going on - hope that isn’t the impression made by my post it’s purely observational. I have learned to live only in the moment during my visits and have never taken any photos along to look at with mum as I don’t want her to be faced with her own lack of memory

 

[2ndAlto]

My OH has very limited memory now - anything recent has completely gone and the past is more confabulation than actual memory. He knows I'm someone but doesn't really recall that I'm his wife (married almost 50 years) - that's just the way it is. However this morning our son came on the radio in the car and immediately he said "that's Will! " And this is a son who lives over 1000 km away and we only see him a couple of times a year... but maybe it is like recognising old songs??

 

[SherwoodSue]

That’s quite a challenge for the family. It isn’t uncommon for one type of dementia to become a mixed dementia as time goes on. There’s now real push to document this as it’s the symptoms that a family and care team are trying to address that s important rather than frequent scans etc.

We all Google our loved ones conditions , it’s understandable but it’s thrown you are curved ball because as you say you understood this happened in Alzheimer’s but less so with Vascular?

And so it’s an unhappy turn of events

I am trying to teach myself not to look too far ahead. It’s really hard as I like a plan in life generally. I am glad more foods are well received.

Best Wishes

 

[Woozysue]

Hi again,
Thank you all so very much for taking time to read and reply, it's a relief to know that this can be normal, but it's still sad, as I feel like there is only a small fragment of my mum left.

I'm sorry if I gave anyone the wrong idea, no-one tests, or question my mum. (Other than social worker, grrr).
We might ask if she'd like the chocolate or sweets we brought, (which she throws into her cup of tea or similar haha, as she's not sure what they are, or what to do with them anymore), but it's mainly just things like when the staff say, oh look your daughter is here to see you, my mum looks very confused because she doesn't know she has children etc.

I know I shouldn't have consulted doctor Google, but we were left nearly 2 years during lockdown, awaiting a formal test, without any help, or advice, so I had to do something, as we were floundering to care for her, to be honest.

We do try to live for the moment and try to make my Mum happy, but it's getting harder and harder.
Helpingpeggy, unfortunately she's no interest in crafts, puzzles, magazines, or much at all. Other than watching folk, she's not very interested in us, or anything really and is mostly glued to her chair, or bed and doesn't want to be moved from them. The staff are struggling to get her on little trips now, when previously she enjoyed going out.
To be fair she is very tired a lot though now and can only shuffle walk, which probably doesn't help with walking on the trips.
I really want to spend quality time with my Mum though, but it's getting so difficult.

I'm not sure if those late stages are coming soon, in one way it would be a relief if they were, because my mum always said don't let me live like that, when my grandmother had Alzheimer's. So I'm wracked with guilt that she's living what was her worst nightmare.
On the other hand, I desperately don't want to be without my Mum, and I get so upset at each decline, it's ripping my heart out, but I am consoled that she is oblivious and as happy as she can be.
Sherwoodsue, my mum has basically had 1 scan and a memory test, nothing else not even medication, nor any further interactions with a consultant. I think due to the lockdowns, she was too late being tested amto start any meds. 😭, so we're not really sure if it's definitely what they first diagnosed or not.
2ndAlto, I'm so sorry, it must be extremely sad to see your other half decline. Isn't it strange that he recognised your sons voice, I find dementia so confusing, my mum doesn't recognised us as her children, yet bizarrely one day she said, oh hello xxxx, to my husband, who she hasn't known for the past 2 years+.
Mcsuffolk, wow our Mum's sound very similar and I do take comfort in having someone to talk to and be reassured that my mum's symptoms are just part of the pathway, thank you.
Thank you Granny G, and
Angel55, aww I'm just the same, I am happy and consoled that she isn't unhappy, or distressed.

Sending hugs to you all xx

 

[Grannie G]

I really want to spend quality time with my Mum though, but it's getting so difficult.

All you need to do is sit with your mother and hold her hand. She’ll be comforted by your presence.