Possibility to re-train memory of Alzheimer patient

[Travis95]

I am a son of a 56 year old mum, who has developed Alzheimer's Disease more than a year ago. Her symptoms are:

-Unable to retain short term memory: She can't remember if she ate something, or even forget if she went to the toilet. She could literally come out from the toilet and says she has forgotten if she went to the toilet.

-Difficulty in having a conversation: When she wants to say something, she often gets stuck in her words. We need to guess what is she trying to say. In most cases, she would say "its fine/nothing" when asked her anything at all. She would keep quiet in most family conversations.

-Lost interest in everything: When given anything new, she just doesn't engage with it.

-General behaviour at home: She continues what she used to do before Alzheimer comes in, that is reading her emails or checking data on the PC. For now, she looks at her smartphone or PC, looking at data dated back in 2017 (when the Disease starts), or trying to press on random things on the screen of her phone.

She is still capable of physical movements, eg: moving around, eating, walking up the stairs etc; it is just her memory is extremely weak and loss of cognitive judgements.

I am wondering, if there is any way to save her from further deterioration of her brain, by playing brain-stimulating games with her?

My current plan is keep her active. Pretending I don't know anything, making her teach me how to do things. Also guiding her in making simple judgements on her own.

 

[Delphie]

The only thing I'm aware of that might help is medication, but it will only help so much and only for so long, and not everyone benefits from what is currently available. Playing games etc won't do any harm and, who knows, it might slow things down a little but there's no magic bullet and, I'm afraid, further deterioration will happen. That said, for some people that deterioration is very slow, regardless of medication or brain games. So sticking to your plan can't hurt and who knows, maybe there are lots of good years still ahead for you both.

 

[karaokePete]

Hello @Travis95 you are welcome here and I hope you find the forum to be a friendly and supportive place.

I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done.

I did a Uni course a year or so ago that suggested that brain training games can help 'in the moment' but don't have lasting effects. However, they are great for keeping a person occupied and giving them a bit of hope so for that reason I encourage my wife, diagnosed 2-3 years ago, to do them.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Travis95]

The only thing I'm aware of that might help is medication, but it will only help so much and only for so long, and not everyone benefits from what is currently available. Playing games etc won't do any harm and, who knows, it might slow things down a little but there's no magic bullet and, I'm afraid, further deterioration will happen. That said, for some people that deterioration is very slow, regardless of medication or brain games. So sticking to your plan can't hurt and who knows, maybe there are lots of good years still ahead for you both.

Every time I am reminded she has Alzheimer's, I feel extremely sad, helpless, always thinking of a way to save her. I am still having the hope that there is always an outlier case - one treatment that doesn't help the majority doesn't mean it definitely doesn't help my mum.

But also considering my young age in the early 20s, I should be striving for my career and everything else. I don't want to give up everything just for this, but I can't just put it down, she is my mum and I care a lot.

 

[canary]

Of course you care a lot and you want to do everything that you can.
Playing mind games wont do any harm, but dont push if she decides that she doesnt want to.
Eventually, there will be deterioration, though - there is no fixing Alzheimers, even though our hearts desperately want it.

Try and find a balance between looking after your mum and working towards the future

 

[northumbrian_k]

We attended a few sessions at the memory clinic a few months after my wife was first diagnosed. They were badged as "memory retraining" but were more about how the person with dementia might be able to live safely with appropriate reminders and support. The deep-breathing exercises were aimed clearly at the carers who attended.

It is a good idea to try things that might stimulate but these often don't go how one might hope. Then there are the occasional lucid flashes that come out of nowhere. Further deterioration is inevitable, sadly, and largely out of our hands no matter how much we might wish and try to delay it.

 

[Catastrophe]

Sorry to here about your mum. Can't remember where I read it, but read somewhere that routine can help a lot. It has in Dad's case. His routine is pretty set now, and it means that there are tasks he can do because of the constant repetition. If his routine is upset he gets really confused. It can be frustrating and sometimes difficult to fit in with, but means he still retains small amounts of independance.

 

[silversea2020]

I really do not wish to sound blunt but quite frankly there is nothing you can do that will prevent things progressing ...sometimes we just have to ‘accept’ as difficult as this may be... ‘mind games’ will not stop things progressing and you may well end up causing big distress/confusion to your mum no matter how well intentioned - I would recommend continued calm & gentleness is probably the best way forward

 

[Latitude]

My parents stuck to a set daily routine for the last 5 years when my Mum's Dementia first became evident. They had a good system and I've seen how much their routines helped them both. When she first went into care we managed to keep some of that routine going and it served its purpose, helping her to settle and acclimatise a little.

 

[Rosie56]

Donezepil was the most helpful thing for my mother but as others have said, it can only slow down the process, not halt or reverse it. Some older people are short of B12 and supplementing/injecting it can improve their focus, but if you do this it still won't alter the fact that she has a progressive disease. I'm afraid you may be setting yourself up for unnecessary guilt and stress if you strive to 'save' your mum. It will be better (for both of you) if you read up on compassionate communication (I think there's an information sheet to download from this site). It's hard to accept the inevitability of this awful condition but kindness is your best strategy now.

 

[kindred]

What a lovely person you are!
I believe it's the time you spend together focusing on each other and the little task that is important. It doesn't have to be long. For the first year or so after my husband's diagnosis, we spent an hour every day in the local caff doing puzzles etc from a set published for young children, word searches, dot to dot etc. Recently, I found the diary I kept from those years and I had written that my husband said he had had a fantastically happy year. It's the intense being with that matters and keeps the brain functioning in various ways.
My husband has died, and I am in his nursing home as their official volunteer doing 1:1 work with residents like this, because this kind of attention and care and conversation even for ten minutes at a time is what they really want.
all good wishes to you.
Kindred.

 

[Shedrech]

compassionate communication link here
https://forum.alzheimers.org.uk/thr...n-with-the-memory-impaired.30801/#post-413710

 

[Jaded'n'faded]

Before dementia my mum was a great one for quizzes, crosswords and puzzles. After the crisis that put her in a Care Home, I used to take a newspaper in and a few crossword books. I'd read the clues out and give her a few prompts but she was unable to get any answers and just started to withdraw.

I soon realised she saw it as 'testing' her, which she - understandably - resented. Any crossword books I took in vanished never to be seen again. It was the same with knitting - she now claims she never liked it anyway. Mum always has a 'reason' why she doesn't do things - I suppose it makes sense to her. But the truth is that her abilities have decreased massively and there really isn't much she can do any more. I doubt if she could even write her name now though she would claim otherwise. If I did test the theory she would get very angry and tell me to go home

 

[RosettaT]

I was told by the consultant to encourage things to stimulate the brain. Quizzes if that's what the PWD is into or reading or making things and always encourage independence. She said the worst thing you can do is just to let them sit and vegetate. You know your mum, try things you think she will like but be aware there is nothing you can do to stop the progression and as time goes on what she once enjoyed she may no longer do so. This dreadful scourge affects each person differently, some take years to deteriorate, others months.

Tho' different to retraning memory as you mention, in my OHs case it was infections that progressed disease. He hasn't been diagnosed 2yrs yet. The hospital and physios totally wrote off my OH after he was in for 12weeks with an infection and contracted sepsis. Their report said he can't do anything for himself and never would again. I engaged a private physio. He can now after 6 weeks of exercises, repetition and patience, sit up by himself, feed himself, wash the top half, pull his own t-shirt on and off, weightbear (tho' can't quite stand on his own) and talk. However he was always 'doer' and always had a positive mental attitude, if I hadn't tried to give him the best possible encouragement and help I would have felt I'd failed him so understand where you are coming from.
Just try to keep perspective of what is possible and what is not, don't expect too much and above all don't beat yourself up when things progress - whenever that may be.

 

[Travis95]

What a lovely person you are!
I believe it's the time you spend together focusing on each other and the little task that is important. It doesn't have to be long. For the first year or so after my husband's diagnosis, we spent an hour every day in the local caff doing puzzles etc from a set published for young children, word searches, dot to dot etc. Recently, I found the diary I kept from those years and I had written that my husband said he had had a fantastically happy year. It's the intense being with that matters and keeps the brain functioning in various ways.
My husband has died, and I am in his nursing home as their official volunteer doing 1:1 work with residents like this, because this kind of attention and care and conversation even for ten minutes at a time is what they really want.
all good wishes to you.
Kindred.

Thank you, my relationship with my mum wasn't sour before this, its just errands between mum and son. We don't really joke or laugh together due to her strict parenting nature. This makes it hard to suddenly change my approach.
We, the children, believe that all these started after all of us studied abroad, leaving her and my dad at home; they weren't really happy with each other because they can fight over petty little things.

We believe loneliness sparked her Alzheimer. I even turned down my job offer to work abroad, so I can work near home and be physically with her.
I force myself to have lunch and dinner together with her, even if I remain silent - just be physically in front of her, also leave my room door open so she can see me.

Before dementia my mum was a great one for quizzes, crosswords and puzzles. After the crisis that put her in a Care Home, I used to take a newspaper in and a few crossword books. I'd read the clues out and give her a few prompts but she was unable to get any answers and just started to withdraw.

I soon realised she saw it as 'testing' her, which she - understandably - resented. Any crossword books I took in vanished never to be seen again. It was the same with knitting - she now claims she never liked it anyway. Mum always has a 'reason' why she doesn't do things - I suppose it makes sense to her. But the truth is that her abilities have decreased massively and there really isn't much she can do any more. I doubt if she could even write her name now though she would claim otherwise. If I did test the theory she would get very angry and tell me to go home

I can imagine the same thing will happen if I try it, she will say give up after 5 seconds. Also my mum has very much pride (thinking she is always right) even before diagnosis. She will probably think I am challenging her & being disrespectful if I give her exercises.

Though I have one question, until which point did you decide to put her in a Care Home. Was it a very difficult decision? Was it very hard to actually do it?
That will be my very last resort - based on how I described her condition, I think we shouldn't do this yet. My mum can tell that is a Care Home if she sees nurses and old patients everywhere, she will be devastated and this might drastically worsen her condition.

I was told by the consultant to encourage things to stimulate the brain. Quizzes if that's what the PWD is into or reading or making things and always encourage independence. She said the worst thing you can do is just to let them sit and vegetate. You know your mum, try things you think she will like but be aware there is nothing you can do to stop the progression and as time goes on what she once enjoyed she may no longer do so. This dreadful scourge affects each person differently, some take years to deteriorate, others months.

Tho' different to retraning memory as you mention, in my OHs case it was infections that progressed disease. He hasn't been diagnosed 2yrs yet. The hospital and physios totally wrote off my OH after he was in for 12weeks with an infection and contracted sepsis. Their report said he can't do anything for himself and never would again. I engaged a private physio. He can now after 6 weeks of exercises, repetition and patience, sit up by himself, feed himself, wash the top half, pull his own t-shirt on and off, weightbear (tho' can't quite stand on his own) and talk. However he was always 'doer' and always had a positive mental attitude, if I hadn't tried to give him the best possible encouragement and help I would have felt I'd failed him so understand where you are coming from.
Just try to keep perspective of what is possible and what is not, don't expect too much and above all don't beat yourself up when things progress - whenever that may be.

Thank you for your advice. After considerations, me too thinking I should pretend to be stupid - not knowing anything; to encourage her to help me instead. This might make her feel useful. Very often, I will ask her to do some little works as well. I am doing this to make her move her muscles and maybe involve some thinking.
When she has difficulty expressing herself, I don't complete her sentence for her, to encourage her to think.

Do you think what I am doing actually helps to slow down the progression?

 

[Travis95]

compassionate communication link here

Thanks, I find this helpful. In fact, I am already practicing this (learning through experience).
My case however, I think the biggest problem is the other care taker, her husband (my dad). He is has bad temper and impatient. I've reminded him many times she has Alzheimer so do be super patient with her, eg: DO NOT raise his voice. But he does it whenever he is stressed.

Do you have any advice on how to deal with this? I can't just separate them because he will soon be the primary caretaker as I will be working full time soon.

 

[Rosie56]

Though I have one question, until which point did you decide to put her in a Care Home. Was it a very difficult decision? Was it very hard to actually do it?

In my case, Travis95, it wasn't my decision: Mum suddenly suffered a sharp decline in mobility, and while I was trying to get an Occupational Therapist to see her, she had a bad fall. The carer found her crawling along behind the front door, unable to get up, and it wasn't clear how long she had been there. Mum was taken to hospital. The doctors there said she couldn't go home again and could only be released into full-time care. It was a relief as for a long time she had been falling, crashing into bits of furniture and even falling out of bed, but NEVER when someone was actually assessing her, and I was afraid people weren't taking the situation seriously enough. I was terrified of the way she wobbled up and down stairs. She wouldn't accept any change in her arrangements, though, and at that time she still retained mental capacity so her decisions had to be obeyed. After the Big Fall the doctors in the hospital decided she could no longer meaningfully make those decisions for herself. I imagine this happens quite often - an Alzheimer's patient is holding on and on until there is some sudden crisis which means medical staff have to intervene, so they end up making that decision, not the family. It's quite a performance getting someone into a home, or it can be. We couldn't get the home I wanted for her (one much nearer to me) as there's a huge discrepancy between what her local homes charge, and what you'd pay in my area (about 10 times as much - I was flabbergasted when I realised this and that we simply couldn't afford it). I also couldn't get her into our first choice of her local homes because she is shouty and sweary and some homes won't have people like that - they are private businesses, and they can cherrypick 'nice' old people instead of challenging ones. The situation may be a lot easier where you are. I do hope so.

 

[Travis95]

In my case, Travis95, it wasn't my decision: Mum suddenly suffered a sharp decline in mobility, and while I was trying to get an Occupational Therapist to see her, she had a bad fall. The carer found her crawling along behind the front door, unable to get up, and it wasn't clear how long she had been there. Mum was taken to hospital. The doctors there said she couldn't go home again and could only be released into full-time care. It was a relief as for a long time she had been falling, crashing into bits of furniture and even falling out of bed, but NEVER when someone was actually assessing her, and I was afraid people weren't taking the situation seriously enough. I was terrified of the way she wobbled up and down stairs. She wouldn't accept any change in her arrangements, though, and at that time she still retained mental capacity so her decisions had to be obeyed. After the Big Fall the doctors in the hospital decided she could no longer meaningfully make those decisions for herself. I imagine this happens quite often - an Alzheimer's patient is holding on and on until there is some sudden crisis which means medical staff have to intervene, so they end up making that decision, not the family. It's quite a performance getting someone into a home, or it can be. We couldn't get the home I wanted for her (one much nearer to me) as there's a huge discrepancy between what her local homes charge, and what you'd pay in my area (about 10 times as much - I was flabbergasted when I realised this and that we simply couldn't afford it). I also couldn't get her into our first choice of her local homes because she is shouty and sweary and some homes won't have people like that - they are private businesses, and they can cherrypick 'nice' old people instead of challenging ones. The situation may be a lot easier where you are. I do hope so.

Hi Rosie56, I am extremely sorry to hear that, I hope she is doing okay now.
Do you mind if I ask how old is she? I am thinking what are the chances such tragedy will happen to my mum.

Today I was asked if we should send her to an Alzheimer Care Home which engages them with activities. I am really unsure how to approach this. I've created a separate thread for this, but I can't post a link yet.
To navigate:
Home > Forums > Support from other members> I care for a person with dementia > Alzheimer Care Home or not

Could you advice on this?

 

[Cat27]

The new thread is here https://forum.alzheimers.org.uk/threads/alzheimer-care-home-or-not.117198/