Hello I'm new and need some ideas!

Nai

Registered User
Oct 15, 2008
2
0
Yorkshire
Hello,

I'm 29 and my mum (mid-60s)has started displaying some signs of dementia. Her mum had Alzheimer's. Mum's being very brave, and has taken herself to the GP (very supportive) on a number of occasions to talk about her memory. She's talking about it openly with myself, my brother and to a certain extend my dad, as well as our partners etc.

I'm no expert, but it seems it's her short-term memory that's changing - not remembering what she's just said, repeating herself a lot, and getting stressed and bogged down with 'organisational' tasks like account keeping (I have to say the same would probably apply to me!).

This isn't so bad, but her temper is shorter and she has lashed out verbally at me and my dad a few times with no provocation, imagining she has been challenged to talked down to, which hasn't been the case. While I'm trying to understand and adapt to these changes, of course it's distressing when these things happen.

Her sleep is also suffering; often she wakes at 4am, and only gets 4 or 5 hours sleep a night, which of course makes these symptoms worse and isn't great for her physically.

Myself and my brother live a couple of hours away from her and dad. I'd love to get any suggestions or ideas about dealing with these behaviours, anything about sleep, and also ideas about activities, classes etc that have been positive for other people - mum's very active and fit physically. I'd love her to be more relaxed and find a routine and lots of things to do that keeps her active mentally, physically, creatively and socially.

Thanks!
 

Legion

Registered User
Aug 4, 2008
9
0
Somerset, UK
Hi Nai

I'm new too and thought I'd drop a quick line to say that the folk on this forum are very good. the first post I did was on monday and I watched for an immediate response and got a couple on the first day then lots afterwards.

Being new, not really sure if I can offer anything except to say that you are not alone with this and if your Mum has already gone to her GP he may be arranging for her to go to a memory assessment unit (which looks like the first thing that happens to put people onto a pathway for treatment).

hope you find good support here and better answers than mine

good luck
 

jenny48

Registered User
Sep 19, 2008
121
0
Hello both of you

I am quite new myself but I know you will both get help here.My mum suffers dementia and I can assure you being agressive , argumentative and downright nasty seems to be quite usual for sufferes, so don't take it to heart you know what they say "you always hurt the ones you love" try remember that its not your mum but her illness talking.

Good Luck:)

Jenny
 

Tess

Registered User
Nov 29, 2005
22
0
I live in west wales
Hello Nai

So sorry to hear about your Mum. It's such a worrying time when you first discover that there are significant memory problems. You say that your Mum has visited her GP, who is very supportive. That's excellent but has the GP referred her for any sort of assessment? Once my Mum was referred, she underwent a number of tests and was then prescribed medication which, as we all know, can't cure the problem but may slow things down. Another bonus of being referred to the mental health unit was that she was then 'in the system'. I think we are very fortunate in our part of the country as there is substantial support for sufferers and the carers are not forgotten either. Mum now goes to a day centre once a week which gives my Dad a few precious hours on his own to 'do his own thing'. From what you say, your Mum is still quite lucid, although forgetful. My Mum started like that but has deteriorated hugely over the past few years - that's when her main carer (Dad) really needs a bit of space.

You will find lots of support on this site and it seems that there's no situation you can raise without someone having experienced before. It's a big help.

Good luck and please let us know how things go for you and your family.

Regards

Tess
 

christine_batch

Registered User
Jul 31, 2007
3,387
0
Buckinghamshire
Hello Nai,

Welcome to Talking Point. Someone will always be here so never feel alone.

Some of us are dealing with AD further down the road, some like yourself just beginning this herrendous journey.

Have you contacted your Local Alzheimer's Branch ? There you will find so much support and information.

On the main page are lots of fact sheets that you can download.

My husband was diagnoised with AD aged 57 and 17 months ago, Consultant placed my husband in E.M.I. Unit and he is in the final stage.

Talking Point has become a main course of support.

Taking things day by day helps.

Best wishes
Christine
 

Lanie

Registered User
Aug 31, 2008
293
0
Surrey
Hi

You said your Mum has been to the doctors but what did they do?
When my Mum went approximately 18 months before she started having delusions, she was 64/65 then the doctor told her not to worry it was old age! But after becoming ill in June of this year and a rapid decline, Alzheimers confirmed in August, she went in to a care home this month. History of Alzheimers in the family. I often wonder if the doctor had taken her seriously and ran some memory test then she may not be where she is today as they may have been able to slow it down.

My point is not to alarm you, but so if they haven't done anything go back, Alzheimers medication can't cure it but it can help and the earlier a person has it the better for everyone.

Good luck

Lanie
 

ChrisH

Registered User
Apr 16, 2008
281
0
Devon, England
Hi Nai

Can't add much really. My mum's 82 and was diagnosed last year. The fact that your mum has taken herself off to the GP is a bonus and means she'll probably be more accepting of any help that she's eventually offered. Getting a diagnosis is important - as Tess says, she'll then be in the system. The kind of help you'll get seems to be a bit of a postcode lottery. Where my mum lives they've been fantastic - a social worker and occupational therapist went to see her even before she'd seen the consultant (who referred her for a scan that revealed mixed dementia - i.e. vascular dementia and alzheimers).

As for keeping the mind occupied, sadly that's not as easy. My mum is physically fit and did a crossword puzzle every day, made cakes, attended several clubs including dancing - it's all gone now. She no longer cooks, still tries to read books (sometimes upside down) but can't tell me anything about what she's just read, etc etc.

I'm afraid you'll also have to get used to the change in personality. My mum never had a cross word with anyone, had loads of friends and a good sense of humour. Sadly she now accuses me of constantly criticising her and says everyone treats her like a 10 year old. She's driving all her friends away. It's just the frustration talking as she's aware she has problems.

And then you'll have the guilt trip every time you snap back - and you will - this awful disease doesn't just affect the person with it, it knaws away at even the most saintly person (and I ain't one of them:D).

I'll keep my fingers crossed for you and your mum and hope you get all the help you need.

Chris
 

sad nell

Registered User
Mar 21, 2008
3,190
0
bradford west yorkshire
Keeping Active

Hello Nai, Sorry you have had to join us on this site, but it really is alife line, can you get your dad to use it. it will help him alot, as regards keeping mum active, i take trevor out on many lovely walks, he is always better when walking, notice your parents live in Yorkshire, so if she would like to join us on a short walk to give dad a break she would be welcome, Bradford,s alzhiemers society run art classes, never managed to get Trev there but believe they are very good (Clare was our contact she is lovely), If I can offer you any more local info please pm me. Pam
 

Nai

Registered User
Oct 15, 2008
2
0
Yorkshire
holistic treatments

Thanks for your messages, as most of you said this forum certainly seems like a safe and open place to share concerns and experiences. I will enquire further about assessments from the doctor - it does seem like a good idea to get this done sooner rather than later.

Mum recently went to a public lecture on Alzheimer's and dementia at the local university, and one speaker was talking about the pros and cons of medical ways of slowing the disease down, versus holistic ones - any thoughts?

Thanks again!
 

tam572000

Registered User
Sep 30, 2008
18
0
Kent
Quite new myself

Hi Nai

I like you am fairly new on here. The forum is a great support and whilst I haven't posted a great deal I have read and read and read. My Dad was finally diagnosed early this year and went into a residential home a couple of months ago.

Everybody is really helpful on here and you realise that there are so many in much the same position as you and can relate to certain posting.

Good luck with everything and welcome to TP

Regards

Tam
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Mum recently went to a public lecture on Alzheimer's and dementia at the local university, and one speaker was talking about the pros and cons of medical ways of slowing the disease down, versus holistic ones - any thoughts?

I suppose my first thought would be to wonder what exactly they were talking about. I assume medical ways would be medication but holistic ways - what would that entail? Are we talking about the concept of memory exercises or something else? The thing is, I've seen no evidence that non-medical interventions can slow the disease progression. I think people can be made much happier and much calmer by such things but the disease is still progressing at whatever rate it would be normally.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
I'd have to agree with Jennifer.

I assume that 'holistic' care involves person-centred care, promoted by the Alzheimer's Society and many other organisations. I'd alse include the use of massage, sensory rooms, soft music -- and relaxation techniques.

Yes, these should all be included, or at least as many as the person with AD will accept. They certainly help in promoting a calm environment.

But as Jennifer says, they will not slow the degeneration of the brain, and that is what anticholinesterse medication can do -- again, for some.

Perhaps the talk was about the use of anti-psychotic medication? Again, holistic care is helpful, and successful for some. but there will always be others for whom life would be intolerable without medication.

I don't think it's an either/or situation, rather horses for courses. If it works, it works!:D