Newly Diagnosed

[littlejo]

Hi All...
I'm new to this site but I'm hoping someone can help me and offer some advice on this situation!

My aunt has just been diagnosed with Alzheimers, which is no surprise as her memory and word loss has decreased rapidly over the past six months. The only problem is she refuses to discuss it and wants no one to know, I feel at a loss as to how I can help, or even what the next steps are after diagnosis?

She has always been an incredible role model to me, so extremely active, caring and a real achiever in life. She is now in her early 70's but you wouldn't think it to look at her, she's still very classy and elegant and I've always aspired to be like her in my latter years! This has come as quite a blow and I just don't know where to start in making the most of the time we have left before she doesn't even recognise me anymore!

I've read that medication can slow things down, but how long on average am I looking at?

I feel totally helpless at the moment...

Jo

 

[Amy]

Hiya Jo,..How long? No-one knows....progress varies from person to person. From what I haveheard medication does seem to significantly slow down progress of the illness in some people...so it is important to encourage your aunt to get on it if none has been prescibed yet.

I know mum was in denial about anything being wrong with her....put yourself in your aunts shoes...she must be going through a tough and frightening time. Give her time;try and talk to her about the positive affect of medication.None of us know how much time we have left, we must all make the most of each day....build happy memories...live in the present, dont dwell on the future. Read what you can about the illness, so that you are prepared.....and there is no better source of information than TP!!

And the 'recognising you anymore'....I know it is important from where you stand at present....but speaking as someone whose mum didnt recognise her for many years....lack of recognition doesnt end the relationship....you will still find love.

Take care.
Love Helen

 

[gigi]

Hello Jo,

Welcome to TP...

It's early days for you...Amy has given excellent advice..

I feel totally helpless at the moment...

Don't feel helpless...find out all you can and take each day as it comes...

Remember that there is no way of knowing how this disease will affect your aunt..and no time limit can be predicted..

Which is why "take each day as it comes" is a common saying here.

Enjoy the good times..and don't hesitate to post and ask and share....

love gigi xx

 

[frederickgt]

Jo

Hello Jo,You need help if your aunt if living with you ,or if you are her main carer,get the Social services involved at an early stage,they can asess
and provide help in the way of daily visitors and day centres.Doctors can prescribe medication such as Aricept which does slow down the effects of this disease.There are many people here opn T.P.
who will be able to advise you,it is a road that so many of us have travelled.Keep in touch.
Be brave,Be Patient,Be loving.

 

[Bristolbelle]

Hi Jo

you say your Aunt has been recently diagnosed, can I ask whether this was as a result of an MRI scan? Just that if it was maybe you could get a few books etc and read them together. Assure here that while the GP will obviously know there is no real need to tell others yet. My Mum was in dinial for a while and I think for some people this is a result of thier own fear, and the worry people will think they are going "do-lally". As time has gone on Mum has accepted that others have noticed a change and as she has realised we are here to support her she has become less frightened herslef and is now happy for others to know about her condition. As others have said get social services involved as son as possible, not only requesting an assessment for your aunt but also for yourself as a carer. At present i would recommend you take a few weeks to get used to this new revelation.
At some point you should think about things like power of attorney, and perhaps living wills etc, but your aunt will need time to adjust, and this can often be approached more easily with a social worker to support you. Things change but usually not that quickly and I found I tired and terrified myself in the first few weeks and wish I had slowed down a bit to analyse things more. Perhaps you could mention the AZ to people you can confide in so they know you might need thier support in the near future. Otherwise be kind to yourself and obviously your aunt while you adjust to this new role.

best wishes
Firebelle

 

[Cliff]

Hello Jo and welcome to TP,

Alzheimer's is a cruel disease and takes many forms.

If you are close to your Aunt it is unlikely that she will forget your face quickly. Keep talking to her. If you have a special handhold, look or intimate contact, keep it going.

Has the Alz been diagnosed by a specialist clinic which usually involves blood tests and a brain scan ?

You sound like a v special person to take this interest in your Aunt's well being - it is very rewarding but incredibly draining and tiring.

If possible, get Social Services involved as soon as you can but be prepared for disappointments. And search out any local organisations like the Alzheimer's Society, Cross Roads, Red Cross etc - they all have help to offer. The Alz Society is uaually a fund of information. You will need as much help as you can possibly get.

Also keep posting here on Talking Point, it has been a life saver for me and am sure it will help you in the difficult days ahead.

Very best wishes to you,

 

[littlejo]

Thanks to you all for your kind words and support.

She was diagnosed last week following a MRI scan but has so far only told my Nan which is how I found out. Nan says she doesn't want anyone knowing which is going to be difficult right from the start. She lives about two hours from me, on her own - she has a daughter nearby but they have frequent friction between them. I feel that if I could see her daily then we can provide the time for helping her through, it feels hard when I know I only see her every so often that I'll be wondering 'will this be the time she'll not even know who I am'. I'm sure it won't happen overnight, and meds are going to be offered to help her situation but it's all these kind of things that go round in your mind!

I want to be there for her - she means so much to me. I guess I'll be doing a lot of travelling from now on!!

 

[Skye]

Dear Jo, you're wonderful to be wanting to take such care of your aunt, and I understand how much she means to you.

It is difficult if your aunt doesn't want to talk about it, all you can really do is be available for when she does want to talk.

It's sad that she doesn't get on with her daughter. Are you on good terms with her?

If you can, it would be a good idea to work out a sort of timetable between you so that you can keep an eye on your aunt. I think you might be setting yourself an impossible target if you aim to drive every day to see her. Don't forget that this disease can last for 10 years and up to 20!

Medication will slow the progression if it works for your aunt, and may continue to work for years if you are lucky, but it doesn't work for everyone, and sometimes only for a short time.

I'm not trying to frighten you off, just to make sure you know what you are up against. If you can get help from the daughter, and from social services, grab it with both hands.

And think about yourself in all this. Caring can be very stressful and it will help no-one if you wear yourself out.

Having said that, of course you're going to do as much as you can, and I respect you for that.

Love,

 

[littlejo]

Unfortunately I've not had a lot to do with her daughter. We have different views on life I'm afraid, I consider her to be a little on the selfish side but I'm sure once she finds out about her mum she'll hopefully not put herself first anymore.

My 'aunt' is actually my nan's cousin but has always been 'auntie' to me She's actually my godmother too and I just have a massive respect for her and how she worked hard and built up her business from nothing. She's an amazing lady without a doubt. She spends so much time looking after others now she's retired, in addition to doing hospice work that she's an absolute gem and I'm sure this has really hit her hard. I just wish I could get her to talk to me about it, but until my Nan gets back from her house I daren't say anything.

I can appreciate her wanting to keep it from people as long as possible, I had that view when I had breast cancer worries. I'm pleased to be able to write it out on here though, it helps! Hopefully soon I can jump in the car and go up and discuss it with her...