Hello - my mum was diagnosed yesterday and we are all scared!

[Rubynoodles]

Hi everyone, this is my first post.
After tests and a brain scan, yesterday my 75 year old mum was diagnosed with the early stages of Alzheimer’s.
Although it hasn’t come as a shock (her memory has been off for the last couple of year), it’s so very sad and scary for my dad, my sister, myself, husband and two young children.
Where do we go from here? Carry on as normal? What do we say to her? She seemed ok after the consultation but then she became very teary and she felt lost last night and seems a bit lost today. The consultant was lovely but both my dad and mum can only remember bits from the 20-30 min consultation (unfortunately, neither myself or sister was with them). He has prescribed 8mg Galantamine saying it will help slow down the shrinking of her brain, will this really help or is it just the first thing they try? Is it worth joining local dementia groups so we don’t feel so alone and lost? We feel so out on a limb, we know very few people with or have suffered from this and those who have/did had an awful journey.
Sorry for so many questions.
I’m hoping to connect with people going through the same thing so we don’t feel so alone.
Thanks Bea

 

[Canadian Joanne]

Hello Bea and welcome to Talking Point.

The time of diagnosis is always a very hard one and it is sad and scary. My mother was diagnosed at the age of 64 and yes, it does turn your world upside down.

If I were you, I would try and carry on as normally as possible in the circumstances. I would recommend finding a support group - I started attending one 3 months after my mother's diagnosis and it lifted the weight of the world off my shoulders.

Galantamine may well help your mother and I feel it's important to try everything possible. No one reacts the same way to the various drugs available. We were lucky in that my mother responded very well. I strongly feel it is worth a try.

I realize there are a lot of scary stories out there and I have quite a few myself, but every person's journey is different. The important thing is to make the most of every moment.

 

[Bunpoots]

Hi @Rubynoodles

I remember when it hit me that I was going to have to be the grown up and look after my dad with dementia. I was terrified!! I didn't know where to turn. The best thing that happened to me was someone told me about Talking Point. Although there are support groups in my area I could never get dad to go to any so TP has been my lifeline.

I've seen 4 family members with dementia and every time it's been different. Although it's not been good it's not always been terrible. In the early stages life continues much the same as normal and we just learned to cope with each issue as it arrived.

I've found it helps to have a sense of humour. My dad is nearing the end now but, although things have been very difficult over the past few months we've still managed to have a laugh sometimes over the silly things dad does.

I have never referred to dad's dementia but refer to his memory failures as "brainfarts" - crude I know, but it made him laugh.

Your mum is still your mum so carry on as normal - and keep posting here. You'll always find someone to talk to.

 

[canary]

I agree, carry on as normal, but I would make sure that the legal stuff, will and POA - both for finances and health and welfare, are sorted and registered, then you can forget them until they are needed. Dont leave it until it becomes critical as it may then be too late.

 

[Rubynoodles]

Thank you so much for replying. Bunpoots, it is like you say, a wake up call for me to be the grown up (still not ready at 45!). It is important to still keep your sense of humour, as difficult as that seems atm.
Canary - as we’ve suspected mums memory hasn’t been good for some time, I’ve been badgering dad to make my sister and myself POA to make our life’s easier, come the time we may need it but he just buries his head in the sand over it, so frustrating. Now that mum has an official diagnosis we will have to be a bit firmer. I don’t think he realises if something happened to him our lives would be very hard without at least a medical POA. Ahh! So much to think about!!

 

[nellbelles]

Hello @Rubynoodles and welcome to TP although sorry that you needed to find us
There is a lot of knowledge and support here on the forum.
If you feel you would like to read the Alzheimer’s Society newsletters I’ve attached the link.

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

 

[Rubynoodles]

Thanks for that.

 

[karaokePete]

Hello @Rubynoodles, welcome to the forum from me too.

You will see a Factsheet about grief in the Publications list and this may be worth a read as you may all be suffering what is called Anticipatory Grief after the diagnosis. This is common, however, like all types of grief you can get through it and I found getting busy with setting our affairs in order relating to Wills, POA etc., got me through it quickly when my wife was diagnosed.

You may also get some benefit from checking out support services like Memory Cafes in your area and you can do a post code check for what's available by following this link https://www.alzheimers.org.uk/find-support-near-you

 

[witts1973]

I'm also 45 with a mother with dementia,it's a shock at first but I have grown with the situation as things have progressed if that makes any sense,the POA is important explain to your father the benefits of making one, to himself and like you say how it will make it easier for yourself to help him too,your mother may well be able to claim attendance allowance so it's worth while looking in to that,best wishes x

You may well be able to still get POA for your mum if she is in early stages,you will have to seek advice on that matter

 

[Rubynoodles]

Thanks everyone, there is so much to think of now it’s all for real. Will have a look into the local support and definitely push at the POA. Thank you all for your kind words.

 

[Norfolk Cherry]

Agree with everyone. I read a book called 'Contented dementia' at your stage. I think it helped with the early years, but this the support and sharing on Talking Point was what saved me.
https://www.amazon.co.uk/Contented-Dementia-Revolutionary-Wraparound-Well-being/dp/0091901812

 

[PJ]

Hi @Rubynoodles sorry to hear about your mums recent diagnosis. You’ve definitely come to the right place for support & advice. I found TP really helpful leading up to & since my own diagnosis.
As far as groups are concerned your mum will hopefully have a dementia support worker who will give her lots of info of what’s about. Also by adding a postcode in the search on this website you will get an idea of what’s in her area.
Wishing you all the very best

 

[Rubynoodles]

Thanks all and thanks for the recommendations, I will definitely take a look at that book.

 

[Cazzita]

Welcome to the club! Good luck with getting the LPAs sorted out x

 

[Rubynoodles]

Spoken to dad yesterday, think the reality has hit him and he has agreed to the LPA which we will sort out soon. At least that’s one worry to strike off!

 

[canary]

Spoken to dad yesterday, think the reality has hit him and he has agreed to the LPA which we will sort out soon. At least that’s one worry to strike off!

Good Get it sorted soon before he changes his mind

 

[Rubynoodles]

Definitely Canary, thanks

 

[hilaryd]

I've nothing much to add to what's already been said above, but just wanted to echo the welcome and say that I most definitely found TP the most useful source of support and information when caring for my late mum. Everything does seem overwhelming and scary, but it sounds like you have a good family network that takes care of each other, and that's probably more important than anything else. Wishing you all the best on the learning curve - your mum is lucky to have you looking out for her.

 

[Claire P]

This is something really helpful.

 

[Claire P]

This is something really helpful. Thanks for sharing in such detailed manner.

Just want to say thanks,