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Mum recently diagnosed :(

Fets79

Registered User
Oct 27, 2020
10
Hull
How do you start a post like this? Its took me best part of 10 minutes to just start this sentence!

Last Friday it was confirmed my mother of 67 has early stages of Alzheimer's. I don't think this is anything out of the blue to us as for the past couple of years myself and my dad could tell something wasn't / hasn't been 'quite right'. So it got to a stage and rightly so my dad frog marched my mum to the GP to get checked over. That's how the journey started.

B12 jabs to start with, then the scans and mental health checks within a space of the year have confirmed it. She has just started on the Donepezil (low dose) with a further appointment in a couple of weeks.

My mum is a bit blasé about but she's accepted it as best as she can. My dad is pragmatic (and caring of course) about it, which is a good thing. Me, as an only child (41) I'm gutted which I think is down to the fact of looking further forward and how this is all going to end up. I also feel scared as its the 'how long' and 'when' factor and what the hell you do!! I understand its early doors but its that element of the unknown and what the impact will do to my dad.

I also feel sorry for my daughter. She loves her grandma and has loads of fun when we go round but there is going to be that time I guess when things will get a little more different / difficult? Yet to have the conversation with her but wondering how does an 8 year old grasp and understand?

On the positives we live close by to my mum and dad. She keep's her brain ticking over reading, doing crosswords, puzzles, quiz's on the TV, she loves a good action movie which I download and pass on. She's active and walks most places (they don't have a car), likes the garden so I see all these as major plus's 👍

That's my starter for ten. I sought a forum like this just as an outlet and to gain any information, support, advice, other peoples experiences (although one would expect one is never the same) and poss a rant or two at some point. I've a lot to gem up on and compute (have already had a browse through the other forum areas which looks to offer so much in terms of info and stages etc).

I never thought a few years ago I'd be saving an Alzheimer's Forum into my Favorites :oops:

Many thanks and stay safe.

Stef
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,253
69
Dundee
Welcome to the forum Stef.

I’m so sorry to read about your mum -especially at such a young age. It sounds as if she has the best of support from yourself and your dad.

There are lots of positives in your post and your attitude sounds towards all of this is good - even though it must be very scary. I know that the future may seem very bleak but please focus on the positives while you are doing your best to put everything in place to make sure your mum is ok. Your daughter will have lots of lovely memories of your mum and it may be a long time before she notices any changes in how your mum is. There are books which might help you talk to your daughter about things and I’ll have a look for some titles in a minute.

You’ve certainly found the right forum. There will lots of help and support for you hear. You can have access to lots of factsheets too. You may not need them now but this is the link for finding them when you do -


Wishing you continued strength.
 

Tulip46

New member
Oct 24, 2020
9
Hi, I’m sorry to hear your news, my Mum was diagnosed in January this year aged 68, I am 46 so I know how it feels to get this news and feeling gutted. Sadly my Dad died just over 3 years ago of MND and I did everything with him and worked with him, so feel quite lost as it’s just me looking after my Mum and she misses him a lot. I do have a Sister but she lives nearly 2 hours away. As you say it’s gutting and worrying looking forward, I looked after my Dad and then this, but this is harder in that there is no conversation. My Dad lost his voice with MND and I had more laughter with him, it’s all very surreal and so very hard. My Mum is on Donepezil as well. My Mum doesn’t always remember that she’s ill which is hard. Also her memories of pretty much everything seem to have gone, so don’t really know what to talk about with her. She still lives on her own and is fine looking after herself, but not bills etc. Was nice reading your message and reading someone is in a pretty similar situation to mine, so well done for posting, took me a while as well to be brave, but it’s good to know people feel the same out there and we aren’t alone. Take care of yourself.
 

Pete1

Registered User
Jul 16, 2019
893
Hi @Fets79. welcome to the forum. It is difficult news to accept, and I think your concerns and fears are perfectly normal. If I would give one piece of advice it is try and enjoy the here and now with Mum and not think to much about what might be in the future (it is a piece of advice I wish I had looking back). One thing is clear from the experience of all the good people on the forum there is no definitive timeline or template. Although there are many things the resonate each journey is different. Of course read up on the disease and be prepared, but don't lose sight of Mum now and the precious time you can have. I think also keep an eye on Dad, hopefully he is able to open up to you and not keep everything to himself. From what you have posted there aren't really any additional care requirements at the moment, but it's important that Dad is able to reach out when that becomes necessary. It sounds as though you are a close knit family so I expect you would recognise the signs of strain on Dad.

On the more practical front - it would really be worth getting Lasting Power of Attorney in place for Mum (if it isn't already). Perhaps discuss with Mum and Dad as maybe you are the best person for this. It is quite important to have, although at the moment it may not seem like it, but if the time comes when Mum needs someone to act on her behalf you will be able to do so. On a lesser note now you have a diagnosis it may be worth exploring Attendance Allowance - the process takes some time and Dad may not feel it is appropriate now, but it's worth looking in to.

I wish you all the best. Stay strong. You will find some great support in the forum.
 

Just me

Registered User
Nov 17, 2013
494
Hi @Fets79 and welcome.
I look after mum who has vascular dementia and though no expert I’m sure I’d do quite well on mastermind, something I never dreamed I would know so much about so I know what you mean about adding the forum to your favourites.

You’ve akready been given good advice and some handy links and I’ve nothing really to add, save cherish the here and now and keep making memories - always and focus on what your mother can do, not what she can’t.
Take care.
 

Weasell

Registered User
Oct 21, 2019
760
My advice would be to keep reading other peoples posts.

I have never started a post of my own, because others do it so much better!

When my mother first accused me of stealing I put my head back and laughed, it was a real, genuine laugh! I had read so many posts on this subject I just felt it was like she didn’t want to be left out and was ticking the box!
I then wandered off and by the time I returned the subject was forgotten!

when you have read everyone’s posts and learnt from them, nothing is frightening!

In particular look out for the financial posts. Your mother could be around for a considerable time. I found it took me a long time to get my head round the finances.
Welcome to the club!
 

PippaG

New member
Oct 27, 2020
1
Hi my mum was diagnosed in August. She is only 62, i dont understand the diagnosis, the consultant said she has early onset and distinct shrinkage. She has been prescribed memory tablets. She has a history of heart problems. I struggle to get my head around it and the long term implications. She is unaware of the diagnosis herself. She is like a complete different person now, i feel like i lost my mum along time ago and feel there is so many unanswered questions xx
 

Fets79

Registered User
Oct 27, 2020
10
Hull
Wow.....thanks for all the posts / responses....starting with Izzy. I will respond to each and every one of you but as ever time / the spawn (the daughter :D) / work (urrrghhhh) / life gets in the way as I would have done it already. I sincerely appreciate all the messages.

I've been in a few clubs and teams in my time but this is without a doubt the sh!tte$t :rolleyes:

Thank you ever so much 💙
 

Fets79

Registered User
Oct 27, 2020
10
Hull
I've been in a few clubs and teams in my time but this is without a doubt the sh!tte$t :rolleyes:

Sorry if this comes across in the wrong way.....my sense of humor :confused:......this is probably the most important club I'll ever join 👍
 

canary

Registered User
Feb 25, 2014
13,949
South coast
Hi @Fets79 . It is not mandatory to reply to everyone individually when you are pushed for time - I think that it something that we can all relate to :rolleyes:
I think the dark humour will fit in very nicely!

Do have a mooch around the different threads, but please dont scare yourself - not everyone takes the same path and not everything that you read about will happen to you/your person with dementia.
 

Pansy1950

Registered User
Feb 2, 2019
17
Hi Fets
I’m so sorry you find yourself in this position, and with your mum being so young, too.
I, too, have posted for the first time earlier this week on this section.
Hubby diagnosed last week and I still find it surreal and scary, thinking about what may be.
Others here have been so kind and helpful which is just what I needed to stop me going into a real panic.
I’m sending a hug and best wishes.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,956
Nottinghamshire
Welcome to the club non of us wanted to be in @Fets79

My mum was only a little older than yours (about 70) when we noticed she wasn’t well, although we didn’t have a name for her problem at the time. My daughters were 10 and12.
They’re both adults now and I recently asked them how they coped with their Mama being so ill and their reply surprised me. They said it didn’t really effect them - they just accepted the changes as they happened.

We may have been lucky, mum was never aggressive with them and was always pleased to see them - even when she wasn’t sure who they were. So try not to worry too much about the affect on your daughter. My kids were both incredibly close to their mama, especially after their father left, and although they were saddened by what happened to her they weren’t scarred for life.
 

Norfolk Cherry

Registered User
Feb 17, 2018
304
Hi @Fets79 and all, I'm reading your posts and it reminds me of where I was around ten years ago when I first realised something was wrong with mum. She is near end of life now, and I'm so thankful now for the years I had with her. She moved down the road from me, and at first I really struggled as we hadn't been close and it felt like the end of my life.

I was wrong, I've learned so much, and I hope have become a much better human being as a consequence. I agree about making the most of what you have now. Looking back, I really tried. I wish I'd given up work sooner, (I did go part time) but maybe I needed to hang on to that too for my own mental health.

I opened the wardrobe door in her care home last night, and it hit me that she won't be wearing her lovely blouses and trousers again. I hadn't realised how much I'd even taken that for granted. I found this site a huge source of support, and you will too I'm sure. Whatever lies ahead will have been experienced by someone here! So don't worry, you are not alone!
 

Fets79

Registered User
Oct 27, 2020
10
Hull
Hi @Fets79. welcome to the forum. It is difficult news to accept, and I think your concerns and fears are perfectly normal. If I would give one piece of advice it is try and enjoy the here and now with Mum and not think to much about what might be in the future (it is a piece of advice I wish I had looking back). One thing is clear from the experience of all the good people on the forum there is no definitive timeline or template. Although there are many things the resonate each journey is different. Of course read up on the disease and be prepared, but don't lose sight of Mum now and the precious time you can have. I think also keep an eye on Dad, hopefully he is able to open up to you and not keep everything to himself. From what you have posted there aren't really any additional care requirements at the moment, but it's important that Dad is able to reach out when that becomes necessary. It sounds as though you are a close knit family so I expect you would recognise the signs of strain on Dad.

On the more practical front - it would really be worth getting Lasting Power of Attorney in place for Mum (if it isn't already). Perhaps discuss with Mum and Dad as maybe you are the best person for this. It is quite important to have, although at the moment it may not seem like it, but if the time comes when Mum needs someone to act on her behalf you will be able to do so. On a lesser note now you have a diagnosis it may be worth exploring Attendance Allowance - the process takes some time and Dad may not feel it is appropriate now, but it's worth looking in to.

I wish you all the best. Stay strong. You will find some great support in the forum.

Hi Pete, thanks for this....I'm going to start compiling a 'check list' so to speak on what we should be doing early doors and the above two points of the practical front I'll look into. POA and Attendance Allowance I'll have a look into many thanks for the advice on these.

Will keep an eye on Dad also. He lost one brother many years ago to cancer and his other brother who lives in Spain has Parkinson's. These are things we need to factor in from a mental health perspective at least.

Many thanks for the advice and practical areas. Although I have done some research over the past months having a strong feeling this was going to be the outcome, I want to be more aware of what to expect but crucially what I can provide and offer. I always like to refer to Andy McNabs '7Ps' - Proper Planning and Preparation Prevents P!ss Poor Performance. Never more of a time to adhere to this.

Again many thanks Pete.
 

Fets79

Registered User
Oct 27, 2020
10
Hull
Hi all,

Again I would just like to thank all who have offered their kind thoughts, support, advice and hugs 💙

I have re read all the above over and over again and took some notes down which will help in these earlier stages. Even had a little cry which I haven't done in a while!

If anyone has any other pointers on things we should be considering or targeting at this stage please let me know.

Forewarned is Forearmed as the saying goes.

Kindest regards,

Stef
 

Fets79

Registered User
Oct 27, 2020
10
Hull
My advice would be to keep reading other peoples posts.

I have never started a post of my own, because others do it so much better!

When my mother first accused me of stealing I put my head back and laughed, it was a real, genuine laugh! I had read so many posts on this subject I just felt it was like she didn’t want to be left out and was ticking the box!
I then wandered off and by the time I returned the subject was forgotten!

when you have read everyone’s posts and learnt from them, nothing is frightening!

In particular look out for the financial posts. Your mother could be around for a considerable time. I found it took me a long time to get my head round the finances.
Welcome to the club!

Hi Weasell,

Thanks for the response......when you say Financial Posts, is there a specific section on the forums for this or do I need to look elsewhere?

Regards

Stef
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,719
Merseyside
Hi Weasell,

Thanks for the response......when you say Financial Posts, is there a specific section on the forums for this or do I need to look elsewhere?

Regards

Stef

This is our financial area.
 

Fets79

Registered User
Oct 27, 2020
10
Hull
Welcome to the club non of us wanted to be in @Fets79

My mum was only a little older than yours (about 70) when we noticed she wasn’t well, although we didn’t have a name for her problem at the time. My daughters were 10 and12.
They’re both adults now and I recently asked them how they coped with their Mama being so ill and their reply surprised me. They said it didn’t really effect them - they just accepted the changes as they happened.

We may have been lucky, mum was never aggressive with them and was always pleased to see them - even when she wasn’t sure who they were. So try not to worry too much about the affect on your daughter. My kids were both incredibly close to their mama, especially after their father left, and although they were saddened by what happened to her they weren’t scarred for life.

Hi Bunpoots,

Thank you, that's reassuring. I think once we have explained it 'Squidge' (the daughter :)) will process it and accept it is what it is at this stage and hopefully that will continue. I think its at the point sometime in the future were mum doesn't recognize her will cause some upset.....but by then 'maybe' she'll old enough and mature enough to understand.

So many factors and considerations!!

Regards

Stef
 

Pete1

Registered User
Jul 16, 2019
893
Hi @Fets79, nothing wrong with having a little cry, you are somewhere none of us ever wished to be. But you really are doing the right thing by Mum and Dad, and it's really not easy to face up to the situation and you are doing that.

I would just say the POA is the place to start as your parents may be resistant to the idea as it is quite difficult to accept (so it may take a while), but not having it in place can make things difficult further down the line (albeit it may depend how your parents have organised their finances - but ideally you will also have delegated power for medical/care decisions too). Personally I used the family solicitor to do it independently but you can prepare and register it yourselves.

One thing I did find helpful (although, unfortunately, I didn't do it at the outset), is to keep a diary or journal so that you can have an accurate timeline of events because over a period of time things can become a bit blurred. It can also help in meetings with medical practitioners/care companies further down the line.

All the best. Stay strong.
 

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