New and alone in this journey

[Finchiebird]

Hi,

I’m really new to this. I’m 26 soon to be 27 and my wonderful Mum of 52 has been diagnosed with young set dementia last year.

Due to a lot of (and to be honest, too many) extremely stressful things that have happened to my mother in her lifetime, I now desperately try to take away any complications from her life. I have started a power of attorney process but constantly feel underprepared in how to support her to the best of my abilities.

I feel grateful that she is still mostly herself but if she doesn’t sleep enough or worries, I can see the panic set in and it seems to make the condition worse. I try my upmost to get her to tackle these moments without so much fear and in different ways so I can help but sometimes the emotional strain can be so overwhelming…

I’m really scared that I’m going to let her down and then miss out on important life milestones…and without sounding incredibly selfish, this isn’t something I expected for either of us at the current age we are. It just feels too early and surreal.

I was curious to see if there is anyone else in this community that is a carer of someone with young onset dementia? Or even other types but to say a hey, how you doing?, share in experiences and any tips for both sides.

 

[Izzy]

Welcome to the forum @Finchiebird.

I’m so sorry to read about your mum’s diagnosis. You are both so young to be coping with this.

I’m glad you’ve found this forum. You are amongst people who understand here.

You might find this factsheet on young onset dementia helpful.

Young-onset dementia

Find out what young-onset dementia is, including the causes and symptoms, and how it is diagnosed and treated.

www.alzheimers.org.uk

It might also be helpful to give the Admiral Nurse helpline a ring -

Admiral Nurse Dementia Helpline

Call or email our Dementia Helpline/Alzheimer’s Helpline for reassuring and practical advice from our specialist team of Admiral Nurses.

www.dementiauk.org

You might also find the threads on this area if the firum interesting.

Younger people with dementia and their carers

This forum is for people with dementia under the age of 65 and their carers, families and friends.

forum.alzheimers.org.uk

 

[Malalie]

You have come to the right place.

 

[Bod]

"Don't worry too much about the future, everyone's dementia road is different, some go so easily you'd never notice, others not so.
To help yourself, it would be wise to start some things off now.
Have help coming into the house, cleaner, gardener, etc. so she gets used to having "strangers" in the house.
Get into routines, for meal times, getting up, and going to bed, daily bath/shower, (whether she needs it or not!) changing clothes.
Start to get family finances under your understanding/control, and driving, you becoming main/only car driver.
These are points that often become difficult, if not attended to early whilst there is still a degree of understanding and co-operation.
Stay with us here, what ever happens, someone here will have been there before, and we all "know" what it's like.
Bod
(Who's father and both in-laws had the diagnosis)"

This is a post that I've put out before, somethings you are already doing which is good, the main thing is to try to avoid the common pitfalls, which makes life easier for you both.

 

[Grannie G]

Hello @Finchiebird

This is an awful situation for both you and your mother and I`m so sorry.

Accepting it is what it is, it sounds as if you both have a really close relationship which is wonderful.

You are not expected to solve everything for your mother. You won`t let her down. All you can do is try to reassure her you are in this together.

For yourself, please don`t hold back in getting as much help and support as you can.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

 

[Duggies-girl]

Hi @Finchiebird is it just you or are other family available to help because it is important that you are able to carry on with your own life, do you work and can you still get out and about. You sound lovely and are doing all the right things for your mum but do get as much help as you possibly can to take the strain off you and also to get your mum used to having help.

I am sorry you are here at such a young age but stick around as there is a lot of information and support to be found on this forum.