Early onset Alzheimer’s

[topher]

Hi my name is Chris. I was diagnosed with early onset Alzheimer's on Dec 1st 2023. I’m 57 years of age so coming to terms with the diagnosis and changes as the disease develops was and still is difficult to digest, it’s only in the last few weeks that I believe I’ve come to terms with my news. Thoughts have now switched and I’m concerned and worried for my wife and what she’ll have to contend with as my diagnosis develops. Although I’ll probably have zero recollection when this time arrives, my wife will be my primary carer, it maybe a daft question but is there anything I can do now which will help my wife through what most say will be a particularly difficult & traumatic period? Any advice or support would be appreciated. Thanks Chris

 

[Kevinl]

Just keep loving her, that simple. K

 

[Sarasa]

A warm welcome to Dementia Support Forum Chris. (@topher). If you haven't already done so get Lasting Power of Attorney and your will sorted.
Other than that at the moment I'd take each day as it comes, and keep doing the things you enjoy doing.
It might also be an idea to seek out your local dementia cafe or similar in your area. That way you will both have support as things progress. This factsheet helps you find support in your area and your local authority website should have some useful information too.

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

 

[Dunroamin]

don't ask her to make promises she will not be able to keep (i.e. never put me in a home) etc.

 

[BunnyB22!]

Evening All,

I had formal confirmation of MCI early Jan, initial Dr Appt early Dec23, both parents and their 8 siblings had Alzheimers & I've also worked in domiciliary care in addition to a fulltime job. I'm therefore pretty relaxed with the diagnosis but concerned I'm not on any meds to slow cognetive decline. In fact I actually volunteered for a drug trial in 2011 due to thinking something wasn't quite right. Unfortunately I didn't meet trial criteria to participate. Dr now writes sick notes every 6 months for DHS, with carers visits twice a day, but I do everything myself - use it or lose it.

Not wanting to vegitate I've found an arts club to keep me busy for a few hours and engage with humans & a Parks Trust Discovery Walk Group. I've worked from home for years so only met up with colleagues every 3 months in London. Lockdown & diagnosis have not been a big change for me, the 'isolation' continues. Main issue is getting used to travelling by bus & working out where i am as i've always driven and been independent. I can go anywhere I want so long as it's north or south😃

This week I need to make a concerted effort to set up an LPA & Will.

My new motto is "'I'm not dead yet!"
Take care everyone
Alison

 

[sdmhred]

I think the most helpful thing my mum said to me when she was mid stage is ‘ I don’t want you to ruin your life for me’. My life has been so altered caring for her and it’s tough BUT I have chosen that. By saying what she did however she has given me permission when i need to look after myself.

Even now she is early late stage we have lovely times together so do remember that too.

Take care

 

[Kevinl]

Evening All,

I had formal confirmation of MCI early Jan, initial Dr Appt early Dec23, both parents and their 8 siblings had Alzheimers & I've also worked in domiciliary care in addition to a fulltime job. I'm therefore pretty relaxed with the diagnosis but concerned I'm not on any meds to slow cognetive decline. In fact I actually volunteered for a drug trial in 2011 due to thinking something wasn't quite right. Unfortunately I didn't meet trial criteria to participate. Dr now writes sick notes every 6 months for DHS, with carers visits twice a day, but I do everything myself - use it or lose it.

Not wanting to vegitate I've found an arts club to keep me busy for a few hours and engage with humans & a Parks Trust Discovery Walk Group. I've worked from home for years so only met up with colleagues every 3 months in London. Lockdown & diagnosis have not been a big change for me, the 'isolation' continues. Main issue is getting used to travelling by bus & working out where i am as i've always driven and been independent. I can go anywhere I want so long as it's north or south😃

This week I need to make a concerted effort to set up an LPA & Will.

My new motto is "'I'm not dead yet!"
Take care everyone
Alison

That might have the most inspiration thing I've every read on here, thank you. K