Looking back to early stages

[SeaSwallow]

I totally agree with @Canna regarding the note book, I still use mine, it is a goldmine of information and contacts.

 

[Agzy]

Hi @BirthBlue

I’m in year five with my mum who was diagnosed in 2019. I spent three years looking after her at her home. She’s now living in a nursing home.

Looking back, maybe I could have organised LPA soon after my mum’s diagnosis - or even before that. I did try, but my mum always fiercely protected her own financial independence and never understood or accepted she was unwell. When I tried it was already far too late. If you can get LPA organised then definitely do that as soon as possible.

If I could re run the past knowing what I know now I would try harder to invest more in my future. By that I mean spend more time and energy keeping in touch with friends and maintaining more of a life outside a care role. I would say plan to do that very early after taking on care for someone with dementia. The demands of care can become extraordinary and overwhelm all other aspects of life. It can happen slowly over time, or due to a crisis which changes things very quickly.

So true about ‘should have cared for self’ as one thing I never envisioned was the isolation and lonliness even from close family.

 

[Daughters concerns]

Hello, it seems a few of us on this forum are newbies with someone in the family having recently had a diagnosis. I want to ask those further along, if looking back you wish had done something different at the beginning? Top tips welcome.

I wish I had sorted out the power of attorney sooner!
Also had conversations about future wants and needs such as care homes etc

Good to luck ❤️

 

[annieka 56]

Hi @BirthBlue

I’m in year five with my mum who was diagnosed in 2019. I spent three years looking after her at her home. She’s now living in a nursing home.

Looking back, maybe I could have organised LPA soon after my mum’s diagnosis - or even before that. I did try, but my mum always fiercely protected her own financial independence and never understood or accepted she was unwell. When I tried it was already far too late. If you can get LPA organised then definitely do that as soon as possible.

If I could re run the past knowing what I know now I would try harder to invest more in my future. By that I mean spend more time and energy keeping in touch with friends and maintaining more of a life outside a care role. I would say plan to do that very early after taking on care for someone with dementia. The demands of care can become extraordinary and overwhelm all other aspects of life. It can happen slowly over time, or due to a crisis which changes things very quickly.

That's a very good piece of advice Calon Lan and I agree. Keeping up with friends, inviting them round or taking up offers to meet up outside the home.
I used to put things off because I felt tired or needed to get my highlights done so I could try to pretend I was untouched by the carer role and it was silly, really, as true friends don't mind about that stuff.

 

[BirthBlue]

💗 Hello

I wish I had recognised that things were not just 'older'age and maybe things could have been a little better although the outcome would be the same. Defo get LPA for health and finance, attendance allowance you name it go for it. Politeness but determination and persistence when dealing with professionals. They will disagree with you at times potentially but stay true to being your loved ones advocate. Don't give up. oh and take care of yourself because this is a long haul flight ...xx.

Thank you for taking the time to reply. Really appreciate your response.

 

[annieka 56]

Hello, it seems a few of us on this forum are newbies with someone in the family having recently had a diagnosis. I want to ask those further along, if looking back you wish had done something different at the beginning? Top tips welcome.

I think it's likely most people will eventually need visits from a carer at a later stage so I wish I had got used to having a cleaner coming to the house early on, to get the person with dementia familiar with someone else doing stuff around the house and not being some sort of unwelcome intruder.
Also - this is on a bigger scale - if you think the person with dementia's home (might be your home too) is likely to be too big or unmanageable as the condition progresses, I definitely suggest either getting that more accessible shower room put in or laminate flooring instead of carpets - easier for cleaning - sooner rather than later.
Even if downsizing looks like it would be helpful, do it now before the whole process becomes unthinkable.
Good luck.