Talking About Dementia

People don’t talk enough about what happens when the dementia sufferer stops recognising you - or can't talk or write or take themslves to the toilet. And they definitely don't talk about those lonely days, endlessly visiting the care home, nor what happens after the funeral: how life keeps going, stubbornly, even when you’re not ready.

This is not a grief counselling site. Not therapy.

I'm collecting thoughts on issues that surround dementia care and support.

Some of this is provided by Artificial Intelligence, some written by me

and some contributed articles, some links to other sites

1. What is dementia?

ChatGPT gives a good introduction to this question. Link here.

2. Does it matter which form of dementia I have?

Apparently so. Jackie was diagnosed with Alzheimer's at the Memory Clinic and that diagnosis stayed with her until the end, even though I kept pointing out to medics that her symptoms were significantly different to those of fellow sufferers. I can't help but wonder if we should have had different treatments.

Using ChatGPT I have tried to answer this question. Read here

3. What is the difference between Alzheimer's and Dementia?

These two terms are often used interchangeably, but they are different. Here is an article written by Written By Dr Hilary Jones on the ww.telecare24.co.uk website. Read part of this article here.

4. What is a Dementia Hub?

I found this to be a great resource. Click here to find out more.

5. Are Ethnic Minorities More Susceptible to Dementia?

Recently I spoke to a close friend who mentioned that statistically ethnic minories are more likely to suffer from dementia in the UK. I wondered why. This is ChatGPT's response.

6. When the Carer Feels Alone, Even Though Their Loved One Is Still There

I found this very difficult. Jackie couldn't speak at all. Nor write. Only guestures or banging the side of her bed. Although there was a great deal to do, I stll felt very much alone. I was making all the decisions without feedback. I had to deal with 'advice' from friends and family. I had to think about myself as well as her. A tough scenario. Read a page about this here.

7. Support for immigrant families

This is information provided by ChatGPT. This page explains your rights about help for dementia and how to access that help. Click here

8. Extra information for Muslim families

Again this is information provided by AI. In English: Connect here.

یہ صفحہ اردو میں پڑھیں

આ પાનું ગુજરાતી માં વાંચો

So far so good. But my idea is that this site should expand to include info such as:

rebuilding routines
the loneliness that hits at odd hours
managing practical things (food, house, admin)
finding meaning again
grief that doesn’t follow rules
physical well-being and movement
friendship and reconnection
making the home feel safe again
small tools that help
reflections on memory and love
It is a guiding hand, not a “how-to.

I'd like to include articles on the site to cover as much as the following as I can:

1. The Practical Side

Getting help in the early years
Living with a dementia sufferer
Home care or care home?
organising the home
sleeping alone
eating properly
managing energy on days you can’t face anything
paperwork, accounts, admin
Choosing a funeral director
Organising the funeral

2. The Emotional Landscape

grief waves
mornings
anger, guilt, relief
anniversaries
talking to them after they’re gone
forgetting small things
keeping love alive without holding on too tightly

3. Living Forward

new routines
walking
tiny adventures
reconnecting with old friends
meaningful hobbies
what healing actually looks like
giving yourself permission to live

I'm using AI to help me phrase all this as best I can. But it will take ages to get everything in place.

If there is something you would like me to prioritise, send me a message.