Diary – Imagine

Monday 17th June 2024

Embracing Life’s Changes

Just imagine, most of the friends you have made over the past years stop calling.

The job you did for years suddenly ceases.

From being exceptionally busy, with very little time for myself. Now I look for things to do to fill my day.

Life can change in the blink of an eye.

One moment, you’re going about your daily routine, and the next, everything suddenly changes!

Being diagnosed with a terminal illness / Early Onset Alzheimer’s in my case, is a life changing experience…But it doesn’t have to define you.

This can be the beginning of a new chapter, a chapter filled with new growth and a deeper appreciation for life.

Life with a terminal illness is filled with lots of uncertainties, fear, grief and loss.

Adjusting to this new life with dementia is constant.

I have had to accept, things are different now. It has taken time, along time.

Sometimes I still have moments where I still struggle to accept, especially when something else changes in my brain.

I suppose it has been a grieving process for the life i once had.

I lost most of my friends within months of receiving my diagnosis.

You would think Alzheimer’s was a highly contagious disease!

I have now moved on from the disappointment and grief of loosing friends. I had too…No point dwelling!

I have made lots of new friends, like minded friends, but unfortunately they are all online.

I do miss the face to face chit chat, having a brew, oh and a real hug!

Adapting to a new reality, has been essential. Changing my mindset and focusing on the things I can do rather than the things I can’t do.

I have learned over the last 5 years to embrace my strengths, my passions and my hidden talents that suddenly emerged after my diagnosis.

All the new things have helped to redefine my identity.

I now immerse myself in new hobbies and interests.

I now do the things that bring me joy and give me back my sense of purpose.

Inspiring others and challenge stereotypes, gave me back a focus in life. However I do find it difficult and exhausting to keep it going constantly, as my energy levels are not what they used to be.

This new chapter of mine is an interesting one, with many, many hurdles, which has surprised me just how difficult it can be when faced with a terminal diagnosis…I think it has something to do with the fact it’s a dementia!

The D word!

It is also interesting how some of the medical professionals instantly ignore you, it’s like I have become instantly invisible!

I was listened too before my diagnosis, so what changed!

Oh yes I was diagnosed with Dementia!

It definitely stood out for me, when the Alzheimer’s campaign said “people with dementia die again and again and again “

No we don’t!

It’s some of the professionals that think we do!

I have had to navigate this terminal disease feeling very alone for the last 4 years, with very little support from medical professionals.

Thank goodness for Admiral Nurses. I am one of the lucky ones, recently I received a wonderful Admiral Nurse.

Unfortunately there are not enough of these nurses to support everyone in this growing dementia climate.

Dementia UK are constantly working on that one!

Just imagine you have just been given a terminal diagnosis and then you have to fight to receive any support. Which is a constant continuous battle.

I have faced so many challenges and pushed aside so many times!

It is exhausting!

This is where my wellbeing suffers, which is no wonder really.

I have to remember:-

I am more than Dementia!

To Anyone who is living with Dementia, disability or terminal illness

You are, a courageous, and valuable individual.

Everyone should be valued and respected, regardless of their illness or disability.