Navigating Alzheimer’s Care: A Personal Journey of Persistence and Advocacy

Carer's Chronicle

Why Read On …

Dive into a compelling personal journey of navigating the challenges of Alzheimer's care. Learn about the importance of persistence, the frustrations of dealing with social services, and the heartwarming moments of caring for a loved one.

This blog offers practical advice, emotional insights, and a reminder that you're not alone in the caregiving journey. Perfect for anyone facing similar challenges or looking to understand the complexities of Alzheimer’s caregiving.

Down The Dementia Rabbit Hole

About three years ago, I began to notice that my mother’s behaviour was even more off-key than normal… and that is saying something!

Since a somewhat turbulent exit from school and home on the same day in 1985, I’d tried to limit my exposure to my mother to high days and holidays, which has generally suited us both. Mum's unfettered comments, initially to girlfriends, then wives, then my children, have ensured that a certain degree of "space" was the only sensible approach.

I remember one particularly grating incident some 15 years ago when she told my ex-wife that our two-year-old would never have any friends; it went down as well as you can imagine!

In fact it led to me waiting for an apology that my mother’s stubbornness guaranteed would not be forthcoming.

Years later, in 2016, my mother experienced a medical emergency and in the subsequent months, decided that living nearer to one of her two sons was a sensible choice (for her).

She decided I was the most likely to help out (damn it, she was right) and moved to my hometown late in 2017. When my daughter and I arranged a birthday meal for her in 2018, her behaviour was even more off-key than usual. There were then a number of incidents that led me to arrange a visit to the doctors, where they conducted a memory test.

This highlighted a serious issue that was then investigated more thoroughly, including a brain scan, which led to a formal diagnosis of Alzheimer's. It’s all been a roller coaster ride (the kind that takes you where you don’t want to go and you cannot get off!) since then.

Getting help from social care in the UK is no easy task. It took me four attempts to even get someone to recognise that Mum had needs. If you're the one keeping everything running smoothly, you might be your own worst enemy here.

My first three attempts failed with comments like:

"There is food in her fridge" (I know that; I put it there),

"It's not rotten" (I know; I get rid of anything past its sell-by date), and my favourite,

"Her toilet seems clean" (I f**king well know; I clean it).

The lady who visited was very pleasant, but it was obvious she felt Mum was managing okay. Thus, I was forced to adopt a different approach; so I asked for a new liaison at social services.

I highlighted that I was delivering about 20 to 25 hours of care a week and, if I dropped off the face of the earth tomorrow, everyone would be up shit creek without a paddle. The new contact recognised the truth of this and, with much pushing from me, managed to argue for and secure 10 hours of third-party carer support a week to aid my mother's social integration. Over time, this has slowly but surely increased to 20 hours a week, supplemented by my 15 hours.

This experience taught me a valuable lesson: persistence pays off. If you’re in a similar boat, don’t be afraid to be the squeaky wheel. It might just get you the help you desperately need.

So, stay tuned for more chronicles from the frontlines of caregiving. And remember, if you feel like you're reaching your breaking point, it's okay to ask for help. Even if it means navigating the labyrinth of social care – because, frankly, it's better than going completely bonkers.