Am I A Nurse Or A Dementia Caregiver?

I never thought that when I gave up work to look after my mum with Alzheimer’s disease that I’d end up being a nurse and a daughter caring for her. I had all those stupid stereotypical images of what dementia meant in my head. I always thought of it as memory loss and I’d be there just supporting Mum when and if she needed me.

But of course, the reality was totally different.

First Few Years

The first few years were fine after diagnosis. I was supporting mum when she needed it, helping her run the house and doing paperwork for her while I worked part time. 

But as her Alzheimer’s progressed, things got scary with the continuous falls & issues about safety at home, so I gave up work. Then she developed spinal cord compression, was operated on but could not walk afterwards and life changed again. 

So now we needed care workers, hospital bed, hoist, commode, incontinence stuff, district nurses, and she needed 24/7 care. It didn’t stop there, in came diabetes, other issues and finally the catheter & all the issues that entailed.

Ignorance

I had to learn so much over the years. I look back and amazed at the amount of things I’ve actually done medically and everything else. Things that I would’ve never believed possible.

The old me had no idea. I miss the old me, the ignorance of thinking how simple life would be supporting mum with dementia. I miss the fact that I had a life outside of caring, friends, money to spend on anything that took my fancy, going out for dinner, and caring about how I looked, I can’t remember the last time I bought a new dress! But I digress!

The Things You Do

I remember doing the weirdest things to help mum. Dealing with things like poo, urine, fungal toes, and giving injections didn’t bother me, but could freak others out!

I remember we tried sooo many diets to help improve mum’s health, gluten-free, keto, vegan, vegetarian, alkaline, sugar free. God, I remember that years ago before it became fashionable trying to make bone broth. It was impossible to find halal organic bones in Wales, so instead I made fish broth. Yep, fish broth, madness.

Can you imagine the smell of our house when I made that?

Not only did I need to learn how to gut a fish (thank god for YouTube). Yuck, ooh, the memories of gutting, cleaning, chopping off heads and then boiling the bones on the stove (didn’t have a pressure cooker then!) made our house stink for days.

Health Interventions

Thank god that phase of health interventions is over now. All these things were attempts to slow down the disease and reduce inflammation in mum’s body.

And of course, nothing really works. Dementia is a progressive illness. Mum’s been living with it for over 10 years now.

Health Needs

But Mum’s health needs are becoming more complex and she is having more issues with illnesses. The day to day small changes mean that I’m becoming more of a nurse to mum rather than a beloved daughter.

I don’t think I’m the only one experiencing this, being consumed physically and emotionally in trying to keep our loved ones with dementia on an even keel with their health. As well as trying to help her maintain her mental health, living a life so different from what she imagined or wanted.

Ready for Emergencies

Do you keep a health journal or a diary like I do? I keep a note of every new symptom, every illness, any medication changes, doctor’s visits and hospital stays. I do this as time seems to move so quickly, and every time anything happens health wise you’re always asked things by medics like “When was the last time you…….” and you can fill in the blanks there!

Learning the Basics

I’m not medically trained, but I’ve learnt the basics so that if mum is ill and I’m waiting on a doctor or an emergency response, I can carry out & note regular obs, her temp, blood pressure, SpO2, her diabetic level, etc.

More and More Infections!

But this week has been hard, with mum having possibly multiple infections. One day she’s sleeping all day, unable to keep her eyes open, not able to be engaged in anything however much I try, and the next day she bounces back. I’m struggling to deal with it, as each day is different. 

I’m constantly checking her temperature, encouraging fluids, checking that she’s eating enough, trying to nurse her back to health. Samples sent but come back without definitive results to identify the bug. 

The doctor offered to come out to take samples for a new issue, but instead of her coming out, I said I would do the procedure to make it easier for mum. Something I almost regretted because I couldn’t even get the test kit open!  The instructions weren’t clear at all! Google to the rescue, where I found better manufacturing instructions on their website than on the instructions on the test kit itself. Go figure! The test has been sent to the lab, and now we wait again.

Responsibility

I’m responsible for making sure that mum is as well as she can be until we identify what actually ails her. I’m trying my best to keep her well, but I know she’s not. But what can I do? 

Being a dementia caregiver means that you’re responsible for more than just yourself. If your loved one doesn’t need that much care, is still very much independent, living their best life, then that’s great.

But for my mum, she’s physically dependent on me, so I need to juggle many different roles. Nursing is one of those roles. Am I a nurse? But I’m also her daughter, and that comes first.

Ps Don’t forget to LIKE and Share and leave a comment. Thanks!

PPs. Here’s Kikki with the right idea, curled up and sleeping!