Dementia Caregiver Fatigue – Harsh Reality

I’m writing this article from my bed where I’ve been since Thursday, and today is Saturday, the first day that I’m beginning to feel better.

Why? Life took me down, as I became overwhelmed with caregiver fatigue.

You may know that I’ve been caring for my mum with Alzheimer’s for a number of years, doing my best to try to ensure she has the best life. I was full of energy at the beginning. Mum was still walking and able to take care of herself mainly and only needed help for safety reasons. Even after her diagnosis, I worked part time as she didn’t need constant care.  

Bad Days Start To Outweigh The Good

But then she needed more support, things got more difficult but we dealt with every situation that life threw at us. I know about caregiver burnout, injuries, sleep issues and more! I’ve researched the hell out of dementia. I try every day to find new ways to ensure mum is enjoying life, doing the things she loves, trying to maintain meaningful interactions. But the bad days are starting to outweigh the good days.

Related:
Is this Caregiver Burnout?
How does caregiving affect your physical health?

Increasing Anxiety from Health Issues

My chief anxiety is mum’s increasing health issues both new & old, like her sleep patterns. The last few months, sleeping has become more of an issue. Some nights she sleeps through, other nights she’ll be awake all night chatting away to herself, to people in her hallucinations or calling out to me.

I’m Tired of Being Tired

It’s affecting her quality of life and, of course, my own. I’m tired of being tired. I rarely sleep a full night ever, my ears are always on alert listening to the baby monitor watching over Mum. I’m getting out of bed repeatedly to reassure mum when her anxiety increases. But, we’ve been through spells like this many times before. But this was different.

Related: Dementia: Caring for My Mum Through Sleepless Nights

Blindsided By My Own Body

I got up on Thursday morning after about 3 hrs interrupted sleep and I felt awful, with a headache. My limbs felt heavy, everything was moving in slow motion, I couldn’t concentrate and it took all my strength to do the most basic of tasks that morning for mum.  

Related: Is this Caregiver Burnout?

I still pushed on, not realising what was happening. I’ve been tired before, lived with insomnia for years, but this was so different.

Bone-Deep Exhaustion

This was bone-deep exhaustion. It felt like an all-consuming caregiver fatigue!

Paralysing me – stopping me dead in my tracks, no thoughts in my head, just unable to move…I’d just stop whatever I was doing & become immobile.

It took every last bit of energy to get going again, a momentum to move forward, only to get lost in another moment of paralysis, rooted to a spot for a few minutes, my mind completely blank.

My body had stopped cooperating, declaring enough’s enough.

I called for help.

Calling for Help

It was embarrassing. I didn’t understand what had happened. I felt guilty that I could have endangered Mum. What if I had just collapsed? I sat where I was & waited for help to arrive.

Thank god for my brother & niece. They came to care for mum.

Frozen Within Myself

I don’t quite know how to describe it. I was there but not there, at the same time, l was frozen within myself. I couldn’t think, time passed, I couldn’t move, rooted to a spot for what felt like hours but was only minutes, then I’d come to. I couldn’t trust myself to care for mum properly. I was confused, groggy & I just wasn’t there mentally, & frozen physically.

My body wasn’t hearing me. I sank into complete physical, mental, and emotional exhaustion – to my core.

I’ve been in bed ever since, sleeping on & off. I finally have begun to feel normal again today.

The only thing I can put it down to is that my body took over for its own self preservation.

I’m still recovering and haven’t fully processed how I got here but one saying keeps coming back into my mind ‘More Fool You’.  

More Fool You

A relative once said that to me when I explained some of the things that I did caregiving for mum where I had to use every bit of resilience or energy to do it on my own, and instead of celebrating my strength for putting mum first, they said ‘More fool you’ and I got so angry at the time.

But now, looking at the state I got in with caregiver fatigue the last few days & how bone-deep exhaustion left me feeling…. I really get it now!

More fool me! I get it now, do you?

Make sure to go to the bottom of this post and like & comment if you get it & share your experience 👍

P.S. Next week, more details & plan of action that can help me & you not to get to this stage again

P.P.S Here’s Kikki sitting protectively & keeping an eye on mum at first glance……but really, she’s just interested in the piece of apple in mum’s hand 😂

Til next week

4 thoughts on “Dementia Caregiver Fatigue – Harsh Reality”

  1. It doesn’t surprise me you have crashed and I know that feeling. I have experienced those types of crashes several times.

    The first was related to work stress.

    The second from caring, by being by mum’s side as support and to check she was stable, mentally. To then when I spent a lot of time sleeping on the floor at hers when she was getting worse and needing support for her mental health. Which became some sleepless nights.
    I then had to take a step back for my own mental health. I was getting suicidal. During that break and not far into my break was when I had the letter to tell me she was being sectioned under the mental health act.
    While being monitored on the ward, her mental health turned out to be much worse than I witnessed and I became further distraught and distressed. Especially after seeing her there and seeing how she was, and mum telling me not to come back while she was on there.
    In the end, as you may remember from the time I used to be on Twitter when sharing some of what was going on there and partly on my past blogs, she never got better and so the care home it was as I was warned.

    I then became her deputy for her financial affairs. My next burnout and then feeling suicidal again because I desperately want to be removed and it took longer to be removed than becoming one. It was just too much work and my mum’s finances were basic. But it wasn’t helped by time wasted in places on top of feeling alone because I am mum’s only daughter and so I had no one to share the load with until it became out of my hands.

    1. Thanks Liz, for sharing your experience. I’m glad that you worked through your crashes, and glad to hear you got out of the deputy role. Keep doing what your doing and focusing on your well being. I hopefully will continue in my recovery as well. Take care and thank you again.

  2. Sorry to hear of your recent crash, Kat, and I totally get it. It’s a tough job meeting daily care needs on your own and not being able to fully look after your own health and self care needs. Had my own carer burnout during the pandemic/lockdowns and when I finally saw a doctor they were surprised that I was still walking around. Hope the plan of action will help you and that you won’t reach carer burnout again. Take care and do try to look after yourself.

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