Friday, June 2nd, 2023, my mother passed. It was her third day in hospital, a fact which, had she been aware of would have been a source of much distress. But to my and my siblings’ knowledge, there was no such awareness. From what the Doctors told us, she was past the point of awareness before she was brought in and even before I found her.

As tough as this might be for the rest of us though, this is what’s best for Mum. Her world largely consisted of suffering, physically and mentally, for altogether too long now. Parkinson’s took everything from her. Despite where she was, and how she would’ve felt about that, I’ve not seen Mum so at peace in a great many years. No dystonia. No tremor. She was beyond the reach of all of it. She had her family around her around the clock and until her final breath, so she didn’t have to go alone.

From a grief and grieving perspective, there is going to be a lot to unpack here over time. I have many regrets from over the past months, ranging from reflections on lost time, to words spoken in frustration, to simply not having replied to her last text message in a timely enough manner that she would have seen it because it was on a trivial matter and I was working.

Work has been good, and encouraged me to take the time that I need — but honestly, I don’t really know what that looks like. A lot of the time, I’m already fine. But then, a stray thought, a particular line of conversation, just… something, and it’s all over for a bit.

None of those things are what I want to go into now.

Instead, I wanted to share some thoughts on the main issue I saw over the time agency caregivers were on the scene.

Caregiver Power Imbalance and Burnout

Through to about August last year, it was just us kids providing care for Mum. From then onward, agency caregivers were slowly introduced. With Mum’s fear of having people in her home, each new one, each additional day, was a huge deal.

Mum’s case required a fair amount of caregiver training to take on, and the demands of a shift with Mum were very high. So any time a caregiver quit and a new one trained — it was a big deal and carried a lot of stress for Mum.

While true, as it turns out, there existed another — in my opinion worse — problem at the other end of the caregiver tenure spectrum.

As noted, the demands of Mum’s care were high. Burnout was a very real concern. For the most part, this was reflected in higher counts of sick days. But other times it reflected in the degree of care offered, choices made, or even things said.

The worst part of this is that Mum never felt like she could complain. She was afraid — and I think rightfully so — that to complain would be to aggravate the situation. Or worse — in her mind, I didn’t always agree with this relative ‘badness’ assessment — it would make them quit. Mum started to tell us only belatedly of anything that had occurred of this nature, and only with significant promises made that we wouldn’t complain on her behalf without her permission and I worry about what she may not have told us.

Would this have been different with care provided in a care facility, rather than in her home? Perhaps. But I believe the underlying problem, that the professional caregiver holds all the power would have remained the same, even if we could have convinced her to go.

I don’t have a good answer to this. The power dynamic seems intrinsic to the nature of the relationship itself, a dynamic that grew worse with the scarcity of caregivers available during the worst of the COVID pandemic.

Not a concern for you anymore though, Mum. I love you.

Categories: Other

Naithin

Gamer, reader, writer, husband and father of two boys. Former WoW and Gaming blogger, making a return to the fold to share my love of all things looty.

16 Comments

isey · June 6, 2023 at 6:46 am

Sorry to hear about your mum, Nait. I can’t imagine the lives impacted by Parkinson’s. I’m lucky to have both parents, although one has early onset dementia. I hope you continued to be surrounded by friends and family.

    Naithin · June 6, 2023 at 10:30 pm

    Thank-you Isey. Parkinson’s Disease is an absolute horror. It was early onset in my Mum’s case too.

    All the best to you and your family, also.

Nimgimli · June 7, 2023 at 3:05 am

Very sorry to hear of your loss. Please be kind to yourself and let go of your regrets; you’re human after all and anyone who has been reading your blog has watched how devoted you were to giving your mum all the help you could offer.

    Naithin · June 12, 2023 at 8:54 pm

    Thanks Pete.

    The service was today, and it was every bit as difficult as I imagined it would be, and yet also very lovely.

    Although so much of this past week has been for, or about, today — that I’m now at a bit of a loss as to what is next.

    It felt a bit different going to her place today after the funeral compared to the rest of the week when we’d been there. Hard to put finger on why, just yet.

WCRobinson · June 7, 2023 at 10:52 am

I’m very sorry to hear this, and thank you for sharing your thoughts. I’m sending positive thoughts your way in this tough time.

    Naithin · June 12, 2023 at 8:57 pm

    Thank-you.

Mailvaltar · June 8, 2023 at 1:51 am

My condolences!

    Naithin · June 12, 2023 at 8:58 pm

    Thank-you.

Rakuno · June 8, 2023 at 8:06 am

My condolences.

    Naithin · June 12, 2023 at 8:58 pm

    Thank-you.

Roger Edwards · June 12, 2023 at 3:44 am

My apologies for coming to this post late. First of all my condolences to you and your family. The loss of a parent is a major blow irrespective of longterm health issues.

Caring and trying to do the right thing are often not the black and white issues that some people think. Especially those who have not had to deal with a loved one with a major illness. Your anecdote about not repsonding to a text fast enough highlights the situation perfectly. To others it may seem trivial but it can be the cause of immense agony and self doubt. I know this from my own experience.

We are human and therefore flawed and so cannot navigate such matters without mistake. All you can do is your best. It seems to me that you and your family have done this. It is time to grieve, reflect and recuperate. In time you remember the good times and the bad times don’t necessarily diminish but are put in perspective. 

    Naithin · June 12, 2023 at 9:24 pm

    No apologies necessary, Roger. I know you’ve had your own parallel journey to all this, and that things are likely still very fresh for you, too. Having said that, I’ve appreciated your insights and candour you’ve shared be it on your blog, in Discord, or in comments.

    The service was today, and it was a rough ride. Speaking in particular. I’m glad I did it, it was the last act of service I think I could offer Mum.

    Ultimately, I think that you’re right and with time things can be put into perspective, as long as I can believe Mum knew I (and her other kids) loved her, despite some harsh words — or at the least, blunt truths — spoken when it came to her living and care situation and her refusal to consider out of home options, until the point it was far too late.

    And by then, getting the appropriate needs assessments done, or even finding a place that wouldn’t respond with a multi-month wait list clearly wasn’t on the cards.

    One of Mum’s Dr’s came to the service today, and told us that the system had failed her greatly. And… yeah, I think to an extent it did. But boy I know she was a tough patient with refusal to take any care for the longest time.

    None of that I suppose is overly important now. Just, like I say, I hope Mum understood where that frustration came from. I think she did, but I guess you can never really know.

meghanplaysgames · June 14, 2023 at 2:56 am

I’m so sorry Naithin, I hope you and your family are doing okay <3

    Naithin · June 20, 2023 at 4:17 pm

    Sorry for the delay in replying. I started to several times.

    I think overall family is doing OK. In general, the last 12-18 months have been so terrible for Mum in general, so in one respect this is fine, but in every other.. Geez.

Jaedia · June 30, 2023 at 3:40 am

I’m so sorry, friend. hugs My nanny also suffered from Parkinson’s in her later years and my grandpa likely had Alzheimer’s in the year or two before he passed, it makes me dread what may be coming for my dad as an only child who lives 230 miles away. :(

I wish nobody had to deal with these things, it’s so heartbreaking and just so … traumatic. Sending you lots of love. x

    Naithin · July 2, 2023 at 12:45 pm

    Thanks Jae.

    Must be difficult being that far from your father as well. Hope you still at least get to visit for holidays and whatnot.

Comments are closed.