Dementia. Its a bitch – Part one

Two nights ago, my mum held me under the full moon and I cried. I didn’t just cry. I sobbed uncontrollably in a way that the neighbours would have heard. It roared out of me in an unruly outflow. Intense grief that’s been held back in fear that, once it starts, it will continue like a torrent. Which, of course, it did.

For the past two days I have not stopped crying. And I don’t mean a sniffle and tear here and there – I’m talking uncontrollable tears that made Nahlo’s poor little face fear that I was not ok. I have never experienced tears so forceful and full.

Two nights in a row I cried hard and silently, using physical strength to hold back the whimpers and snivels that you tend to feel in your throat when you hold back your voice. The physical sensation of those noises tearing from my insides and the most intense grief of my life.

Nahlo would whimper “Mama” and “Mummy” during the night and snuggle in close, asking to be cuddled. “Cuddle Mama” is the current mantra. I love it and also, at times, it feels overwhelming. I have always been someone who craved space, silence and solitude. I get that from my dad, who has been a real rock for me during this whole process.

My mum has dementia. To watch someone slowly die in front of you is truly fucked. It’s intensely painful. It’s a real physical experience for me, this. I trust this process fully, but that doesn’t make it any less hard.

I’m close to my mum. We have bickered most of our lives and are so different, but there has always been a deep underlying love between us and we have done heaps of cool shit together. She was definitely always the ‘cool’ mum and I have super fond memories of her always joining in the party when I was a teen. I also look back and cannot believe some of the things that happened between us. I have certainly questioned her parenting choices, but also know she did the best with what she had at the time.

At the beginning stages of Mum’s condition, when it was more subtle, it was easy to fall into “she could be like this for another 20 years”, which is true for dementia, sometimes. But not with Alzeimers. It has done nothing short of fucking blown me away at how rapid this decline has been. One minute I could reminisce with Mum and the next fucking minute I’m scrambling at all of the questions I have ever wanted to ask her about her life and she is unable to put a sentence together, despite her effort.

She had an incredible life, my mum. She was certainly a wild woman for her times (born in the early 1940’s). Frivolous and carefree, even though she perhaps ran away from any uncomfortable sensation that would arise for her. She seeked out the positive, even when things were anything but. It was often frustrating for me, for her inability to talk about the hard stuff.

At the start of this decline, I sat with her at a fleeting moment with only the two of us eating fruit at our kitchen island bench and I asked her what her very first memory was. She looked off into the distance, furrowed her brow and told me how she remembers being scared, as if fleeing from something (the war, I think she said) and on a train that was jam packed with people escaping from the same thing. It was my mum, her younger sister and their mother. My mother got put up in a wildly flailing hammock-type sling that hung from the ceiling of the train, while her sister sat on their mother’s lap. She was terrified and screaming. Screaming and screaming, but just left there. When my mother told me this story, I could feel the deep wound in her from this. It was written all over her face and bound up in her expression. For me, so many things clicked into place: why she is like she is and why choices she made were made.

Mum’s a runner. No fucking wonder. Hanging in a swinging sling, away from the person who is literally keeping you alive, already terrified from some life threatening experience. Infinite trust was broken at a time our entire sense of security and safety that spans into our adult lives is cultivated – crushed. While Mum was incredibly affectionate and loving towards her children, the deeper connection and honesty was amiss. Presence was a hard thing to come by with Mum, especially if you wanted to talk to her about something that wasn’t all sunshine and rainbows.

As time went on, you would see great big dips in her cognition and ability to do things for herself. She had severe moments of anxiety and plummeted to really low lows. We took numerous paths down the holistic route, but Mum always wanted to stop taking whatever herbal and natural therapies were given to her, at some stage.

Mum’s on no medication. She won’t take it. She was prescribed antidepressants. She wouldn’t take them. She just doesn’t like the idea of taking something. I get that from her, so I fully understand.

One day, during a particularly challenging time, she explained in her broken language and little ability to engage in conversation, that she wished that it could all just end. As she closed her eyes, she said “poof” and flicked her fingers in the way that you do if you are, perhaps, pretending to disappear. She was basically telling me she wished she could die. I have had moments where I have wished that I could end all of this for her and simply rock her deeply into a peaceful slumber. There is little quality of life when it comes to Alzheimers. Those moments when they realise that they are losing all control are awful for them. To know you are losing your mind would be a terrible thing, and I saw Mum go through that recognition a fair bit. It was often terrifying for her.

For me, I experienced what felt like a race against the clock. Dementia waits for no one. Getting the power of attorney, taking control of the money to pay bills and eventually people who come to support us, and her main carers – my brother and I. We have some amazing people from CURA who assist with taking Mum for a walk and domestic services.  

The night I fell apart in Mum’s arms was also the first night I had to brush her teeth for her. How ironic. I literally brushed my teeth, then Nahlo’s, then Mum’s. What a fucking trip. In a weird way though, it made me feel closer to her. I’ve never seen her so vulnerable.

Throughout COVID, my mum deteriorated again, a fair few times. We let her carers go as we went into lockdown and I prepared myself for perhaps not being able to see Mum for six months – a terrifying thing when you’re up against the clock of dementia.

I’m super grateful for the government in ways that I see my mum completely financially supported, but a lot of stuff has saddened me too. It was fucking stressful when they started talking about shutting the borders with no actual information other than you will not be able to cross. So little information was given and it was a stressful and sleepless night preparing myself for something that was not even going to eventuate.

At a time my workload tripled and at a time I lost my babysitters due to the border closure, my brother and I also became the full-time carers of my mum. It was a challenging period with her. She was always anxious and needed undivided attention. At times, Nahlo and her would compete for my attention and argue. In reflection, I realise it was an anxious time for everyone when COVID kicked off. Both Mum and Nahlo were just vibing off that.

As restrictions started easing, we pulled in more support for us all, we got our babysitter back and Mum had an uncanny moment of clarity as she requested to look at getting her into a home. We were sitting drinking tea in another rare moment between just us (without Nahlo) when I realised and confirmed that’s what she was making an effort to convey. I immediately started to take the steps in calling whoever could lead in the direction of how to do that. No shit, five minutes after that convo I was on the phone. There are many steps and I would come to realise pretty quickly that this would not be a fast process.

We started with looking into respite. As the days went on and Mum deteriorated again, we realised that it was actually time for a home. It’s a big step for the person who is being cared for, but it’s just as big for the carers. I, personally, have a preconceived idea of what a home is – and, unfortunately, it was not a positive one. I do often wonder why that is and where it comes from, the preconceptions.

So, the search commenced.

The first place we went has left a permanent  scar on my psyche. I won’t actually share the exact details because these people, who have families – are all, no doubt, suffering.

It was pouring rain that day and Mum and I walked the three levels, holding onto each other so tightly. I actually look back and feel that my mother was, on some level, supporting me, her daughter, through this process of ravelling, and unravelling. When we finished the tour, Mum sat down at the front door while I went to get the car as it was raining. As I went to the carpark, I burst into tears before pulling myself together to be strong for my mum.

We talked positively about it, pretending that it wasn’t as confronting as it was, Mum holding onto her ways of only looking at the bright side and refusing to acknowledge how shit things can be – still! God, I love her. In this moment, I am so grateful for a quality in her that has frustrated me so much throughout our 40ish years together. She has been incredible throughout these times. She knows what’s going on as far as going into a home, despite it being terribly difficult.

We have kept Mum a part of the entire choosing process, despite her mind being like a sieve. She has looked at all places we have gone into, we have spent time alone discussing it straight after being in each home so it’s fresh, because if you speak to her about it much later, she has forgotten.

I have had countless calls with my auntie (Mum’s sister) and her daughter (my cousin) to keep getting clarity at a time I often feel I am struggling making a clear decision. I hope, all the time, that they will be able to come over from NZ soon. Obviously, due to COVID, they are unable to come over, which is incredibly sad. They have really been the only people, other than my brother and Brendan, that I have been able to talk to fully about the extent of it all. Not for lack of people reaching out from every direction though. “How’s your mum?” is a hard one to continuously have to answer. Because, with dementia, it does not get better. The decline continues right up until they take their last breath.

The second home we saw was much better. I guess we braced ourselves, but in hindsight I can see that the first home was not going to be hard to beat by any measure. So, this one seemed pleasant enough.

Thankfully, after a recommendation from someone else who has had to deal with putting a loved one with dementia into a home, we found a place that was actually nice. Thank fucking God. I was relieved. Excited even. Obviously, Mum vibes off us, and even though I could tell the whole process was not easy, she was remaining somewhat steady in this big upcoming shift.

We looked at another couple of places, but they didn’t really measure up. I can’t stress enough to anyone going through this –  just go and see a bunch of places and get a feel. You are literally looking for a team you can work with to help care for your loved one. I have the burning desire to know exactly who will be looking after my mum and exactly what care she will be getting. Kind of like a mother to a child, that protective mechanism to always need to know that they are ok and that who they are with are loving and nurturing people. It’s bizarre, this sudden role reversal.

I remember a couple of weeks ago, giving Mum a hug and really dropping into the childhood me and my mother. There are serious wounds there that I looked at time and time again, but in this moment, it all dissolves and I know that she has always done the best she could with what she had at the time. My trust towards her no longer matters. All I know is that I love her so much and I’m scared for the moment that is inevitable when it comes to dementia.

Wan’t to know how finding a home for mum actually goes? Read part two hereThe ultimate practice of Ishvara Pranidhana (Surrender)