The System, Dementia & The Remedy

It has recently become apparent that we have two choices.

Do nothing. Wait. 

Or

Take action. 

The first choice - sit back and wait. Sit back and hope that everything returns to normal, that loved ones can be reunited, that people who are in immense suffering will be supported, and basic human rights and needs will not have to be fought for. 

I chose this option for a while. But there comes a time where the heartache and rage mixed with the innate love I have for my rapidly declining mother is too much to bear. 

Couple constant reflection and self enquiry (Svadhyaya) with necessary devoted action for truth (Tapas) and the deep knowing that what’s happening to her is just not right or ok. Combine this with an unwavering faith in the process (Ishvara Pranidhana) and an extraordinary, deeply dug, heart-pulling need to make something happen, while cultivating kindness, compassion and empathy (Ahimsa) with what I know in my heart to be true (Satya) -  my brother and I decided to take serious action and fight for the basic human rights of our beautiful mother. 

It has been a full year of effort through Covid for our family to move back over the border to the Gold Coast so we could be closer to my rapidly deteriorating mother. Every single Saturday we were at open homes with what seemed like every other person on the planet. We were up against buyers and renters who were bidding far more than asking prices, and I could feel the weight of the time that waits for no one where dementia is concerned. Desperation was at an all time high. 

After many, many futile attempts to relocate, not just to be closer to mum, but to be on the right side of the border, we finally made it. At which point we were slapped in the face with a snap lockdown of my mum’s care home and we couldn’t see her at all. A three day lockdown turned into an eight day lockdown, which turned into a two week lockdown then a more than three week lockdown. It was during this time that Mum became increasingly unwell. 

Just for context, Mum can no longer express herself with words. Her cognition has been smashed. She cannot talk sense and no longer understands much of what others are saying. She is noise sensitive. A telephone doesn’t make sense to her. Video chats further discombobulate her. There are very few communication options available for her to feel safe, held and heard. As a direct response to her feeling unsafe, her mental condition rapidly declined and it seemed there was nothing we could do about it but sit back and wait. 

The care home doctor wanted to medicate Mum. Not just a gentle solution, but three different drugs to “help her”. However, my mother currently weighs a maximum of 40kg - she is a total lightweight and always has been when it comes to drugs and other chemicals. So, I couldn’t help but feel that this extreme course of action was only to make things easier for those looking after her. 

The care home is at full capacity, overworked and understaffed, with employees only able to turn up, do a job, and tick the expected tasks off their long lists. It’s inevitable that the people living in aged care become somewhat of a number. It's no one’s fault and in no way am I pointing the finger. The system is flawed. 

Mum’s home has been wonderful. The management, the nurses - their hands are mostly tied. They have answered every single phone call of ours with compassion, understanding and deep, heartfelt apologies. They want to give us access as much as we desperately want it. They are working their fucking asses off and now, as they announce another lockdown, I feel for them - having to call each family to tell them that they can no longer see or hug their loved ones. 

The medicines that were offered for Mum’s mental decline and subsequent anxiety would have real and lasting side effects. She would likely become a vegetable and that last little spark of recognition and love that remains when she sees her children would be extinguished. But managing her would be easier for the carers, for sure. 

Personally, if I wanted to stretch my legs but was shepherded back to my little bedroom everytime because someone at the other side of this very large facility was sick, I’d be pissed off too. It is so hard because Mum has no idea what’s going on. She’s unable to reason why she cannot move about the facility, why she cannot see her children, or why she cannot exercise or feel the sunshine on her skin for months and months on end. The doctor’s answer to her anxiety and frustration? Medicate. And I’m not talking about trialing one thing at a time here. Three drugs at one time, high dosage. To start immediately. 

Well, fuck that. 

I have a strong appreciation for Western medicine. We are extremely lucky to have access, but personally I think there needs to be far more education in regards to some of the simple truths around health. Sunshine is vital for someone with dementia. It’s vital for everyone! Healthy food, exercise and CONTACT. All you need to do is look at the studies done in orphanages where children die even though they have food, water and shelter. You can die from not having loving contact. It’s a basic human need. 

My mum cannot communicate and is trapped in the bubble of her mind. The wonderful staff working on the frontline don’t have the capacity or the resources to give each resident one on one time, love and connection, exercise and a daily walk in the sunshine. It baffles me as to why the fuck not - with all of this money that is currently being thrown around. 

We were extremely lucky that Mum’s home came out of lockdown just in time for her sister and niece to arrive. We are all extremely close and they have not been able to see her since her diagnosis due to travel restrictions (they’re from NZ). Four days into their stay, another lockdown. That’s right, Mum’s care home only opened for four days before another lockdown was called. 

It was the day after her birthday and the day we’d planned on seeing her to give her presents and celebrate with tea and cake. I got the email stating the snap lockdown and instantly picked up the phone. That day I begged. I begged to have access. Begged for her to be able to see her sister and niece to say goodbye. I was on my knees, crumpled by the unfairness of it all. There were no Covid cases nearby - the reason for lockdown was one case of respiratory illness within the home. ONE. Again, all residents were expected to stay in their rooms. An impossible ask for someone who cannot reason why - who just wants to go outside - who wants to see her family and, in my eyes and heart, somewhere in her being knows we were meant to be together that day. 

My mum is fairly private so I will respect her and my family by not going into as many details as I would like to, but this was the start of some real action being taken to fight for our mother’s human rights for exercise, sunshine and contact. 

I’m not exaggerating when I say I called nearly every single day to see how Mum was. And every time she was not OK, which was increasingly often, that fire in me to do something burned stronger. I’ve always been an action taker, but to do it with grace took practice. I felt underlying rage simmering at a system so fucked up that not that long ago would have had me spinning out of control and pointing the finger at whoever seemed to have responsibility over this situation. I still can’t pinpoint who that is, and that very lack of transparency makes me question everything and trust no one within power in this current climate. 

It’s kind of like a game. You need to make people like you if you want them to want to help you. So, you have to be nice. HONEST but nice. (Satya and Ahimsa at the very core of every action that is taken and word that is spoken) This is actually the most important ingredient. Without this, it’s likely you won’t get far. 

We’ve taken Mum on outings for numerous medical appointments because that is the only reason a resident is permitted to leave the facility. In the meantime, discussions were being had about the fact that, yes, this is an emergency situation. In my eyes, every situation where someone becomes mentally unwell is an emergency situation and action needs to be taken. How and what action is obviously up to each individual, but as far as Mama's concerned, we are taking into consideration two things. What would her wishes have been? What is best for her right now?

Mum’s wishes are simple. She trusts in the process of life without intervention. She made it very clear on her way down the dementia spiral that she didn’t want anything that was going to get in the way of her passing. She doesn’t like taking anything: Western medicine nor natural medicine. She’d prefer to take nothing. She also needs to move her body. She rode her black BMX bike right up until she was 76. Throughout her life she walked with serious purpose to dissolve a nervous energy that was passed down the line to me. I get it. Some of us (all of us) need to move. And she needs to be outside. The few times I took her outside to get the sun on her skin was an orgasmic experience for her. She would soften, sigh and whisper, “Heaven” as soon as she felt the sun on her skin and the wind in her hair. It was obvious she wasn’t getting this without her family making it possible for her.

Mum’s language of love is physical touch. It’s a no brainer to understand that physical touch doesn’t count unless it’s seeped in deep love. The touch of nurses giving you a shower and putting your clothes on or helping you go to the toilet or putting you to bed is not the physical touch that deeply heals. Sure - it’s better than nothing, but in this case, it’s not enough.  

It was obvious that this was an emergency. We knew what would help Mum and the staff that take care of her - the ability to move her frustrated and pent up energies, to feel the sunshine on her skin and to breathe fresh air. And of course, to hold her children and to be physically held by unconditional love. 

We pushed back to the idea of medicating her until we were able to try the latter. Through negotiations the care home staff let us have access to her and would bring her out the front of the building to be with us, since we weren’t allowed in. It was obvious to the staff that witnessed her fall apart emotionally at the sight of us that satisfying her basic human need of loving physical contact was vital for her health. 

There were numerous meetings, countless phone calls - so much time and effort - all with an undertone of love and understanding for everyone in their position. The nurses, management, everyone. At one stage, they themselves were fighting against going into another lockdown. It was through this process that we created quite a strong bond and understanding between us all. Never were we pushy, but we certainly were not backing down, gently and surely carving out a non-negotiable pathway to reclaim and maintain as much of our mother’s health and wellbeing as possible under the circumstances. We also got a medical certificate to state that mum’s mental health would benefit from us being able to take her for a walk and to just be with her. 

And we got there in the end. 

We got an exemption. To get Mum out to exercise her during lockdown. To hug her. To help those looking after her. 

We are so grateful for those who care for Mum and for those who manage the home where she lives. The aged care sector needs attention. It’s incredibly flawed. The way medicine is often handed out and thrown around without any insight into an individual's needs - or any thought given to other natural options is mindblowing. It’s not a secret that natural and simple remedies such as sunshine, exercise, healthy food and contact are not at the forefront of the heart and mind of whoever it is dictating. All you need to do is turn on any form of mainstream media to see that. Why would we not ensure an unwell individual is getting those things first? Then if these things are tried and tested, but fail, then sure, pull out the medication. Of course, we are lucky to have access to that too. 

Anyway, I could add a whole lot more to this about why I feel the system is flawed, why I question everything and truly trust very few people. But I’ll leave this on a positive note. 

Ahimsa. It’s at the very heart of our practice. If you cannot dig deep enough to be nice, speak kindly and transparently whilst maintaining steady ground as action is taken with an open heart and mind, it will be hard to get what you need - especially in this climate where everyone seems to need to take a side and voice their opinions. Be kind and know that everyone is doing their best. 

Satya. Honesty is only effective if it embodies the above - Ahimsa. The need to be right is a waste of energy. Do the inner work. The best thing you can offer is your own peace and steadiness. 

The Remedy?

Tapas. Do the work. Take action. 

Svadhyaya. Know that everything that triggers you is a reflection of your internal world. Take responsibility for every feeling that arises within you. The only thing you have control over is the way you respond to anything and everything that happens.

Ishvara Pranidhana: Whatever it is that you believe in - God, the Universe, the Divine, a higher power - whatever it is, nurture your connection to that. So much so, that you are gifted with an unshakable faith in the process. 

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