Fight or surrender

So many times in my life I feel like I have been faced with the dilemma of whether to keep fighting for what feels right or to surrender to what is. I have been confronted with endless scenarios where advocating for peoples rights and fighting injustice just feels like the right thing to do. But I have also been confronted with many situations where this fighting has eventually worn me out. Times where I feel at the end of my ability to have any power and I have to surrender. 

Fighting systems, people, injustices feels so deeply important but can get so very exhausting.  Especially when it comes to speaking up for the people who's voices are not heard or cared about. As then I have to speak louder, clearer and for much longer for people listen. 

So this is one of those stories where I would fight and fight, but then had to choose surrender over and over to survive. 

💜 

My mum went into a nursing home when she was 46 years old with Huntingtons Disease. I'd just like you to imagine that for a moment. Imagine that is you. You are 46 years old and you are going to spend the rest of your life in a nursing home with people twice your age. You will no longer have your freedoms to choose your day to day activities, what you eat or where you will go. You will be dependant on others to care for your every need. And this is your future for the next 10 years or so. Imagine. All because you inherited a gene. 

We always knew this would be a part of my mum's future but I don't think any of us really knew it would come as quickly as it did. I was 21 at the time with 2 kids. Caring for her needs was so complex. She really needed a team of people to care for her declining physical, mental and emotional capacities. But there was not one part of me that wanted her to go into a nursing home. I still wish deep in my heart this never happened. But I eventually had to surrender to this as our only option.    

Leading up to this time, I would take care of my mum once a week for my dad, to give him a break. She would come and stay over and we would go to playgroup together. Going to playgroup at the best of times as a young mum was challenging. Feeling the stigma and shame of being a young parent was enough to manage. But going to playgroup with my little kids and my disabled mum was a juggling act! My mums physical chorea movements where very visibly evident. Her arms would be waving around as she walked into the play group and I would be hoping she wasn't going to hit anyone or knock anyone over, as I juggled to get my kids inside safely. 

At this stage in life it felt like everything was all about my mum and her needs, which at times was incredibly frustrating. She looked very much like a drunk woman, which sadly would also feel incredibly embarrassing and exposing. When all i wanted to do at this age was pretty much blend into society and not be noticed. Well that was never going to happen with HD on the scene! 

Many people over the years have stopped me and asked me what drugs my mum is on. I would cringe every time and explain to them that she had a disease. I would explain the nature of the disease and what it's doing to her in the hope for understanding. 

As time went on things were getting harder and harder for my dad to care for her. I was so torn. I wanted her to be happy and I wanted her to have the best. But then I also wanted my freedom and I wanted my own life. Guilt wreaked havoc on me during this time. The responsibility of caretaking her and my kids felt all consuming. I never felt I was doing enough.. But often doing too much. 

She would endlessly call me. I'd get 20 phone calls a day with problems and issues she was having and it was frustrating. I'd often get my husband to take the call and tell her I'm busy. My patients would run low.  Her obsessive behaviors were becoming  more and more difficult to manage. I felt like I was emotionally in a washing machine! 

I remember at one stage I really just wanted to move away, go to University and leave all of this behind. My brothers had moved away to go to University and I wished I could do that.  But I felt so responsible. I felt that I had to stay and help my dad look after her. I also had my kids and partner, so I couldn't leave. So I helped my dad and created my own family. A part of me was OK with that. Another part of me had to lay dormant. 

The day we decided to place my mum in a nursing home was one of the worst days of my life. I wanted to care for my mum at home so much, but reality was it was going to be a long term caring role. Not just a few years. Maybe 10 years or more. I battled this decision and day so much.

The HD Social worker was at my house and I was crying and yelling that it wasn't fair. I was 21 years old and my mum was going into a nursing home at 46? Something about this scene was just wrong, wrong, wrong. I was so mad and upset. Surely there was something else that could be done and that people could help us. Surely there were houses for young people with disabilities! How on earth was she going to survive living with 80 and 90 year olds. It was a horrendous thought. I was so angry at the disease and the lack of supports available. I felt so much shame at our inability to give her the absolute best. She already had lost so much now she was going to lose living in her own home? I couldn't believe a nursing home is what we were going to give her for the next 10 years.

But as I raged, reality was this was the best we had.

My mum had already accepted this. She was so calm this day. Looking back I think she really didn't want anyone to be upset. What was most important to her was that she was close to her family and that we would all visit her. She loved her family so much and all she wanted to do was continue to be apart of that.  

So that is what we did. We moved her into a nursing home and for the next 12 years I would visit her there. 

The nursing home provided care for her basic needs. They provided food, shelter and physical care. My mum wasn't into bingo or line dancing that's for sure. She didn't want to be a part of any of that. She was too hard for them to take on outings, so she didn't fit the criteria for that. But they cared for her practical needs and we cared for her social and emotional needs.  This new care arrangement allowed us to continue to love her, without having the responsibility for every aspect of her care. 

So every Tuesday my husband would meet me at the nursing home, after I finished work. We would do our change over of the kids in my mums nursing home room. He would then go to work and do night shift and I would hang out with my mum.  Over the years our 2 kids turned into 4 kids and the room filled up with more and more babies toddlers and kids. My husband and I would swap our daily stories in this room, swap parenting roles, I would feed my mum ice-cream and we would share a tonne of love, laughter, hugs and tears. 

Visits were both beautiful and horrendous. My mums love, joy, connection with my kids was always beautiful. My goal every visit was to make her laugh. And she always would.

However every few months a new decline would take place and a new conversation with staff would be needed. Conversatoins about how she could no longer toilet or shower herself, to conversations about how she would now needs sanitary pads, new medications, food would now be pureed to a new texture, how difficult her behavior was etc etc etc.

So I would complete my goal of making mum laugh, I would have a conversation with the staff about her care and then more often than not, I would leave the nursing home crying. 

Sometimes mum held onto her acceptance of the nursing home. At other times she just hated it. Sometimes she was cooperative, other times she was angry hitting people and crying that she wanted to leave. She went through a stage where she was violent towards the other residence and she desperately hated living there. Everytime we would take her out for a visit she would throw herself on the ground and refuse to go back. She would fight and fight to stay home. These were heartbreaking fighting days. 

As her brain was being damaged by her illness she lost her ability to express herself verbally and she found new creative ways to get her needs met. Which often involved a floor. The nursing home was in no way equipped to deal with her needs. They didn't have the knowledge or training to care for someone with Huntington's disease. They were trained and equipped to deal with elderly people.

During this period mums behavior became so difficult they asked her to leave. I'm not really sure how you manage to get kicked out of a nursing home, but mum did.

I fought so hard against this. I was so angry that someone with a disability could be told they are too hard. I wrote letters, had meetings, cried, yelled, but none of it made any different. She was moved to Sydney, 6 hours away from us.

She was sent to a facility that was set up to care specifically for people with Huntingtons Disease. I think mum would have been about 52 at this stage and she was now one of the oldest people in this care home. I walked into her new home on my first visit to this center and I was shocked. Everyone in the room had HD. About 20 residence all looked like my mum. Peoples arms were waving around, there were some people laying on the floor, throwing food, wearing helmets, sitting in wheel chairs and trying to talk. 

It felt like a relief. I felt like we were home.

For years I had sat in a nursing home feeling different and that we didn't belong. I often felt like we were a nuisance and my mum was too hard. But here, this was exactly where she belonged. With people who knew how to care for her. With people her age. With other people with HD

The staff in this facility knew how to manage my mums behaviors, what medication she should be on, how to help her with routine. Funnily she was not violent anymore. I always felt like I had to do so much educating of doctors and nurses around how to care for her .. but here I didn't need to do a thing. Except eat the ice-cream.

Mum stayed in this facility for a few months whilst they changed her medication and stabilized her to a point that hopefully the nursing home would take her back. She went on outings, they had a fabulous coffee shop and she had fun. She was incredibly brave but she missed her family and wanted to come back.  

Over the weeks on her new medication she lost her ability to walk. This was one of the needs that the nursing home had for them to be able to care for her. They agreed she could move back to the nursing home, in a wheel chair, so she moved back in. 

As tragic as this was (and again I kicked and screamed at how wrong this was!) there was also some relief that being in a wheel chair now clearly said "this woman has a disability" which changed the way people looked at her. She was no longer a potential drug addict, or drunk, she was clearly unwell and sick. And the wheel chair spoke that for us.

Which perhaps allowed us all to surrender... again.

💜 

"Surrender is what happens when you come to the end of your power. Surrender is what happens when you have searched to the bottom of your soul and found out this truth — which is that you really can't do this thing anymore. Surrender is what happens when you don't have any more ideas for how to fix everything. Surrender is what happens when none of your survival strategies work anymore — and your playbook is out of pages. Surrender is what happens when you turn it all over to God. You release your grip on the thing. You stop white-knucking it. You stop pretending things are great when things are actually horrible. You stop putting on a fake face, or glossing over the problem, or lying. You face the truth that you are not the most powerful force in the universe. You turn it over to fate. You exhale, and let go. - Elizabeth Gilbert