Until there's a cure ... there's care

"MND Victoria provides an incredible service. We had no idea what to do or what would happen to us. Ruth, our MND Victoria Advisor explained everything in a way which allowed us to be in control and make our decisions." Rob Lochhead

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On March 28 this year my partner of 21 years died in my arms. She was 54 years old when diagnosed in June 2016 and given 12 to 18 months to live. It turned out this was overly optimistic as Liz’s disease progressed rapidly and she died just nine months later.

We don’t know how long she’d had MND before the diagnosis but on reflection it was probably longer than we realised. For the last few years the family noticed that Liz never screwed tops on tightly – something we found a bit annoying but which we put down to being “just Liz”. It was early 2016 that Liz noticed how tired she was getting and that she was having difficulty holding tweezers, an integral part of her work as a beautician. A visit to the GP was quickly followed by tests at the Austin Hospital resulting in her MND diagnosis. Although her voice was a bit croaky Liz was still walking and she said to me “I don’t know what they are talking about. I feel fine”. The seriousness and finality of the diagnosis really didn’t register even when the doctor said something along the lines of “if you have something you want to do then do it now”.

Liz first contacted MND Victoria in September and it was soon after that she first connected with Ruth her MND Victoria Advisor. Ruth was absolutely fantastic – if I have to get sick she would be the person I would want batting for me. She helped make life more bearable for Liz just by putting us in touch with various services and, of course, organising for all the equipment that was essential to keeping Liz part of the community.

As Liz’s disease progressed normal day-today activities became very difficult for her. Soon I was helping her shower, making her food, flushing the peg feeding tube - literally everything that until very recently she’d done herself. We had a routine where I would get her showered, take her into the lounge room, dry her hair, then take her out. This took about three hours but at least she could enjoy going in her wheelchair to the shopping centre or for a coffee. I remember how she really enjoyed our lunch in Rosebud while she was still walking.

While I was Liz’s main carer I was not alone. Liz’s sister Margaret was an amazing support to us both, even though her own husband was going through cancer treatment, and she had her own family and work commitments. Margaret would come around after she finished work, bring Liz a meal and stay and visit with her until I came home from work. When I worked at weekends Margaret would come and pick Liz up then take her to her home where she stayed until I could pick her up. Liz’s two daughters Rhiannon and Emma also did what they could but it was such a traumatic and devastating experience for them to see their mother deteriorate so rapidly before their eyes.

At first Liz was embarrassed that she was unable to look after herself, but I told her not to worry, that we would find a solution to any challenge, which we did.

I can honestly say that without the equipment MND Victoria supplied - at no cost to us - Liz would have been very isolated. We had a hoist to transfer her out of bed, an electric bed with pressure mattress, a shower commode, an electric riser chair and of course wheelchairs. Liz’s MND symptoms progressed very quickly but we did manage to go on a cruise in January 2017. It wasn’t quite the dream holiday we’d hoped for because Liz got seasick from the time we left port. MND Victoria had provided us with a wheelchair which was a lifesaver as Liz used it throughout the cruise.

Towards the end of the cruise Liz started to get quite sick, and basically didn’t eat. As she didn’t improve at home I took her to the Austin Hospital and after two days we were told to gather the family as Liz’s condition was so bad. However, Liz did improve and after five weeks in the Austin battling pneumonia, low blood pressure, low sodium and a collapsed lung she was transferred to Calvary Health Care Bethlehem (CHCB) where she stayed for four weeks.

MND Victoria was again invaluable. They got the ball rolling with NDIS registration and worked extremely hard to get Liz NDIS registered. Because her symptoms were rapid every day felt like Liz’s MND symptoms were changing faster than we could get services in place.

Once the NDIS funding had been confirmed, our MND Victoria Advisor worked tirelessly to source agencies to provide workers to be trained in Liz’s care to fulfil Liz’s goal of going home. There’s no way we could have achieved this without the knowledge, expertise, experience and unwavering support of MND Victoria. When you’ve never experienced MND the intricacies of navigating the NDIS and the healthcare system can be overwhelming, especially when you’re exhausted just trying to look after your loved one.

It was now over two months since Liz’s hospitalisation and she was deteriorating quickly. She was struggling with anxiety, using non-invasive ventilation (NIV) constantly, sleeping most of the time, full high care and non verbal. But I knew that she really wanted to come home and thanks to MND Victoria’s equipment and our MND Advisor everything was finally in place for her discharge from CHCB.

On Monday Liz came home. She looked so happy and content. Late Tuesday night while getting Liz comfy in bed I rolled her towards me with my arm underneath her. She looked up at me so peacefully and passed away in my arms. I held her until the ambos arrived. Liz was a strong, warm, caring, spiritual woman. She trusted me to look after her and make decisions about her life. One thing I want to say is that Liz and I fell in love again. I know it sounds strange but Liz became my world; I would do anything for her. I loved looking after her - whatever Liz wanted I did with no hesitation. I will miss her greatly.

Thank you for letting me share Liz’s MND story with you. The nine weeks Liz was in hospital and from the time she was diagnosed with MND were a rollercoaster ride for Liz and the rest of her family and friends. I’m very grateful for the support received from the family and friends who cared for Liz and me but it was the care, support and equipment provided by MND Victoria that enabled Liz to remain living, and dying, at home. As I tell anyone who asks – MND Victoria provides an incredible service without which we would have been overwhelmed. Please consider giving generously to this appeal. It really will make a difference to the life of someone living with MND today.

This story was first published as our 2017 Christmas Appeal

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