Tag Archives: motor neurone disease

Carers – A Very Special Kind Of Person

Hi my name is Marilyn and I would like to share with you an experience that changed my life forever. Going back can open old wounds that I have been trying to heal for the last six years after caring for my dear husband who eventually died of Motor Neurone Disease. A progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.

SOUL MATES

Ten years ago I left and divorced my first husband, after 18 years in an alcoholic marriage. Six months after leaving, I met a man whose name was David. He made my heart flutter, an experience I hadn’t felt for a long time. There was an attraction, but as we were both coming out of a long dysfunctional relationship, we took it slowly. David and I come from two different worlds, him from sex, drugs and rock and roll, myself from the picket fence in the suburbs.

This man had arms like Popeye from working on trawlers, and riding motorbikes for the last 17 years. He has a voice that was as deep as the ocean, long blond curly hair and was very romantic. I remember one day in October, after going for my first bike ride, sitting and watching the sunset over the water holding his hand. I Felt a sensation run up my arm and knew that this man was special. I knew that we would be together as one. It brought me to tears.

MOTOR NEURONE DISEASE DIAGNOSIS

We spent the next 12 months together riding around on the bike having fun for the first time in a long time. We spent a lot of special time together, not always smooth sailing. We worked through a lot of obstacles like most couples. Our love grew strong. It was in August 1994 that our world changed forever. David had been acting a little strange. He would stagger and slur his words seeming to be drunk, which was not normal. David finally told me he had been diagnosed with Motor Neurone Disease (MND) and that he would die. End of sentence, end of everything I had ever dreamed of, end of my life as well. David said that he would have rather ridden his bike off a cliff than have to tell me. Our world collapsed.

ACCEPTANCE

When facing death there is shock, denial, disbelief, anger. Feelings and emotions were thrown all over the place. I think I spent a long time in disbelief. How could this be happening to the man I loved more than life itself. He who had done no harm to anyone else was going to die. Not only die but the road to that death was not going to be pretty. Not that any disease is, but motor neurone disease is not a nice way to die. Motor Neurone Disease is a muscle wasting disease, and in the end you are completely paralyzed as the body’s muscles simply stop working, the mind remains unaffected. We were told it could take 3 years, could take longer or shorter, to go and do what you want now before it takes over. That November I moved in to help care for him.

LAST WISHES

One of David’s dreams was to own his own boat so he could go sailing off into the sunset. We flew to Tasmania and found his boat. With the help of a couple of mates he sailed and motored the boat back to Queensland. David never had a lot of luck when it came to motors, so it was a long journey home. It was his last trip but he had a story to tell and lived his dream, that was the main thing. It was around this time he had to stop riding his beloved 1981 Moto Guzzi 1100.

Motor neurone disease progressed very quickly for David. I know with some people it can take a long time to make a move but with us it seemed every day was different. Before we knew it his beautiful voice had gone. His mobility became increasingly more difficult. Our life centered on renovating bathrooms, moving furniture, getting aids for disabled and buying equipment. We would just get used to living a certain way then would have to change as his motor neurone disease advanced.

TOGETHER AS ONE

My life became very focused upon David and his needs. I became his voice, his hands and legs. I also had 3 teenage children from my first marriage to consider. They lived with their father but I still had to be mother for them. Additionally David’s stepdaughter lived with us. It wore me out. My world had changed. I became a carer. We tried to continue our relationship as if everything was normal. For me that was difficult. I had to wear so many different faces and not allow the carer to overcome the lover in me. I lost myself to this insidious disease.

FULLFILING DREAMS OF TRAVEL

David wanted to go back to Fiji, he had lived there as a teenager when his father worked for Qantas. In January 1996 we flew to Fiji and spent a week cruising the blue lagoons and driving around north Fiji. It was like our honeymoon. In May we chose to be married. Three days later we left for England and the Isle of Man for the TT motorcycle races, another one of David’s long held dreams. We spent five weeks in England and Holland. I spent those five weeks pushing him in his wheelchair all around the country side. David came back excited that he had finally got to the Isle of Man, a place he had dreamed of for 17 years. I came back honored for the experience but totally exhausted. For the next 18 months his motor neurone disease progressed to the extent of him only being able to move his eyelids to communicate.

DAVID CHOSE WHEN HE’D HAD ENOUGH

On February 24th 1998 David died at home in bed beside me, just as he had wished. He was at peace. How dare the sun come up the next day? How was I supposed to go on? How was I supposed to live without him? My body felt like my heart and soul had been ripped out I was left with this huge open wound. I had spent the last 4 years loving a man who was my other half, my soul mate, and now he was gone. I was left with only memories. David and I had put everything into our relationship, probably more than anyone who had been married 50 years. We only had 18 months, and it was full on.

LETTING GO TO FIND MYSELF

For me to be carer and lover, friend and wife was bloody hard. As I mentioned earlier I had many faces to wear. Sometimes I didn’t even know where I ended and David’s voice, hands, legs began as I had become a part of him. I knew what it was he was saying, and had translate it to other people. I had to get inside him to understand how it was for him. Many times loosing myself. It was all so consuming, to be the carer doing things for him 24 hours 7 days a week. It wore me out. The carer in me would take over and I would be too tired to be the lover. There were times when I felt he was just another job I had to do.

It has taken me 5 years to start to find myself again. David found it hard to look at himself as a sexual being once the motor neurone disease took over. He called himself a freak. To me he was the same person, nothing had changed. I had to change my attitude towards “my duties”. There was nothing more I could give him than myself. How much longer would I be able to make love to him, what more could a wife give to her husband than herself, to be together as one, one spirit.

COPING TODAY

I went back to work as a personal carer for a nursing service and then a respite center for the disabled. I had and still do have a lot of empathy for the dying and disabled. It can be an asset and a liability. Finally I burnout through not dealing with my anger and grief at the time. I busied myself so much that I didn’t have to feel. I suppressed my anger which lead me to depression. My digestive system stopped. Physically I couldn’t do anything anymore. It took me 12 months to realise this. Now I take it slowly one day at a time.

Looking back, I could have done things a lot of things differently. Crying at the funeral could have helped. Getting angry could have helped. Speaking up for myself and to support groups could have helped. So now six years later I would not have to deal with this before my life can take off again. The pain is not as raw anymore, but I still grieve. I still miss him, I always will, my dear David.

Yours Truly
Carer & Wife
Marilyn