My Dad died in November 2010 from MND. He had been diagnosed in December 2006 and was relieved that there was finally a reason for him feeling the way he did.
Dad’s MND seemed to be different as it also affected his brain particularly his frontal lobe that controlled his social skills. He would come out with some strange things and some real shockers however we came to accept it but a lot of people didn’t. Because he looked normal people just thought he was “weird”.
Dad turned down all types of help including splints for his fingers, a peg to feed him and wet room and bed downstairs. The MND Association was really helpful and offered us so much however Dad didn’t really want any of it. He was worried that people would stare at him or treat him differently.
From January he could no longer use his hands, his speech started to go and he was eating less. We could see his rib cage which hadn’t been seen for years!!
At the beginning of October Dad stopped eating and we realised that the end was coming. By the beginning of November he was really weak. Although Mum was coping I didn’t want her to go through this on her own so I travelled home. When I got there I was shocked at how much he had changed in two weeks. Whenever I used to think about it I thought of it as the reverse of growing up as a child i.e. you get bigger and stronger, Dad was getting smaller and weaker.
By this point he hadn’t eaten for six weeks. On the Friday, Dad was drifting in and out of consciousness. He went to sleep that night and my Mum stayed with him. We both expected him to go. 5am came and my Mum came into my room, I thought that was it but he was still going, but only just. We didn’t want him to suffer and by this point his breathing was very low. We called the hospice nurses who said they would be there at 6am. We went back up to my Dad and had a cup of tea and sat with him. At around 5.45am Dad stopped breathing.
In the weeks afterwards there was a huge weight lifted. Although I was sad my Dad had died I had felt I had two dads in my life. There was my Dad who died in 2001 who was happy, outgoing, sociable and strong and then there was my other Dad, my physical dad who died, who was depressed, weak and had MND. I loved them both the same but didn’t want him to suffer anymore. Dad got what he wanted, no intervention, no hospitals and he died in his own bed which was always his wish.
One thing that always bothered me though were his friends. Many of them deserted my Dad in his time of need. At first everyone was offering to help but many didn’t follow through. It is hard spending time with someone that had a disability or acts “oddly” however it can be extremely hurtful to the person and their family when something like this happens. Dad would never admit it but I know it hurt him a lot. We were just lucky that we have such a great family.
If I could offer one piece of advice it would be to do as much as you can for your loved one as time is precious.