Hi everyone. I am new to this site. It is really hard for me to read all of the forums and to write anything, but here goes..... My Dad, Garry Coombs had MS for about 20 years. He was diagnosed when he was 28 and passed away when he was 49.
He passed away about 11 months now and I feel really numb. I don't feel like he is gone. I guess maybe I joined this site to get some closure, or a reality check or something.. I don't know. I do know that writing all of this down to an audience of people who perhaps know what me and my sisters went through is reassuring and comforting to me.
This might be a really long post, so you can read it if you want, or not. I don't mind..
I was about 3 years old when Dad was diagnosed. He took it well and never let any worry show to me and my sister. infact, Dad was the coolest. He would come on all of our school excursions, and be heavily involved in all that we could do. He started walking funny and so he used a shovel as a walking aid to get around. It looked hilarious, and people would stop and stare! I remember going to Hill End on an excursion with him and he packed the trusty old shovel into the bus. hehehe.
As the years passed, I would often become upset because I wondered whether he would ever get better. I asked him many times whether they would find a cure for MS and he assured me with a smile every time and said "ofcourse they will baby. A cure is just around the corner"...
One day I came home from school and he ushered me out the back. He said he had a suprise and I was very excited. He pulled out the ugliest cane walking stick and said "this is my new walking stick, no more shovel! We laughed and I walked around the house proudly with it. At that time in our lives he could still walk, with a heavy limp around.
Soon, the MS Society provided Dad with a manual wheelchair. My sister and I thought it was very cool. We would race Dad around in it, doing burnouts on the kitchen lino and wheelies.
Dad wasn't able to run outside and play with us, or chase us around, but let me assure you, he more than made up for that with the endless hours of conversations, games, jokes and laughter that we shared over the years. We formed an unbreakable bond that I will cherish forever.
When I was 11, My Dad's illness was taking a serious toll on our family. My mum was working 2 jobs to try to pay the bills and my sister and I were trying to help around the house and with Dad as much as we could. We would be up, in the middle of the night trying to help Mum lift Dad onto the toilet, while both of them were screaming at each other. Sometimes Dad would fall on the floor and lay there for hours until my sister and I came home from school to lift him off the floor. Those were really hard times and my mum couldn't take it anymore. She moved away with us and left our Dad to fend for himself! I was too young to stay with him, but in my heart that is what I wanted to do. I knew my Dad would die if he had no one to care for him.
After a week of looking after himself and being very stubborn, he moved into my grandparent's house where he lived for the last 10 years of his life. My sisters and I would visit every second weekend. Slowly but surely, Dad lost control of every part of his body. He became bedridden 24 hours a day. He was in pain all the time. For about 5 years prior to my mum leaving him, Dad used Marijuana as pain relief. He was a heavy user and I believe this might have been part of the reason my mum left him. When he moved to my granparents house, they banned him from using marijuana and made him take paracetamol every 4 hours. Paracetamol every 4 hours for 10 years is not healthy. I would have preferred him smoking. I guess that is not good for you either.
I got married in march 2009. Dad was able to attend my wedding and it was my dream come true. I couldn't have wished for anything more. At that time, Dad was a skeleton. No fat on his body. It was terrible. He couldn't speak as he had lost his voice. I guess that would have been from the build up of fluid on the lungs, as well as the strength that he lost. This was very frustrating for Dad as he loved seeing his daughters and talking to us about our lives and everything that was going on in the news etc.
6 weeks after my wedding, when I was 5 months pregnant, I got a phone call at work. My grandma called to say I better come out to the hospital quick. My heart sank and I began crying immediately. This was about the 20th time Dad had been admitted to hospital. I knew My dad was a fighter and I just couldn't believe that after all the years he had been fighting the disease, this was going to be the end. I raced to the hospital and cried as soon as I saw my poor helpless Dad in the bed. His eyes were sunken and he was breathing so heavily and forced. I kissed him and asked how he was. He looked at me with his sad eyes and said "I want to go home". That broke my heart. I couldn't help him, he was going to die and I couldn't do a thing about it. I said goodbye to my father and thought that this would be the last time I would see him alive. I don't know how I managed to muster the strength to do it, but I did.
The Dr said he wouldn't make it through the night. I waited all night for a phone call. The next day, I called my grandparents to find out if everything was ok. They said he seemed better and the Dr said he could go home. I was confused. How could the Dr say he was going to die one day and then the next tell me he could come home????
That afternoon, I got another call to say that he would be staying in hospital and not coming home. I was angry. How dare they toy with my emotions like this? I had already said goodbye to my dad and told him how much I loved him. However, I didn't feel satisfied. When I said goodbye to him the first time, every one was standing around looking at him and I just wanted a private moment with him. . I decided to go back to the hospital one last time to see him. I walked into his room and sat down. The whole family was there yet again and I felt silly saying a public goodbye. I whispered to him that I would see him again tomorrow. I knew now that I wanted to talk to him in private before he passed away.
5 days passed and I visited him every day. Every night, I said another public goodbye to him. I knew that no one would be around the next day so I planned to visit him one last time. That next day I went to the hospital to find him in his room, alone. Thank god I thought to myself. He was so zonked out on morpheine, but I knew that he could tell I was in the room and he could hear what I was saying.
I sat by his bedside while I watched Who wants to be a millionaire. He was always so good at that show. So I read the questions to him and answered them as best as I could. I knew he would have been laughing at me because I was getting them all wrong. Finally, I conjered up the courage to have that final talk to him without the listening ears of other people. I told him just how much he meant to me, how I would live on to tell his grandson (i was 5 months pregnant with his first grandson) all of the stories of mischeif and mayhem that he used to get into. I would tell my son how brave his grandaddy was and how I was so proud of him. I told Dad that he could let go, and float up to heaven to be reuinited with his family. His grandma and pa who he loved so dearly would be waiting for him. It was the hardest moment of my life, but the most satisfying. The fact that I got to say goodbye to the most important person in my life was very comforting. When I was ready to go home, I kissed him and he tried to move his lips to kiss me on the cheek. I told him to behave himself (meaning in heaven) and that I would be back tomorrow.
I knew that I would be back tomorrow. I also knew that tomorrow, he wouldn't be alive. I was right. The next day, I woke up to a phone call to say that he passed away at 7.31am on the 1st May 2009. I was relieved. I was sad. I didn't know what to feel. I went back to the hospital to see him. I just wanted to see him, free of the disease that robbed my precious daddy of his life. He didn't look as peacefull as I thought he would. Infact. he looked tormented to me. They say when a person passess away they should look peacefull. Then I thought "Why would my Dad look peaceful? He was robbed of his life at the young age of 49 years old". In any case, I kissed him on the forehead and told him that i would teach my baby all about his grandad. I held his soft hand and left the hospital.
I didn't feel very comforted after seeing him at the hospital. I ensured that an open casket was available before the funeral. I am so glad I went to see him. Finally, he looked peaceful. He was no longer in pain, and that was all that mattered.
Multiple Sclerosis is such a horrible disease, that affects people in different ways. My dad experienced the worst of the disease, but I couldn't believe that he fought as long as he did. He was an amazing person, whose legacy will live on. I miss him dearly and just wish things could have been different.
I needed to write this all down, to help my grieving process. It's been 11 months and I still feel like he will be sitting up in his bed waiting for me next time I visit my grandparents. That hurts, because everytime I go to their house, my heart breaks over and over again when I see his empty bed.
Thanks for listening. I hope that a cure is around for people living with MS and remember, be positive no matter what happens! : )