My first memory was being 2 years old and paddling in the sea, on hastings beach with my Dad. A large wave came in and swept me off my feet. When I popped up from the wave I said to my dad ‘wow wee that was good daddy, can we do that again’! I treasure this memory with all my heart. You see my Dad has huntington’s disease. He was diagnosed 18 years ago when I was 13. My dad was a strong tough guy with a generous heart who loved formula one, flying aeroplanes and who always had time for his children.
Huntington’s disease has robbed him of his mobility, his speech, his laugh, his ability to swollow and his memories.
Dad spends his days listening to music, playing bingo, having therapy and watching his favourite sitcoms.
He is 55 years old and is like an elderly gent. I often forget what a strong father figure he once was. I never really dwell on how his life could have been and I never let it get to me. I know we don’t have long and that is why I was so overjoyed that he saw me get married last summer.
That was until yesterday. Yesterday I became scared.
Yesterday I went for a visit to the lovely residental home where Dad lives. Yesterday he was upset. He was crying and for the first time I felt scared. He was in pain and I couldn’t do anything to help. I felt totally helpless. I felt like I let him down.
It turned out Dad has a kidney infection.
I am usually so strong but all these questions are racing around my head and all I want is for him to be happy and comfortable till the end. I am scared there will be a time where he will be in pain or scared and I can’t help him or reassure him.
For now I have to be grateful for the exchange of smiles we sometimes have. For when he holds my hand for reassurance and his eyes light up when I bring chocolate. I hope my fears and tears pass and he knows how much I love him and miss him already. Memories are precious and they get me through the darker scarier days.
Posted with WordPress for BlackBerry.