Music is helping to keep my memories of my dad alive

“See you in heaven one day” is a line from one of my dad’s all-time favorite songs, which I have recently been revisiting. 

By 2020, my dad had been in nursing homes for almost six years, suffering from late-stage Huntington’s disease. He’d been having infections and been dropping weight for some time. He was eating and drinking less and less. I feared the worst.

Dad was diagnosed with Huntington’s disease when he was 57. As a family we cared for him, but the disease progressed fairly rapidly. Around two years later we needed support from Graham, a wonderful personal assistant. As his needs increased further we enlisted the help of a care agency. Just over five years later, he needed to move into the nursing home, due to a severe deterioration with his ability to swallow.

In March, the prime minister called for an official lockdown to reduce the spread of COVID-19. People were told to stay home. All nonessential shops, hairdressers, hotels, pubs, and restaurants closed. Schools only opened for children of key workers or for those with special educational needs. Hospital appointments that weren’t urgent were canceled. All care homes closed to visitors.  Dad couldn’t speak any longer on the phone and the staff had little spare time to do video calls for all the residents.  

By May, Dad had pneumonia. He was weak and malnourished from the lack of food. COVID-19 couldn’t be ruled out as the cause of his infection. I was asked if I wanted him taken to the hospital, where he’d only get short-term relief. I said he should remain at the nursing home and we were told we could visit him in his last days.

We were required to bring a change of clothes and wear full personal protective equipment (PPE) that consisted of surgical gloves, apron, mask and visor. When we left, we had to change our clothes, throw away our PPE, and shower and wash our clothes when we got home. This would limit the risk of spreading COVID-19 to our families or bringing it into the nursing home.

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Preparing to say goodbye

I hadn’t seen dad for two and a half months at this point. The nursing home tried to prepare me for how much weight he had lost and how different he was going to look. I was shocked and devastated when I saw him. We desperately wanted to hug each other, but it wasn’t allowed. The risk of spreading COVID-19 made it much too dangerous.

I bathed Dad’s head with a flannel, moistened his lips, and talked to him. I was only allowed to hold his hands with surgical gloves on and I wasn’t allowed to hug or kiss him. I played him video messages from our family and friends, who sent general updates and chat. They were mostly saying their goodbyes. We took phone calls from family and friends. I tried to explain to him about COVID-19 and the lockdown. I believe he understood. We listened to music, watched TV, and watched the pandemic unfolding on the news. 

The staff were amazing, despite the heat, the PPE, the round-the-clock care, the danger to themselves and their families, and the enormity of working during a global pandemic. They kept me fed and gave me a comfortable place to sleep. They were amazed by how strong Dad was. They told me I was brave, but I certainly didn’t feel it.  

I told Dad what a brilliant dad and grandad he was. He tried to respond, but couldn’t quite form the words he wanted to say.  

As he took his last breaths, I told him I loved him. I stayed with him for two hours. Two magpies flew around outside his window, the first time I had seen them all week. Leaving the room was hard; I didn’t want him to be in there alone.   

After Dad died, my brother received a positive test result for Huntington’s disease at age 42. I have been fortunate to receive a negative test result, which in turn means my children, and subsequent generations, won’t inherit the condition.

I am so grateful for the time I had with my dad. And I am hoping he will be there, waiting for me in heaven. But for now, I’ll keep playing our music, keeping those memories of him alive. 

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.