Living – while your dearly loved one is dying

Just a few weeks ago when my father was dying, I dropped my kids off to school and before I went to his bedside – I went for a snorkel.

It felt incongruous that in the last few days of his life I would choose to play.

But I did and I am glad I did.

Yet while I did, a part of me kept asking:

Is it okay to keep participating in life while your dearly loved one is dying?

I remembered that I had dwelled on this question before in similar circumstances.

Five years ago, (together with nurses, family and dear friends) I cared for, supported and watched my late husband, Mick, die from brain cancer.

It was a gradual process over several weeks.  Mick lost mobility, his speaking and communication ceased, he became very hard to rouse and he seemed to sleep twenty four hours a day. We had moments when we thought he only had hours left. But then hours turned back into days and then weeks.

When we first realised that Mick was reaching the end of his life and needed bedside care, I realised that I could not sit beside him constantly because I had two young children under five to look after and support. I wanted to be the wife that sits with her husband for every moment until the end – but I also wanted to be a present mother providing love, stability and routine.

I handed over my role as “primary carer and advocate” for my husband to my in laws and friends.

It was a heartbreaking decision but I knew that I could not do it all. I was grateful that I had a loving family and friends willing and able to share the load and be present with their love.

There was a lot of tension in our house as we scrambled to organise palliative home nursing care, a hospital bed and equipment. The kids and I needed some light relief.  So I took the kids for an outing to the zoo and then for a sleepover at my parents while Mick’s caring team established some order at home.

It felt odd and incongruous not to be present with Mick. Yet it also occurred to me that I had felt similar conflicted feelings on many occasions – ever since Mick was diagnosed with terminal brain cancer. Although we knew that Mick’s time was limited we had chosen to keep participating in life as “normally” and as best we could with our children, friends and fitness as our priority.

I kept this in mind over the ensuing weeks as I took the kids to pre-school and on outings to the playground. I went to yoga, tried to nap and took quick breaks with friends for a coffee. I kept reminding myself that although Mick was dying, it was important to take each moment to nourish my body and spirit and my children’s spirits. I felt that although he couldn’t communicate, somehow Mick understood.  That in continuing to participate in life and by caring for myself and our kids, I was honouring him.

And so a few weeks ago, as I snorkelled, I thought of my father who was dying – in the final stages of Alzheimers disease (also a gradual process, losing mobility and seeming to be in a permanent state of sleep). I compared the circumstances to my experience five years ago, and I concluded that

It is not only okay to keep participating in life when a dearly loved one is dying – it is essential. 

I thought of what my father would have said if he had been able to communicate and I think he would have said something along the lines of this:

“My dear daughter. If there is any wisdom to have come from the loss of Mick at such a young age when your children were so young – it is to learn that life goes on and so must you. The sun will keep rising. The cycles of nature that surround us, remind us of change and to continue on. You too must continue on.  You must be present for and care for your young children. My grandchildren. Look after yourself. And your mother. In my last few days in this life, come and be with me when you can, but rest, complete the chores that need to be done, look after the kids and also find time to feel the elements. I understand and I love you.”

Dad introduced me to the magical world under the sea and the wonders of snorkelling. If he had been able to join me – he would have been in raptures at all the varieties of colourful sea life that I saw that morning. I remembered the father that I loved and inspired me. The larger than life father who loved outdoors adventures. The father who I have recently struggled to remember as I watched him fade and change as the Alzheimers  disease progressed.

After the snorkel, I went straight to be with Dad and also Mum, who was maintaining the bedside vigil. I was glad that I had snorkelled. I felt strengthened and a little more connected. I was a little clearer. More grounded to support Mum. A little closer to  acceptance that my father was very close to the end of his life.