Contributed by Ashley Perera

I am sharing my experience as a main care partner with the aim of calling for increased emotional support.

My Story

  • I was a fulltime carer for my wife, Nelupa.
  • She was a nurse herself and was diagnosed with a neuro degenerative disease: Multiple Systems Atrophy.
  • She lived with it for 3 years gradually getting worse.
  • Her main disability was loss of balance, recurring UTIs and breathing difficulties.
  • She was fit and well otherwise. But went to sleep one night and never woke up.
  • After she passed away, I realized that at times had forgotten to be the loving partner who I was all my life.
  • This realization was the hardest to cope with.
  • Therefore, my hope is that with my experience you will be able to help others who are caring for their loved ones.

Being a Carer

At the very outset I acknowledge that:

  • There is an excellent support network that provides medical and physical support.
  • There are lots of resources largely focused on the patient.

But…

  • Becoming a carer for a family member is no ordinary task. It needs emotional preparation.
  • There is no “emotional support system” to prepare and support the carer through what is ahead.
  • This needs to be recognized and improved.

These emotional challenges are particularly applicable, where caring takes places at home for a loved one.

The expected outcome is cherished moments without room for any guilt and/or remorse once the loved one has passed away.

Emotional Support

It simply means preparing someone emotionally to be the fulltime carer for a family member and supporting him/her to continue to be a loving carer/spouse/partner.

A key part of this is creating awareness, recognition, acceptance and education.

Key elements in education:

  • Mindfulness
  • Patience
  • Empathy
  • And the importance of self care

Practical advice to share with carer:

  • Spending as much time as possible together.
  • Taking time to reminisce memories, photos, letters, greeting cards, etc.
  • To do it now, not when it is convenient for you. Time does not wait for you!
  • If you get angry, get that behind you as soon as possible.
  • Remind yourself of all the positive things that you have despite the situation.

Practical advice to share with carer:

  • Take time to reflect on the activities ahead at the start and end of the day.
  • Keep a diary, journal in what ever way that is easy for you.
    • However brief; write down key personal moments and feelings – moments of love, joy, compassion, anger, omissions, impatience, empathy, etc,
  • Writing these down daily helps you to reflect and avoid negative thoughts, actions.
  • Take pictures regularly, everyday if possible. Record videos with voice as and when you can.

These will make your memories happy and keep them alive once your loved one is gone…

These are things that I wish, I was aware of and equipped with to manage my time caring for my wife.

This would have provided more peace of mind coping with my grief.

I believe additional emotional support will help future care partners in their process of taking care of their loved ones and in the process of grief.