Chapter 2: Living with illness and grief

Responding to your grief

The grief expert says
Betty Anderson, grief counsellor, speaks about how the changes of dementia are also losses that need to be grieved.(3:22)Video transcript
Betty Anderson, grief counsellor, speaks about ways that people name their grief.(3:22)Video transcript

Grief has become a constant companion to me over these years. It’s natural, and I’ve learned ways to carry my grief that work for me.

I chat online through social media with a few people who are also caregiving for their partners. It’s been helpful to connect with others who understand. I don’t have to explain my grief to them – they get it. I’m so glad to have that extra support.

Regardless of the illness, you will likely experience some of the thoughts and feelings already outlined. It can be tempting to try to lock away your grief, but grief needs to be recognized, acknowledged, and given some space. As much as possible, allow yourself to feel whatever emotions come up for you. This can seem challenging or impossible when you are already so busy and preoccupied with caregiving.

It can be heartbreaking to watch someone’s disease progress and to know that you cannot change it. Finding ways to respond to your grief while you are caregiving is important for your health and well-being, not only in the present, but also in the future. After the person has died, you’ll likely face new challenges and waves of grief. The grieving that you do now won’t prevent that, but in coming to know yourself better, you may develop skills that will help you later in your grief.

What may help

  • Acknowledge and make room for difficult feelings. Expect these to reappear time and again as the person’s disease progresses. Seek professional support if needed.
  • Regularly set aside time to reflect and share your experiences through a private journal, social media, a community support group, a supportive friend, etc.
  • Learn your limits and ask for help when you can. To help others support you, be specific when you ask for help: “Can you please go pick up some milk?”
  • Consider areas in your life where you may need some support, and welcome the help of those who are wanting to care for you.
  • Maintain or pursue even casual connections within your social network of friends and family. Even contact with others through social media can help you feel a little more supported.
  • Develop flexibility so that you can adapt to changes as they happen. This might mean sharing caregiving duties, learning tasks previously done by the ill person, or finding new ways to communicate and relate to the person.