Chapter 3: Recognizing your grief

Grief associated with hereditary brain diseases

I've been there
Jim shares about how Huntington's Disease affects his whole family. (3:22)Video transcript
Jim speaks about witnessing the changes as his wife's illness progresses.(3:22)Video transcript
Jim speaks about caring for someone living with Huntington's Disease.(3:22)Video transcript

I wonder if any of us, including my own kids, will inherit this disease. There's always the fear that while you’re supporting somebody, you might be looking at your future.

The kids wondered what they could anticipate with the disease. They had a lot of different emotions knowing that they would have this too. It was also hard for my son who found out he did not carry the gene like his sisters.

Caring about someone who has a hereditary brain disease presents many challenges including the question of intergenerational aspects. Although families are always impacted by a member’s illness, the question of potential hereditary illness can create a sense of being “at risk.” It can also create a sense of uncertainty for new generations to come.

If you are caring for someone with a hereditary disease, you or others in your family may face the possibility of having the illness or an increased risk. Perhaps you have already been the caregiver for someone else in your family or witnessed other family members living with the disease.

The grief that you feel for the person who is ill may be compounded by anticipatory grief you feel about your own health or that of others in your family.

Click on the switch button below to see examples of how you may be grieving.

If you are a childIf you are a parent

You may grieve for your ill parent, for your other parent if they are the caregiver, and for the uncertainty of your future. 

You may grieve for your ill spouse/partner and for the uncertainty of your children’s or grandchildren’s futures.




Additional challenges for parents

If you are a parent who is caring for your spouse, you are dealing with not only your own challenges but those of everyone in your family. You are likely dealing with your children’s stress, anxiety, fears, and questions. If you have grandchildren, your worry and caregiving may extend to include them.

What may help

  • Acknowledge the complexity of your grief and the many losses you are experiencing. You may grieve for the person who is ill, for yourself, and/or for others in your family.
  • Recognize that the person’s illness will impact everyone in your family and require many adjustments over time, particularly if you have children and/or grandchildren.
  • Because of the ways that a hereditary brain disease can affect family members, it’s important to look for support outside your family. Reach out to friends, extended family members, and local resources, such as home or respite care programs.
  • Accept help that is offered, and if you need more, be specific about it. For example, you might ask someone to do grocery shopping, cook a meal, or take you out to a movie or for a walk.
  • If you are a parent, remember that you and your children may need additional support from an experienced grief counsellor who can attend to each person’s needs.
  • A genetic counsellor can provide specialized information and support.

For additional information on supporting children, see Chapter 6 - Supporting children in their grief.