Chapter 2: Living with illness and grief

When you care about someone living with illness

Although she is the one living with the illness, we are all affected by it too. All of our lives have changed since the diagnosis.

It has felt like one loss after the other. There is a lot of grief that comes with this illness. Sometimes it feels like we are just reacting to the next thing that has been taken away. It is heartbreaking.

When someone you care about has been diagnosed a progressive neurological illness, both of your lives change – and will keep changing. As the person’s health changes and their mental or physical abilities are affected, they may grieve with each loss. You may also find yourself grieving as the illness progresses. Sometimes changes can be subtle over time and may not be easily recognized by you or others.

The losses that you may experience will be connected to your particular and personal circumstances. These include the nature and progression of the person’s disease, your relationship with each other, your connection with others, and your access to resources and support. They may also include practical factors, such as your financial situation. These losses are real, and so is the grief that accompanies them. Click below to see examples of the losses that may be experienced both by the person who is ill and by you, as a caregiver.

Progressive diseases can last for many years. Some losses may have already occurred; you may be witnessing others now; and there may be some losses that haven’t happened but that you have thought about or expect to happen in the future.

It can be difficult to grieve losses that you haven’t recognized or named. Identifying your losses can help you find ways to respond to your grief, which can be a constant yet changing companion during illness and caregiving.

What may help

  • Identify and name any losses that you have experienced, are experiencing, or think you might experience in the future.
  • Think about how changes in your life are affecting you. For example, have you had to give up your home, your personal interests, or plans for your future?
  • Recognize the ways that your identity and role may have changed. For example, are you now parenting a parent? Are you feeling more like a caregiver than a spouse? Are you having to take responsibility for tasks that the person once did?