We didn’t prepare for how long it was going to be. We were so busy and tired.

The primary caregiver needs as much care as the individual who is ill, in terms of counselling, rest, and opportunities to socialize outside of the struggles of home life.

Both grief and caregiving take a lot of energy. With some illnesses, there are heavy physical demands as the person’s condition deteriorates. With others, there is a heavy emotional toll as the person’s mental abilities fail. Regardless of the disease or its progression, the losses and grief are ongoing.

There may well be other stressors in your life, such as work, school, or raising children. If you are a parent caring for a spouse/partner with a hereditary disease, demands on your caregiving will multiply as you deal with your children’s stress and worry.

As difficult as it may be, it’s important to develop strategies that will see you through periods when time and energy seem especially scarce. While small things won’t be a “total fix,” you may find they can make a difference.

What may help

• Recognize that your caregiving means a loss of time and energy for you.

• Acknowledge difficulties and that you’re doing the best that you can.

• Set priorities: Do what needs to be done and put what you can “on hold.”

• Get as much rest as you can: Take short naps. Take advantage of any respite care that is available through formal supports, such as an adult day program, bath program, respite bed, or companion care.

• Set limits: At times when you have help, let the helper know that you are not available unless there’s a genuine emergency.

• Eat and exercise as regularly as you can. This might mean small but healthy snacks and short periods of light exercise.

• Ask family or friends for help: Be as specific as you can about what you need (e.g., a household chore, picking up or bringing a meal, taking your kids out).

• Seek out whatever supports are available to you in your community (e.g., individual or family counselling, home care, peer group support, respite care).

• Set realistic expectations of others and yourself: Look for what is possible, and recognize that there may not be a perfect solution to the challenges you face.