MD caregiver? How to deal with guilt

If you're caring for someone with muscular dystrophy (MD), you may sometimes experience feelings of guilt.

Caregiver guilt is a common problem. When you are caring for a loved one, however much you do for them, it may never seem enough. Feelings of frustration and resentment may affect the way you behave towards the person in your care – and this can further add to your guilt. This guilt can lead you to make sacrifices and push yourself harder to meet their needs.

However, guilt can be very destructive, isolating people and filling them with shame. It is not helpful for you or for the person in your care.

In the case of a genetic disease such as MD, there is an extra element to the guilt. While the disease is not their fault, parents often blame themselves – or each other – for a child's illness. In Duchenne, for example, a mother may blame herself for carrying the gene and passing it to her son. It’s important for parents of an affected child to support each other and communicate their feelings.

Guilt can make carers devote all their attention to the sick person, sometimes at the expense of others. This can affect marriages and other close relationships. Siblings of an affected child may also start to feel guilty – for being healthy, for not helping, for feeling ashamed or jealous. Siblings can help with caregiving, and often take on this role later in life; while they are young, however, parents should make sure they don’t feel burdened with guilt or responsibility. Professional family counselling may be useful.

Some suggestions for handling guilt feelings:

• Don’t be afraid to acknowledge negative feelings, like loneliness, fatigue or frustration.
• Find ways to improve the quality of time you spend with the person you care for, even if you can’t spend very much. Make it fun and stimulating.
• Set clear limits on how much you can do. If these limits are understood by all involved, you’ll feel better about not being able to do more.
• Make a list of tasks, and make sure the most important things get done. Then you can relax about getting through relatively low-priority items.
• Outsiders may offer advice or criticism, but only you really know your situation and what is possible or appropriate. Encourage people around you to focus on the positive.

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