Most chronic diseases affect the whole family. When a man with Parkinson's can no longer drive, his partner must take over that task. When a woman with MS can no longer work, will her Social Security disability be enough to support her and her children? When a child has epilepsy, do the other children receive as much attention as they did before the parents were consumed by the needs of the sibling with seizures? Families must adapt to "the new normal." Most do so beautifully, lovingly and courageously.
But just because a chronic condition enters a family, the relationships don't miraculously change. Problems in a marriage aren't cured by the addition of a new stressor. People's styles of interaction don't improve with the addition of illness. So, sometimes when we meet a patient in clinic and think, "her husband should be more supportive" or "that mom shouldn't be so controlling," we just don't know the back story.
I run a number of support groups. Three are for people with Parkinson's with or without their partners — one for people with essential tremor, one for people with autonomic disorders, again a mixed group; and one is for women with husbands who have Parkinson's or a "parkinsonism" which is a disease that starts out looking like Parkinson's but is much more challenging because there is no treatment and the disease progresses more rapidly with the addition of many more symptoms than classic PD.
It is in that group that I began to identify the fact that caregiving can be its own condition. I see caregivers who are so enmeshed with the husband and his disease that it's their only focus. They identify themselves as the caregiver of a person with _______(fill in the blank.) Often they are angry. They believe no one can care for their husband the way they do. They answer questions asked of the husband. They forget that their husbands are still the men they were – with personal interests, and unique experiences, and a lifetime of work and hobbies, thoughts and values and usually the ability to answer questions albeit more slowly. This approach "de-values" the husband. It disempowers the person with an illness.
Of course the emphasis of a caregiver support group is to encourage self-care and teach tools for stress-reduction and relaxation to the caregiver. There is an educational component and sharing. But I find myself coming away dissatisfied because we don't really address the "mad caregiver" syndrome in a healthy way. My gut wants me to say, "I see you are angry. Life isn't fair. Yes, your life has changed; but boy, your husband's life has really changed!" But, I don't know what their relationship used to be like; I don't know how they interacted or who was the boss.
And while I know that the caregiver has to be empowered and given an opportunity to express herself as her own person with interests and activities separate from caregiving; I also know that the person with a chronic illness also has to be empowered to express himself as a person with interests and activities of his own. These aren't necessarily the interests and activities that his wife thinks are important. Often the disease leaves him so trapped that he cannot do that without help. In my perfect world, caregivers would want to give that help with grace and patience and love. When that doesn't happen, I don't blame frustrated caregivers. But neither do I blame the person living with a chronic condition.