November is National Caregiver’s Month according to the National Family Caregiver’s Association. These individuals certainly deserve our attention and accolades. It is noteworthy, however, that the term “caregiver” often rankles individuals with young-onset PD. I don’t think this should be surprising.

Those who know me or have followed my blogs are aware that I do not like the term “caregiver,” particularly as applied to a spouse or partner who is simply following through on a relationship vow made when both were healthy. For them, “sickness and health” was a meaningful obligation. These are men and women of character who stand by their partner through the best of times and the worst of times. They do it without getting paid, often incurring a significant economic hardship due to a decreased presence in the workforce.

“Caregiver” has been commonly used as a name for an individual with a loved one who has significant cognitive challenges (e.g. Alzheimer’s disease) or chronic debilitating conditions. This suggests there is a contextual element involved in its use. As applied by the medical community, caregiver is short hand for an unpaid individual with no medical training who assists a loved one. The same services this person provides might be called nursing if they occurred in a hospital, assisted living, or skilled nursing facility.

On the other hand, people dealing with young onset PD might see the term as pejorative because it implies an extreme power differential in the family unit. These are not men and women in nursing homes or assisted living facilities. Yet, here is an implication for a weakened, even helpless, person who requires care from a more powerful person who is available to provide it. That is, there is a PD patient and a caregiver.

Power differentials in a relationship are always tricky. Couples negotiate many aspects of the relationship either directly or tacitly. Terms like caregiver and PD patient describe roles that upset the balance achieved through negotiations of many years. Such terms can also lead to some logical inconsistencies as when two individuals with PD choose to marry. This situation is not all that uncommon and couples I have spoken with tell me that they typically serve as one another’s caregiver. Aren’t they really talking about an activity rather than role they carry out, one of caring about and for their loved one? Why assign a title to love?

Finally, following from my previous blogs about sexuality, I cannot help but comment on how difficult it must be for someone to be intimate with their caregiver.

Let’s celebrate the men and women who act upon their love for partners with young-onset PD. Let’s just call them something other than “caregivers.”

Regards,
Dr. Paul