Person sets cement on brick wall to set boundaries

Dealing with Apathy From My Loved One With Parkinson's

When my father first started feeling the symptoms of Parkinson’s disease (PD), we, as his family, had no choice but to feel for him. There was no cheering him up or showing him the bright side of things. All we could think was, “Man that must suck. If it’s genetic, what can I do to stop it for myself?” which in hindsight is a pretty awful first reaction.

Learning to live with Parkinson's

The next step, though, was about learning to live with it for his sake. Accepting the diagnosis and looking at what we could do to manage it better for him.

A big part of his diagnosis is managing his moods and drawing boundaries about what is acceptable and what is not. For instance, he wakes up and he hasn’t had his medication yet so he is in a more irritable mood than normal. This means he might say something rude or get upset over something small. That’s okay. I can deal with that because he has not had his medication yet.

However, it is still important for me to voice in a calm tone, “I am sorry you feel upset. But that was not nice the way you said that. I will come back in a few minutes after your medication has set in and we can talk about this again.” In my family, speaking like that to your father - to your Indian Father no less - was not thought of to be as setting boundaries, it simply was rude.

Conversations about setting emotional boundaries

Over two years, there were a lot of conversations like that. Conversations where emotional boundaries were set. My sisters weren’t there for that part as much and never learned how to set boundaries as much as I did.

Whatever the case, I have felt the setting of boundaries, the not allowing to be spoken to rudely or yelled at, means the bond between my father in me might be a little less. In his mind, I fear he sees me as rude and unforgiving. These thoughts are only strengthened by the increasingly apathetic nature my father is taking on as his PD progresses.

What will his apathy look like in the future?

I am 25 and I have not yet accomplished very much. I still have grad school to graduate from, a wedding someday, maybe children, and hopefully lots of money to be made. Do I think that if my father is present for those milestones, he won’t be able to express joy for them? Will his apathy run so deep he won’t feel proud for me? I don’t know. This might be the very dramatic musings of a 25-year-old. But, I know how challenging Parkinson’s can be. Its victims are not just those diagnosed, it is also the family and friends of those around.

The most important thing for those around people with PD, at least in my opinion, is to remember to voice for yourself, voice for your dignity, and remember, the mean or rude behavior is not from your loved one, but it is from this disease. If you know your loved one, you know they wouldn’t treat you this way willingly. Have patience and take care to find time for yourself - to regain the patience and strength.

Being someone’s punching bag is no task anyone takes on willingly. Remember you are a person too, not just someone’s caregiver.

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