Family Caregiving: What the Caregiver Wants You to Know

I am the family caregiver. I am 42.5 (my half birthday was on March 12). My mother is 24 years older than I am. She has paranoid schizophrenia, bipolar II disorder, COPD, and, as of just a few weeks ago, throat cancer. Now, the thing you should know about her throat cancer is that if you had to have it, you want what she’s got. That doesn’t mean that she’s in for a good time. One of her vocal cords is paralyzed because she has a T3 tumor. She’ll need radiation and chemo. She will also need a temporary feeding tube because, you know, it already hurts her to swallow (it is the only time she says it hurts) food or liquid. Add to that the pain associated with spit roasting her throat via radiation and she damn sure won’t want to eat or drink (although she will still be allowed and encouraged to have anything she wants).

I am her caregiver and her durable healthcare power of attorney…at her request. And here’s what I (and I am sure lots of other family caregivers) want you to know.

If You Aren’t Going to Help, Sit Down & Shut Up

It’s really just that simple. Years ago, I took the necessary steps to build my life a certain way. Thankfully. I work from home. I started a business as a writer and editor in 2013 (part-time). I started working from home full-time in 2014. Part of the reason I did that was to take care of my youngest son who is autistic and non-verbal.

Fast forward to now. I can’t imagine trying to take off work constantly (even if I worked from home for an employer) to take my mother to various doctors and radiation five times per week. It’s a 30-minute drive to pick her up and an hour to the clinic for radiation. And I have no help.

Over the years, there have been lots of complaints from her sister-in-law, her brother (now deceased), her cousins, and others in her family who felt that I didn’t do enough for her despite the fact that I am married and have three children (two are now adults…and, again, one has special needs). Yet, no one wanted to volunteer to help. No one wanted to take her to any appointments or to the grocery store. It wasn’t until my older two children were adults with licenses to drive that I had any help. Now, they have jobs and can’t just take off work.

Keep in mind that the person doing the caretaking still has bills to pay. They still have a family. They still have all of the same obligations and concerns that you have that you say stop you from raising a single finger to help. So, unless you are going to step up and help. Take your hand and put it over your mouth. Just shut up.

If you don’t have any medical training, we don’t need your input on what you think is wrong. We are at the appointments. We are asking questions. We are reading the paperwork. You aren’t there. You’re Ralph Wiggum watching YouTube videos. Stop it.

If you don’t have anything nice to say and if you cannot contribute meaningfully to the support of the caretaker or the individual who needs the help, just be quiet. Don’t scare the person who is sick. Don’t give them your crazy fucking conspiracy theories or wacko suggestions, either. Because if you do and when (not if) it gets back to those of us with the durable POA, we will pull the rug out from under you (if we are worth anything…I know I am and I will).

Just like the old adage goes: if you can’t be nice, be quiet.