I’ve discovered that many people who have never been caregivers just don’t get what it really means to be a caregiver. They make many bad assumptions that sometimes cause us to hurt. I had an example of that this week.
On Friday, I received an email from my former sister-in-law. She was “outraged” by something she believed I had endorsed and proceeded to accuse me of being thoughtless, uncaring, unappreciative, heartless, and a Christian who did not live what I believed. She said some very hurtful things based on a rumor she had apparently heard from someone who was uninformed and absolutely wrong in what they shared. Not only did she hurt me, but she hurt my daughter, who she was really trying to get through me in the first place. It was an unprovoked attack and, unfortunately, one that will certainly taint any future interactions I may have with her (though hopefully, there will be no more).
She had heard that my daughter would not bring her child to visit his great-grandmother due to fear of MRSA (Methicillin-Resistant Staph Aureus- a very difficult-to-treat infectious condition) in the rehab facility where she was staying. Her assertion was that my daughter should bring her child for a visit regardless and since she was a stay-at-home mom, she certainly had the time to be able to visit. She conceded that she realized I had my hands full, but she felt I should have insisted that my daughter visit instead of encouraging her to stay away.
I was stunned by her assumptions and accusations. First off, I didn’t even know that my former mother-in-law was even in a rehab facility, much less that she was asking to see Eli. Second, I couldn’t imagine that if Sarah (my daughter) knew about the request, she would refuse unless there was a good reason. The truth of the matter was that she did know that her grandmother was in rehab and had, in fact, already planned with her to take Eli there to visit when her husband was available to assist her with the toddler. Eli is a special needs child. In almost every way, he’s as normal as any other 16-month-old toddler: full of energy, into everything, and wanting to put everything in his mouth still. However, he does not eat. He refuses to drink almost anything, and he eats only 2-3 tablespoons of food at any sitting. He does not take in enough food to survive on his own, so he has a feeding tube. Therefore, to take him anywhere means taking all the supplies for his tube feeding and replacement materials in case the tube comes out or gets dislodged. On top of that, this tube goes through his nose into his stomach, hangs out of his nose, and goes down his back. The tubing provides a direct passageway from whatever it touches outside his body to his stomach. Therefore, letting this tube come in contact with MRSA is a very big deal. But the biggest insult was the assumption that since she stayed at home, it was no big deal to go for a visit.
That’s the part that people just do not understand. Going out is a very big deal. Though our challenges are different, my daughter and I have the same issues when leaving home with our charges. You have to pack supplies (for me, it’s catheter supplies; for her, it’s tube feeding), food (Lynn can’t eat out due to his special diet; Eli will only eat very specific things), and comfort items (clothing, water, medications, etc). Lynn fatigues very easily, and his spasticity causes him a lot of discomfort if he can’t get on his peddler, which will rotate his legs and relieve the spasms.
I know people wonder why we don’t go anywhere, but it’s so difficult to do so and causes so much discomfort for us both that the enjoyment of a visit is not enough incentive to make up for the problems to address in getting there. It’s not that we don’t care about other people or that we wouldn’t enjoy a visit, but it’s high risk and often takes more time for recovery afterward than the amount of time we were gone. So we don’t go.
Bottom line, I wish people would stop making assumptions about what they think is our reason for not participating or not doing what they think we should be doing. Just like that saying goes, “don’t judge until you have walked a mile in that person’s shoes.”
