When you are very in-tune to the emotions of another, it’s very easy to take on those same emotions. If that person is happy, you enjoy laughing along. If they’re sad, you feel a gloom settle over you both while you try to find ways to cheer them up. When they’re angry, it feels like it’s directed at you, and in fact, maybe, but the underlying reason for the anger is often their disease process. However, it’s very difficult not to “give as good as you get” when someone is spewing forth hateful or angry words at you. When those words are spoken, it’s difficult not to wonder if you’re to blame or are you doing a good enough job. It’s also very difficult to come back and keep taking it.
I’m very fortunate that Lynn rarely directs anger at me. He gets angry at his situation or the equipment he is using when it malfunctions but he’s very careful not to blame me. He’s very considerate of my emotional needs and very grateful for all that I do for him. But he also has all his mental functions intact. Not everyone who cares for someone with MS or other neurological conditions is that fortunate. When MS dementia sets in, the person with MS might not have a clue as to who their caregiver is or why they have to do what is being demanded of them. It’s heartbreaking to be in that situation when as a caregiver you are doing your best to keep them safe and healthy but they are fighting you each step of the way because they think you’re trying to harm them. I can’t imagine anything much more frustrating. In those situations, you might begin to doubt your own sanity or if it’s the right time to say, “no you can’t have cake for breakfast,” or would it really be okay this time.
There are many challenges that come from being a caregiver that you deal with every day in the privacy of your own home. I know I often devise ways to handle a challenge that to others who might observe from the outside looking in might be seen as being weird or even unsafe but unless you walk in my shoes and have my exact same resources, skills, and time constraints; don’t judge what I do because, at the time, I’m probably doing my very best.
It’s easy for people on the outside looking in to make judgments on what you should or should not do. They’ve read an article, heard a story, watched Dr. Phil, or taken a class and have become experts on what should or should not be done. I know mothers are often criticized about how they handle a toddler who acts out in a store or disrupts a waiting room or whatever. They get “those stares” that cast judgment and they feel embarrassed and ashamed to be caught not being the perfect mother. The same holds true with caregivers. In public, Lynn does not want to be fed. He prefers to try to feed himself so I always have available for him special utensils for that purpose and finger foods he can pick up and eat without too much difficulty. However, it’s usually not the same food like everyone else and he usually makes a mess. I can sometimes see the pity or embarrassment in the eyes of others which unfortunately makes us both want to avoid eating in public.
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