The Challenge of Caregiving
I've talked to a lot of people in the past month about Melissa's disease, and about my role as a caregiver for her. Yes, it is grueling at times, she does require assistance at night frequently, and it takes a lot out of you. But if someone were to ask what the most difficult part of taking care of Melissa is, I could sum it up in one word:
LUNCH.
Allow me to provide some background. ALS can do some weird stuff in your brain, including re-wiring your taste buds for some odd reason. Many people lose the taste for certain foods they've always loved, and have odd cravings in their place. Melissa, for example, lost the taste for ANY dessert about a year ago. Let me say that again for emphasis: SHE CAN'T EAT DESSERTS. (And you thought the whole not-able-to-walk thing was bad!) Anything sweet like chocolate or pie makes her nauseated. The only thing that I've been able to get her to eat was a small teaspoon of vanilla ice cream, and that was only once.
In its place, Melissa has cravings for certain... non-dessert stuff after dinner. For a long time, she'd eat a bunch of green olives. Yes, without the martini. In the past few weeks it suddenly changed to pickles. She told her dad to pick up a jar of sliced pickles out of the blue one day, and threw a fit when I brought her the nightly bowl of them. She informed me, quite pointedly, that what I had were pickles sliced in cross-section, or pickle CHIPS. What she really wanted was pickles sliced longways, or pickle SPEARS. The fact that she had left off this oh-so-crucial bit when she asked for "sliced Pickles" was dismissed.
These cravings do bleed over into other areas, namely Lunch. Now her mom is Betty Crocker when it comes to cooking, so the fridge is constantly full of single-serving leftovers and the pantry is always stocked with assortments of cheese, deli meat and chips. We never had a problem with lunch before, but now every day when I come upstairs at noon and ask her what she wants to eat, she gives me that look that says "What *IS* this 'Lunch' thing that you speak of?" as if she has never been faced with this dilemma in her life. Then she spends about 10 minutes pondering what her body craves and might possibly be within driving distance.
"Come on, Mel, you KNEW that this was coming. You had lunch yesterday, and every day before that most likely." She nods smiling, and I usually make my sandwich downstairs while she decides. "Perhaps tomorrow you can think about this before Noon? That way we can have it ready to actually EAT at lunchtime?" She looks up and thinks for a second and replies "Nah. This is fun. This is good quality time that we have together."
So aside from Lunch, most everything else about taking care of her is not a big deal.
LUNCH.
Allow me to provide some background. ALS can do some weird stuff in your brain, including re-wiring your taste buds for some odd reason. Many people lose the taste for certain foods they've always loved, and have odd cravings in their place. Melissa, for example, lost the taste for ANY dessert about a year ago. Let me say that again for emphasis: SHE CAN'T EAT DESSERTS. (And you thought the whole not-able-to-walk thing was bad!) Anything sweet like chocolate or pie makes her nauseated. The only thing that I've been able to get her to eat was a small teaspoon of vanilla ice cream, and that was only once.
In its place, Melissa has cravings for certain... non-dessert stuff after dinner. For a long time, she'd eat a bunch of green olives. Yes, without the martini. In the past few weeks it suddenly changed to pickles. She told her dad to pick up a jar of sliced pickles out of the blue one day, and threw a fit when I brought her the nightly bowl of them. She informed me, quite pointedly, that what I had were pickles sliced in cross-section, or pickle CHIPS. What she really wanted was pickles sliced longways, or pickle SPEARS. The fact that she had left off this oh-so-crucial bit when she asked for "sliced Pickles" was dismissed.
These cravings do bleed over into other areas, namely Lunch. Now her mom is Betty Crocker when it comes to cooking, so the fridge is constantly full of single-serving leftovers and the pantry is always stocked with assortments of cheese, deli meat and chips. We never had a problem with lunch before, but now every day when I come upstairs at noon and ask her what she wants to eat, she gives me that look that says "What *IS* this 'Lunch' thing that you speak of?" as if she has never been faced with this dilemma in her life. Then she spends about 10 minutes pondering what her body craves and might possibly be within driving distance.
"Come on, Mel, you KNEW that this was coming. You had lunch yesterday, and every day before that most likely." She nods smiling, and I usually make my sandwich downstairs while she decides. "Perhaps tomorrow you can think about this before Noon? That way we can have it ready to actually EAT at lunchtime?" She looks up and thinks for a second and replies "Nah. This is fun. This is good quality time that we have together."
So aside from Lunch, most everything else about taking care of her is not a big deal.