I’ve never said it before, but caring for my mom is the hardest thing I’ve ever done. But, the paradox of the situation is that it’s got to be one of the most wonderful experiences I’ve had in my life. Let me explain what I mean by ‘hard.’
It’s not about the things we need to do for her. It’s the total experience.
My mom has progressive multiple sclerosis. It is a relentless, merciless, debilitating disease. She was diagnosed in 2001 after her left foot dropped a few years earlier. She had her first exacerbation in 2008. Another in 2011. Afterward, she was in a wheelchair. She’s had a couple more exacerbations in the last year and a half.
My mom has been blessed to have the resources and family support to sustain her as she’s experienced the exacerbations that have caused her body to gradually decline. I watch her every day, through pain, spasms, discomfort, and the general indignity that this illness causes. A friend asked me what multiple sclerosis was and how it affects my mom. I sent him this video.
I told him to think of everything he does for himself. For example, if he needs to go to Target and pick up a toothbrush. He can throw on some clothes, hop in the car, and go. My mom can’t drive. She can’t put on her own coat. In fact, she can’t even dress herself and she needs help bathing. My Papa puts the toothpaste on the toothbrush for her so she can brush her own teeth. (My Papa is amazing. He is there 24/7 with no complaint and offering love and care that is truly exceptional.) Getting in and out of a chair is a workout for her, let alone the fact that she needs help getting in and out of bed. Going to the toilet is a major effort every time. Cooking, cleaning, almost everything is done for her. Although, we try to let her do everything she can for herself.
She has a gentle way about her now. She was a fireball in her younger days. Able to take on the best of them and willing to stand her ground in any disagreement. You didn’t have to wonder where she stood because she was going to tell you. She’s tempered now. More even-keeled. There’s a sweetness and peace that emanates from her. The ground she solidly stands on is her unwavering faith in God and belief that He knows how much we can bear. Watching this process of change in her has been an amazing example of how to graciously endure hardship like a good soldier. That’s not to say I haven’t seen her cry and have moments where she is fearful or discouraged. There have been many of those times. But, through them all, she perseveres and refuses to give in to defeat.
Remember what I said about the total experience? Watching and living that experience, with all the emotions and energy that go into it, well, is difficult to describe – and that’s what’s hard. It’s sorrow and it’s joy all at the same time. My heart breaks every time I see her wince with pain. I know I can only try to comfort her and pray that it will pass soon. It’s gut-wrenching to see her struggle to stand, or see her try to move an arm or leg that to her feels like it’s weighted down with a bowling ball. The first time I saw her try to put on a t-shirt using one hand and her teeth, I thought I would let out a groan and cry. I didn’t. Because I looked at her face. To her, it was simply trying to do something that needed to be done. But, then there are the times when I’ve seen her light up because she could walk a few steps in therapy. Or, the time when we found an exercise bike that would help her move both arms and legs at the same time. Her face lit up as if she had been given a gift she treasured more than any diamond.
I’ve been given the opportunity to experience the full joy of giving and receiving love; not wanting anything in return. You can only understand it and feel it if you have lived it. When she hugs me tight with her one good arm and kisses me, I lay my head on her shoulder and treasure each moment. I know tomorrow isn’t promised and I sometimes ponder when will be the last time we touch. We are merely pilgrims through life’s journey. Each time I leave her, I make sure to tell her I love her because I don’t know when it’ll be the last time in this life I’ll be able to say it to her, my dear precious Mama. So, yes, it’s the hardest – and yet one of the most wonderful – things I’ve done. Thanks for reading.