Today a friend of my parents, a man with ALS like my father, passed away. He asked to be disconnected from his ventilator. I’m saddened that he felt this choice was best for him and his family. Also, I’m terrified that my dad may at times feel that same despair. We (my mom, sisters, and my two older “kids”) do our best to care for my dad; to take care of his needs, to make him comfortable, and to make him feel VISIBLE.
Yesterday, my mom was enjoying taking care of my sister’s babies. She lifted the 2 month old up so that he was in my dad’s direct line of vision. She said, “Would you be working right now if you didn’t have ALS?” My dad blinked, to indicate Yes. She continued, “I would be working too. Then we both would have missed out on all this.” They shared a loving smile. [It should be noted that by “all this”, my mom was referring to the baby that had exploded poop out of two different sides of his diaper an hour before, the one year old on the counter trying to order ALEXA to play his song, and a couple of older kids working puzzles on the table.]
It’s the Little Things that Make It Count
I realize we all show love differently, so I’d like to share the little things we do for my dad to let him know that he is still important to us.
Let him make some Decisions
Yes, my mom gets him involved in purchases and large family decisions, but I’m talking about smaller decisions too. I let my dad have a say in what shirt he wears. (He usually wears sweat pants or shorts depending on the weather). If dad knows he’s going to church for Adoration or Mass, he wants to wear a collared shirt. Sometimes he just wants to look nice if he’s going shopping that day, or if his mom and dad are planning to visit. Other days, a plain shirt is fine. I’ll hold up a shirt; if he blinks, he wears it. If he doesn’t blink, I pick a different shirt. He also chooses which hat he wants to wear in the sun, where he wants to sit in the family room, etc.
My dad can’t talk anymore. I miss the sound of his voice and the way he used to laugh. But there’s nothing wrong with his ears, so we talk to him anyway. It’s human nature to converse only with those who reciprocate, so I try to remind the kids to greet and talk to grandpa even if he can’t talk back. Being unable to easily communicate is a lonely way to live, especially if those around you talk around you as if you were only furniture. Talking to dad makes him a part of our lives, and I hope that we’re communicating that we want him in our lives too.
Offer to Do Special Shopping
There are some occasions that my dad would like to shop for my mom without her knowing. I like to take him out, or if he already knows what he wants, I’ll go out and buy it. He “gives” me his debit card, and I’ll buy and wrap his Christmas/ Anniversary/ Valen… Doh! I just realized that I dropped the ball on Valentine’s Day… Sorry Mom!! Since mom does the bills, she may see the charge (and will sometimes argue with the credit card company over it for a while), but we do what we can to make it a surprise.
Remember he’s Not (that) Fragile
Maybe because we exercise dad’s arms and legs, and go through all his bodily care daily, I tend to think of my dad as fragile sometimes. Doesn’t “sick” mean “fragile”? Not really. Yes, we do have to be careful around his ventilator and other devices, but my dad isn’t going to break if I hug him. More importantly, he needs physical affection just like the rest of us do. You should see him smile after my mom gives him a hug and kiss! People at church take my dad’s hand, or simply pat it as they greet him; he can only smile back.
Everybody has Limits
No one has unlimited resources or capacity to care or be cared for. No one ever wants to feel like a burden. Of course, It’s only natural to feel low every now and again. I pray that my dad’s lows are outnumbered by good days. The good thing is, even if he can’t participate in all of our activities, at least dad gets a front row seat to them. For example yesterday, when my mom finally asked ALEXA to play the “Wheels on the Bus” while trying to peel the toddler off of her counter:
ALEXA: I can’t find the song, “The Wheels on the Bus… Down, Get Down!”
Like parenting, being a caretaker is a grueling and often a thankless job. My mom is incredibly strong: physically, mentally, and spiritually, but she is also frequently stretched to her limits… and THEN she invites all the grandkids over to make cookies and spend the night. I guess that’s why they say “It’s the little things that make it count”!
Naturally, the dynamic in every family is different, but I’d appreciate reading how you make your ALS family member or friend feel welcomed and loved in the Comments section!