I have learned that there is more power in a good strong hug than in a thousand meaningful words.Ann Hood
For some caregivers, maybe most caregivers, the loss of physical affection can be the hardest. Our loved ones, for the most part, keep their mental faculties about them throughout the entire disease. As long as you are open with each other and communicate like any couple it is not hard to keep an emotional connection just as you had before ALS came in to your life.
When our youngest was born, 4 days late and coming in as the heaviest of the 3 boys, we were not expecting a stint in the NICU. However, the day after he was born he “greyed out” during his hearing test and I came out of my first shower to the doctor in my room with my newborn son in an incubator saying he needed to be in the NICU. They thought he aspirated something and had pneumonia but quickly learned it was more serious. Pax got lines put in through his umbilical cord, a spinal tap and a host of other tests. It took him 18 days to work up the strength to eat and breath on his own and come home. Around day 10 of this nightmare I was sitting in our family room, surrounded by Matt’s parents, my parents, our other 2 kids and Matt. I started crying. I mean, really crying. Darn hormones. It seemed like he would never come home. My mom went to give me a hug and I kind of freaked out on her. I didn’t want a hug from her. I wanted a hug from my husband, and only my husband. The only other person who could possibly understand what I was going through.
It has been over 3 years since my husband has been able to hug me. That’s really hard. I know some of our friends might be scratching their heads. It’s a joke among our friends that I don’t like hugs. Even my friends parents know this about me. But I loved Matt’s hugs. I loved lying in bed with him, snuggling him, spooning with him. My husband was really strong before ALS. Like freak strength strong. And there was no place else I felt more safe or cared for than when he would wrap me up in one of his hugs. When my head would fit perfectly under his chin and he would just encompass me. I used to lean in to him when we would be standing around to feel that reassuring strength.
To this day, I’m a big baby and get nervous staying alone. We have a large Rottweiler/Husky mix who would protect us to the death. I am a mama bear who would tear anyone to shreds if they ever threatened my children. However, if I stay at our house without Matt, I still get really nervous and KNOW there is some sort of ax murderer in our basement that has been there all day and is just waiting for me to fall asleep so he can creep up and do us all in. Makes absolutely no logical sense why having Matt there makes me feel safer. We “joke” that there is nothing he could do to protect us if my unlikely scenario ever came to fruition. I would have to be the one physically protecting our family. However, even in his limited physical capacity, Matt makes me feel safer. I still look at him as the freak strength 19 year old I fell in love with, except with a little more wrinkles and a couple creeping grey hairs. Even without those strong arms wrapped around me, I can feel them.
I still hug him, even if he can’t hug me. For the time being, his core strength is enough that I can transfer him from his wheelchair. He can support his own weight even if he can’t get that weight moving. Sometimes when I transfer him, I stand him up and just hug him. I put my head under his chin like the good old days. He kind of twists and throws his limp arms in an attempt to hug me, but it usually ends up his hands grazing my butt, which isn’t altogether a bad thing. I know he misses making me feel safe with his hugs and he is trying his hardest to give that to me. I can still hug him and will continue to do that as long as I am able to stand him up. Probably when he is confined to his chair or bed I will still do it too. I am not giving up my hugs.
I can’t even imagine how hard it is for Matt to have never held or hugged our son while he was in the NICU. Or to hold Pax unassisted after he came home. Our boys are rugged, a trait they get from their father. (It’s actually becoming a little scary how much our oldest is like Matt used to be before ALS. And it’s not like he learned these behaviors from his father. JP says he remembers Matt up and walking around but maybe it’s only from pictures. JP’s messiness and physical demeanor are eerily like Matt’s.) The boys climb on Matt in his chair or when he is in bed. They aren’t really gentle with their father. He’s “Dad” and he’s meant to be climbed on/over/around without any thought of his own comfort. Almost every night they all pile in to bed with Matt and watch a show together. I usually sit on the other side of the room and watch the 4 of them. It might be my favorite part of the day. The boys kind of encompass Matt. One is on his feet, the other is next to him and usually Pax is either on his chest or his head. And you know what?! Matt loves it.
It is so important for ALS patients to get physical contact. People ask us if Matt can still feel his hands and legs. YES! He still feels everything. His sensory nerves are not affected by ALS, only the ones that make him move on his own volition. He can’t shake your hand but he can do a fist bump (as long as it’s not his driving hand, otherwise you can cause him to run you over!). He does enjoy hugs – I think. He doesn’t like it if you hover around the back of his chair and creep over his shoulder but sitting next to him while hanging out is great! Or across from him if you want to have a conversation so he can look you in the eye. Sometimes his voice muscles are tired and he doesn’t really want to or can’t speak. Just being a physical presence that is comfortable with the silence between you two is good. Not having to fill the void with idle chatter. Being physically present for an ALS patient doesn’t always mean touching.
So, as a friend to a caregiver, or an ALS patient, give a hug. Sometimes I need them even if I don’t admit it. You might not be my first choice of a hugger and I might close my eyes and pretend you are someone else. Actually, I won’t, because that is weird.