See Them

Last night was somewhat frightening. 

Two of my sisters had talked to my dad earlier in the evening and found that he sounded completely terrible. He was so weak overall and had trouble speaking. They feared that it would be his last night on earth. We prayed... oh, how we prayed! Friends and family joined in with our request for prayer. 

Dad began to feel better. He even sounded better by the time I called. (I needed to know if my mother needed us on standby.) I was heartbroken inside but solid during the worry. 

What can I do? Call for prayer? Call for help? 

I have to have something to *do*.

It wasn't until after my dad answered the phone and told me he was starting to feel a bit better that I fell apart. I got off of the phone in a hurry (so I wouldn't wear him out all over again) and completely lost it.

It had hit me, you know? The realization that scares like this are going to happen again... and again... and again, until one day 'the real one' comes. 

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ALS is a brutal monster. We are living in this state of limbo. Life right now is a tree on the edge of a cliff with my dad hung precariously out over the ledge on a frail limb. As his body fails him, the limb becomes ever unstable. At some point, the weight of everything going wrong in his body is going to outweigh the strength of the limb protecting his life and he'll be gone. Forever.

I keep trying to change my course of thoughts with this disease. I am trying to change what I tell myself inside my head about what is happening to my dad. I muscle my way through the day for my children. I collapse into a heap when my husband comes home and offers me his arms. 

"He is LIVING with ALS," I tell myself. 

This is my mantra. He is living with ALS. He is living with ALS. He is *LIVING* with ALS. I tell myself this over and over some days. Focus on 'living'.

I have to tell myself this because otherwise I am stuck thinking the other thing. You know that thing... that harsh "my dad is dying" thing. :( 

My dad is DYING!? Is this true? Can he really be dying? Isn't he technically living? Shouldn't I be looking at this as living? He is alive, therefore he is living.

"He is LIVING with ALS."

He has to be living. The other thought is unthinkable. And yet, every phone call home says the opposite. Listening to the reality of my mother and his daily lives confirms it. This is not living. This is existing, not living. This is losing more of his life every single day in some micro way. This is dying... slowly. 

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What must my dad be feeling? What is my mom feeling? Mom is more open about her thoughts and emotions than he is. This is hard for her. No, hard isn't even the word. This is brutal. This is gut-wrenching. This is something you wouldn't put your enemies through, it is so cruel and painful.

"Just rest. Just stop everything else, sit down, and rest."

She can't, though. Not really. There are a million small things that she needs to do for him and for herself. Everything she does, even the minutia that adds up and eats up the entire day, is to make their lives easier. She is exhausting herself trying to make this whole thing easier for both of their sakes.

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Visits wear them out. I don't mean that they are tired after. I mean that it now takes two days for him to recover from the energy of a visit an hour long or better. When they have to leave the house for a doctor visit, it is even worse. The recovery time is longer. Because of this, visits with them need to be limited.

This is hard on both of them, too. He wants and needs to see people before he slips off into the beyond (someday?). We need to see him. We need to know that he knows how loved he is. There are family and friends who want to support them both. This is the way to do it. Put action to words and show up. Take that time to tell him you love him and care for him. He needs us.

She needs us too, though. People forget that.

She is doing this alone. She feels isolated and pushed so far past her breaking point. Everyone is here for him right now. Everyone wants to sit and chat with him. It is hard to see past him and look at her, even when you are staring her in the face. 

Can she get you a drink? Are you comfortable? Please take off your shoes before entering. Yes, it makes a difference. No, she cannot fight about that right now. Have a seat. Hang on a sec, she's got to get him this, get him that, etc.

When everyone leaves, she's back up and running. The floors need to be vacuumed. The furniture needs lint-rolled. Seriously, any allergen at all is bothersome. Cleaning, constant cleaning, wearing herself out so that at the end of the night they can both breathe. Calls, visits, exams, errands, meal prep, baths, helping move, dress, feed, wash, do laundry... virtually a million things keep her busy from the moment she wakes up to the moment she falls asleep, listening to make sure he is still breathing. Is tonight the night? 

We need people to see them both. 

We need them to see him and to show love to him. We also need people to love on her. Ask if there is something you can do while you are there. Make your visit about her comfort, too. He gets priority, I get that. I really do. He has less life left in him than she does right now. His time is limited. But don't forget something. When you are married, this is not a journey only one spouse takes.

She is dying with him but then she has to keep living after. 

He will move on to Jesus and she will be left, shattered. With fatal disease, the time is *now*. We will be caring for her exclusively after he is gone, that is true. However, we cannot afford to care for him exclusively while he is still here. She *needs* care, too. His feelings must be considered *and* her feelings must be considered. She is his caretaker. Whatever we can do to strengthen her immediately benefits him. Seriously. Literally, everything we can do to help her directly helps him. Caring for her *is* caring for him.

She's had four hours 'off' in all of this time. Four hours where she wasn't caring for him in months. It is doing her in, emotionally and physically. Exhausted isn't even a strong enough word to adequately convey what being a full-time care-giver does to a person. Nobody can handle that alone. I've got to step up my game. 

Look at her. 

See her. 

Help her. 

Be there for her as much as for him.

See her.

See them. 

See the person who is suffering from the disease.

See the caretakers.

See them.

Help them too.

We have started a GoFundMe Campaign on behalf of my parents. Please consider sharing it on social media.