June 09, 2010


I have to come clean about something that has been weighing on me. For the past few months, after everyone else in the house is asleep and Melissa has gone to bed, I've been having women come to the house and... well, fulfill a certain need that ALL men have naturally. One that lately, I have not been getting met, with Melissa being in the state that she is right now. They show up around midnight, and are gone when everyone is getting ready for work and school in the morning, so most people are none the wiser about this.

Matthew has no idea, he sleeps like a log at night, and they're gone long before he gets up. Melissa's parents have occasionally stayed up later than usual, and there has been that awkward meeting in the upstairs hall. They know what's going on. They know the stress that I'm under. But they also know that I love Melissa very much, and that I am doing everything I can to take care of her. I've told my parents about the women. Hell, Dad understands my needs, he's even given me some money for it, if you can believe that.

At first I tried to deny these physical needs, push them to the back of my mind. I figured that if I was strong enough, if I just loved her enough, I wouldn't need this. But the body can only go so long without it. I felt some shame at first, but a neighbor had some connections, a friend who ran a service that would provide nighttime companions, one after the other. If I didn't like one, I could just send her back and someone new would be sent out the next night. I have my favorites that come for repeat business, but sometimes there will be three or four different ones in a week. The service is a lot more convenient for me, since I don't really have the availability or time to go out and look for companions myself. One time, they send someone who was actually an acquaintance of ours, and it was a little embarrassing to have her in the house, seeing us like that.

I've told my pastor, and he isn't giving me any grief about it, but he always was a bit more Progressive. And now even Melissa knows. She's not happy about it of course, she'd rather we have a traditional arrangement where we'd sleep together like most married couples. But a few nights a week, she has come to terms with the fact that I require a slightly different arrangement to satisfy my needs.

I'm talking about night-shift nurses, of course. They come in around 11 PM a few nights a week and take care of Melissa while I get some rest on the couch downstairs. Essentially, I am paying to sleep.

I posted about a year ago about the most challenging aspect of caring for Melissa being LUNCH. Things have changed a great deal since then, especially since she got her Tracheostomy in July of last year and started sleeping with the Ventilator (aka "The Vent"). Since then, meals have become easier (now blended up and put in her feeding tube) and sleep has become the #1 difficulty for both of us.

All of us get uncomfortable when we sleep, and our bodies automatically move us to another position. But since Melissa has ALS, she has no control of her muscles below the neck. So at night, she gets more uncomfortable until it wakes her up, and she needs to signal me to turn her over. This happens, on average, once every 90 minutes. Add to that the times where the Vent pressure causes her to cough, and she needs her Trache suctioned out, which can happen between 10 and 30 times a night, and you can see how getting any restful sleep for us is a challenge. While Melissa can sleep in later to make up for this, I have to wake up and get to work at 8 AM.

At bedtime, she takes a combination of muscle relaxers and one sleeping pill. That should keep a normal person asleep for the whole night, but she will usually only sleep for about 2 hours before the interruptions begin. While I have become accustomed to waking up and quickly responding to the Vent alarms (indicating a cough, either natural, or elicited by Melissa to get my attention), the cumulative effects of not getting REM sleep do take their toll on you. Sleepiness first, then lack of concentration, forgetfulness, mood swings, and a certain ADHD-like symptoms that just make working the next day very challenging.

We have two agencies that provide nurses for us, (Maxim Healthcare and Better Private Duty), and it's a challenge to find nurses that really can help us. Melissa doesn't require much in the way of skilled care, but it takes a certain skill to communicate with her, and not many of them can grasp that method. We had two great nurses that would each come in two nights a week: Jody from Maxim and Tamika from Better Private Duty. They knew their stuff and we got along well. But after Melissa went into the hospital in March, Jody had to stop working nights, so we were down to one trained nurse, and the other two nights a week, I'd train the new nurses from Maxim, so I'd have to stay up there and get very little rest. And since most of the nurses really couldn't grasp the communication method that we use, we've had a near-constant stream of new nurses for the past couple of months, and so I haven't been able to get that rest.

We're still "auditioning" new nurses from Maxim today. The only thing really keeping me going was Tamika, the trained nurse from Better Private Duty. When she was here, I could sleep peacefully downstairs with few interruptions. But last night Tamika came in and declared that she would be gone for a few months because she was pregnant. While we are happy for her, I selfishly am thinking about losing those restful nights of sleep and thinking about the long audition process for finding a new nurse from BOTH companies.

Even so, I am thankful for the help that I am getting on this. I wouldn't be fit to work if I had to do all the care of her at night. My parents and relatives have chipped in to help with the monthly cost of the nurses, and after the hospital stays as of late, I think we've hit our Out-of-Pocket Maximum for our HMO, so they will be picking up more of the cost of it until the end of the year. Like most things in dealing with ALS, any help we get is appreciated. As hard as things get for us I always keep in mind that many people who get this disease don't have the support structures of nearby family, the care of one of the few ALS Clinics in the country, and loads of friends who care for her. That is what keeps us positive about the whole situation.

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