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The Fading


 

Or

Captain Helpless and the Family Crisis




One hand struggles with the wheel. The other wipes the salty spray from my face as it continually comes over the bow and blows into the cockpit. We're close hauled in six foot seas with 22 knots of wind out of the Northeast. As the heel approaches 20 degrees, I'm considering a second reef in the mainsail. This is not a comfortable passage. It is certainly more exhilarating than relaxing. But we're in no danger; Born Again was built for this. So was I.


We left Boca de Yuma in the Dominican Republic at dawn. After five weeks of ministering in a crowded anchorage there, we're headed for San Juan, Puerto Rico where we're planning on scrounging up parts to repair our auto pilot before continuing on to the British Virgin Islands. It's about 10:00am now and we've sailed just over 20 nautical miles.


"We've gotta turn back!"


I can barely hear Amy's voice coming from below over the sound of the wind and waves. She's been trying to edit the video we shot during our last week in the D.R. for the next You Tube post. I figure she's struggling to be productive in the current conditions.


"We can't just sail when the weather is perfect! You can work on the video in San Juan!" I holler back.


There is 30 seconds of silence before Amy appears half-way up the companionway, her head sticking into the cockpit, the satellite phone in her hand.


"No Love. We have to turn back," she says in her calm, reassuring voice, "It's a message from your sister. There's a problem with your parents. They need you in Seattle right away."


 

I didn't hastily jump into the decision to trade in our current life for one lived on a sailing vessel in the Caribbean. There were a great many things that gave me pause. My parents are not well, and that a scenario like the one described above will likely play out at some point was certainly one of them. I wondered if I should wait until my parents were gone to take the leap. But God only knows how much longer they'll live. By the time my parents pass, it could Amy's parents in the same situation. There will always be some reason not to go.


Matthew 8:21-22 says: Another of the disciples said to him, “Lord, let me first go and bury my father.”  And Jesus said to him, “Follow me, and leave the dead to bury their own dead.”


I think most of us can agree that this is a hard verse, and while I'm not going to attempt a commentary on this passage here, I think it's clear that, at the very least, Jesus is pointing out that there are times when ministry comes first. We have a high calling on our lives. We are to further the eternal kingdom of God, and often times that takes precedence over tending to more worldly things...even family.


With that said, the bible is also very clear that we need to care for our families and honor our parents, so if or when the above scene plays out in my life, I will drop what I'm doing and go tend to family. I just won't let the probability of it prevent me from pursuing what God has laid on my heart to do.


For me, the whole issue has been further complicated by guilt, but you're going to need a little history before I can go into that.


In about the year 2000, give or take a year, my dad had his first heart attack. At the time, my parents were living on a few hilly acres in central California, just south of Yosemite National Park. It was a beautiful place and they were happy there, but they were not near any family. My oldest sister Lee Ann, and her husband Mike, had moved to the Seattle area several years earlier. My other sister, Diane, was still living in the Los Angeles area where we grew up, and I had already been in Illinois for a few years at that point. It didn't take long for my parents to start thinking maybe the property was getting to be too much for them.


I don't know how much of it was sub-conscious, but their choice to move to Sequim, Washington, about 2 hours from where Lee Ann and Mike lived, always seemed calculated to me. I think they recognized that they were getting older, and at some point would need the kind of help that many older adults do. It didn't take a real close examination of the stability of the lives of their three children at that time, to figure out that Lee Ann and Mike would be in the best position to provide that kind of help. And by choosing a spot a couple hours away from them, the choice wouldn't obviously communicate the motivation behind it.


My parents hadn't been in Sequim too long when my dad had his second heart attack.


He went on his morning walk one day, had a massive heart attack, and quite literally died on the side of the road. His heart stopped and his breathing stopped. No one knows how long he was in that state. At some point, a nurse drove by, happened to catch sight of him laying in the ditch and got out to help. She started CPR, called the ambulance, and somehow they got his heart beating again. Unfortunately, his brain had been deprived of oxygen for an indeterminate period of time, so he was in a coma.


A few days later, he came out of the coma. He spent a year or so in physical therapy, speech therapy, and occupational therapy. He came back stronger than anyone thought he would, but the truth is, the father who raised me never came out of that ditch on the side of the road. I have not had a meaningful conversation with him since. His personality is pretty much the same, but mentally, he just isn't there anymore. He has no interests and no hobbies. He can't even read a book. By the time he gets to the bottom of a page, he forgets what happened at the top of the page. Consequently, he does nothing all day, every day, and so his body too, is deteriorating quickly.


For several years, while we mourned the loss of our father as we had always known him, my sisters and I were at least thankful that my mother was healthy, alert, and seeing to all of his needs.


I guess it was five or six years ago the first time Diane asked me if I had noticed that mom was getting forgetful.


Taken at Amy and I's wedding in 2014. Mom was just starting to show signs of the disease.

I hadn't, but started paying more attention to it. Within another year, all three of her children were pretty sure there was a problem beyond normal memory loss due to aging. We all made different attempts at talking to her about it, Diane more than anyone, but mom would do absolutely anything to avoid discussing the possibility that there might be something happening that was out of her control. Most often she would fly into a rage. Sometimes, she would say it was your memory that was suffering. Oftentimes now, she'll just call you a liar or worse.


If you didn't know my mom, it would be easy to blame all this on the disease, but the truth is, it hasn't changed her personality - just her memory. None of her children would have ever guessed she would one day suffer from Alzheimer's, but any of us could have told you what her response would be if she ever did.


And so the guilt that I deal with comes on two fronts. The first is the guilt I feel for not wanting to be there. Once or twice a year I spend $1000 ($2000 if Amy comes), and burn a weeks vacation to spend time with the shell of a man who was once my father, and a woman who it's always been very difficult to spend time with. I dread every trip, and every trip gets worse. I go only out of duty. Only because God has commanded us to honor our parents. Only because I don't want to have any regrets when they're gone. I know that all sounds harsh and unloving - which is exactly why I feel guilty about it. Fortunately, Christ does not ask us to have feelings of love, but actions of love. And so I continue to go.


The rest of the guilt comes from feeling that I'm not carrying my weight in caring for my parents. Lee Ann and Mike have shouldered 95% of that responsibility for years now, and I feel bad about that. I do what I can when I'm there, and logically, I know that the circumstances that have led to them having the lead role in my parents care are out of my control. I didn't move to Illinois to avoid caring for my parents when they got old - I've been here for over 2 decades. I didn't suggest to my parents that they should move close to Lee Ann and Mike in their golden years so they would have someone to care for them - they made that choice themselves. It is not my fault that my parents have refused to move closer to Lee Ann and Mike so that they don't have to drive 5 hours round-trip every time they need help. It is not my fault that they're having to schedule that trip into their busy lives at least once a week lately. But none of that makes it any easier for Lee Ann and Mike, nor does it assuage my guilt. Just how much money would I have to spend making trips to Washington to avoid that guilt? How much time away from my wife, kids and grand-kids? How much time away from my job and ministries? I don't know. More than I'm willing or able to give I guess.


All the while, my parents refuse to make one single decision that will facilitate the kind of care they actually need, and make life easier for Lee Ann and Mike. They won't consider assisted living facilities. They won't consider allowing a nurse to come by the house once a day. They won't take their medication because "it doesn't do any good". Most of the time, they won't even go to their doctor's appointments. And I say "they" because there's two of them, but really it's my mom. Her control over all decisions in that household is total and complete even in diminished mental state. Any attempt at a reasonable conversation about any of these issues is met with a temper tantrum, which has the desired effect of not wanting to broach the subject again.


So you now have the backdrop for my trip to Sequim two weeks ago.


I thought I was prepared. I had the plane tickets and the rental car. I had prayed that God would give me the patience and compassion I needed. I knew it wasn't going to be fun, but I was ready. Ready to answer the same questions a hundred times. Ready to say things that would direct anger my way because they needed to be said. Ready for talking at a volume just below screaming for several days straight because mom refuses to wear hearing-aids. Ready for the rock-hard bed in the sweltering guest room. I was ready for everything...except what I found.


I will save you enduring a blow by blow narrative of all that happened on this trip, but I will share some of the highlights: there was one "I've fallen and I can't get up", one 911 call, 2 trips to the emergency room (one for each of them), one 5 a.m. screaming match (up to this point, I had never even heard my parents raise their voices to each other), and the discovery that my mother's disease had progressed to the point where there are periods of time during an average day that she has completely lost touch with reality; utterly delusional. And this was in just 4 1/2 days.


Taken this month on my trip to Sequim.

You would think that people in this situation would be begging for a living arrangement more suitable to their needs, but such is not the case. Neither of them has the faculties to care for the other, and the situation is outright dangerous for them, but still they persist in the assertion that they are doing well and need no help. There is every possibility that I will be just as stubborn one day, but for our children's sake I hope not.


Through this ordeal, I have learned dozens of things. Things about myself and where the family of my childhood lies in my list of priorities. Things about my parents, their marriage, and the power of a bond that grows over 63 years. And things about healthcare workers: that they have their own agendas, and those agendas don't always line up with what's best for a patient. I could go on, but I really just want to focus on three particular conclusions that I have come to through it all.


The first conclusion I've come to is that the laws that we have in this land that guarantee our personal freedoms, make it very difficult to protect people from themselves when they are no longer able to make good decisions. I realize the problem lies in the idea of "good decisions". Who gets to say what's a "good decision"? There are many people out there who make many extremely poor decisions and I don't think they should be stripped of their rights. I'm not even suggesting that I have a solution to the problem. I know I don't want my personal freedoms trampled so that children have an easier time forcing their parents into nursing homes. What I do know is that right this minute, in their fragile and precarious state, my parents are alone at their home, with a vehicle that they can get into and drive on roads with unsuspecting motorists, because their children have not yet managed to work through all the medical and legal red-tape necessary to force them into a safer situation. At this point we're thinking it'll be another several days. This is one of the prices we pay for the personal freedoms we have left in this country, and my only suggestion is to work out in advance, while you still have the mental capacity, who may and under what circumstances you are willing to let decisions be made for you.


That brings me to my second conclusion: I do not want to put our children through what we are going through now. I understand how my parents got to this place. It would be easy to do. My wife has talked before about seeing an attorney to have a will drawn up and I've been completely dismissive of the idea. I'm too young to worry about that now. We'll get to it later. I can see myself saying the same thing ten years from now, then twenty, and before you know it, it's too late. I have concluded that between the fact that we'll be sailing on a big ocean in a small boat, and the things I've seen with my parents, it's time to get our future affairs in order. It won't be fun. It won't be cheap. And it won't be comfortable. But it might just save a whole lot of pain and heartache for our loved ones in the years to come.


And the final conclusion I've reached is a conclusion that I continue to reach time after time during the trials of life: God is always good!


Regardless of circumstances or whether or not I can see what He is doing, He is always doing what's best. Often times, there needs to be some space between a trial and my ability to see what God has done through it, but this time was different. About half way through this gut-wrenching ordeal, the Lord spoke to me. It was in the middle of the night. I was laying on the rock-hard bed in the sweltering guest room praying for strength and wisdom, when I heard the still, small voice of the Holy Spirit within me. He said, "Russ, I know how difficult this is for you to endure, but take heart, I am in control and I'm with you. This is all happening in my timing and I have purposed for you to be here in Sequim for all of this. You need to be here to help your family. I am going to work all of this out and you will be able to head to the Caribbean without the burden of your parent's safety on your heart, and without the guilt of knowing that Lee Ann and Mike are burdened with all of their care. Just lean on me and seek my face and I will lead you through this."


It didn't get any easier from there. But being reminded in the midst of it, that God has a plan, and that He works all things for good for those that love him, and are called according to his purpose, was enough. Enough to see me through this trial, and I know, enough to see me through the trials that will inevitably follow. Thank you Lord for your unending grace and mercy on my life.


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