The Tradgedy of a Caregiver's Suicide

It's heartbreaking to read the newspaper account of Randy Budd's death. He was the spouse of Sharon who suffered a traumatic brain injury in 2014 after a rock was thrown from an overpass onto their moving car.

That's really all I know about them. I vaguely remember hearing the news story when the crime occurred, but never followed up on her injuries or progress. She lost part of her brain, endured seven surgeries, and now requires round the clock care. But he couldn't do it.

He couldn't live with the realization that the only way out of their situation was for one of them to die. He made the choice to be the one to go first. It breaks my heart because my book didn't reach him. That's who I wrote it for; people just like him who have lost hope.

It's beyond a literary explanation of how difficult it is to live in an environment such as his. I poured my story out onto pages and pages of journal paper so I didn't have to keep it in my head. I then held on to it for a year before I was brave enough to publish it. I followed through with baring my ugly truths for one reason. You cannot survive such an upheaval in your life without God. I pray that person who needs to hear this will know and be changed like I was.

Parkinson's Disease and Stroke

Five years into this post-stroke life and I'm just now learning about Parkinson's disease. It's what Michael J. Fox was diagnosed with back in the early nineties. His face is still recognizable in guest-starring, Emmy-nominated roles. I watched him just a few weeks ago on the series finale of The Good Wife. However, it never occurred to me that his condition could explain some of John's behavior until I started searching for the reason behind his painstakingly, slow movements.

Anything that interferes with his routine throws him off balance, so I stand by patiently while he rocks himself forward in his wheelchair, then plants his feet so I can help him stand. It can be maddening at times, especially when I'm in a hurry. After five years he hasn't improved the technique, and he won't. It seems to be getting worse. How can that be?

Parkinson's disease (PD) is a progressive neurodegenerative disorder, characterized by the loss of neurons that control motor behavior. A cardinal symptom of the disease is bradykinesia, or slowness of movement. Other characteristics that appear are rigidity, resting tremor, gait disturbances, and postural instability.

What? For the last five years I have been blaming myself for John's lack of progress. If only I had started earlier to care for him full-time, or practiced more at home with therapy exercises, or been more patient he would be further along with his recovery. Reading through the list of symptoms on the Parkinson's Disease Foundation website convinced me that I had found the cause for John's latency, and most importantly his apathy.

Parkinson's progressive symptoms include:

Walking Difficulty

Tremors

Bradykinesia

Depression

Motor Skill Loss

Voice and Speech Differences

Memory Loss

Skin Disorders

Facial Mask

Stooped Posture

Stiffness in Limbs

Apathy

I look back to the time before the stroke when I first noticed his shuffling walk. I blamed it on age and attitude. I assumed retirement meant he didn't need to be in a hurry to get anywhere. Could that have been a sign of his impending stroke? There is no explanation for what causes PD. Some experts believe it's linked to an environmental factor or possibly a mini stroke that destroys dopaminergic neurons, the catecholaminergic neurotransmitters found throughout the central nervous system.

I wanted to sob. Why did it take five years for me to see this? When did I start to notice the tremor in his hand? It wasn't always there. Was it? It made John angry when I brought up the subject during his latest check-up. Why do I have to know? Why do I keep looking for answers and asking for referrals from his PCP? Nothing is going to change for him now, but I can change. I can be more patient with him. I can look toward our future and plan for the type of care he will need.

John tried to pick a fight with me by sulking, then pounding his fist on the table. I ignored him then set the appointment when the neurologist's office called with an opening. He was reluctant to go, but we arrived early anyway to fill out the new patient forms, then we waited. I took him to the restroom to empty his urine drainage bag, and then we waited. Another patient was called back ahead of John so he waved his hand angrily at the receptionist behind the glass door. She explained to him there were other doctors in the office and he was still next in line to see Dr. Herron. We waited. The nurse came out to bring us back to the exam room where she took his blood pressure, and then we waited. We had waited beyond a reasonable person's tolerance and with John it was becoming unbearable. I knew I couldn't sit there any longer then pleasantly explain John's intimate medical history to a stranger, so we left.

Back in the car I felt a moment of sorrow for yet another failed attempt to change our circumstances. Why was it still so difficult? Why was I still making stupid decisions about his care? I needed to let it go, but I couldn't do it. I sent an email to the PCP to explain what happened and ask for another referral. Later that evening we attended Wednesday night service where I gave it to God in prayer at the urging of the pastor to let go of whatever was weighing us down.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7 NIV.

The next morning we received an apology and a referral to another neurologist who is associated with the hospital's stroke center. That's exactly where I believed John should have been in the first place after making the wrong choice in the ambulance the night of his stroke. I'm grateful for the peace and joy that I have received in exchange for this burden. I'm grateful for the comfort in anticipating what God has planned for our lives.

God's Will or John's Will

We have marked the five year anniversary of John's stroke, and he still can't take a single step on his own. He still can't speak more than three words. My son, who believes strongly in the power of healing prayer, wondered too why his recovery wasn't further along.

I was stunned by a thought that came over me. My reaction was physical, like a punch in the stomach. The air left my lungs and I couldn't suck any back in. I went to the floor in agony. Was John's recovery stagnating because of my lack of faith? I couldn't begin to get my mind around it. I couldn't lift up my arm to try to touch it. I was paralyzed with despair.

It took the whole night and part of the next day before I could begin to think about it. Are we in limbo because I don't believe God will change this? I didn't think that was why, but was it? Nothing I've done has moved us forward. Sometimes my role as caregiver has done just the opposite. I pamper him because he demands that treatment. It's too often a battle of wills where I always give in because I should. It still makes me angry most of the time, and then my guilt takes over for the anger.

Dealing with the stroke on a day-to-day basis is both physically and mentally exhausting. If I say out loud, "Day after day", or count how much time is in five years then I can't function.

"Then Jesus said to him, 'Get up! Pick up your mat and walk!'" John 5:8 NIV.

Can I do that for John? Can I pray for his will to recover then expect the answer to come? Isn't that what I've been doing all along? Am I just using the wrong words? Is my faith too weak? There is really only one way to know for sure, so I held John's hand and prayed out loud for both of us.

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33 NIV.

All Roads Lead to Jesus

"All streams flow into the sea, yet the sea is never full." Ecclesiastes 1:7 NIV

I find the book of Ecclesiastes full of wisdom that speaks to my life. Is it because I am a realist who sees the glass holds exactly four ounces, or am I just depressed? I have launched the changes I need to make in my life. I have prayed for wisdom and guidance and now all I need is patience. I've learned to not push things that don't work because it's just a waste of energy. God continues to answer my prayers and has given me everything I need. I have food and water, shelter and clothing. What else do I need? What about a Volvo? That's an easy one; of course not. Is any car a need? Some would argue that it is. I need a car to bring home groceries, and to drive John around, and take Bandit to the park. I need a car to look like I'm still living my life.

On Monday we drove to the park with our coffee and a breakfast sandwich for John. It was a way to get us up and running and out of the house. In the back of my mind I was thinking about the mess I made with the bathroom plumbing upstairs. I turned a simple project of changing out the trip lever into cutting a hole in the sheetrock behind the tub. It sounds like I know what I'm talking about because I do now after making three trips to the hardware store, watching YouTube videos on how to remove the old drain, then finally reading John's plumbing manual. It was a beautiful day for February, and all of the neighbors were outside working on their homes when we returned; painting, fixing, and polishing. I'm angry at my ineptitude. I'm angry at our hopeless situation. I still don't want to move. I still don't want to let go of my house, but I'm stuck on this treadmill not going anywhere or making any progress.

Over the weekend I talked myself back from the edge before falling into another meltdown. I read Ecclesiastes chapters 1 through 5 over and over again.

"A person can do nothing better than to eat and drink and find satisfaction in their toil. This too, I see, is from the hand of God, for without him, who can eat or find enjoyment?" Ecclesiastes 2:24-25.

How beautifully simple that is. Why can't I stop there and live my life that way?

The New Testament does not quote from this book, so I wonder why I'm drawn to it. I don't believe we're to live our lives frivolously and to just eat, drink, and be merry. How do I reconcile the simple message with what Jesus teaches?

He gives us the parable of the rich fool in Luke, chapter 12.

"'...life does not consist in abundance of possessions.' And he told them this parable: 'The ground of a certain man yielded an abundant harvest. He thought to himself, 'What shall I do? I have no place to store my crops.' Then he said, 'This is what I'll do. I will tear down my barns and build bigger ones, and there I will store my surplus grain. And I'll say to myself, 'You have plenty of grain laid up for many years. Take life easy; eat, drink and be merry.' But God said to him 'You fool! This very night your life will be demanded from you. Then who will get what you have prepared for yourself?' This is how it will be with whoever stores up things for themselves but is not rich toward God.'" Luke 12:15-21.

I installed a new hand held shower head in the master bathroom thinking it would make things easier for John. He didn't like the force of the spray and batted it away so it soaked the carpet in the bedroom. Who cares anyway, right? It's rotten stuff that needs to be replaced whenever I can convince myself that it will be worth the effort. It seems everything I attempt to change circles around to the place it was before I touched it. I'm not a handyman. I'm not a plumber. I'm not an appliance repairman. I'm not a very good caregiver either. John's will to live has nothing to do with me.

I made a vow to God that I would take care of him no matter what his condition would be. Now I'm wondering if I made a vow to keep him happy. I'm pretty sure that wasn't what I said. Was it part of our marriage vows to love, honor and cherish in sickness and in health? I'm not looking for excuses, or trying to opt out of anything here. I'm just trying to figure out how to care for him without losing myself.

I walked through the home improvement store that is stocked with thousands and thousands of items that are meant to fix something. Does anyone ever get it right? I want to get in my car and drive and drive and drive until I get to where I'm supposed to be. I don't want to look back or ever have to leave.

How do I stop looking at the things I love about my house and let them go? The weeping Japanese maple tree is greening up and setting buds. The Princess Diana clematis is poking up out of the ground, the daylily and the Asiatic lily are sending up shoots. The hibiscus' are gleaming beneath their dull winter coats, and there is a tiny bird's nest wedged in the arms of my old lady, crepe myrtle ready for new life. How do I walk away from it all? How do I do it? It brings out my anger over stupid things like Bandit dripping water on the floor I just cleaned. I'm angry at John for giving up. It's the pile of mail that I don't want but have to open and shred for identity protection. It comes every day, relentlessly, and never stops. Take it away! Take away the things that I love because I can't let them go. Tell me where to go because I don't know. Teach me how to walk away with grace, at the right time, and with wisdom so I can be free of my anger once and for all.

"Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him." James 1:12.

What are these trials and mistakes other than gifts? It would not be possible to understand God's grace without them.

The Fittest

Playing the role of John's caregiver has brought out my basic survival instincts. He is no longer my protector, I am his. At times I'm overwhelmed with the feeling of being devoured like a wounded rabbit in the desert with the vultures flying overhead. A constant barrage of on-air predators; reverse mortgages, cash for your home, a nice, little, gated, retirement community.

While trying to reign in that feeling, I searched the Bible for references on natural selection, even after all this time it's still what compels the human species to behave like animals. We have the right to bear arms so we can shoot each other for no other reason than a desire to make the news. The story of the great flood, when mankind had no regard for life, is the ultimate tale of survival of the fittest. God saw this evil in the minds of men and knew they could not be changed. That's not exactly what I was looking for. The flood was God's vengeance on man, not man's on man.

I drove to the park with a cup of coffee for each of us and a Thermos full of refills. I parked in front of the golf course so John could watch for players or enjoy the water flowing in the creek. It was too windy for anyone to be out on the course, but the sun was shining and he seemed happy. I read aloud Genesis chapter six from the Bible app on my smart phone. I told him I was searching for an explanation for this feeling I have.

I said, "You understand what I mean don't you; the feeling of being defenseless?" He nodded. I looked at his face and could see he understood it very well.

I have an obligation to care for myself and for John. Our basic needs for food, clothing, and shelter must be met, and beyond that my duty is to help others in need. I'm proud of the fact that our kids don't have to worry about us. They've lost their dad, they don't need the added burden of his daily care. I don't want anyone to have the burden of caring for me. Who does? That's what drives me now, my desire to remain independent.

The word fittest should be defined as the ability to adapt to the environment in which we live. That's still not what I was looking for. Why are there so many elements, people or circumstances sitting alongside waiting and watching for an opportunity to sweep in and take what you have? I am referring, of course, to those things that we've obtained through diligence and hard work. A thief doesn't own the right to protect what was stolen. Where does the sense of entitlement that is so prevalent in our society come from? When a person becomes too old, or disabled, or mentally incapable of protecting what they have is it an automatic unlocking of the door for the next in line to enter? It seems to be historically so, and something most of us do without thought for the loser. Consciously observing this phenomenon is unsettling. If I opened my front door and walked away from my house, everything in it would be consumed by someone. My house would be consumed by someone. I'm the defender of my little pile of consumable waste.

Survival of the fittest and natural selection doesn't occur with God because God does not change. We change and grow closer to Him. That is a natural occurrence that makes us stronger and gives us eternal life, but it cannot be achieved by defeating another person. Lifting each other up and giving to those in need is what God commands us to do. Why are there so many people who don't do those things? The simple answer: sin.

Yesterday was a bad day, full of bad vibes from Donald Trump parading through out state declaring his grace. I let a new stylist color my hair an unnatural shade of copper. The shocking price I paid for the service made my household budget blurry with tears. She commented on my goodness in being devoted to John. She wondered about my faithfulness; the sexual kind. Where do those questions come from? Is it so hard for people to do the right thing? The hard part is trying to figure out how to live this post-stroke life. I think I know what I'm supposed to do next. I have a list, and it starts with selling my house. In order to sell my house I have to make it ready. It needs minor repairs such as paint and new carpet. It has some major problems that I have learned to live with. There are cracks in the foundation that I have been assured by the expert are cosmetic only. Can I really trust him? The final say will come from the potential new owner's inspector. Can I do everything it takes to get the house to the point of sale then handle the rejection? A rejection would mean I could stay put. That's what I really want to do, sort of. I still want that little cottage with the perfect yard and beds full of flowers where I can putter around and grow old. I have an innate sense of self-contentment. I will never read all the books I want to read, or finish the art I want to create, or grow all the flowers I crave to smell. If I move I will take all of my baggage with me, so why move? Our modest house cannot be replaced for the price we would get from the sale. We have achieved our success. Anything new will be less than we have; less room, less comfort, less security. Why move?

Back to the start, I have to get rid of my junk. I went upstairs to empty the bookcase Barret agreed to take. It's the matching half of the piece he took when he first moved out. I'm having a hard time getting him to take anything out of his old room. I don't care if he throws it away, I just want it gone. I guess he can't do it either. I had a stack of banker's boxes ready to fold and fill, and a black Sharpie to label them. My theory was to cull the most treasured books that would fit in the allotted space. I resisted the urge to pull the final copy of the Tulsa Tribune out of its bag or to open the Newsweek magazine with the Oklahoma City bombing on the cover. I put them both in a box to save for later, it's history after all. I made two trips downstairs with stacks of books I planned to throw away. The rest are boxed up and ready to move, or store. I'll decide that later when the garage is full.

The closet at the end of the hallway upstairs is where I keep most of the tubs full of Christmas decorations. In the ceiling of the closet is a tiny opening with access to the attic. That small portal has saved me from becoming a complete hoarder since I can't easily fit through it. The only thing in the attic is insulation. Whew! I finally found a reason to celebrate the lack of attic storage. I looked at the pile of things I'm hanging on to and realized they don't mean anything to other people. If I gave them away there might be some interest, but nothing I own will ever be featured on American Pickers. Why do I have such a hard time throwing the stuff away? Is it because I don't have to? Is it because I don't really want to? I picture my clean, organized, minimalist environment and search for another empty box. It's a start at least, one box at a time.

God has graced me with the time I need to prepare for where we are going next. He has graced me with the power to let go of my emotional ties and to trust Him to guide me. For the rest of my life I will know that I am doing the right thing in the big picture. I will make mistakes, but I will grow stronger and wiser because of them and will be content with where I'm at. I will be ready for what God has in store for me. Be wise and be ready.