We have been through several medical crises. This is supposed to be a short checklist that will help anyone better handle these crises.
- Have a plan and stick to it. Before the crisis happens, you and your spouse need to talk about what to do if a crisis occurs. My wife and I have a simple plan: until our children are 18 years old, we are to do anything and everything necessary to keep each other alive so that we can be there for our children. That plan will cover us until 2032. Around 2030, we will probably revisit our plan. I know this sounds basic and straightforward, but please do it! I have stared in my wife's eyes as she scribbled "pull the plug." Having a plan made it so that I did not have to face this additional anxiety; she had previously made a decision and I was going to stick with it, even if it made her angry and caused her pain.
- Have several months of an emergency savings fund available. Financially, what would it take for your family to continue "as usual" for 6 months? EVERY medical crisis we have encountered has financially cost us significantly. Most recently, the crisis occurred after I accepted a new job, left my source of income, and just one day (on the weekend) before I started the new position. I was forced to call the company and not start my new job. Make this money difficult to access, but available within two weeks. I have had to work while going through a crisis and had the fortune of being unemployed. Believe it or not, the stress of going to work, going home, and going to the hospital made it so that I was lousy at all three. Talk to human resources about the Federal Medical Leave Act, do not work, and use the emergency funds. It may mean that you will miss a few vacations, but it will be worth it.
- Have a few thousand dollars of cash stashed in a drawar. In addition to #2, you must do this. You will need more money than you think. My mother-in-law has moved in as a nanny during two crises. While we did not pay her, the way she managed the home is different and her needs are different. Parking, fuel for the vehicle, eating at the hospital, sending the kids to activities to keep their minds off the crisis, etc all cost money. If you are frugal, change your attitude for this season; this is not the time of your life to watch where the money goes. This money will be gone faster than you can imagine. Do not think about the moeny, just let go. In exchange, there will not be incremental stress.
- Be ready to run out the door. For those who do not travel often, this is more important. I can grab a couple outfits, my travel toiletry bag, a computer and be out the door in under five minutes. Do you have a toiletry bag that is ready to go? Would you have to think before running out the door? If it would take thought or stress, then just keep a bag ready. Most people do that when expecting a baby, right? A crisis will be much more stressful than having a child (we have 7, so I think I am justified in saying this).
- Know your insurance policy. I have been at the hospital with doctors saying they have run every test they can think of, have nothing new to offer, and still do not know what is going on with my wife. They exhausted their resources, yet I wanted more. I attempted to transfer her to Cleveland Clinic, the second ranked hospital in the United States. Both hospitals approved the transfer, but the insurance company blocked it. The hospital was out-of-network and they would not work with Cleveland's rates. We were stuck. I have also had a policy that limited coverage to $250,000. We would have blown through that with one incident and been in bad shape if it was not for #6.
- Know your state's medicaid qualifications. I have had a healthy 6-figure income. One medical crisis changes everything in an instant. Set aside political views for the time being. Christ instucts us to care for widows, poor, sick, and orphans. If your crisis is like one of ours, instantly, your income will drop below the poverty level and qualify you for assistance (if you lose your job or even have a federally permitted medical leave of absense). Look up the state medicadid online. Talk to the social worker at the hospital (who may put you in touch with financial services). Your extended family does not need to know. For us, without Medicaid, we quite easily could have lost out home.
- Be the General Contractor. I did not say supervising physician for a reason and instead am using a construction analogy. A medical crisis can easily throw you into a completely unfamiliar territory where you are looking to experts for life/death decisions. You are not the expert, but you must be the decision maker who accepts responsibility for everything. Physicians are often gifted at getting a person through a critical moment. But for the long term, the medical decisions are YOUR problem. The physicians and nurses go home at night. Often the person making the most important decisions about the medical care never physcially touches the invalid, looks in their ears, or examines a wound. They rely on the workers for information. These workers pull long shifts, but I encourage you to pull LONGER shifts. I have ignored restricted visitation hours. I have sat with my wife for 40 hours straight, only to take an 8 hour break and return, and I have done this for many weeks in a row. My wife has 24/7 family coverage, and we rarely allow the staff to kick us out of the room. As a result, I knew she was having increased hearing loss DAYS before they will believe my observation and finally agree to perform a CT scan. I have seen changes in flud retention and the color of fluids being discharged. I know the changes correlate to the timing of a med change. My observations yield to better care. During morning rounds, the physicians completed discussing my wife's care plan for the day, yet when the nurse stepped into the room and I reminded her of one thing, the rounding physicians returned to my wife's room immediately and discussed her care for an additional 30 minutes resulting in a change in her care plan. Do not offend the the physicians, but do not be afraid to tell them NO or ask them to look into something.
- Accept help. People will offer to help. Meals, transportation, borrowing the phone, taking the kids on an outing, mowing the lawn, doing laundry, and a plethora of other tasks can be performed by other willing and able bodies. Permit these people to help. Do not feel like you must turn everyone down, or accept all help, but evaluate what might make the next week a little easier.
- Make everyone learn sign language. My wife was unable to speak. Her lips did not move well with a ventilator. She could not write well. But, she could think clearly and was able to use sign language to communicate. This eliminated a great deal of frustration for everyone. She was able to speak to the physicians even when she couldn't keep her eyes open. Two of my children learned how to sign years ago, but not me. I printed out a chart and learned while she was in the hospital. I am slow, but learning to read sign language helped tremendously. Unfortunately, I learned the international standard and not the American standard, so we had some confusion for awhile. Pick one and make sure everyone in the family knows it. My kids used to practice signing road signs while we were driving.
Pay off your home. A home is a gigantic debt for many people. We live in a more conservative home than many people we know. There are times I wish we had something better suited to our desires, but in reality, what we have fulfills all of our needs. Most importantly, it is paid off. When a medical crisis occurs, I do not have to come up with a bunch of money for the mortgage. In fact, at the time of the most major medical crisis, we had less than $500/month of obligations, including insurance, utilities, property taxes, etc. This has made it far easier to survive each medical crisis. By now, I assume many people are saying there is no way they can afford paying off their home, saving 6 months of income, and putting a few thousand dollars in a drawar. I hear you. I also know that it is possible. We do not have cable/satellite tv. At many times, we have gone without cell phone bills (freedomphone.com). No home phone bill (just an internet phone for $3.60 per month). We have heated with wood. We drive older cars. I carry minimal auto insurance and do not repair body damage. Birthdays and Christmas at our house are far more conservative. We have gone years without a vacation. Minimal fast food, restaurants, or snack food. It can be done. In our situation, there was no other choice. Make some sacrifices and you will find you are spending more time with your family, which is a true blessing. You do not need to cut back as badly as I described (we certainly are spending more now). But make reasonable sacrifices and get that house paid off.
I want to append this point. Today, we live in a paid off beach house with a pool where we can walk just 600 feet to get to the private beach. It was a foreclosure and has taken work and is not the fanciest on the road. But this too is possible with a modest income because we have been free from mortgages. That interest adds up.
- Be prepared to die. This should be #1, but many of you would not have read this far if I did this, for you would think I am preaching. I do not want to die, but I am willing to trust the God who created me with everything including my last breath. This reduces my anxiety beyond measure. I am convinced that all my Lord requires of me is to believe in Him, that He is God, that His life, death, burial and resurrection made eternity in heaven possible for me. I will not take the space here to explain who Jesus is, why a loving God permits horrible medical crises, or why God's perfect plan would involve the death of His son. But if you would like to understand or argue, email me.
Be prepared to let your spouse die. This was harder than #11. Before I faced this moment, I thought I was prepared to let her die. A few times, I think I wished she was dead for our relationship was strained. But in reality, I was not.
The doctors and nurses looked at me, told me they were sorry, and indicated that the next few hours quite possibly could be the end of her life. There is no worse feeling I have encountered. I know my wife has told God that she trusts Him and has given Him her permission to end her life at any time. But that still was not enough. At 2 am, while I was waking friends and family to pray for my wife, I also had to pray to God and tell Him that I trusted His decision, whether she survived or not. I told Him that I thought His plan sucked, that I did not know what to tell my 7 kids, and I pleaded with Him for her life. At the same time, I had to tell Him that I realized I could not see the best possible plan for her life and so I would trust Him in spite of my feelings and desires. It was not easy, but fears and anxiety were replaced with sorrow, and some of those feelings were replaced with faith.
I pray this helps someone someday.