Kevin and I have lived all our married life with illness somewhere in the background. On the Tuesday before we were scheduled to get married, he was admitted to the hospital, into a regular room. The next day, he was suddenly moved in the middle of the night and his food and water was withheld. We did not know why until much later. It was because someone saw something strange on his heart monitor and was concerned that he might need surgery.
We were married in the ICU on Saturday. The pastor asked if we wanted to postpone, and we decided not to. The ICU didn’t change our plans. It meant we lived them out differently. Our guests gathered elsewhere and listened to the ceremony via speaker phone. Afterward, people who had traveled from out of town came to the hospital to visit one at a time.
Two days after our wedding, the doctor called me into the hall to tell me that the episode that the nurse had seen on the heart monitor was probably a heart attack. She kept saying over and over throughout the two-week hospital stay, “He’s a lucky man!”
Over the next 18 months, Kevin was admitted twice more with pneumonia. At home, he did four breathing treatments a day faithfully for several years. At one point the doctor put him on oxygen to try to keep him from having another heart attack. The insurance company decided that oxygen is not preventive medicine, so the oxygen is gone. Keeping an eye on Kevin’s heart is part of our norm. I am the “tiger” who speaks extremely firm words to doctors if his prescriptions are not called in on time. I am the tiger who gets on hospital staff and asks why he has only had two breathing treatments today instead of four because his labored breathing strains his heart. I am the tiger who asks whether he gets his doses of medication that he should have had while we were sitting in the ER waiting on his EKG–medication that could have helped his heart to function better. I am also the person who loves the nurses who sith with him and do all sorts of interventions to get his blood pressure down when it will absolutely not go down.
Kevin has had two surgeries on his wrist in an attempt to treat complications of a broken wrist that occurred prior to our marriage. When I heard the first doctor say, “I couldn’t get the plate out,” and then tell me that it would be necessary for a doctor in Indianapolis to shatter the wrist in order to remove it, I thought someone was going to whisk him away right then and do the procedure. I sat stunned, and the doctor sat silent. Finally I said, “So where is he?”
“Oh, he’s in recovery, and the plate is still there.”
I realized that we would once again live differently. Kevin chose to cope with less than ideal results and take a low dose antibiotic as a preventive. The wrist took several weeks to heal; and the second surgery two years later had similar results.
Kevin isn’t the only one who has had procedures and been hospitalized. I have had several procedures; and I have been hospitalized with bronchitis. When I was admitted, I could not speak and Kevin was not able to follow some of the things the nurses were doing without my permission. I sent him a lengthy email documenting my grievances on the night after my admission, and he encouraged me to file a complaint later.
I think the hardest thing for Kevin was staying home with our two cats, who were recovering from illness, when I had eye surgery in 2015. Kevin feels strongly that his place is to be with me when I wake from anesthesia. My parents accompanied me, and I was all right. His presence with the cats was necessary and meaningful; but to this day he feels that he should have been with me. Neither of us likes to think of why it may have been important for him to know how to be apart from me while I was being treated, but at some point it may be a necessary thing for him to have already endured this.
When a procedure has called for one of us to sleep elevated, we have set up what we call “camp living room,” in which he sleeps in his recliner and I sleep on the couch so that whichever of us is mobile and well can tend to the one who is in need. When camp living room finally is torn down, we rejoice over the fact that we can sleep beside each other in our own bed again.
None of this means that we never have fun. We do plenty of things that are enjoyable for us. But the breathing machines and sometimes the blood pressure monitor go along. And one bag is devoted solely to medication when we travel. We have learned to enjoy life while caring for ourselves.
Our experiences with camp living room are helpful as we consider the terror of having to cope with COVID-19 in the house. The virus is not an abstract for us now. It has visited the homes of people we know.
There are some medical devices (glucometers and blood pressure monitors) that speak readings aloud to us. Other devices don’t (pulse ox monitors). We can measure our heart rates via our Iphones, but there is no way to measure oxygen level reliably if you are blind.
On the other hand, we have lived together so long, listening to each other’s breathing, that we can both estimate fairly well what each other’s peak flow will be before I get out the meter, which is tactually marked. The cats also yowl and fight when one of us needs a treatment.
I pray with all my heart that this virus does not enter our doors. But I also feel that the life Kevin and I have lived gives me some things to share that may help others to prepare to care for self and loved ones if necessary:
It is crucial to know how to read symptoms and to know the point at which you must take your loved one to the ER. Be honest with each other about your love and need to care for each other. No one likes to go to the hospital, especially when they must do it alone. You will not be able to accompany your loved one into the treatment area.
Know how to communicate effectively, especially if your loved one is traumatized or unresponsive. Keep your own self calm and be as specific as possible in making your requests. Know that in this time, you will likely not get all of what you are requesting.
If your loved one is very feverish and not breathing well, understand that they may act very emotionally and irrationally. They may fight you about going to the hospital and even say things that are out of the ordinary. I once told someone I hated them because they hospitalized me while I was convulsing with fever. You must do what is right anyway.
If at all possible, draw up a living will or end of life care plan while you are healthy. A good plan will include your wishes for treatment if you are very ill and direction regarding who should make decisions on your behalf should you become unresponsive.
Kevin and I have a healthy respect for illness. We don’t necessarily feel ready for this virus. We do feel equipped to care for and love each other actively through whatever comes our way.
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