“When your life makes you think about death, the way you think about the day changes.”
I am a few years shy of retirement age but my wife had plans for what she wanted to do. I was looking forward to it. We only enjoyed six months of her retirement when my wife of 31 years realized that the headaches she was having was caused by a noncancerous brain tumor the size of a small grapefruit. Her headaches gave her cause to question what the doctor said. The physician had dismissed her reoccurring migraines. We went back to her older primary care physician and got a second opinion. This promoted a MRI and other test that revealed a noncancerous brain tumor the size of a small grapefruit brain tumor.
Upon discovery, the doctors of Johns Hopkins Hospital suggested she schedule surgery before blindness, stroke or death.
Walking with head held high and her legendary faith she had the surgery in May 2021. She didn’t want the conventional “open your skull up and dig around operation” that was standard. She elected to use the specialist the hospital had, and go through her nose. The procedure removed 90% of the nonmalignant tumor.
The first surgery took ten hours. It lasted longer than they thought it would. It was supposed to be less evasive. Her health declined. They had to do a second surgery.
After thirty days in the hospital they moved her to a rehab facility we chose. Several of the rehabilitation places we looked into seemed only like good places to die.
With time against us we found one that actually had a rehab staff.
She looked like a lobotomized stroke victim. She lost the ability to swallow and had a feeding tube installed. The G-tube is not sexy as it sounds. She had a private room. She was in room near a window oblivious to the world.
She lost the ability to speak, and the sense of smell.
We started learning about the health care system.
A month after being in the first rehab, I was informed that she had to go. The top of the line government health insurance plans only pay for thirty days in a calendar year.
At the end of June she was to be sent home. I was not prepared for that.
She caught pneumonia so the facility couldn’t discharge her in that condition. It gave me a few days more to get the house ready. I cleared and cleaned the guest room and made it a hospital room. The rental bed that was sent was broken so I had to wait for a replacement part. They tried to drop her off on the 4th of July but the holiday prevented it. The nurse that was supposed to come to instruct us on how to change bandages, administer medicine and use the device that fed her was going on vacation. I managed to plead with her to come and at least look over everything I had set up. She told me I could get help on YouTube https://www.youtube.com/watch?v=J66zizn8Pf0 for more information. I never saw her again.
We had a host of part time nurses and therapist come through once a week for the next month. I learned nursing. She had bed sores and my daughter and I worked to get rid of them. She had to be changed many times a day, and monitored. Her body had contracted into a fetal position. Her hands becoming like claws. She caught pneumonia and had to return to the hospital.
After a few weeks, she returned home. We had to restart the once a week nursing visits and the therapy again. This time a different company.
When she left the hospital she had fungal meningitis. This deadly disease had to be treated with a special antibiotic which we were told was not 100% effective on this unique disease.
She was sent to another nursing home for another month. She came home but was taken back to the ER at a different hospital where we discovered she had two blood clots, and pneumonia again.
The ER infectious disease doctor was overheard saying that his mother “had died in this very same hospital (Doctors) from fungal meningitis,” before leaving the ER.
A palliative care nurse told me she only expected my wife to live a few more months.
During the Christmas holiday alone in the office, I started writing my wife’s eulogy. I haven’t gotten over that yet. My daughter and I had a teary conversation about what if.
Every day was uncertain. I learned that friends are not prepared to help you when you are going through something longer than a few weeks. They were of no help to me and no consolation. A few said the exact opposite of what could have helped.
“God is the only help, my only comfort.”
Meanwhile, COVID took the lives of many. It was a strange time.
After that last hospital visit we decided to put her in a nursing facility instead of bringing her home again. They warned me that if the insurance didn’t cover it that it I would have to pay for it out of pocket.
She had a buildup of stuff in her mouth and the nursing home we had her in was a little better than the last but was still a holding place of the dying. She had a crazy old roommate that we worried might hurt her in her defenseless state. There was some light therapy and treatment being done there and her bed sores decreased.
She started eating regular hospital food that was soon replaced by my daughter and her friends bringing in food constantly. She got off the feeding tube but still had it in place. Some nurses warned me that she might be getting better before transitioning. I wasn’t listening.
A friend started a gofundme account for us. I humored him, appreciated the love —but I knew my wife would have a conniption fit if she knew. She was still not talking, walking or much of anything so I gave him the ok.
My wife, had touched many in her life and they gave. Friends and family that I didn’t know, knew gave. I prepared for the future, I hoped for not the one I saw.
I used the money to buy the best bed I could for a person in her condition. Getting rid of the horrible one with the wire frame. I got a custom ramp for her wheelchair if we ever needed it. We even had enough to pay for the first nursing home and medicine cost stay that wasn’t covered.
After a hospital visit, we discovered that she had been healed of the meningitis and could be scheduled for surgery to put a shunt in her head and stomach to drain the excess fluid. We didn’t know about this fluid. She had encephalitis. A fluid filled the cavity in her skull and had put pressure on her motor functions.
She was scheduled to go back to the hospital and had the new surgery.
Back in Baltimore.
This was an exercise I was familiar with. I parked the car in the familiar place. I walk across the street and now ignored the hospital security, not bothering to get the stupid sticker. I knew where the brain surgeries were done. I knew where the patient waiting room was. I knew where the nurses station was. I knew where the ICU was.
I prepared for the outcome.
When I arrived to see her after this surgery, her nurses and attendants were smiling in her room. They were laughing. The sound was strange to my ears. When she saw me she asked me bluntly, “did you pay the electric bill (PEPCo) this month?”
I almost fainted. I cry a lot now in remembering this stuff.
When she returned back to the nursing facility she was chattering and telling us of all that had happened in an imaginary world her mind had told her about.
During her time of silence, she thought she was a in a car accident that happened on her way from working in Poughkeepsie, NY.
She said a woman had totaled her care but she had a new one that was now in our garage. She wanted to make sure I started it up so that it wouldn’t deteriorate while it sat there. She also worried that maybe she shouldn’t have bought it. She didn’t remember a lot of things. She thought we had a cat and reminded me to make sure I didn’t forget to take care of it.
“She doesn’t even like cats and we never had one. “
She complained of constant pain in her hips, legs and arms. The care in the nursing home was not getting better so to make sure she improved we prepared to bring her home.
I purchased everything I could think of to make sure when she returned home this time, it would help. I had her cell phone turned back on although the number had to be changed.
It took her weeks to get over the fact that I changed her number. She was mad about it. Not realizing it was not being used for 15 months before I turned it off.
In 2023 she has had another surgery to correct the misplacement of the first shunt. They cut into her again but the recovery was better. She came home and has been improving very slowly.
At the time of this writing, she is almost exactly like she was before the surgery mentally. Physical therapy is ongoing. We are still feeling our way through.