KLB Story

My wife of 31 years retired during the beginning of COVID 19 pandemic only to realize that the headaches she was having was caused by a noncancerous brain tumor the size of a small grapefruit. Upon discovery doctors suggested she schedule surgery before blindness, stroke or death.

We sought the best treatment available and was she accepted for surgery at Johns Hopkins in Baltimore, in May 2021. The surgery was considered successful.  The procedure went through her sinuses and removed 90% of the tumor in the front lobe of her brain.

To help with her recovery I made sure throughout this time that all the people that wanted to visit her could.  She had visitors from all areas of her life.  I didn’t want to keep them from seeing her nor them from her.  Many of the visitors logs I had signed sine this ordeal were blank pages.  Not many people come to visit the sick and shut-in.

She has not walked since then. Fluid filled the cavity in her skull and put pressure on motor functions.  She had a “g-tube” placed in her stomach to eat.  She lost the ability to speak, and the sense of smell. She has been bedridden since then.

We learned about the health care system if you are not on government assistance. She was sent to a nursing facility like a lobotomized patient. After a month and a half she was sent home.  I was not prepared for that.

She had bed sores and a machine that fed her a baby formula.  She had to be changed many times a day and monitored.  Her body was contracting in a fetal position.  Her hands becoming like claws.  She caught pneumonia and had to return to the hospital.

When she left the hospital, she a Fungal Meningitis.  This deadly disease had to be treated with a special anti-biotic which was not 100% effective on this unique disease.  She was sent to another nursing home for another month.  She came home but was taking 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 from fungal meningitis,” before leaving the ER.  A palliative care nurse told me she only expected my wife to live a few more months.  On her birthday I took a trip to the beach to clear my head.  It didn’t work.  During the Christmas holiday alone in the office, I started writing her eulogy and planned her funeral. I had her cell phone turned off.

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 and no consolation.  A few said the exact opposite of what could have helped.  COVID took the lives of many.  I lost friends during this time as well that numbed me. I learned that my daughter was not coping well and had some previous issues that became known now.

My faith helped me but not in the way most people talk about it. I wasn’t begging God to do anything but His will. I trust and love God. I knew He had her no matter where she ended up, in this life or the next. My prayer was for the household. How my adult children were going to do.

During this time, I found solace in playing and learning the guitar. It was something I always wanted to accomplish. I found out that it was also excellent therapy.  It took my mind off of my pain for every minute it was in my hands. It was a blessing through music.

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.  Some nurses at Doctors Hospital warned me that she might be getting better before transitioning.  I wrote a eulogy in November 2021.

We moved her to a nursing facility in Annapolis. She had a crazy old roommate that I 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. 

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.

She was scheduled to go back to the hospital and had the new surgery in January 2023.

When I arrived to see her after this surgery, her nurses and attendants were smiling in her room.  She looked at me and asked me bluntly, “did you pay the electric bill this month?

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 seeing her family in Poughkeepsie, NY. She said a white 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 why 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.

Bed sores gone. I had to hire an aide that could take care of her while I worked.  Had to leave my government job in lieu of a hirer paying contractor position.

December 2022

She can text and call people on her new phone. She is still bedridden and is managing the pain better.  There is no prognosis, no medical opinions, just follow ups, blood test and virtual visits to make sure she is still alive for the controlled substances prescribed for her. Sometimes when she coughs, I remember the pneumonia, but we have a routine now.

The pandemic has subsided not gone away in 2023. It’s been two years since she scheduled the surgery, walked or share our bed. I have been on the new job six months, received a raise, the daughter just got a new job and has become the best caregiver I have ever seen.  My wife had another surgery to replace the original shunt and put in another.  She is gaining mobility in inches.

I have been hiring and firing health aides that I pay for privately because there is a new culture of inattentiveness, laziness and indolence for everyone working today.  It has been difficult to hire someone to come to work on time, do what they were hired to do and to not slack when no one is watching. We had had aides, quit after one day in the house.  This is probably the direct answer to prayer of protection for my household. If you are not right, you are not welcome.

So why am I grieving?  I am exhausted emotionally. I watched her age. I listened to her and watched the progress. I buried her already. At the three hospitals and three nursing homes, I was always greeted by the receptionist, nurses and aids with the questions, “how’s the visit with your mom; or are you here to see your mother; are you her son? I had to speak for her. I had to make sure everyone did the right thing.  I had to pay the bills. I had to get the medicines and learn what they were for. I had to be the logistics guy, the transport guy, the husband. Her doctor told me that she is now a “patient.” Meaning, the psyche of a person in her situation, her psyche- the spoiled brat, the whining, manipulation, etc. Some of the way she acts is her new normal.  She likes being waiting on. I hope she will be able to get into her wheelchair by Christmas 2023, but only if she wants to.

June 2023

She has limited mobility the waist. The pain is concentrated below her left knee. She can now brush her own teeth.  She knows that she had an alternate reality.  She knows that she missed two years of her life.  She is able to use her now deformed hands a little more.  Her feet are don’t look that hot and toe nails have to be treated. She’s gained a few pounds. She critiques commercials and is trying to run things as she did before verbally.

March 2024

She is sporting a new hairdo. She is still bedridden, suffering from neuropathy and constant pain in her left side. She sounds like herself before foreign objects invaded her skull. She is still as strong in the faith as ever.  Hoping to walk again this year.

I am commended on a daily basis for taking care of my wife of thirty-two years. I feel like a fraud with each platitude. I am grieving. I am depressed. Playing guitar is more important to be than another hobby. It is a challenge to win.  It is an endeavor to focus positively on. It is a kinetic task that takes my troubled mind off the grief.

It has been better than the six (6) failed attempts at the therapy I have tried. I am functioning although at times not like I want.

I understand what Job may have felt with his three friends.

Since COVID I have been playing every Sunday at church.  I am thankful the Pastor allows it and me to sit. I would rather play to support worship than to sit in the raised pulpit and look over the congregation from a seat of piety. I served for five years as a pastor. Before this it was the worse time in my life.

But now, I am being blessed through music.  Using social media, I am practicing, singing and playing.  I found out that singing is always cathartic.  It is not natural yet, I am still fearful of sounding bad, or off but the challenge is still there. I am a risk taker.

"Life is either a daring adventure or nothing at all." - Helen Keller