Barbara Johnson

April 1st, 2024

To the Friends and family of my amazing mother, Barbara Johnson.

I wanted to give you an update on Barbara Ann (aka Ditta) as we just celebrated her 84th birthday. I’ve always known Barbara to be an active person. Whether it was raising a rambunctious son and driving me around to sports or the beach, running the office at St Michaels Church or following her passion of primary grade education she was always on the run. Barbara even went back to school to earn her master’s degree. I was amazed at her determination to accomplish this feat in her 50’s.

Throughout her life my mother has always been involved with the community, spending her free time involved charities helping those in need like Casa Teresa, the guild, SPIN and more. She has worn many hats in her 84 years from participating in multiple charities, working as a tutor, to a wedding coordinator and more. All the while being a devoted mother and wife.

She has also bed a dedicated parishioner of her Church Our Lady Queen of Angels (OLQA) in Newport. When i was a student, an Altar boy or setting up coffee and donuts, she was always there.

When my father passed away in 2006 from a very quick and aggressive cancer, we were left spinning to pick up the pieces and figuring out how to move forward. We did not expect to lose Kent at the early age of 66. He passed in 10 days from the time he was admitted to Hoag Hospital. With the passing of her husband of 33 years my mom and I started a new chapter in our lives.

At the time my father passed, I was living in Las Vegas working in construction. Despite my mom’s protest, I left and moved back to California to be close to her. As an only child it was just now her and I. Barbara and I got into the routine of seeing each other every weekend. I believe we became closer in this time than we had ever been. Our visits included lunch or dinner and errands and often tech support for the TV or her cell phone. Occasionally we would walk the island with her longtime friend and my dog Shadow.

Barbara spent the next several years working for the Westminster School District as a substitute teacher and loved being around the kids. If that wasn’t enough, she also worked for Sylvan Learning Center. It gave her purpose and kept her moving.

Then in 2019 COVID Changed the world. Her substitute teaching had kept her sharp and moving and she had an active social life. Busier than mine I hate to admit. That came to an abrupt halt with COVID and the isolation that came with it. Isolation from her friends, her work, my wife and kids and me. To this day, despite everything going on, she still remembers when “That Thing” happened and her friends came to sing happy birthday to her while standing outside her front door. We still did our best to get out of the house and see her in masks whenever we could. Like all things in life COVID eventually passed, however I could see the isolation and the world being shut down started to slow Barbara down. I told myself this was just normal for her age and all things considered with the world, I had nothing to worry about.

Over the next few years, I saw her continue to slow down and be forgetful. She lost the will and the opportunity to start back to substitute teaching partly because everything went online, and she just wasn’t really capable of doing that. I suggested for several years for her to move out closer to me in Corona, but she constantly insisted that she was fine and wanted to remain independent and most importantly in Newport Beach. She loved the beach and loved being close to her friends and church. She is her mother’s daughter and still stubborn to this day.

I continued to make it a point to see her at least once a week and usually more than that. We would also text daily. Texting became my way to check in on her and make sure she was still doing ok. Living in Corona and working in Carson made it difficult to see her during the week but we typically went to lunch on Sundays to Mi Casa (she loves her Mexican food) or ran errands.

Barbara found a new love, Zumba, and joined several classes for seniors at the Oasis Senior Center in Corona del Mar. Not only was she getting exercise she was also making new friends. The “Zumba Girls” as she called them (the oldest at the age of 93) had lunch picnics, movie nights and birthday parties. It made me very happy that she was in the group. She went 3 days a week to Zumba, and it gave her purpose to get out of the house and be happy.

Things appeared good, or so I thought, until this past November of 2022.

Barbara and I had missed several Thanksgivings in Santa Cruz because of the Pandemic and a year of torrential rains and closed roads. Thanksgiving with her brother, sister-in-law and their nephews was a tradition. We decided we would make the journey north and were both excited about the trip. However, the trip did not go as planned. While Ditta was doing well in her home and her area (so we thought) which she has lived in for so many years, leaving that familiarity showed that time had taken more of a toll than I had previously thought We ended up cutting the trip short, Barbara was anxious, stressed and very confused being out of her element. She also didn’t know where she was and thought she was with a lot of strangers and really it was only her brother, his wife, her nephews and me. She didn’t really eat and was very uncomfortable.

Since that trip my wife Amber and I really dug into Barbara’s health to see what the cause of this behavior was. I spoke with her Dr. so often that she knew my number and we had several long talks about Barbara and her care. Through these conversations I was able to find out that Barbara had the beginning stages of Vascular dementia, that the diabetic neuropathy in her feet was continuing to progress and like her mother she was suffering from hereditary liver disease.

Her Dr. also believes that Barbara may have had a TIA at some point. However, the only way to find out would be an MRI. Haha, as you all might know, she doesn’t do well in small spaces and on the couple times we tried to get her in there she looked right at us and said “nope”. The entire time, even to this very day, she says she feels fine and can’t believe it.

Barbara's cognitive ability continued to steadily decline. She would forget simple things like who she spoke to, when she and I spoke last and simple day to day things. Things like the TV remote and her cell phone became extremely challenging. What we did not know at the time is that she wasn’t taking her meds properly either. She was so convincing when we would ask her about them, and she was with it enough mentally at the time to hide it from us.

We kept a close eye on her and in March of 2023, we concluded it was time for her to stop driving, for her safety and the safety of others and the nearby curbs. When I asked her about a few new dings on her car she was shocked to see them there and had no recollection of how they got there. With the help of the social worker at the Oasis center we pulled her privileges in the kindest way possible and set up a shuttle service for her to continue her Zumba group and everything that went with it. Some of the Zumba girls would even take her to lunch or other events like birthday parties. They have been amazing friends to Barbara. I would come down on Sundays to take her to mass and go to dinner afterward.

On Friday, June 9th, 2023, I got the call no child ever wants to get. One of her good friends called me from Barbara's cell phone while I was at work to let me know that Barbara had missed a step and fallen. On the way down she hit her head on a coffee table. She was alert but bleeding profusely. She had called 911 and the paramedics were taking her to Hoag Hospital. It might have been one of the worst things I've ever had to experience. At least that is what I was thinking at the time. Seeing my mom in an ER bed with gauze wrapped around her head and more blood than I was expecting is something I will never forget. Thankfully by God’s grace it ended up being only a flesh wound (insert Monty Python reference). After a 4 cm row of stitches and a CT scan we were cleared to leave the hospital. Barbara came home with us to Corona from the hospital so we could figure things out.

This was an eye-opening event. Half an inch in the wrong direction and this might have been a very different email. While staying at our house, which she was very familiar with, it became very clear that Ditta’s days of living alone were done. As much as I would love to have her continue to live with us, at this point her care goes beyond what we are able to provide. Having her here with us for over two weeks showed just how far her dementia had progressed. During her stay for a short moment, she forgot who I was, and she could not remember where we had gone during the day or what we had done.

Kaitlyn, my oldest daughter, is an LVN who spent her first few years out of school working with dementia and geriatric patients. It has been a huge help to manage everything going on. I see Barbara through my heart first and my eyes second and have been wrestling with her decline. It breaks my heart every day. Kaitlyn has been very helpful in helping keep me grounded in the reality of the situation and helping to prepare me for the future.

I wanted what was best for Barbara and I took the several weeks off from work at this time to find out what our options were. Through A lot of research and visits to facilities close to us, we came to find that we have a top-rated Memory care facility right in our backyard, Brookdale Senior Living Corona. This residence is dedicated to memory care senior living. It is highly recommended by both the community and the Dr's and health professionals I’ve spoken to. The entire facility has a maximum residency of 45 people.

I visited the Brookdale facility several times before making any decisions. Our house is also very chaotic with everyone working different schedules. At Brookdale, she has free roam of the facility, the activities and lots of new friends to interact with. There are always several staff (nurses and caretakers) on shift 24hrs a day. The staff, including the director and senior nurse, know every patient by name.

Barbara has been at Brookdale since July of 2023, she has her a nice bedroom and bathroom which is big enough for her bed, her mother’s chair and a dresser and desk. She receives 3 meals and 2 snacks daily, they have laundry service and a room cleaning once a week or as needed. They have a movie theater, salon, activity and art centers, a central courtyard and big outside space. There are no set visiting hours, so we can visit at any time.

I switched to a new Dr. since her old Dr. retired at the end of last year and he is one of the top Dr’s in Riverside that specializes in geriatric and memory care and is associated with the facility. The Dr. makes regular visits to Brookdale to see his patients. Brookdale also manages her prescriptions and refills. They have a nurse’s station where she can have blood drawn and vitals checked as well. Of course, everything will run through me regarding her care.

I truly feel that this is the best option for her and her health at this time.

In September, we discovered that Barbara had come down with a urinary tract infection (UTI), not uncommon but with dementia not good either. I found out through speaking with her nurses, any renal infection is like gas on a fire with dementia. We quickly treated it with a prescription from her Dr and we thought we were in the clear. Her mental state went back to her baseline behavior. Two weeks later I received a call from the nurse at Brookdale. She said that Barbara was not feeling well and they wanted her to have her checked out in the hospital.

Amber went to meet Barbara in the hospital, she seemed fine at first but quickly spiraled. The UTI we thought was under control and had been showing no signs of remaining had festered in her body and Barbara went septic. It took five ER nurses to restrain her and put her into a bed for treatment. She was literally the opposite of herself. We spent the next 7 days between ICU, the Step-Down unit to general care before she was eventually released. These seven days were excruciating for everyone. Barbara had no idea who I was and even threw me out of her room at one point. She was on painkillers, Anti-anxiety meds, and an incredibly high dose of antibiotics. I was asked twice daily about Barbara’s DNR orders and advance directives. We almost lost her several times.

It was not her time to go, I’m not sure if it was her stubbornness or simply her will to live but she managed to get better and returned to Brookdale. Her new home at Brookdale is comforting to her and familiar. We were very lucky with the expertise of the staff at Brookdale. They took incredible care of her during her recovery. Sadly, Barbara was never the same. The stress of everything on her mind and body took its toll. We fought daily to keep her blood sugar under control as well as her blood pressure all the while keeping in mind the limitations of medications, we had available with her kidneys.

Things seemed to be getting back to the new normal for the next month or so. At least so we thought. Barbara was back and active in her community, doing arts and crafts, playing bingo and doing her daily walks around the facility. Unfortunately, this ended up being short lived. I received a call from the head nurse at Brookdale letting me know that Barbara wasn’t feeling well and wanted to know what I wanted to do. She asked if I wanted Barbara to go to the hospital and with the recent events, I asked her to be sent.

When I got to the hospital, Barbara was delusional. I was a total stranger to her. After several tests and extensive blood work we discovered that Barbara was septic again. She had a blood born virus stemming from her kidneys and a case of MRSA. Her blood sugar was also off the charts despite being on a strict diabetic diet. We spent the next 6 days in ICU and step down before essentially being pushed out of the hospital because of her mental state. While in the hospital Barbara had a babysitter with her because they couldn’t keep her comfortable. She was violent/agitated at times and just generally confused. Despite being extremely ill the Dr. felt it was best for Barbara to be released back to Brookdale to recover under the care of Hospice because the stress of being at the hospital was hindering her recovery. I truly thought this was the end.

For the first few weeks Barbara could not walk and was confined to bed because she of her infection and being contagious to other residents. We were told to be prepared for the idea that my mom may never walk again. She was so weak and lacked any leg strength. Her level of care went from minimal to the maximum that the facility could provide, as well as the cost of care. Her nurses prepared me that this was typically end of life care at this point and I should be prepared to make the necessary arrangements. Amber and I went to see her daily, most of the time she was sleeping but we got to interact with her a few times over the next 10 days. She was tired and confused, but peaceful, being back in her place and around familiar faces.

Amber and I came to see Barbara the second Saturday when she had been back at Brookdale and when we were let in the front door, we were warned that Barbara’s mood had changed, and we should be prepared. When we walked into Barbara's room, we found her standing in the bathroom getting ready for her day. Despite all odds, my mom was back. At least what still remains of her. She uses a walker now and has become very mobile and she feels safer using it, as do we. She is also on Insulin which her facility cannot provide for her. Brookdale made an exception for her, and this is why she remains in hospice care. The hospice provides her with insulin. We have been very lucky. The other alternative would have been a group home or a skilled nursing facility. She is not in a place where we think she is ready for that yet, especially with how active she still is.

This brings us to the current day. Barbara is physically healthy and in good spirits. For the past couple of months, we have been picking her up on Sundays to spend time with her and we typically go to lunch or dinner. Her favorites are our local Mexican place, Rodrigos, or Islands for a burger and fries. Most of the time she remembers who I am, but she always knows that I’m someone special to her. Even if she doesn’t know why. She also knows my wife and her grand kids, although seldom what the relationship to her is. I expect this will continue as the disease of dementia continues to take her memory. It’s amazing to me that she remembers things from 50 years ago but can’t remember what she had for breakfast.

Barbara is still currently at Brookdale Corona as we figure out what the best path is for her happiness, comfort and security. However, with the additional costs of her added care it is becoming increasingly difficult to Manage. I simply want what is best her. I have set up this Go Fund Me in hopes of continuing her high level of care whether at Brookdale of modifying our home to bring her here with us and the necessary medical staff.

I feel like all this information is heavy so I would like to add some happy news. On 7/30/23, Barbara became a Great Grandmother. At the time of writing this she is 8 months old and we just spent several hours at Easter Dinner with Barbara and the other kids.

Michael