Day 6 – Last 6 Days Living With ALS

Monday, August 30, 2010. Where is the manual that tells you what to expect when you know you are losing your mother? Where is the person that comes around and tells you how it will feel? Where are the words to describe the way that you are feeling on this day that feels like you are taking your own death walk?

Since Taneka left at 4 in the morning, maybe I should have stayed up for the rest of the night. Looking back I should have. Instead of falling asleep for a couple of hours I should have never taken my eyes off of my mother. I should have crawled in the bed with her instead of reclining in the chair next to her. I should have groomed her body like I had every day for the past 15 months. I should have tried to make her wake up, focus and get better one last time. Maybe I shouldn’t have taken that long walk in the hot sun. It made my body exhausted and my mind calm. Did I have that right?

We woke up like the day before and I like the day before that. I didn’t know what to expect so I just paid attention and took it all in. Every day over the past 15 months that I left my mother’s side to take my kids to school or go to the store or for anything, my worse fear was that she would pass away without me being there. I felt like this was our journey and it was my duty to care for her. My job would have felt incomplete if I wasn’t able to care for her to the end. But what is the end? When is the end? How does it end? Then what happens?

My husband and father came in and shortly after so did the doctors and a pastor who has known my family for nearly 40 years, Bishop Nicholson. It was awkward for all of us. It felt so unnatural to me and unfair. I wondered why God didn’t take her without us having to go through this process. I thought for sure He would. But here were are and all I see are quiet looks from the medical staff. We were blessed to have the nurse from Saturday and the day before. It was unusual to get the same nurse two days in a row much less three days in a row. He was a male nurse with extremely long salt and pepper hair. He wore glasses and his wife had my mother as a patient back in June 2009 and he remembered stories of her. He was the most compassionate nurse we ever had. I can’t recall his name but he had a similar experience in caring for his dad who had lungs that were compromised and lived on a ventilator. He was the primary caregiver for his dad and his support to me and words of comfort were greatly appreciated.

They explained the process to us. Unplugging the ventilator is not just a one, two, three pull; they had to prepare my mother so that her body wouldn’t go into distress from the process. I was familiar with the drugs that they used because they were drugs that my mother had been on for the past 8 months for pain and anxiety but they administered them in a much higher dosage.

Before the machine was unplugged we all gathered around and held hands to pray. It was around 11 AM. Just remembering that moment feels like I was a witness rather than a participant. I was holding my mother’s hand and rubbing the back of it, I used to always marvel at how butter soft her hands were and today was no different. When we were done praying it was as if it were all on cue a medical staff pulled the plug. I replay this in my head over and over and over again and I’m almost at a point where I am convincing myself that this didn’t happen. But when the ventilator was unplugged my mother opened her eyes and looked directly at me!….

It wasn’t a long lingering look but it was enough for me to tell her what was going on. I told her that “we were unplugging her from the ventilator now and taking you off all of the machines to make you more comfortable”. I believe my mind was playing tricks on me because I swear she slightly nodded her head before fully closing her eyes again. In that instant a thousand thoughts crossed my mind…were we doing the right thing? Did I have a right to make that call? But over the past 15 months my husband and I came to the conclusion that when God calls you home, no matter what type of shape you are in or what type of machine you are on, He will bring you home. If it is not your time then He won’t let you in. It’s just that simple and that is what I had to tell myself. The power and the choice was never mine to make, it was His will.

Bishop Nicholson read one of her favorite scriptures, one that she always sent me away to college with, Psalm 27. After that I felt compelled to wash her feet. So I went to the sink and filled her basin with water. I took the soap and wash cloth and proceeded in washing her feet. Like a surgical partner, my cousin Donna was right there next to me without saying a word handing me a towel to dry her off. I then began massaging her legs and feet with lotion. She hadn’t been able to walk in 9 months but I was rotating her feet like she was getting ready for a marathon.
Once that process was done I felt like I had done all I could to prepare her for this moment. All of a sudden I became overwhelmed with the feeling that there will never be another soul on earth that I could or would call “mommy” again. In that instant I collapsed into her chest and as I sobbed I cried out “mommy, mommy, mommy, mommy, mommy” I don’t know how many times or for how long. It felt like a lifetime of mommy’s that I called her. Then like a baby in the womb when a light is flashed on the expecting mother’s stomach I felt something that I wanted to move towards. I was still calling her name but not as loud because I needed to hear. What was that? Who is that?

What I heard was Bishop Nicholson praying. I couldn’t make out his words but they were so soothing to my soul! I could feel my racing heartbeat calming down. I could feel my head loosing up. I could feel my tears start to dry. I almost laughed out loud!

I snuggled closer to my mother and started whispering into her ear. I began telling her stories of things that we did in the past 15 months. The experiences that we shared. The life that we lived. Some of the stories were funny, some were scary but all were blessed.

I had no clue what was going on but what I did know was that my mother was still alive. She was still alive in a process that the doctors said would take minutes. I stood up as if waking from a slumber and I looked at the clock which was nearly 1 PM and I looked at the oxygen levels on her machine and the numbers were low but not decreasing. I said “she’s going to be ok; she’s going to be ok. We can take her home. I want to take her home. I think she can come home. What do we need to get her home around her things to finish this process?” The nurse came in and he was very supportive and told me that he would get the palliative care team to come and tell me the next step to get her home. I was so happy! I knew she was a warrior and wasn’t going to go out quickly.

We started to bustle around the room. Bishop Nicholson bid farewell. He said something that made me pause; he told my mother “Jessie, looks like you may have won this race. I will see you again at the throne.” For some reason that soothed me like a loving touch will calm a child or a sermon will touch your spirit.

The palliative care team came in and they appeared to be surprised. I welcomed them as if I was welcoming them into our home and they were there for a visit. They went over the procedures for taking her back home. They would have to monitor her for 24 hours and she would be moved today to the palliative care unit. They went over the dosage of the medicine that I would have to now administer to her to keep her comfortable and everything was wonderful. I asked them to remove her trachea and they did. That was the first time in 15 months that I had seen my mother laying like herself without being attached to machines and things.
So the palliative care team left to get the transfer to their unit started and my cousin said that she was going to the gift shop to get some more toiletries since we were staying at least another night in the hospital. As soon as she left a short woman in her mid to late 40’s came in. She had on office attire, no white lab coat or anything. She said that she was an administrator for the palliative care unit and if I’d like she could take me on a tour of the facility which was in the hospital. I love real estate and I especially love home tours so I took taking a tour like going to a homearama. So I said “of course!” My husband came too. My father stayed back and sat down with my mother in the room. Before leaving I told my mother “we will be back just taking a tour”. I checked her vitals again and they remained the same as before.

As we were walking to the elevator the woman commented that my husband’s name was popular in Canada. She was Canadian and we talked about the French, food and culture. It was an interesting conversation.

We get to the elevator it was empty and by habit, you know it was like my house, I pushed 1. The lady reached over and pushed 6. I said “oh I don’t know why I pushed 1; I don’t even know where we are going”. She smiled and said “no problem, getting off 6 will be much easier.”
The doors open at the 6th floor. None of us moved to step off. The doors remained open and since this was still the ICU unit it opened up to the lobby that looked like all the rest EXCEPT, there was a baby grand piano and framed pictures all-around of babies. It was very strange. I asked the woman what was this and where was this? She said that it was the neonatal unit and when babies go home the parents gives the unit a framed picture of their baby. She never explained the reason behind the piano….
Then I remembered my cousin. I said “oh yea, let’s go down to get Donna. She’ll like to go on the tour too.” As I said that the doors slowly closed. We went down to the 1st floor and my husband and the woman waited outside the gift shop as I went in looking for my cousin. She ended up finding me and I told her what we were about to do “cool” she said. So we joined them in the hall and proceeded to walk down and around the corner.
Now, in the back of my mind I was thinking…”ok, why did she want to get off on the 6th floor when it’s oblivious that the palliative care unit is on this floor?” We didn’t go up we stayed on that floor. We had to make some twists and turns but never up….

We got to the unit and I noticed the drawings of butterflies on the ceiling tiles. She said that was for the patients when they came in laying on their backs so that they would have something pleasant to look at. She took us to the lounge which was like a family room. There was a TV, microwave, videos, cd’s, DVD’s, refrigerator, sofas and vending machines. There was art work hanging up that clearly was done by children but was very creative. It was cozy. Then she introduced us to the staff at the desk and said that my mom was going to be coming there that day. They welcomed us. Then she showed us the rooms that were spacious and had their own bathrooms. On our way out as she handed us a soda I asked “where will my mother go? All of the rooms are occupied.” She said “oh we will double someone up if need be but I believe someone is going home today.” That sounded reasonable to me so I said “ok, great!”
When we left the palliative care unit she paused outside of its doors and asked us did we know about the “healing garden”. Now this is my house, I couldn’t believe that there was a garden or anything about that hospital that I didn’t know about. Yes, the healing garden is a garden that some families donated to the hospital. She said it was very peaceful and tranquil. It sounded divine! So we agreed to have her take us there.
We walked further down the hall around a corner or two onto an elevator and down 1 or 2 floors. When we got off the elevator we walked down a long hall way that was like an art gallery. I commented to my cousin that this would be a great field trip for a school! She agreed. We then walked outside past valet parking. I remember looking up at one of the two buildings that lined either side of the street and seeing a huge shadow of a triangle. I am a member of Delta Sigma Theta Sorority, Inc. and the Greek letter for Delta is the triangle symbol. That triangle represents the word change. I just stared up at it as something so symbolic at that moment. We went into the building that was across the street from the building with the Delta symbol on it. We went past the reference desk and through a set of glass doors and back outside into the most luscious garden I’ve ever been in that was located directly in the middle of a city!

Every turn there was some sort of waterfall or fountain. There were green plants and a large variety of blooming flowers. There were different types of seating available from wrought iron to natural wood swings. My cousin pulled out her camera and began snapping all types of shots.
At some point the lady started backing up and said that we “could stay here as long as you like.” I want to say we said thank you but I don’t remember saying much at that point. I found a natural wood swing nestled among some blooming vines. I sat down on it and began swinging and swinging. It felt like it was the first time ever that I sat down. My husband sat down on the ground and just lay back taking it all in. Shortly my cousin joined my on the swing. That garden was built on top of a parking deck off of 95 heading south.

After a while my cousin says “I’m hungry. You know what I would love? Some cafeteria fries. You know I love good cafeteria food and the food here is pretty good so I bet their fries are good.” All you have to do is mention food and my husband will be all over that. So when he heard her say that he said “you know I am a little hungry too. I wouldn’t mind some fries either.” So we all got up and never looked back and hoped that we could find our way back.

We went back out, pass the valet and into the other building. My cousin said “I want to get some information about this area I think I saw some magazine or something at a desk over there. I’ll be right back.” Waiting for her made me take a closer look at some of the pictures on the wall. There was a gallery of black and white photos that were framed. The pictures depicted everything about life. There were marriage scenes, birth scenes, urban areas, suburbs, country, happiness, sadness, etc. I looked at the small metal plate that told who the photographer was. The name didn’t stick with me but the year span that all of the photos were taken did. The photos were taken from 1969-2010. That seemed odd to me because we were only in August of 2010 so I wondered why did this photographer stop taking pictures now. 1969 struck me as odd too because that was the year that I was born. Before I could give it more thought my cousin came back with some literature that she was stuffing into her bag. So we were ready.

We found our way through the maze that we came and that none of us paid attention to. We so happened to be passing the cafeteria too. We were just about to turn in when I said “oh wait, let’s go back up to my mother’s room and see if my dad would like something to eat too. He might be hungry.” So we turned down the hall got onto the elevator and went back to my mother’s room.

Because in January 2010 my mother got MRSA while in the hospital for pain control, whenever you went into her room you had to wear a blue gown. So we all grabbed a gown at the door and as I was tying my gown I was telling my dad about the healing garden. As a former florist I knew he would love that and as I was telling him, Donna got out her camera and began showing him her pictures. When I finished tying my gown I looked up at the machine that was keeping track of my mother’s oxygen levels. My heart dropped as I was forced back to reality. Her numbers had decreased considerably since we left at like 1PM, it was now 4 PM! Where did time go?

I looked back at my husband and father and said “this is it.”
Everyone gathered around. I was standing on my mother’s right side holding her hand; my father was standing on my right side holding my hand. My husband was standing on my mother’s left side holding her hand and Donna was standing on his left side holding his hand and my dad’s hand. We just stood there silent. The machine was doing a countdown. It was at 30 and steady decreasing. Then, all of a sudden, the back part of her bed moved up! What in the world? My husband is 6-6 300 lbs. and sometimes he can be like an elephant in a china store. So I said “Clarence? What are you doing? Why would you play around at a time like this?” We all stepped back to make sure we weren’t touching any controls. He said “I didn’t touch anything, I’m not on anything.” Donna confirmed that nothing was on their side. So we went back to the countdown and as it got down to 11 I felt like I was looking at the ball drop at Times Square for New Year’s Eve. It was a serious countdown and I could see her taking each of those breaths. Then it went down to 5-4-3-2-1. As soon as it got to 1 her bed sat her completely up like I used to put her bed in order to get her out every morning. It was the most astonishing thing that I have ever seen! Donna said “My God, Aunt Jessie said ‘I’m not going out laying down.’”

My mother was a pioneer in many things throughout her life. She lived her life making a change and making a difference. In her memory I will continue to do what I can do to fight the ALS fight. My strength is in being an advocate and a resource to other families. That is something that I did with her while she lived with it and it is what I will continue to do.

ALS is not an easy journey. Even as I write this I am constantly reminded that it is more common than not as I am made aware of mothers, fathers, grandmothers, grandfathers, sons and daughters that are being diagnosed daily with this disease.

On this day, Monday, August 30, 2010 at 4:10PM EST my mother went to her heavenly home. I lost my mother but I also feel like I lost a child. I cared for her as a mother would a child. But I’m not sure if she is the child that I feel I lost. I feel like the child that I lost is me.

Thank you for allowing me to share my last 6 days living with ALS. Upon finishing this I am realizing that once ALS runs through your family there are no last days of living with it until there is a known cause and cure. As long as there are people living with ALS in this world, then so am I.
God Bless!

Jessie L. Barnes ~Devoted wife, amazing mother, dedicated daughter, sister, aunt, compassionate friend, fierce businesswoman

Sunrise April 16, 1940  Sunset August 30, 2010