Mom pictured with my sweet daughter, Chandler, after church one Sunday.
Disclaimer: This very lengthy post represents my journey of the last days with my Mom. There is healing power in putting the memories down on paper. Yet there is so much more that happened during this time. Perhaps one day I can include the full picture.
Summer 2016 was one of the worst summers of my life, in addition to the summer when my Dad passed away in 1994. The year started off with new friends and a new ministry called Bethany’s Rest. God knew the second toughest summer was headed my way and He surrounded me with some incredible godly girlfriends.
But before the summer arrived I received a phone call from my Mom in February, who was trying to tell me she was in the hospital because of a “pain in her neck.” She was talking crazy, which made me very nervous. Later I learned the ER had put her on heavy morphine, which explained the crazy talk. Mom had some heart issues and was rushed by a dear friend to the hospital. So in a way, it was a “pain in the neck” to be back in the hospital…one of her least favorite places. After a series of tests and new medications, she was sent home needing much rest. More on the effects of this hospital stay later.
In March, I had prepared a script for a historical video I was making for North Fulton Community Charities. With the video shoot completed, it was time to prepare for a 50th birthday party Russ, my husband was throwing me in early April.
Technically Russ was throwing the party but logistically me and my girlfriends were all over the details of the party. My Mom and our cousin, Gonny, planned to fly up together for the party. Mom was a bit nervous about traveling. What I didn’t know then was the new heart meds were affecting her health and creating new problems. Despite this issue, Mom and Gonny still came and I was able to show them Bethany’s Rest and our new apartment home at Avalon. It was a long whirlwind of a weekend. I was so grateful both Mom and Gonny were able to attend. Below is a sweet picture of me with Gonny and my Mom in red. My sister, Mimi, and her son, Conner, attended, as well. Mimi and Conner built the best playlist I’ve ever heard! With the party in the books, I started to settle into my new role at Bethany’s Rest.
A few days after the party, Mom shared that her protein markers had shot up. She had always fluctuated in the past so I told her not to take it to heart. In late May, Russ had a club trip to Miami. We enjoyed our first afternoon there taking a long walk on the boardwalk and eating lunch outside. Before dinner, I had received a text from my Mom saying she liked my picture in Miami and that she wasn’t feeling well. I encouraged her to call her doctor, which resulted in a text telling me her cancer had come back and that she might have leukemia, as well. It was devastating news. Ironically at the same time, my cousin, Stasja, from Brussels called me and we discussed the heartbreaking news. Stasja would play a pivotal role up until Mom’s untimely passing. With my Mom living near Orlando I made the decision to go see her. It was less than a 4-hour drive. I left Russ to spend the rest of the weekend with his colleagues only to find out that using my passport wasn’t going to get me far at the car rental counter. I called Russ and asked if he would drive me up to Orlando.
Shortly after arriving at my Mom’s place, I see she has a mini bowling ball for a knee. She had mentioned she was hurting but she never brought up the knee situation. She thought her knee issue would simply go away with time. So naively, I thought her not feeling well was more of a knee situation, not so much a cancer situation. Yes, even despite the doctor’s text. No matter how old you are you still are a child to your parent and denial is part of the survival mode. It wasn’t until after she passed away did I put all her ailments together that it was cancer attacking her body. I arrived on a Saturday and she was to have a port put into her chest on Tuesday so I decided to stay. The port operation went well and chemo was scheduled the next day. Little did I know this would be the beginning of the end.
On Tuesday, we walked into a chemo lab full of people in lazy boy chairs quietly receiving their chemo. Mom’s port area was red, swollen, and looked infected. It was double-checked by a head nurse, who cleared Mom for chemo. I watched as the nurse took out a very sharp stubby needle and quickly poked Mom in the middle of her port. Mom let out a shrieking horrific scream. This scream scared everyone in earshot. The port site had not been numbed. The combination of the swelling and the lack of numbing cream caused Mom so much pain her whole body shook violently for the next 45 minutes.
Not just a few minutes, 45 minutes.
The nurse blamed me for not applying the cream prior to this appointment. The day before Mom and I methodically went through her pre-chemo instructions only to find out later the nurse had given Mom the wrong instructions. You could tell the nurses were nervous. So much so they called Mom’s doctor who came downstairs and immediately admitted Mom into the hospital.
While the nurses calmed Mom down, I took her doctor into the next room and asked him to tell it to me straight. He said it didn’t look good. Her blood looked like a hurricane and that she would probably be in hospice within 8-10 days. Hospice? What? This was just poor judgment on the chemo nurses’ part, surely my Mom who I can now hear laughing while I’m talking to the doctor is not days away from dying?? Surely not?? My hands were shaking as I called my brother, Rick.
The blessing in disguise was getting Mom admitted into the hospital. The last four days at home were extremely difficult. She could barely walk much less sit down by herself in the bathroom. Ironically, 6 months earlier I had set up my bathroom with some handlebars for a surgery I went through. I ordered them for Mom.
Side note: it’s interesting that hospitals do not have more ergonomic solutions to help people help themselves use the restroom.
Having Mom in the hospital was a double-edged sword. It was great from the perspective of getting her hydrated and boosting her blood/platelet counts but it also let us know just how quickly her blood counts would drop.
From day one, my cousin Stasja from Brussels wrote me every day asking different questions, sharing positive notes for Mom, and encouraging me every step of the way. She touched my heart deeply during this time.
Mom was in the hospital for over 3 weeks. It was a cycle of transfusions that would last 4 days and drop again. Finally, when they had her levels up and no fever they discharged Mom from the hospital to go home with hospice. Earlier that morning Mom’s doctor came by to say goodbye. He wasn’t an emotional man so when he leaned over to give Mom a hug, I teared up. He knew this would be the last time he would see his “Lucy.” Mom had such a strong persona sense about herself that on the outside it was really hard to know just how sick and close to death she was. She actually signed her own hospice paperwork.
During the time in the hospital, my brother and I would stay with Mom 24/7. I would stay during the nights and Rick would stay during the days. Rick would encourage me to go home and take a nap but my anxiety would not allow me to leave for more than a couple of hours.
It was later when I learned that adrenaline was pumping through my veins the entire time giving me unbelievable strength to move through this emotional tornado. I was in this alerting state for the entire 29 days, which is why I was able to function with very little sleep. I was only aware of this adrenaline after Mom passed because I collapsed out of sheer exhaustion. I’ve learned you need to be a patient’s advocate because nurses are constantly walking into the room with orders, sometimes mistaken orders. Almost every nurse Mom had was fantastic. They brought so much joy into a dark journey. It made me wonder why they would choose to serve patients who most likely do not leave alive the majority of the time.
Although this was a dark time, we did have some beautiful moments along the way. Mom had a gorgeous view outside her big bay window. One day a double rainbow happened. It would be Mom’s last fb posting.
Another moment was when Rick was doing a crossword puzzle with Mom. The nurses tending to Mom were playing along. My girlfriend, Mary, was there to help relieve me for a couple of nights. During the game, Mary had ‘cheated’ and looked up the answer. This drove Rick nuts…making the rest of us laugh. Rick asked Mom for the next word and she struggled for the answer. Then the phone rings as if on cue. We start yelling “phone a friend.” It was nutrition wanting Mom’s menu but Rick asks them if they know a 4 letter word for … We are crying laughing, including the nurses.
Another fun moment was when our childhood pastor, who is paralyzed from the waist down, wheeled in by his wife with red dots on their noses. He claimed years of drinking had finally caught up to them. I fell in love with them all over again.
Another girlfriend/sister/Mom-like friend, drove down to relieve me for a couple of nights. She was going through her own dark journey losing her brother to cancer. We shared many similarities, struggles, hopes, and our faith. It was so comforting to have her there. She’s been critical to my well being the months that followed.
During the time in the hospital, several pastors from Mom’s new home church came to visit her. One of the visits was Burk Parsons from St Andrews Chapel located in Sanford, FL. Here’s a sneak peek of their conversation…
We gave Mom and Burk some privacy and waited in the lobby for them to finish. Burk joined us afterward with tears in his eyes. He said he had a maternal love for Mom and was crushed to hear this news. Even he questioned if Mom knew the status of her diagnosis because she would be Ms. Hospitality with anyone that visited with her. It was this comment that led me to a private conversation with Mom.
I asked Mom if she understood her diagnosis and we talked about some deep subjects that ended with us discussing where she would like to be buried. She said ideally it would be at St Andrews but knew how expensive it was. Thankfully, we were able to gift her with this desire. She teared up hearing our decision. Russ had already been researching the logistics behind the scenes and I had picked out a plot underneath the trees. It took a lot of courage for me to ask Mom where she would like to be but I’m so glad I did. She did not want to be near a tree in the shade. She wanted to be right next to the sidewalk in an open spot. I quietly reacted to this thinking why in the world would she put herself in such a non-cozy spot. I had to know so I carefully asked her why that particular spot. She said she wanted to be in a place where everyone would walk by her and “not forget her.” Aww, her response certainly brought tears to my eyes.
Mom and I had several historical life talks which I would record or write down. This video captured the origin of our names. Mom grew up Dutch but had a father who was influenced by the French. Take a listen:
After we signed the hospice paperwork, we waited for the non-emergent ambulance folks to pick her up. Thankfully, my Uncle and Aunt from The Netherlands decided to come a month earlier. They would be arriving the same night we would get home. Rick and I had already met with hospice at the house and set up her ‘bedroom’ inside a cozy room downstairs. Mom’s bedroom was always upstairs and even with all the knee pain, she refused to have us move her bedroom downstairs.
Yes, we Dutch women are proud people!
A friend from Atlanta had flown up for the day to spend time with me. I cannot explain how much it helped me emotionally to have people step into this horrific story. You have no idea the boulder you’re carrying until someone steps in and helps you carry it. On a daily basis, I was able to hold my composure until someone would ask me how I was doing. That question would always make my knees weak and bring immediate tears to my eyes but it made me feel so loved. This particular friend spent most of the day at the hospital with me minus a run to the grocery store to stock us up at home. She was incredibly thoughtful! Uncle Gary and Aunt Paula joined us a few hours after Mom was settled in at home.
The next 8 days were the most terrifying days of my life. No one explains how hard the next few days will be. I knew from the hospital her health would drop within the next 4 days. Even though I had asked a nurse what to expect, there is still a sense of denial as a child that surely this won’t happen to us.
What I learned is that hospice expects all the heavy lifting of administering drugs and communicating the patients’ health status down to the minute is done by a family member. Because we had so many people at the house, hospice continued to believe we were able to handle this situation. What they didn’t know was no one had the stamina to stay awake in the room with Mom.
When I asked to be relieved, I would still sleep in the same room but I would see the nurse nod off and the person relieving me would be doing some shut-eye, as well. So I would sleep when Mom would sleep but that became less and less as her lungs filled up with fluid. Mom would start coughing so we would sit her up and pat her back. I became so frightened Mom would choke. Hospice assured us she wouldn’t and continued to increase her morphine.
If you learn anything from this post do everything in your power to have morphine administered intravenously, not via syringe into a patient’s mouth. Mom fought me near the end administering the morphine to her via a syringe into her mouth and it absolutely broke my heart. I knew she needed the morphine but I hated giving her something she resisted so badly.
One night before she slipped into a semi-coma state, hospice and I had given Mom a drug that made her crazy, literally crazy. When I went to give Mom her hourly drugs she quickly pulled the bedsheets into her teeth. The harder I pulled on them the tighter she would bite down and put more of the sheet in her mouth. I started laughing. I kept asking Mom to stop but I couldn’t stop laughing. Soon the hospice nurse was laughing along with me. I told her I was worried she wouldn’t be able to breathe but she simply glared at me and pointed to her nose. I laughed even harder!
The sheer determination was amazing in her weak state. I saw how determined she was so I waited for her to calm down. This went on for about 5 minutes. The nurse caught a weak moment and was able to pull the sheets away. I tried to give her the regular meds and with pursed lips, Mom shook her head back and forth. The one time I had succeeded, she spits the meds out. Finally, after getting them in, Mom yells out “murder!”
Are you kidding me? I wasn’t sure if I should laugh or break down crying. Thankfully, laughter won. Knowing the meds would kick in soon the nurse and I sat back down. Finally, Mom was quiet and asleep when the fan light fixture above starts to make a noise. I quickly jump up to fix it when I see Mom’s eyes open. She mumbles something so I lean in thinking she is just saying I love you or needing some water. I ask her to repeat what she said. Mom said, “you didn’t succeed.” What? Succeed at what? Killing you? The hospice nurse and I are in hysterics. The next morning I shared this episode with Mom and thankfully she remembered none of it. Whew!! She even laughed a little listening to the story.
Medicine is a miracle but when it keeps you artificially alive it only serves the selfish who want to hold onto their loved one. I’ve been in this position before where I was told a respirator tube would keep my dad alive for 6 more months. My Dad told me never to allow the doctors to incubate him again so with that request I honored his wishes and he died 24 hours later. I was there with my brother when he took his last breath, which brings me to Mom’s last moment.
The hospice time at home escalated to 24-hour care within the first day we were home. Four days later they were moving towards taking Mom off 24-hour care and relying on just family. That was the beginning of my breakdown. I couldn’t do this by myself anymore and I really needed nursing care, not family care, nursing care. They allowed for one more 12-hour shift but after that shift they would take mom off emergency care.
Thankfully this last 12-hour nurse presented a strong case to keep Mom on round-the-clock care. It was that evening things got worse for Mom and we called an additional nurse who loaded Mom up with more painkillers. Mom started to slip off into a non-verbal state so I moved into reading her cues for when I thought she needed the sheets on or off, wet her lips with a small brush, or do breathing treatments while holding it by her nose/mouth, etc…It was in the morning they decided to move mom into their short-term care facility.
I knew from Dad’s passing that we had entered a no looking back phase. This was going to be the end. There was a SWAT team of nurses at the short-term facility, who came in to address our needs. And when I say our needs, they addressed all of our needs. Hospice is pretty amazing in helping the families through this awful ending. The dearest of friends came by who called my mother, Mom. They cried over her and thanked her for being a strong presence in their life. These same friends had already spent time with Mom in the hospital and were able to share with Mom all their memories face to face and hug. We always prayed with Mom in the hospital and instead of Mom letting us pray for her she would immediately start praying for all of us. I cannot talk about this without choking up. Here she was dying and she was praying for us…
The hospice room was a bit clinical feeling but it had a screened-in porch that was covered by trees and shrubs. It was cozy from that perspective. Mom was in a coma state at this point. This particular afternoon it was thunder storming. The previous week Mom had shared a story about how she used to be afraid of storms. Listen below…
So it was poetic that we were moving into her last hours with the thunderstorm clapping outside. We had a beautiful family moment when Mom’s brother and wife, our cousin and her children (all family from The Netherlands), and Russ and I all stood around her bed holding hands. Uncle Gary was holding Mom’s hand and I was holding her other hand. We sang a Dutch lullaby Mom had sung to us growing up. Uncle Gary and his wife, Aunt Paula knew the second verse while we all hummed along. The sky had darkened outside so much it felt like the evening in the room.
After we finished singing, everyone kissed Mom goodbye and proceeded to leave. I was personally surprised that everyone was exiting so quickly because I thought we were close to the end. But I was about to receive the sweetest gift in this horrific ending. Earlier that day my cousins were telling me how awful it was when their Dad passed. They called it the death rattle. As they shared their story, I was begging God quietly to please please do not put me through a rough ending.
My Dad had passed gently and I was very hopeful for the same with my Mom. So after everyone left I was sitting with Mom and Russ was sitting in a lazy boy chair on his phone facing me. He wasn’t watching me but I knew I needed some privacy with Mom so I asked Russ to leave the room. He went and sat outside the room in a small lobby. The nurses had encouraged me to “give Mom permission to go,” which I find offensive to the person dying. I refused to tell Mom you can die now when I knew everything in Mom was trying to hold on so I thought of the next best thing to say was, “God is going to take care of you and He is going to take care of me.” I kept repeating that over and over in between my tears of apologies while holding her hand.
There was a lot for me to be sorry about…I was sorry she was dying, I was sorry for administering the morphine in her mouth against her will, I was sorry I didn’t understand she was hot one afternoon and didn’t pull the covers off of her quick enough, I was sorry I didn’t have the port put into her quicker instead of pricking her arm up.
As I was crying, I started to see the signs of the end. I sat there quietly watching. If you’ve never been in this moment it is very surreal. It starts in the legs and arms and slowly moves up. When it reached her torso, she took a small breath and breathed her final breath. It was so soft and gentle that I hesitated to ask Russ to come back into the room. I certainly didn’t want to start calling family if I was wrong so I buzzed the nurse. Unfortunately, she was doing rounds and it was 20 minutes later before she came into the room.
It’s amazing how quickly the color leaves a person who has passed. Almost immediately her hands were white. After the nurse confirmed Mom had passed Russ came into the room shocked. There’s something about losing a loved one that never prepares you. You can be watching death take them slowly and still be shocked when they pass. I was shocked when my Dad passed but I was relieved when it happened to Mom. I had literally been with her 24/7 for 29 days.
Every day brought awful news, every day brought tears of anguish, every day brought me to my knees so in this final moment I was relieved that Mom was no longer experiencing pain and selfishly I was released from holding this gigantic boulder. I was at peace for her and for myself. I told Russ I wanted to wait for the funeral home to pick her up. I started to call everyone and inform them of the news. Some family members came back to say goodbye one more time, some said they wanted the lullaby song to be their final memory. When the funeral home courier arrived Russ and I helped prepare Mom for the gurney. I gave Mom one last hug even though everything in me knew she was gone. I was shocked at how empty it felt. It truly is amazing to me how the spirit fills up our bodies with life. Even though it had only been a couple of hours I didn’t expect her to feel so cold and empty already. The courier was kind in how he handled Mom’s body. It gave me comfort knowing she was in good hands.
The hospice center happened to be less than 2 miles from Mom’s townhome. I told Russ I wanted to walk home. Because Mom’s hypothalamus was failing the past month she needed the temperature in the room to be set at 60 degrees or cooler. It was the coldest summer I had ever spent in Florida. I craved a good long warm walk outside. It was almost 9 pm. On the way home, my Aunt & Uncle were eating dinner at Outback restaurant. We stopped by to see them and grab something to eat. It was the first time in a month I was hungry.
It wasn’t until the next day I noticed my bones peering through my skin under my necklace. I had been in survival mode. I still wonder what impact the severe weight loss and no sleep has had on my body. As we reminisced about Mom’s last moments at dinner, I found myself getting extremely tired. I had carried a blanket around with me everywhere I went because I was always cold. I pulled the blanket up around my shoulders and found my eyes getting very heavy. Now mind you, I never felt tired in 29 days with very little sleep, except for one morning. It was like someone had turned off a light switch in my body at dinner. Later I learned that I was running on adrenaline for the past month.
Many people after a week of staying by Mom’s side 24/7 said I wouldn’t be able to maintain that stamina but I truly didn’t have a choice. When your loved one is dying you rise up. I believe God infused a mammoth amount of energy into my system until it was no longer needed. At dinner, the adrenaline dried up. I was afraid to stand up in fear that I would collapse. Thankfully we drove the rest of the way home with my Aunt & Uncle and I slept on the couch in the room where my Mom had been just 24 hours prior. How did this all happen so quickly?
I’m amazed as I write this blog how much stuff I’m leaving out yet I’ve written over 4,000 words so far. One of the epiphanies after Mom passed was all her ailments were from the effect of cancer attacking her body. When I saw Mom on May 19th and her knee had blown up to the size of a bowling ball she told me it was her “bum knee she had hurt when she was 12 years old.”
Another ailment was when we moved Mom every couple hours in her hospital bed because her back hurt. For years she always told us how the multiple myeloma cancer sat right in her lower back and yet in the hospital I thought it was just due to laying in bed for several days/weeks. One afternoon after my brother and I helped Mom to the restroom because her knee had been washed out surgically and it left her lame. During this difficult process Mom would gently put pressure on her right foot so when we found out she had sprained her ankle going to the restroom, we wrote it off to a hurt ankle because she somehow twisted it. How bad could it be since she barely stepped down on that leg? Yet, it caused her severe pain. Strangely enough, I could stand in all the truth the doctors were sharing but as a child, I wasn’t able to face the truth of Mom’s knee, her back, and her ankle. They were all signs of the multiple myeloma cancer coupled with leukemia attacking her body.
This brings us to Mom’s Memorial Service. We tried to expedite the funeral within a couple of days so her brother could be there but their last-minute travel plans from The Netherlands prevented them from changing the itinerary unless they paid a couple of thousand dollars extra. We wanted Uncle Gary to participate in the Memorial and St. Andrews Chapel made it happen. They had Uncle Gary read Psalm 42, Mom’s favorite Psalm, in Dutch through a sophisticated recording studio. I hired a videographer who did a fantastic job capturing the event so my Dutch family could “join” us. Some of us, my stepsister, my brother, and I, spoke sharing our best memories of Mom. I had cried so many tears that month that I was able to get through my speech. I had a moment where I thanked the pastors who loved us during that month. A friend who had cut her vacation short came up to Orlando from South Florida to attend Mom’s service. Here is the picture she caught of me thanking the four pastors who were present for Mom’s Memorial Service.
And a clip of the actual eulogy where I was thanking the pastors…
I asked my friend and my best friend to help hand out orange roses after the service so folks could drop the petals on the gravesite where Mom was buried. I had no idea how beautiful both the gesture and the looks of it would be. Picture was taken June 23, 2016.
Mom’s requested verse on her headstone is Psalm 42: As the deer pants for streams of water, so my soul pants for you, my God. May I take after her example. If you’ve lost a parent you understand the profound impact it has on your soul. Don’t wait another day to let them know how special they are. Thank goodness I had 29 days to let my Mom know how much I loved her. Picture below taken October 22, 2017.