“…who knows whether you have come to the Kingdom for such a time as this?” Esther 4:14
A shudder slides down my spine as I sit on a polished wood pew. The organist is playing too loudly as the lector recites a list of names. The named are people who have died during the past year. It’s November 2, the annual All Souls Day remembrance at St. Patrick’s Catholic Church.
I’m here with my family because my Aunt Barbara is on the list. It’s not quite been a year since she’s died – November 8, 2015 – just six days short. “Wow, what a fast year!” I think. And then … “Wow! A whole year?”
I’m still mourning. I’m still fucked up by the events of the last few years. I still am not able to shake the knot in my stomach, spontaneous crying, not sleeping or jolting awake thinking I forgot to DO something, waiting for the call that she died … feeling like I didn’t DO enough.
Sounds like I need a bit of therapy, huh? I can’t help but wonder if I’ll ever get over it, though. I often second-guess what I did and how I did it. I doubt my decisions and rethink circumstances.
Esther from the Old Testament has helped me see that each of us has a purpose. Our purpose may change often. We may have multiple purposes at one time. Some purposes are huge – as in the case of Esther and some are smaller, like my case.
To sum it up, Esther teaches us to seek Divine guidance in times of difficulty; to be ready to relinquish ourselves and be decisive in speaking up for those who cannot speak for themselves.
If you aren’t familiar with Esther, she was very close to her Uncle Mordechai. He cared for her after her parents died. Esther became a beautiful woman and found herself in an unusual and important position. The King wanted to marry her – he didn’t know she was Jewish. Esther became Queen.
A friend of the King had a quarrel with Mordechai; for revenge, he asked the King to destroy the Jewish population. The clueless King agreed. Mordechai begged Esther to approach the King and ask him to spare the Jewish people.
Esther was afraid of the King even though they were married. Back in the day, there were some crazy rules that a person could be killed just for approaching the King without his permission. As Esther hesitated, Mordechai realizing she was the only hope for the Jewish nation said to her, “…who knows whether you have come to the Kingdom for such a time as this?” Esther 4:14
Translates to: Perhaps this is the moment for which you have been created.
Which means – God has given you a purpose and you need to get moving.
What does Esther have to do with me and Aunt Barbara?
Barbara, my mom’s baby sister was the spoiled, youngest child of aging parents. Her siblings coddled her and gave into her every whim – EVERY whim. She was a textbook spoiled child. Barbara was the most generous and most selfish person I’ve ever known. She was demanding and loving – quite a constant conflict.
Barbara married and soon discovered she was unable to have children. Consequently, her sibling’s broods became hers. Barbara was the fun aunt.
Holidays featured her famous sugar cookies. She taught us crafty skills like how to macramé, knit and crochet. We made candles, painted ceramics, glued pinecone wreaths and Christmas ornaments – a never-ending slate of 1970s craft projects. Board games and puzzles filled her house. She taught us how to play Yahtzee, gin rummy, every card game. She was the first person I knew to own video games – she was so cool.
My family took care of her when Uncle Bill died way too young at 53. Mom and Barbara were together every day. My children, nieces, and nephews were at Barbara’s house, too – being cared for, hanging out or doing chores like lawn mowing, window washing or even house painting when they grew older. They, too, learned many crafts and card games – the second generation of Barbara activities.
We joked that as much as she loved us she would never say those words. My children were demonstrative kids say “I love you” throughout the day. It’s just something we did and Barbara never did. My daughter would leave Barbara’s house and say “See you later. I love you” and her smiled response was “OK” or “Thank you!”
I soon found out why. Through this daily bustle, I hadn’t realized how truly alone Barbara felt until about 10 years ago.
While at a doctor visit after bypass surgery, the medical assistant asked Barbara if she lived with anyone. She said, “No, I live alone, I’m always alone, I’ve always been alone even before my husband died in 1989, I’m all alone in the world.”
Shocked, the medical assistant looked at me. With a tightness in my throat, I replied, “I’m her niece.”
We never spoke of that comment. We never talked about her loneliness or fear of the future. After the appointment, I made a mental note ‘be more attentive.’
Mom, 10 years older than Barbara, was in great health so when Barbara’s health began to fail Mom helped her as much as she could. Then, Mom died unexpectedly. After Mom’s funeral, Barbara phoned – she asked for a cooking utensil. At the time, I thought, “Why in the hell does anyone want to eat?” The food was her way of helping us cope with Mom’s loss.
I stepped into Mom’s caretaker role quickly. I talked with or visited Barbara every day. It wasn’t enough. Barbara was lonely. We didn’t understand the loss Barbara felt when Mom died. Didn’t realize the bond they shared as sisters. After all, I was still grieving for my mom. I didn’t have the energy to think about anyone else.
Being with Barbara wasn’t all labor, strife and doctor appointments. We had fun. She loved to buy Maid-Rite sandwiches, drive to a local park and eat while we watched the river flow. She would tell me stories of escapades with friends after high school and in Beauty School. Her eyes lit up when she mentioned her first love – not Uncle Bill. She talked about photography and traveling, how much she missed her dogs – her substitute children. She rarely missed a QVC cooking show and shopped for cooking utensils like it was a job. The Game Show Network was on her TV 24/7.
Country music was her jam. Many conversations revolved around the latest song on top of the charts. I began to understand when Barbara was missing Mom because she would talk non-stop about Keith Urban – Mom’s favorite. She would give me and my sister updates on country music stars like they were members of our family.
Through all this, I was a new entrepreneur trying to build a business. I was consumed with guilt for not wanting to interrupt my day with caregiving and not being available when Barbara needed me.
We have a special bond and I love her. The conversation with the medical assistant played in my head frequently. I knew it was my responsibility to take care of her. Be her voice, advocate. I became Barbara’s call in the middle of the night, at 5 am, at noon, at 9 pm. I tried to be there for her. All day, all night. My sister would be there when I couldn’t and my brother was always on standby.
As summer passed, Barbara’s health worsened. Dr. M. asked about end of life directives and she’d roll her eyes. Barbara refused to discuss the possibility she would not live forever. She was terrified to die. When I mentioned the topic, she would again roll her eyes; look at her TV and say – “Jeopardy! is about to start …”
By autumn, Barbara needed help bathing. Vanity was out the door. Just walking the short distance from her bedroom to the shower took most of her energy. We would have some wonderful talks during shower time. I guess when you’re naked there’s nothing left to hide.
When I was a little girl she would give me a wash cloth to hold over my eyes while shampooing my hair. When she asked for a wash cloth to hold over her eyes it hit me like a ton of bricks – we had switched roles. As I stood behind her and choked back tears she shouted above the running water, “Whatta ya doing back there?” Then we laughed because I was so slow!
She was a pain in my ass and I felt guilty for it. Then, I loved her so much because she was my extra mom; she was there for me my whole life. She wiped my butt when I was a baby and now it was my chance to return the favor.
Out of necessity, I became her legal power of attorney. I needed help caring for her. I couldn’t be there 24/7. I spent most nights talking to her on the phone or worrying if she didn’t call. She rarely slept more than a few hours at a time. We joked that she was a 78-year-old baby. Eat. Poop. Sleep. Repeat. All hours of the day and night.
I tried discussing assisted living facilities. When I brought it up she’d yell, curse and refuse to discuss it. She would look me in the eye and defiantly say, “Jeopardy! is about to start …”
I enlisted in-home overnight care. At first, she hated it. But she quickly grew to love the attention. She had people to wait on her hand and foot. I thought I had room to breathe. The situation morphed into a full-time job. I juggled which caregiver she loved, which she hated and of course who she thought was stealing from her … we fired many, many caregivers.
In a few short weeks, it was evident she needed round the clock care. Barbara was well off but not a millionaire. I managed her money as best I could, but $10k a month in caregiving fees was huge. Cousins badgered Barbara and me each time they visited about spending money. They worried her money would run out. Each time they upset her it took days to get her back to a sane routine and to alleviate the fear of money they placed in her. In Barbara’s defense, I told them that it was HER money and this is what THAT money was for – to spend it on HER care. If her money was spent, we could sell the house.
Barbara continually refused to discuss end of life issues or assisted living. I enlisted family members to discuss at least funeral plans with her; others to explain what a Do Not Resuscitate order meant. One by one we each struck out.
My daughter-in-law, Tameka, volunteered to hang out. Barbara loved her. They loved each other. Tameka was the one person who could make Barbara laugh. She was a bright spot in Barbara’s life. Tameka did an awesome job of trying to bring Barbara around to Jesus. She would read the Bible while she sat in Barbara’s room. She then would start a conversation about the passage she read. Tameka attempted to discuss end of life issues as simple as – buried or cremated? Through it all, Barbara would roll her eyes and say “Jeopardy! is about to start…”
Months and holidays marched by. Finally, with the help of her physician, we convinced Barbara to sign an Advanced Directive form. She only agreed to be resuscitated if ‘anything happened.’ I stressed that she needed to pray. She retorted that she prayed all the time.
In a flurry of stress and activity, 2015 was upon us. I was deep in helping plan my son, Travis and Tameka’s May wedding. My daughter, Evanne, was graduating from Boston University in May. My dog was scheduled for knee surgery in March and my business was growing at a healthy clip.
One health issue after another popped up for Barbara. We were at the ER or a doctor appointment several days a week. Heart, eyes, kidneys, cellulitis, bed sores, diabetes, high blood pressure, I lost track. I was treading water.
My family managed a wonderful trip to Boston for Evanne’s graduation – a much-needed respite for me. My sister took the lead in caring for Barbara for the few days we were gone. Inevitably, they spent a day or two in the ER – it was always something and mostly nothing.
Travis and Tameka’s wedding was beautiful and Barbara was well enough to attend. I asked cousins to manage her for the day. Being the mother of the groom and head event planner I just couldn’t worry about Barbara. She was excited to see the extended family of cousins – all of them cared for by her at one time or another in the lives. It was a nice change of pace for her – a whole day without Jeopardy!
A whirlwind of life changes happened quickly. The newlyweds moved to Denver and Evanne stepped into Tameka’s role for the summer. Then in the fall, the college grad moved to Washington, D.C. As hard as it was for me to become an empty nester in one fell swoop, Barbara was just as sad to lose her best friend, Tameka and her favorite baby, Evanne.
Her health declined quickly during the summer. The accumulating factor of multiple medical problems exacerbated by obesity became the perfect storm. My sister and I found ways to laugh about the strange circumstances in order to stay sane.
As she weakened it was increasingly difficult for her to walk to her car for appointments or even to the kitchen in her small ranch house for meals. Her quality of life was diminishing quickly.
The turning point came when she was admitting to the hospital for more problems related to congestive heart failure. She was there for less than 48 hours because she had the most amazing determination to get back home. Plus she refused to die – it just wasn’t an option.
I was worried she’d fall at home and injure herself or a caregiver or both. She assured me, “I won’t fall, I’m careful.”
I asked Dr. M to encourage her to go to assisted living on the ruse to get stronger. She reluctantly agreed. The way she looked at me, with fear and knowing, shook me to my core. I tried to make it sound cheery and fun. Silently, she rolled her eyes and looked at the small hospital TV hanging above her head … Jeopardy! was on.
Assisted living can be a wonderful option. I just didn’t buy it. It felt so wrong for Barbara to be there – so final. Family members helped move Barbara’s personal items, TV, and her motorized lift chair to the facility. The room was spacious with two large windows facing a garden and patio area. I wanted to vomit. As much as this place was supposed to make it easier, I was more upset than ever.
Barbara’s routine didn’t change much. She still watched The Game Show Network 24/7 and complained about the food at the facility. She ate dinner in the dining room a few times and then refused to leave her room. A bright spot was BINGO two afternoons a week; she participated a few times.
Assisted living had very limited assistance and I feared she wasn’t getting proper care. Barbara fit the criteria. She was semi-mobile with her walker and the CNA’s wheeled her to meals in the dining room. She mostly needed help bathing. But she refused to do any of it.
Within two weeks I was summoned to the facility director’s office. The director, Pam, a woman who imagined she was the consummate professional struck me as someone trying to play a role. I decided she was mostly clueless and that lead to rounds of sparring related to Barbara’s health and happiness.
I understood the facility had quality measures to reach. Working in health care for a decade I’m quite familiar with how the system works. Barbara was throwing CNAs in a tizzy multiple times a day. Her stubbornness was at an all-time high and she refused to cooperate in any task – including eating.
I came to the conclusion that I was going to make Barbara as happy as I could. I figured her health could hold out for a year or two – so what was the harm? I smuggled in McDonald’s cheeseburgers on a regular basis and brought her Dairy Queen Blizzards on demand. It was easier to give her what she wanted than to fight with her and it kept my guilt at bay.
We joked about the employees trying to take care of her. Just like at home, she loved some, hated others and trusted none of them. I saw a change in her. Quite a bit more forgetful and markedly weaker; she had been in assisted living less than a month.
I was at the facility more hours than with her at home. She was content at home and enjoyed her time with her caregivers we created a great team suited to Barbara’s personality. It never happened at the facility – she never settled in and constantly asked to go home.
I prayed continually for guidance, strength, patience, and love. I could feel her fear and her belief that she was alone in the world showed in her eyes.
Her dementia worsened – just enough to drive me insane. After being with her for three or four hours, I would leave the facility in the evening just to arrive home minutes later to a phone call asking if I was stopping by tonight? When I explained I had just left, I heard the skepticism in her voice.
My cousin visited for 20 minutes one afternoon. He proceeded to tell the family Barbara was fine and didn’t have dementia and didn’t need to be in assisted living. I asked him to come back to visit the next day because she hadn’t remembered he was there …
Within days Barbara became worried, almost frightened. She asked the CNAs and facility director to call an ambulance – she needed emergency care. There was never a real emergency, but Barbara insisted she needs to go to the hospital.
Four or five times of this scenario in a week and the director called me to her office – again. I was annoyed and exhausted. I attempted to put on my professional mask. I wasn’t successful. I asked Pam to simply call the ambulance when Barbara wanted it and I would contend with paying for it. Pam would agree; she had quality measures to achieve. How would that look in her accounting of Barbara’s care? I understood the pressure Pam was under to perform up to standards – I didn’t agree with it. That’s one of the reasons I left the corporate medical field – it wasn’t about individuals any longer – just the numbers.
We agreed to disagree. I thought the conversation was over. As I stood to leave, Pam lobbed a grenade at me – she was kicking Barbara out! I was speechless. She handed me a list of nursing home facilities to contact. She suggested Barbara go to one of them once she was released from the hospital.
I was incredulous and relieved at the same time. I didn’t know what to do. I stuffed the list in my purse and made a mental note to start on the list later. The ambulance arrived and my focus shifted back to Barbara.
Due to low blood oxygen levels, Barbara was admitted. She flashed me a grin with an “I told you so” look as they wheeled her to the elevator.
Hours and several tests later, Dr. M reported Barbara’s kidneys were stressed, she had accumulating fluid around her heart, and oxygen levels were dangerously low. She would be staying for a few days. Barbara looked great. She was exhilarated to be out of the assisted living facility. “I hate that place,” she confided.
The color had returned to her cheeks; she had eaten dinner and was anticipating Dancing with the Stars on TV. That was my cue to exit. I confirmed with the staff my cell number and admonished them to call at any time if Barbara’s situation changed.
My cell phone rang bolting me upright. Donna? At 7:15 a.m.? Barbara was being moved to ICU. My first question: why in the hell didn’t they call me during the night? Donna explained Barbara was moved to ICU after the 7 a.m. shift change. The head day nurse became alarmed at the night nurse’s report. She had spent a night in terror struggling to breathe. I guess the night nurse was never trained that blue lips, gray skin, and gasping for breath meant a patient couldn’t breathe … ridiculous! I was immediately pissed off.
A shot of adrenalin yanked me out of my stupor. I dressed as fast as I could and headed to the hospital. Donna would be there in an hour or two. I was completely, obsessively fixated on Barbara not being alone.
I don’t remember driving to the hospital. Fear swept over me. I knew this wasn’t good. I headed in the back door of the hospital and took a back elevator mostly just for employees. Working there for many years, I was able to bypass the public areas it was faster.
I reached ICU and tried to remember which room number Donna gave me. The physician on duty saw me hesitating. She confirmed I was looking for Barbara. We introduced ourselves and shook hands.
Dr. H described the situation – almost exactly as Donna had. She explained the prognosis was very dire. She kept her comments vague on the premise Dr. M would tell me everything I needed to know. She did explain Barbara was very agitated at the moment and it was due to the large C-Pap mask covering her face. Dr. H assured me once her oxygen levels were higher she would relax a bit.
I asked if Barbara was alone and Dr. H confirmed they had just left her room. I questioned why they left her alone if she was still freaking out? She looked at me blankly.
I hesitated at the curtained doorway; my life with Barbara ran through my head. A flower girl in her wedding when I was 4 … my first ever concert – Kenny Rogers – I now right? … running through the woods searching out pinecones for those 1970s wreaths … laughing at my lack of macramé skills … Mountain Dew and shoestring potato chips … Maid-Rites … her excitement when my kids were born … her sugar cookies … every day of my life.
I took a breath and held it, trying to calm myself. I mustered the courage to pull the curtain back. I’ll never forget what I saw next. Barbara was flailing wildly, clawing at the mask pressing to her face. She looked terrified.
I shouted her name and leaped to her bedside. It took her a moment to see me, the mask blocking her peripheral vision. I took her hand off the mask and held it. She focused her big blue eyes on me. Then asked, “Am I dying?!” with so much fear in her voice it made my head spin.
I lied. I replied, “I don’t know. The doctor doesn’t know – but I’m going to be here with you. You’ll be fine.”
She squeezed my hand as I held back tears. She just stared at me through the plastic of the oxygen mask, her eyes wide with fright. She meekly answered, “OK.”
We stayed that way for several minutes. Clutching hands and staring at each other. I didn’t know how to help her. I was terrified I would fail her. I convinced her to breathe deeply knowing she would feel better if she did. She relaxed a bit and fell into a restless sleep. I thanked God for the C-Pap mask.
For a couple of days, Barbara stayed in a semi-coma. The doctors gave her a bit of sedation because she was so agitated. Multiple tests revealed various conditions that created the perfect health storm. It was beginning to be obvious she wouldn’t recover. We waited for the results of a CT scan.
Eucharistic ministers brought her communion. We prayed while she slept. When she was awake she avoided any talk of priests, confession, God, dying, funerals. We had the local Deacon administer the Anointing of the Sick while she was asleep. I prayed for her to be calm and accept her situation.
I called my kids and told them Barbara was failing. Later, I walked into ICU and she was sitting up in bed – no oxygen mask, waiting for breakfast. I took the opportunity to contact my kids and see if they were able to Facetime with Barbara. I just had to let them talk with her. Gosh, I love the person who invented Facetime. At the end of her conversation with Travis and Tameka, they each told Barbara they loved her. And she returned the ‘I love you.’ I was shocked and surprised.
Next, we called Evanne. They chatted for a few minutes and discussed Evanne’s job walking dogs – Barbara loved dogs as much as babies – maybe more. When it was time to say goodbye Evanne said, “I love you.”
Barbara’s response, “I love you, too and thank you.”
We never spoke of it. There wasn’t a reason to.
The following day I demanded the CT test results so we could have a clear picture of Barbara’s situation. We had been waiting all week for results. To my surprise, Dr. M stopped by and said he was organizing a consultation with the cardiologist and pulmonologist. We would meet at Barbara’s bedside at 5 pm.
Finally at 6 pm each of the doctors had arrived. My cousin, his wife, and Donna were there with us. They had reduced Barbara’s medication so she would be alert. As we gathered around the bed, I held Barbara’s hand. Dr. M asked to explain the situation, Barbara agreed.
Dr. M give details of Barbara’s combination kidney failure, congestive heart failure, and reduced heart function. He very compassionately told her there was nothing more that could be done for her, but he would do everything in his power to keep her comfortable.
Barbara looked at each of us and simply responded, “OK.”
Dr. M addressed Advanced Directives with Barbara and asked her to remove the designation that she wanted to be resuscitated. Her reply, “But I want to be resuscitated if anything happens.”
We all chuckled a bit because she was stubborn and even at the end of her life refused to believe she was dying. Dr. M told her not to worry about it. They chatted briefly and she thanked him for helping her.
The three physicians asked me to meet them in the hall. We discussed Barbara’s misunderstanding of the situation and at some point, I would need to change the designation. It no longer applied or made sense.
I asked Dr. G, the pulmonologist, how long it would be before she would be gone. He looked at me and said, “Frankly, I can’t believe she’s still here. She has 15% kidney function, 20% of her heart beating and her lungs are about 80% filled with fluid.”
I gasped and then smiled. That was Barbara – the most stubborn person in the world – she was going to defy dying. Dr. M said it for me, “Well, she is very stubborn!”
Dr. G said, “I can’t imagine she’ll make it to midnight.”
After the meeting, Barbara was terrified. She was either awake shouting my name begging me to help her or asleep – there was no in between. It was horrible. Morphine was started to keep her calm. I was alone with her on Saturday afternoon and thought she was sleeping. I took her hand and whispered I was going for lunch and I would return soon. I said, “I love you.”
She opened her eyes and said, “I love you, too, Mary.” She didn’t speak again.
When I returned, Dr. M was there. He asked to increase Barbara’s morphine because she was agitated. I agreed. He reminded me that I was now Barbara’s full medical power of attorney. He asked to switch her order to Do Not Resuscitate. Choking back tears, I signed the order.
She fought until Sunday morning. I was holding her hand. My cousin and his wife were there, too. I hope she spent that time in the coma speaking with Jesus alleviating her fears and preparing her to enter Heaven.
Like Esther, I learned to be strong when I wanted to run. I was exhausted and frustrated and angry, but I put that aside and put Barbara first. I learned how not to be afraid to speak up with questions when something doesn’t feel right. I learned to speak my mind. My purpose was to be an advocate for Barbara. To return the love she gave to me and to help her get to heaven.
I learned much in 26 months about caregiving, patience, advanced directives, and DNRs, but immensely more about the spiritual end of life decisions. I learned how important it is to be open and honest about your fears so family and friends are able to help. I learned how important it is to have candid conversations about end of life wishes. Those are tough conversations for sure, but it’s so much harder without them. I learned to rely on God’s protection, much like Esther. I believe God saved Barbara like he saved the Jewish nation.
I learned God calls us daily to step up and advocate in all sorts of ways and all manner of circumstances for those who cannot speak for themselves.
What is God calling you to advocate for?