Why women believe we must bear the weight of the world on our shoulders I’ll never understand; and I’m guilty as charged. We carry the world’s burdens in our hearts, careful not to drop a single one, feeling immensely responsible for their outcome whether we truly are or not.
There’s a visual image seared into my mind that haunts and follows me when I am alone. I’m walking on a road, swimming in the ocean, or climbing a mountain and I have the person or problem literally strapped to my back. The more people and problems, the more piled on and on and on until I’m falling on bloody knees, drowning under the waves, or hanging on the side of the cliff with nails dug deep into the dirt wall that presses against my sweaty face.
Even still, I won’t stop. I just keep going…and going…and going reluctant to ask for help. I smile anyway. “I’m fine,” anyway. “It’s all good,” anyway. It’s not good and I’m not fine. So I retreat, slipping into the shadows of life to avoid the fronting, fake smiles I wear like a pro. I go deep into my hiding place until I’ve slept, regained train of thought, cried, journaled, or whatever it takes to breathe again. Only then I step back into the daylight, return texts, messages, phone calls and resume whatever normal looks like…until the people and problems heap on my back again and I break under the pressure, again.
Not so with Nana. She has always been very vocal about her needs. There’s no ambiguity of where she’s at in life and her outspokenness is kind of a family joke (in an endearing way).
However, stating a need and asking for help are two different things.
Nana is one of the most strong and strong-willed women I know. For 32 years I’ve called her MacGyver and watched her sew torn luggage with dental floss in the middle of the airport; foster over 60 dogs with her husband; and throw together a dinner for twenty in less time than it takes most of us to drive to the grocery store.
When she moved to our city, I committed to helping her move in, get settled, and do life with her. We found great deals for nesting her apartment at consignment stores – her happy place other than garage sales. Two weeks in, she fell. For these past two years it has literally been one health crisis after the next starting with this fall and maybe a month thrown in here or there to come up for air.
I know it’s been hard on her. Relocating to a new city, joining a new church, leaving old friends while remaining open to making new ones, learning new roads, finding new stores, it’s a lot for anyone at any age, and she was 79 at the time. She met the challenge with a strong spirit and determination to conquer the city. Her enthusiasm was contagious.
Needless to say, her health issues have been a total surprise; with each one more serious than the last. This isn’t the retirement she had planned; certainly not a terminal diagnosis within six months of moving here.
I call her my Naomi and I’m her Ruth. I told her we’d get through all of this. ER trips, surgical boots, physical therapy, fourteen doctors with just as many medications, surgery upon surgery, MRIs, CT scans, X-rays, pre-op, post-op, a broken ankle, a fractured vertebra, sinus infections, cancer, a mastectomy, bridge work, dementia, Alzheimer’s, and more doctor appointments than I can count just to name a few.
She’s been such a trooper with each episode. Whether it was days when she was up and ready to go, or days I arrived and she had forgotten and was still in her jammies, she rose to the occasion and simply trusted me to care for her. If I filled a new prescription, she took it. If I gave her the walker, she used it. We waded waters of medical decisions, dental decisions, orthopedic decisions, neurology decisions, split decisions, decisions made with family; so many decisions I can’t recount them all. I sat with her through every single doctor’s appointment for two years. She recovered from both surgeries in our home.
I’ve watched her defer to us for help of all kinds. Her “tough ‘ol broad” self-proclamation became softer as her mind became fuzzier, and she began to lean on us more for direction and decisions. Treating her no different than I would have treated my own mother if she was still alive, and how my sister and I cared for my grandmother, I’ve helped Nana as if we were bound by blood, not marriage.
Perhaps I got a little too close. Her life and mine became so intertwined I’m not sure where she stopped and I started. My family saw this. They encouraged me to have boundaries and take time for self-care.
But there’s this advocate in me that won’t be quiet. I’m a fierce fighter who will stand in front of whatever moving train is threatening someone in my care. The voiceless, the helpless, the vulnerable – we are called to help them and I take it to heart. And when those are family, we are called to help them all the more. And as for widows, God specifically mentions our duty to care for them several times throughout the Bible. Another box checked on the life list for my Naomi.
An attitude of, “I’ll fix this. I’ll handle this. I’ll take care of this. I’ll protect you. I’ll fight for you. You’re safe with me,” is the advocate in me that won’t stop or rest or back down for those who need it. Not ever.
I’ve watched Nana have to accept more help the more serious her physical and neurological needs progressed. The worst was having to take her car away after she put herself in a dangerous position and didn’t realize it. She was mad at me, and the family, for four months. I’m not sure she ever fully forgave us. But with every other decision, she’s been amazingly compliant because she has always known we are working in her very best interest. The way we’d want to be treated. They way her husband, my favorite father-in-law, would’ve treated her if he were still alive. The way I will stand before God one day and be held accountable for caring for his daughter, a widow, elderly, lacking memory to advocate for herself, and lacking physical health to provide for herself.
I’ve taken this task extremely seriously which is perhaps why I often cry all the way home on the long drives during every season and in every kind of weather until near hyperventilation.
As she has let me help more as her needs grow, I watch her fight herself for freedom. Two moves: the first one was to relocate down here and gain independence, and the second one to forfeit that new independence exactly a year later to an assisted living facility, with no other option for her safety. She has desperately wanted to stay independent in her desire to make one more meal for herself; pay her own bills and balance her own checkbook; power-walking up and down the halls of her apartment just to prove she still could; moving very heavy furniture by herself to demonstrate her strength (which led to the fractured vertebrae); working crossword puzzles and word searches to stay mentally sharp; answering the neurologist’s memory questions honestly, as I turned my face away to avoid her seeing me weep at the six answers she got wrong compared to the one answer she got right.
We locked arms and boldly marched on with every appointment. Most times she didn’t know which doctor we were seeing or why, but I had her back. I peeked over her shoulder as she stepped on the scale so I could monitor her weight. I held candid discussions with the doctors and her when she didn’t want to admit she had lost more physical or mental ground. Sometimes I felt like a tattletale, but as her advocate doctors needed honesty to treat her properly.
She fights to hard to stay independent, yet she has a keen sense of knowing when to accept help when she needs it. I look back on the past two years, which feel like a lot more in some ways with all the physical and mental battles she’s fought and me at her side fighting for her, and it’s sobering to see where we are now.
I’ve had her strapped on my back for two years without ceasing. Without ceasing. It has been some of the hardest work I’ve ever done, but also some of the most rewarding.
So on December 18th, exactly a week before Christmas, I pulled into the Starbucks parking lot barely able to breathe. Choking back tears, I walked in, not knowing what the person looked like whom I was meeting.
Not one, but two women greeted me; both with the same first name. They were with Hospice. This meeting about killed me. It was supposed to last about an hour. We were there 2.5 hours with my never-ending questions. They were incredibly patient, kind, and gentle. They assured me the decision was totally up to the family and that they were there to answer questions and help if we so chose.
Our family knew this meeting was happening and I had their blessing. Still, signing the paperwork as her HCPOA, the weight of responsibility nearly broke my heart in two. Despite the emotional fit I was having on the inside, I hid it pretty well on the outside…until…
They explained that Hospice would now be her PCP, oncologist, etc. I know their help is a good and necessary thing, but a wave of grief overtook me in one tsunami tidal crash I didn’t expect and couldn’t control. The women saw my countenance drop and asked if I was okay. I replied, “I need a second,” and looked away. Turning back toward them, with tears welling up, I asked, “So the last time we went to the oncologist was the last time we would see him?” Short answer, “Yes.”
Grief grabbed me and choked the lump in my throat. “It’s just that, well, he was the best doctor we’ve ever had, and I didn’t get to tell him. We didn’t get to say goodbye.” There was a chasm in my heart, a gaping hole void of closure between me and this decision to sign on Hospice.
Suddenly, the past two years flashed before me like a movie reel in fast-forward. Memories we made together came flooding to mind such as the many trips to various doctors and surgeons; trips through the drive-thru after a hard appointment, as my grandmother did for me when I was a child to make things better; our hundreds of car conversations; wringing my nervous hands in elevators; endless waiting in waiting rooms; dashing to fetch the car for her in pelting rain; heating the car for her in the dismal, frigid winter; finding every handicap parking space at nearly every medical facility in our city; wearing face masks and gloves in the ER; falling asleep sitting straight up in stiff, hard doctor office chairs in the middle of the night; watching other patients wait with us who were just as sick as Nana was, or sicker, as they moaned and groaned and threw up and passed out all around us in the hospital; checking voicemails and texts in the bathroom so she wouldn’t feel overlooked; half-reading half-interesting, outdated magazine articles in doctors’ offices; meeting up with the sweet driver at her assisted living facility when she could help drive her to appointments – we must’ve rendezvoused in every parking lot in a twenty-mile radius in our city; more of her favorite hamburgers and milkshakes; more waiting at the pharmacies; watching her struggle to find one of the five lipsticks in her purse she swore was not in there; assuring her that she looked pretty as her appearance has always been important to her; triaging her symptoms-of-the-day to discern whether or not it required a call to the doctor; sitting with endless doctors and making endless decisions with her and for her…it was all over. In one conversation and a few signatures, it was all over.
I suddenly wanted so badly to drive her to one more appointment, shoot the breeze in one more waiting room, fix her a cup of complimentary coffee, listen to her muse about the world around us, shake hands with one more doctor, and check one more doctor’s visit off the list.
What felt so dreadfully hard on some days, I silently begged to have back now sitting with Hospice and realizing this lap of her race is over. I didn’t know what to do with this new reality. The adrenaline that fuels the advocate in me was still pumping in my veins to do, to act, to help Nana. I wasn’t ready to hand this baton to anyone else and trust them to run on her behalf.
I understand Nana is no less Nana in Hospice’s care. She is no less our responsibility as family. Hospice is help. They are the very best at what they do and surely, they answer a calling 99% of the population could not handle for one minute. I am convinced there is a special place in heaven for Hospice staff. Their crowns will shine like the sun. But the protector in me struggles to let go.
I looked at the two ladies eye-to-eye and said without blinking, “Please don’t be offended, but it’s hard for me to entrust her to you. I’ve done my Hospice homework, but don’t truly know you. We’ve just met, and although so far so good, I’ve had some other medical companies ditch us and neglect her care. I’m worried.”
They sat with me for 2.5 hours until I was satisfied this was the best thing for Nana even though I knew in my heart and head it was time. Nana’s physical needs outgrew what I could provide. No number of doctor appointments could keep pace with the progression of Angiosarcoma and Alzheimer’s.
I often woke up in paralyzing fear in the middle of the night worried about her. If I wasn’t with her, I worried whether or not she was okay. Did she not answer the phone because she forgot she had a phone, accidentally turned the sound off, forgot to recharge it, forgot how to use it, lost it (which all of the aforementioned have happened), or was she lying on the floor unconscious from another fall? Rational and irrational thoughts warred in, and wore on, my mind and soul.
Hospice has been the very best thing for Nana. Her needs are tended to every single day in the comfort of her own space. They are a godsend and I couldn’t be more grateful for their help. It gives us enormous peace of mind and comfort as they happily accommodate my request for daily updates on who was there, what they did, and how she is doing. And in their words just today, “She’s doing as well as can be expected as the cancer grows.”
I’m so appreciative for their updates, but still I am not okay. The fighter in me feels like a failure. The advocate sits in awkward silence. The warrior stands weaponless on the battlefield. The protector feels the powerless weight of empty arms that are used to holding Nana, figuratively and literally.
I’m trying to follow Nana’s example of accepting help. I’m thankful, I really am. But in one morning meeting the dynamics of “us” completely changed forever, and that is something I wasn’t emotionally prepared for, even though it’s a good thing.
After hours of conversation and signing the paperwork, one of the ladies had to leave for another meeting as the other one sat across from me with tears in her eyes. She told me her story of going through a similar situation in her own family and that she understood my feelings.
I looked at her, and with a shaky voice muttered, “For the past two years I’ve been 90% caregiver and 10% daughter-in-law. Who am I now? What is my role…now?”
She tenderly answered with a quivering chin and merciful smile, “Now you’re 90% daughter-in-law.” We both sat in silence as she gave me time to process.
I broke the long silence between us with an, “Okay,” said under my breath, slowly nodding my head in peaceful acceptance, trying to hold it together in a bustling Starbucks full of young moms busy with their babies, business men in expensive suits with important places to be, and hipster millennials with earbuds in and eyes fixed on their laptops. “Okay,” I said again agreeably.
In that moment I understood a little of what Nana felt when she conceded to help with big steps like allowing the family to help with her finances, handing me her keys to the car she loved, and once again packing up her apartment and the independent life she loved after only a year.
Knowing decisions are right, and are even for the best, doesn’t make them any less difficult to live out.
Fast forward one month later. I’m huddled in my heavy robe scrolling texts and toggling between Hospice nurses and family. I texted the Hospice chaplain to see if she could visit Nana again as her health declines and the calendar continues to turn. To my surprise, the chaplain responded by calling me back. I didn’t want to talk and would’ve rather had a one-dimensional conversation through text as I struggle to find my way out of my emotional hiding place from all of this.
She said, “I can be at her place in 20 minutes.” “Whoa,” I thought to myself. I was shocked she could get there so quickly! Borrowing some of Nana’s willingness to accept help, I sheepishly asked, “I don’t want to burden you, but, um, how often do you think you could visit her? The doctors have given her a couple of months at best, and I think the more visits from friendly faces the better, but I don’t want to take too much of your time.”
The chaplain replied, “I can come as often as you’d like.” “Oh wow. Um, would once a week work for you?” I asked. She replied, “Baby, listen to me…” Her comforting words and soothing, motherly tone made me feel emotionally safe in our conversation. “Kristi, Baby, listen to me. I am here for Miss Salli. But I’m also here for your family. And I’m here…for you, too.”
Bundled up in my robe, hiding from life, tears streamed down my face I sat speechless. She touched a soft spot in my soul. It’s like she knew it was difficult for me to ask for help without me admitting it. The confidence with which she spoke allowed me to let down my guard and accept her support because she can be someone to Nana that I cannot be; just like the nurses; just like so many people who have joined us on our journey these past two years. Her words and voice convinced me she really meant it. She really wants to be there for Nana. My heart quietly raised its white flag of surrender, yielding to the truth that there is safety in numbers. Not even my husband and I together can do this. Nor can rest of the family spread out across three states. This is bigger than all of us.
“Are you still there, Kristi?” she asked.
“Yes, I’m here,” I spoke in a faint whisper.
“Okay, then I’ll be there in twenty minutes,” she assured me.
“Thank you, thank you, thank you,” I pleaded.
“It’s what I do and I’m happy to do it. And if I can make a difference in Miss Salli’s life, and help your family at the same time, then my life won’t be in vain,” she said.
How does one respond to such authentic compassion and genuine empathy?
We hung up and I laid the phone in my lap. Staring into the dark, for the first time in a long time I felt the strength of a helping hand pulling me out of the pit.
So many wonderful people have been available to Nana 24/7 and it has been a blessing beyond measure. She’s accepted their help with graciousness and gratitude.
For me, on the other hand, I’ve still wanted to be a part of things. Not controlling or in the way, but I deeply care how she is doing on the days I am not able to see her. In part, because I love her and my heart aches knowing she’s fighting the battle for her life. Also, in part, is the humbleness of admitting that everyone needs help, including me.
Nana – the fearless, strong-willed warrior – has taught me one of the greatest lessons she could teach: Accept help. Know when we need it. Know when to ask for it. Be willing to accept it. And say thank you, which she has said no less than a million times.
Truly, her wisdom regarding when to fight and when to relinquish is something that will be part of her greatest legacy to me. Man, she knows how to fight for what she wants! Her persistence on lesser matters has caused me much anxiety. But she also knows when to say enough, end the arm wrestle, and trust someone else with the decision.
She’s spending a lot more time in bed these days. The cancer pain has been a challenge to keep under control. She is accepting everyone’s help: the nurses in their daily visits; the chaplain who prays and sings hymns with her (or to her depending on the day); the med techs who are amazingly awesome and shower Nana with love and care; and all of the folks, medical or not, who have walked a mile or more with Nana, sojourning on the road leading her to heaven.
It has been, and will continue to be, a privilege to serve her in this way as caregiver these past two years in the good times and in the hard. As much as she has allowed my help, and as I’ve watched her let others in and trust them with her care, I believe the best way for me to pay tribute to her legacy in this is to learn to do the same in my life…another passing of the baton, if you will.
In her example, I lay down my pride and stubbornness, my clinging to in the name of love and worry, and my heart will smile and accept help in honor of Nana – the fearless, strong-willed warrior – who taught me we don’t have to fight our battles alone.