I awoke to the news that my father had died suddenly and tragically. I boarded a plane and went to comfort my mother. It soon became apparent that she had developed dementia. My father died at home a few hours after discharge from DePaul Hospital ER. I talked to lawyers, I fought hard to hold the hospital accountable. I started a blog. I hand delivered letters to hospital administrators. I pushed through the stages of grief. I planned a funeral. I made so many decisions, adrenaline got me through those first several weeks. I cared for my mother, grieving and out of control with the middle stages of Alzheimer’s disease. She didn’t sleep. She required 24 hour supervision. I lived apart from my husband and children for a total of four months in the first half of 2020. I pursued guardianship over mom for her own safety, cleaned up the home, remodeled, arranged for sale of the house and contents, secured placement in a memory care facility for her, found homes for their elderly dogs, and tried in vain to sober up a wayward relative. Confounding the loss and stress and grief of it all, the country fell to a worldwide pandemic. There were so many hard memories during those lonely weeks that soon became months. I leaned on support groups, friends, my aunt. Learned to meditate. Smoked cigarettes after nine years nicotine free. (I’m free of this now 6 months). Whatever it took to get through.
The energy in that house was thick, heavy—it took every ounce out of me and I was so depleted at the end of every day. I did the best I could to manage the enormous responsibilities put on my path and gave it my all. I reconnected with many people during this year, it was a homecoming, a reckoning of sorts. Some people were invited out of my life and I am at peace with this. My dad’s tragic loss changed me. No one should die that way, I told myself. The grief and guilt brought me to my knees. Not a day goes by where I’m not reminded of him and the pain of this past year.
There is goodness that comes from even the darkest of times. I found purpose to my career life and returned to social work after a 15 year hiatus. Drawn to hospice after witnessing the aftermath of a tragic death, compassion and understanding flow easily. I can’t bring him back, or give him what he needed before he died. I wasn’t there. I lived 1400 miles away and didn’t visit often. But I can help others in some way find a gentle path through death, to be reassured, supported, comforted. For my dad, in his memory. This is year one.
My father’s obituary was crafted the night and early morning of February 17-18, 2020 beginning at 9:00pm and ending at 2:00am. At the time, I was the primary caregiver for my mother who was suffering from dementia, which cemented her toxic personality into a mental prison of paranoia, rage, and mood lability. After I finished the obituary in tears, trying always to be perfect, never to miss a detail, my mother awoke me at 3:30am, banging on my locked bedroom door with a broom she held from the first floor, demanding her medications, demanding to call her friend, demanding I be as miserable and terrified as her. She then moved a metal cart across the ceramic tile for the next two hours in some bizarre attempt to do laundry. I never went back to sleep that night. I also never served as primary caregiver again. That was the beginning of the end of my role of thinking I could do it all. I am forever grateful for the private caregiver company Comfort Keepers https://www.comfortkeepers.com that was able to come in and provide 24 hour personalized loving care and supervision for my mother. They taught me about dementia, listened to my pain, and made the home a safe place for my mother for as long as she could maintain in the home. They saved this situation from imploding and I remain in awe of the care and attention they provided to this most unfortunate and challenging situation.
The obituary follows (names and personal details have been changed to protect our family’s privacy).
Harrison Steves, 82, of Middletown, USA – February 10, 2020
The family and friends of Harrison Steves are mourning the great loss of their hero, protector, provider, brother, father and husband. Harrison was born June 21, 1937 in Brentwood, Missouri to Wallace Steves and Nellie (Lumierere) Steves, the firstborn son of what would be a family of four siblings. Dad was the embodiment of service, duty and life long learning. He was an Eagle Scout, and served his country with two tours of duty in the Army. Having three younger sisters, he made being a big brother a priority. He attended Gold High School and graduated in 1955. Dad was a firefighter for Poducka, Midtown, and Airplane Corporation. He earned a BS from a prestigious University and an MBA from another prestigious parochial University and became Airplane Corporation’s first fire protection engineer. In addition to working full time, dad was also an associate professor of fire protection engineering at Local Community College teaching night classes for area fireman for 25 years. He retired from Airplane Corporation after 34 years. Upon retirement, Harrison did not slow down – instead he built a house on two acres in Middletown; their dream home and a source of great pride, with multiple beautification nominations, and Certificates of Merit for Best Park Like Setting and Best Rose Garden in the City. A lover of nature and animals, he arranged their property to meet the qualifications for a Certified Wildlife Habitat with the National Wildlife Federation, as well as supporting the State’s Conservation’s Arbor Program by planting over 400 cherry trees. Dad was a life long learner, obtaining his certificate in Spanish in 1999 and his EMT certification in 2012. He served as a Community Emergency Response Team (CERT) neighborhood volunteer for many years. Dad loved his dogs, finding joy in their sweetness, loyalty and trust; first Lucee, then Mollie, and current rescue pup Gypsy. He gave to his kids, his family, his community; he went out of his way for others, from rehabbing his daughter’s kitchen in New England to helping a neighbor obtain a college scholarship, to inviting his Spanish teacher to dinner for a home-cooked meal. He is survived by his wife of 49 years, Lois (Folle) Steves; son and grandson; two daughters; grandson and granddaughter; three beautiful baby sisters; and many beloved nieces and nephews. Most of all, Harrison loved Lois and did everything he could to give her everything she wanted, taking excellent care of her even with his own health decline. Dad never did ‘just enough to get by’. He went big. Every. Single. Time.
Thanks, Dad. I love you. I was lucky to be your daughter. May you rest in God’s peace.
Here they would come, always from out of town. Frazzled, but determined. The notebook, usually from the hospital gift shop. But sometimes they were prepared. As a medical social worker, I sat in on these meetings. To help with discharge planning, end of life decisions, support to the family during their pain, confusion, anger. “Did mom ever talk about what she’d want?” Validating their pain, confusion, anger – essential social work skills, yes. Frightened and traumatized daughter, I see how much this hurts, your experience is valid, it makes sense you feel this way. I can be with you in your pain, for I am in it, but not of it.
As a social worker, I look at practical things first: scan the room, make sure there are plenty of pens, the tissue boxes are available, there is water, enough chairs. Valuable ancillary help, the little I can do from my powerless position as social worker. We can’t take the pain away. We can help see you to the other side of it, if you let us. My words of support were from my training, not any personal experience at that time. I’d never lost a parent, a sibling. Lip service then, fifteen years ago. Today, my personal reality.
“How do you spell that?” They always want to know the correct spelling of the doctors’ names. Rarely mine. Everyone knows that the attending physician is the one in charge. Casting eyes down, they press firmly on the fresh sheet of notebook paper, they record the doctors’ names precisely. The one small detail they can control as their loved one – their mom, dad, sibling – suffers, fades, dies rooms away. Facing these critical times, hard decisions must be made. Astute doctors with many years of experience in leading these family meetings know it takes time. As mom or dad lie motionless, eyes closed, dependent on machines to breathe and medicines to keep the heart beating, families mourn, grasp for hope, live the pain in a thousand ways. There is beeping, tubes, gowns, stainless steel, quick clicking of Dansko loafers chipping down the hallway, white coats, scrubs. Sometimes seeing their mom or dad on the machines is enough reality to bring clarity and know intuitively what to do. Those are the most healing. Oftentimes there is conflict amongst family members, “We must do everything! We cannot give up, that’s not what he/she would want!” A manifestation of personal guilt. In reality, the adult daughters, especially the out-of-town variety, hold their guilt and mold it into action with nagging questions, requests for more meetings, long gazes, and deep pain. “I left my mom/dad/sibling alone. I wasn’t there. I should have done something more.” Sometimes that remorse goes sideways and shoots out at others. “Why didn’t (insert hospital/nursing home/other relative here) do more to prevent this?” We listen, validate, make small nudges towards helping them see more than the pain in front of the them.” Delicate work.
Families face death in many ways, united or estranged, they face these last days and hard decisions with common threads amongst them. A leader will always emerge, the spokesperson. In addicted families, this is often the Hero,* rarely the Lost Child, although they do emerge. Often in smaller families, members will cycle through the roles, trying each one on for fit, adapting, coping. Some listen and agree, afraid to confront or do anything to challenge the Leader. When they reach out to the social worker privately, it indicates great difficulty is on the horizon. No, not everyone is in agreement with the plan discussed; someone was too scared to speak up. Families are sometimes destroyed by crisis. Others summon collective strength and unite. We see all variants. In my own family crisis, I see strength and unity, for which I am grateful.
My father’s death two months ago today was sudden. He died on the floor of his bedroom, perhaps in pain, as indicated by what my demented mother recalled: he was loud, screaming, scary to her. She hid in the bathroom until she heard a thump. His thump, as his body gave up and his heart stopped beating. He was released from an emergency room for chest pain and shortness of breath not four hours prior. Whether a work up was completed with due diligence remains to be seen, but will be discovered. Where was I during his last few months? “More should have been done. I should have…they should have…WE should have…” We are all responsible, we all played a part, yet not everyone is willing to talk about and own his part. Hiding behind corporate will not erase the poor judgment that was exercised, you will always know in your heart you could have done more. I know I do.
Adult daughter with the notebook, especially the out-of-town variety, I was describing myself one day. And here I am. Except I have multiple notebooks, one for the deceased parent and one for the parent with dementia, one for the house, one for the bills and expenses, massive details to manage, a guardianship to pursue next month, a house to fix up and sell, and 1500 miles between where I am and where I need to be, all in the era of COVID-19.
*The Hero – The Hero is a family member who attempts to draw attention away from the alcoholic/addict by excelling, performing well and generally being “too good to be true.” The Hero has a hope that somehow his or her behavior will help the alcoholic/addict to stop using. Additionally, the Hero’s performance-based behavior helps to block emotional pain and disappointment. The Enabler – The Enabler is a family member who steps in and protects the alcoholic/addict from the consequences of his or her behavior. The motivation for this may not be just to protect the alcoholic/addict, but to prevent embarrassment, reduce anxiety, avoid conflict or maintain some control over a difficult situation. The Enabler may try to clean up the messes caused by the alcoholic/addict and make excuses for him or her, thus minimizing the consequences of addiction. The Scapegoat – The Scapegoat is a family member who creates other problems and concerns in order to deflect attention away from the real issue. This can be through misbehavior, bad grades or his/her own substance use. Oftentimes, the Scapegoat is very successful at distracting the family and others from the addicted individual. The Lost Child – The Lost Child is a family member who appears to be ignoring the problem completely. There could be a fight, with yelling and screaming, and the Lost Child will be absent or secluded from the situation. They are often perceived as the “good” child because much time is spent alone with books or involved in isolated activities. While the Lost Child will not be successful at drawing attention away from the family problem, he or she is able to avoid stress personally. The Mascot – The Mascot attempts to use humor as a means to escape from the pain of the problems caused by addiction. He or she will often act out by “clowning around,” cracking jokes or making light of serious situations. While the Mascot can certainly help lighten up a desperate situation, the real intent is to ease tension, keep the peace and serve as a distraction. Many comedians come from dysfunctional homes.
Please take the time to read this. You owe my family this simple gesture, a token of your time. I know you are busy. Do it anyway.
My name is Lora and I am the daughter of the late Harrison Steves who passed away at home on February 10, 2020 after spending the day under your care. My father apparently died of a heart attack at home the night he was discharged. This was despite being in your ER for nine hours and, according to the insurance statement HE already received, having undergone heart function testing that night: troponin, d-dimer, etc.
I feel very strongly that you need to hear my story and I want to hear your side as well. Please know that I write this out of the depths of my grief and the pain of the residual effects of dad’s death. I flew back to the Midwest as soon as I got the call that my father died. I was fortunate to get a flight out within 30 minutes. Despite a very conflicted relationship with my mother (a terribly dysfunctional family…thus the social work master’s degree), I knew I was needed to comfort her, as I am her only natural born child.
In the days that ensued, it became apparent that my mother was coping with far more than just grief. After taking her to her primary care physician and restarting her on all of her medications, none of which she had been taking for at least five months, I noticed she had significant behavioral and memory changes from the last time I saw her. A stat referral to neurologist was made and I sat with her during that life-altering appointment. She underwent a MoCA revealing a score of 11. My mother has dementia. She continued to decompensate, and on March 7 when she expressed suicidal ideation with plan, means, and questionable, but concerning,intent, I knew intuitively what to do: I put her in the car and drove her not to City Hospital, but to Hope Hospital. In their ER she was evaluated thoroughly as I completed not less than a three-page affidavit for psychiatric commitment into their geripsychiatric unit. She was admitted based on her current suicidality and lack of self-care. My mother who had suffered for years with depression and/or bipolar disorder as well as a personality disorder, was finally going to receive treatment and help. I have not spoken nor visited her since her admission; she rages for me on the unit, leaves confused and hostile messages on the home phone, remains disoriented and is prone to significant mood lability. I can no longer bring her comfort. It is unlikely I ever will. Since she was hospitalized, my petition for guardianship has been moved to expedited. I await trial here in the Midwest, away from my husband and two children. It will be six weeks this Tuesday that I arrived. My husband has advised me that I should not travel due to COVID-19 and I remain here, in my mother and late father’s home. I spend my days cleaning, writing, connecting with others via social media, and as of 2:00pm yesterday, caring for a sick relative. To say that I have my “hands full,” am “going through a lot,” or I that have “enough on my plate” wouldn’t even touch the depth and breadth of the pain my family and me are undergoing.
Please hear me out. I have hired an attorney to obtain the medical records, as our attempts to obtain them without a death certificate are futile. There are rules and HIPPA, I understand that very well. My aunt was denied said records – must have a death certificate. So we waited. For six weeks. The death certificatecame on Friday, having finally been signed by the medical examiner on March 19.
Are you aware of the process that happens when a person dies at home? In this case, my mother in her demented state did not understand why my father was screaming, groaning, and reportedly growling on the evening of February 10. She told him to “stop it.” She was scared and hid in the master bathroom as he continued to cry out in pain. Alone. She didn’t understand. I am working on forgiveness and trying to connect with the sheer terror that poor sick woman must have gone through that night. I know in my heart I will find healing and peace but please know it will not occur without significant pain, a journey I will take under the guidance of an expertly trained psychologist with very specific skill set. I am in good hands. My mother was not even aware that he had been away for 9 hours, of how he even got to City Hospital emergency room. We assume it was by ambulance because he did not drive himself. We are seeking those records as well.
I am curious at this point what is the protocol for releasing an 82 year-old man who has recently gone thorough chemotherapy and who presents to City Hospital ER via ambulance? What provisions are in place for this scenario? May I suggest that going forward, the hospital employ a social worker to screen all patients over the age of 80 – the frail elderly, perhaps you are familiar with the term – especially those who come by ambulance, those who are experiencing chest pain and shortness of breath. Those for whom the only other person in the home is in significantcognitive decline, the woman he loved and was committed to for almost 50 years, the woman he tried to manage at home in what must have been a horrible and traumatic existence. No one asked about who could help him at home, if he had adequate supports. No one inquired if the phones were working. Tragically, my parents had cordless phones, a set of four. None of them were charged and no one could call out. All the phones were dead. I will never know if my mother thought of calling 911 or if she tried and the phone didn’t work, like so many other devices which I am learning “didn’t work.” Her personality and her dementia sealed her into a prison where she carried out her way of viewing the world: the problem is not me, it is something outside of me. Several new laptops, sewing machines, tablets, coffee makers “didn’t work.” The truth is that Loretta’s poor sick brain “didn’t work.” She did have the ability to leave the bathroom when she heard the screaming stop and having heard a thump, she attempted to rouse Harrison. He was nonresponsive. She left the house somewhere near 11:00pm (I am still seeking records from the police and EMT) and went in the cold and dark night to the street and yelled for help. She yelled loud enough for someone to call the police and they came and she told him her husband wouldn’t wake up. She was placed in a cold and locked police car where she waited frightened and confused. Imagine what that must have been like. I did. And you should too. The police must have entered the house and found Harrison down and called EMS. I know they worked on him. He must have had a pulse? I know they tried at least, as I was the one who cleaned up the room, picked up the round electromagnet defibrillator pads that littered the bedroom floor, and picked up his dentures. You see, I had to ready that room for my mother to sleep in again as it is the only bed on the main floor and it was not safe for her to ambulate up stairs. Cleaning that room was the focus of my attention on February 12. Sit with that experience for a moment.
I am curious why City Hospital did not admit him. I want to hear your side of the story desperately. My husband is a physician too. I know there are two sides to every story and I promise you I will listen to your side without attacking you. Changes must be made, however. This cannot happen again. Please know that I will not hesitate to go public with my concerns, especially if they are not addressed in a timely manner.
Since this was a home death with no signs of foul play, the medical examiner was called and waived jurisdiction over an autopsy. My father’s primary care physician was asked to sign the death certificate, as is protocol with a death at home of natural causes. He declined. Please know that I hold harmless his doctor; I respect and clearly understand why he was unwilling to sign the death certificate. As I understand, he reviewed the ER note and learned that Harrison presented to City Hospital ER with shortness of breath, and I understand that he said “people do not die from shortness of breath.”
Together with my family, we discussed at length having a private autopsy. Ultimately, I made the very difficult decision not to seek the autopsy and as per dad’s wishes, he was cremated (as a young man, my father served as a fireman). If you feel relief at reading that he was cremated and we chose not to pursue a private autopsy, please don’t. This is not over and I will not rest until I am assured that changes will be made at City Hospital. He likely died a painful and terrifying death –let that sit with you for moment. Read the line again. He likely died a painful and terrifying death and he was not ready to die. Do what you need to do to get through this, go to church, call a mentor, meditate, seek spiritual counsel, obtain executive coaching…but DO SOMETHING. I am assuming you are a caring person; you went into medicine to help people, some form of making the world a better place. I don’t know you, but I am married to a physician and I hope you are half the man he is. My father had no one to take care of Lois and he would have never left her like this. He always provided for her. My suggestions and requests are below as a plan of action, Dr. K:
1. Meet with me face to face, along with the president of the hospital, my aunt, and my attorney. The other family members live out of state or are undergoing medical issues.
2. In this meeting I want the following to occur: Go over the medical records with us and explain to us what happened to Harrison at City Hospital ER. Talk to the nurses that were on that night. Walk me through his nine-hour ordeal. Let me heal from this. Explain to me why he was discharged, how this could ever be considered safe. Help us understand.
3. Employ an ER social worker dedicated to the care and welfare of the frail elderly in your community who present to the ER. Mandate screenings of all patients over the age of 80 who have red flags: come by ambulance, seem confused, have chest pain. Social workers can sometimes get a lot of information out of someone, a skill for which they are well trained.
4. Dedicate something in that hospital ER in my father’s great name. Let him not be forgotten or how City Hospital treated him be forgotten. Let it be a reminder.
5. Clean up the paper trail that occurs when a patient dies. It is VERY painful and disrespectful for a grieving family to receive insurance statements addressed to the deceased. We can receivethese, but not medical records? Distasteful.
6. Have my father’s chart peer reviewed. Allow me to attend this meeting as a silent witness. I will listen and respect the process.
7. Please know that I have additional requests that I will discuss with my attorney and will be reaching out by the end of the week (March 29) to follow up.
Thank you for taking the time to read my letter. I look forward to everyone’s prompt reply, especially you, Dr K.
Do I clean the kitchen cabinets or do I retile the master bathroom? Do I wait on hold with the insurance company advocating for my mother to receive an inpatient MRI, or do I answer a call from the unit where she is hospitalized? Plastic or paper? (Kidding, I bring my own). These are a few of the decisions I have had to make lately. It used to be, What dinners should I prepare so that I can get all members of my family around the table at the same time and get all the kids to where they need to be for their extracurricular activities? I miss those decisions, that kind of problem-solving. Petitioning guardians have a lot on their plates. My mother’s welfare and care are of utmost priority, much like the concern one has for her minor child. Ironically, my mother always told me (I heard this verbatim as a child many, many times), “You are MY mother reincarnated.” What a position to be put in as a young girl of ten. How time can really catch up with a person…her dementia, my steadfast (yet detached) support now makes those words all too cryptic.
Those in the medical field have much bigger triage questions to handle than what is happening in my small little complicated world. How to handle the influx of patients coming in? Which nursing staff can cover in case of staff infection? How many beds can we pull together to provide for the most vulnerable in our communities? Tough decisions.
The triage parallels of the present COVID-19 crisis and my present family’s crisis are not lost on me. Thrust into this National trauma, our frontline medical personnel are facing what will be, I am afraid, a life changing experience. Pray for them. Send your positive energy to them. Send them virtual hugs and check in on them. We all need to pull together.
Separated 1500 miles from my husband and children, my heart is torn in more ways than one. I am needed here. I am needed there. The need for me to be where I am, living in my late father and demented mother’s home, allows for coordination of all the moving parts of her mental health crisis. She faces placement in memory care and the destruction of her civil liberties. Her rights will be stripped from her because her daughter – her only child – will become her court-appointed guardian. This is triaged with my desire to be with and comfort my beautiful children and stand aside my husband, and serve dutifully as his sounding board, confident, friend and wife.
Triage will change you. Am I up for the task? Are you?
Friends, thank you for reading my Blog. Please sign up for email notifications and feel free to share this post on social media. Perhaps there is someone out there in a similar situation that could use my words and find comfort. Perhaps I need to know there is someone who is in this unique situation at this very moment in time as well.
Blessings and stay safe,
Answers to initial triage questions: I chose retile the master bathroom. The carpet had to be ripped up in the bathroom (please don’t ever carpet a bathroom for goodness sake! The carpet had been Deeply Soiled, use your imagination) and this took priority over the kitchen cabinets I was cleaning. She told me that she wouldn’t go into the master bathroom with the plywood floors because “It was scary.” I was concerned about night waking and her need to use the toilet and getting confused about where another toilet was in the house, perhaps getting hurt or getting frightened. So I tiled.
I ended my two hour call on hold with Aetna (hey Aetna if you’re listening – NOT COOL) to speak with the hospital staff. I figured I can always call back and be on hold for another two hours, maybe I will even clean the kitchen cabinets while I’m at it.
“…judicial orders act to deprive the ward of the right to make decisions on her own behalf with respect to care, treatment placement, support and maintenace.” I read the lines of the Statement of Duties and Responsibilities of a Court-Appointed Guardian. I take notes in one of my now three notebooks, this one titled “Lois.*” Cognitively, this makes sense. Emotionally, it is devastating that a daughter would ever have to petition a court of law for guardianship over her mentally incapacitated mother. Writhing and twisting with the palpable torment of what she and I are facing, I find reasons to leave that document, sent to me by my Elder Law attorney, and seek solace in writing. Reminiscent of my middle and high school days composing essay upon essay, writing was all but lost on me until my father’s unexpected and tragic death, compounded by the trauma of losing my mother to dementia and severe mental illness. But a skill earned is never forgotten and I feel gratitude for this skill, this outlet afforded me during this chapter of my life.
There are two significant limitations for guardianship: 1. Always act in the best interest of the ward; and 2. Supervision by the Court. Lois’ care is utmost priority and treatment and decisions must be made with her “dignity and personhood” in mind. I will direct her care, make treatment and placement decisions and the Court will supervise me. No less than nine points must be addressed in the Guardian’s Annual Status Report, a written document that is submitted to the Court on or before the anniversary of the adjudication. These nine points include: the address of the ward, the address of the guardian, the number of times the guardian has visited with the ward; a summary of said visits; any institutional treatment plans and guardian’s opines on same; summary of last physician visit; current physical and mental condition and any major changes to her condition; the guardian’s opinion on her continued need for guardianship; and finally, a summarized plan for the upcoming year. More writing.
Lois is in fair health, despite her 76 years and lack of taking any initiative to improve herself physically; it is her mind and behaviors that limit her to the point of needing a guardian. This means that I will need to be exercising fiduciary oversight for her long term care needs. She could live a long, long time, disintegrating into deeper dementia. Death during life, if life is defined as our souls and personality. She can no longer make safe decisions, she lacks insight and exercises poor judgment. She is argumentative, contrary and exceedingly hostile on the unit where she is presently hospitalized. Being somewhat savvy clinically, and always having had an interest in mental health (I worked as a psychiatric and medical social worker prior to having children), I assess her symptoms and behaviors and have deep compassion for the behaviors of dementia – the confusion, paranoia, memory, processing and executive functioning deficits – but little for the severe personality disorder behaviors. Compassion and sympathy for the depression or bipolar disorder of which she has suffered – untreated – for decades. Compassion here, anger there. My forgiveness is a journey. It is a palpable one, and it rises within me.
Tonight I write from the freshly cleaned desk of my father, the late Harrison Steves.* It overlooks the ample great room, the dark wood railing circling it much like a prison yard. This home was long sought after – Lois always wanted a large home and when circumstances allowed (through a very intricate arrangement, the subject of future Blog post), Harrison built it for her. Built it. From the ground up. Dad never did anything small; he was all in and made an impact, made the biggest impression he could. His office was the easiest to clean in their home, after the carpet cleaners came to remove the years old pet stains, it was only dusting and going through papers. So. Many. Papers. What one learns about one’s parents upon their death through paper, is palpable.
The events of the last five weeks have changed me. There is strength and tough decisions, courage and exhaustion. I am grateful for this. Palpably grateful. And that, too, rises within me.
“Now draw a clock face, with the numbers,” the medical assistant instructed my mother. I sat motionless, feigning invisibility, taking in my surroundings. I am seated next to my mother at the neurologist’s office during a work-in appointment, which was graciously granted to us because of the severity of her symptoms and my (the adult daughter’s) observations of her behavior since Dad’s sudden death. She hasn’t been functioning well for what appears to be several years, but I would not have known. Estranged from my parents by choice, I kept in minimal contact with them as the dysfunction and mental illness could topple me. I dreaded calling. I’d set a timer, keep it to 20 minutes, only discussed light and pleasant topics. I never missed a birthday or Christmas, always sending a nice gift basket, but I kept her away from my life, my children. But now, living in the house with her (and the 24 hour a day caregiver I set up), I see her mental deterioration firsthand. I didn’t understand at first. The hate spewing forth at me, the daughter who abandoned her years ago, triggered more than one angry outburst on my part. She resents me for who I have become, well adjusted, thriving in my normal life, happy, active. I resent her for her lack of basic parenting skills and teaching me ineffective and unhealthy ways of living. I have much, much work to do to forgive and heal. But for now, there is a job to do. Regardless of who she was before dementia, she is mentally incompetent and unable to care for herself, make safe choices, or manage her finances. So the work begins and it is exhausting.
“Now draw the hands on the clock to show ten minutes after 11:00,” continued the medical assistant after my mother had drawn a circle with clock numbers. She struggled, staring at the sketch. “Hands?” she asked. The medical assistant explained the hands of a clock, what would they look like if the clock showed ten after 11:00? She drew lines, clock hands, but they didn’t show the requested time. Her poor aged demented brain did the best it could. I sat motionless, heartsick. More questions, assessing executive functioning, language abilities, attention, short term memory. Many fails. Sometimes I had to look away as she fails the answers, part protecting her dignity and part feeling the weight of the grief of losing not one parent, but the soul and heart of the other in a matter of just a few weeks. I feel the weight of the devastation ravaging her diseased brain. Damn you dementia. Damn. You.
The medical assistant completes the assessment, leaves, and the neurologist enters moments later. He talks with her and asks questions, takes his time and is patient, reserved, careful. He reviews my handwritten note about mom’s recent functioning and asks more questions. I sit silently unless directly asked. She is agitated when I answer questions. She wonders what it’s all about, unsure why she is here at the neurologist today. “You have significant memory impairment,” he tells her.
“No, my memory is good!” she defends. He discusses need for additional testing to get to the cause of the impairment, a lab draw and an MRI. He tells her that having her daughter live with her right now is a good thing, that she needs signifiant help and support. He questions me about future planning…will you take her back to where you live? She jumps in, telling him no, “It’s too cold there.” He looks straight at me and tells me that I should start looking for locked memory units, makes a plan to discuss results of MRI with me once it is completed, and said we will schedule an appointment pending results. I stare blankly, my eyes sad and soft. “What was the result, the score?” I ask.
The Montreal Cognitive Assessment (MoCA) was designed as a rapid screening instrument for mild cognitive dysfunction. It assesses different cognitive domains: attention and concentration, executive functions, memory, language, visuoconstructional skills, conceptual thinking, calculations, and orientation. MoCA scores range between 0 and 30. A score of 26 or over is considered to be normal. In a study, people without cognitive impairment scored an average of 27.4; people with mild cognitive impairment (MCI) scored an average of 22.1; people with Alzheimer’s disease scored an average of 16.2.
Grief reaches deep. In the two weeks immediately following the death of my father, my body felt the grief deeply, cellularly. Since his death, I have learned more about bereavement and its affects on the body. Reading like the back of a cereal box, most sites rattle off symptoms: sadness, crying spells, sleep disturbance, appetite changes… What stuck me was the intensity of the physical impact on my body. Waking up suddenly with heart palpitations, a fluttering heart that skips beats, racing, electrical charge on my arms and back, little appetite… The death of a parent, regardless of quality of the relationship, moves into us and takes hold. A week into this, and crumbling under the pressure of dealing with my mother’s antagonistic personality, hateful behaviors, and psychological decline, my blood pressure soared, I felt legitimately scared, and I found myself presenting to an urgent care. The doctor, a soft spoken middle aged man with dark bushy eyebrows, talked with me in a quiet exam room as I rest on the gurney, tears rolling. He listened to my heart, retook my blood pressure and diagnosed stress, but warned should I develop chest pain to go the nearest emergency room. “Do you have hypertension?” Well maybe, it was a little high at my last annual exam, so my doc is advising me to consider medication should it be repeated. My heart thumps on. I navigate the grief. Dr. Urgent Care further suggested that I no longer be primary caretaker of my mother. This was a Wednesday; by Friday at 5:00 pm a private duty caregiving service was in place and I felt some relief. But this was only the beginning of a chapter that has not yet found resolution.
Of course I reach for my phone at the moment I wake…I’m a 45 year old active wife and mother who posts on Facebook, has my pets on Insta, drives kids to soccer, lacrosse, ballet…reads the local news every morning on the tiny screen. I CrossFit. I recycle. And of course you don’t answer the phone if you don’t recognize the number; its 2020! And who makes calls especially at 6:00 am on a Tuesday morning? But checking FB messenger, that’s what I’ll do right away. I see the notification and click.
And the message from my half-sister startles me shockingly awake.
I am sorry for the loss.
I then check the voicemail, the call I ignored….my aunt apologizes that she is leaving this sad news on a voicemail, “I have some really sad news, your dad passed away early this morning…” I wake my husband, his eyes are wide, startled. “My father died. My father. Died.” Its a blur. I call my aunt, its been decades since I’ve talked to her, but we are connected on Facebook, to keep in touch and share pictures. I think I am tearful, the deep pit begins, that sinking feeling that pulls me like an electromagnet to deep within where its so raw. My husband and best friend, he jumps online and finds the flights to St. Louis…afternoon flight, I have a few hours, enough time to pack and think and plan. I take a shower I won’t remember, I wrap a towel around myself, I find clothes to wear. Just motions. Moving through my actions like they are in slow motion. I have time to get dressed and apply makeup. I have a lot of time, several hours until the flight leaves. Plenty of time. I drive our daughter to school, telling her that I have to get on an airplane today to go to St. Louis. I tell her my father was really sick and died and I have to be there for my mom. She nods in understanding. I tell her to be good for daddy and helpful around the house. She doesn’t know them as grandparents, referring to them as “your Mom” or “your Dad.” Her birth seven years ago was the last straw in breaking the cycle of addiction, mental illness, severe family dysfunction…the sins of these fathers will not be beset on my girl child, I was to make sure of it. I walk her to the playground as I’ve done every morning since September when she started at public school. I follow her inside to get a hug at the classroom door, she finds that odd, I never walk her into school, just to playground. I didn’t want to leave her. I don’t know when I will see her again. I drive home. “There is actually an earlier flight,” he tells me. “If you can leave in 30 minutes.” I agree; better to get there by 5:00pm than 8:30pm. I throw the clothes on the bed, he packs for me. “I’ll get you a rental car.” I thank him. “Buy something for the funeral, don’t worry about trying to find something….you’ll need the break from the house.” He knows. We have been married for over 20 years; he knows more than 24 hours at my parents’ home gets me twitchy. I left this environment years and years ago. I got healthy, sober, free. His furrowed brow shows concern for his wife….he tells me I’m strong enough for this. I stare at him. I’m on a plane in what seems like mere moments, a window seat on a tiny plane crammed next to a fellow passenger. I look at my phone, photos of my kids and family and fun things we do. I let friends know. I have urgency to be with my mom, estranged as we are, I am her only family now.