This post covers several purposes. As I’ve done in the past, I need to mark major life events here. I also need to get my thoughts out regarding all of the events that led to my Mother’s passing.
You’ll notice I’m not saying ‘want’ above.
This note is much longer, much more emotional than almost anything I’ve dropped here. If you read this, please remember this is entirely therapeutic for me. I don’t want to talk about this. I’m glad if you get some value out of it – but I’m not posting here to engage in a conversation.
My short remembrance comes first in the section entitled In Conclusion. After that, I’ve included notes I captured as I started taking care of Marjorie. That longer section is entitled ‘Back to the Beginning.’ Please notice the entries were written in the present tense at the time the events occurred. I have tried to clean it up over the past several months – but the notes still have that feel to them.
My Mother died this past fall. She passed away with a handful of us at her bedside – unaware we were there. The end came suddenly. I wish it had been less painful – but the ICU staff did what they could to make her comfortable. It’s ironic that someone who lived with hypertension, diabetes, chronic kidney disease and vascular dementia would die of a single tear in her duodenum. The bacteria and bile in her intestines leaked out into her bowels resulting in the infection of her blood. It only took three days for her to die from sepsis. The day before her admission to the hospital, she and I had visited – and she’d been in good health.
Back in 2003 when I started writing here, I primarily wanted to keep in touch with my Mother. She spent most of the 90’s and the first decade of this century pursuing her career and living a very independent life, residing in Dayton Ohio, Cedar Falls, Iowa, and both Berea and Danville Kentucky. Unlike my brother, I did not do a good job keeping in touch with her. I hoped we could stay in contact through my writing here. She said she enjoyed what I wrote and I choose to believe she meant it.
While my Mother died in 2016, the beginning of the end for her started seven years earlier in 2009 when my Brother passed. She was deeply depressed as a result of his death. I didn’t understand how bad it was for her until three years ago when I realized she had started failing. When I become responsible for her healthcare choices in late 2014, I learned her doctors had prescribed anti-depressants between 2010 and 2013.
But her story did, in fact, end well. The two years before her passing were (mostly) positive for her. As her Danville doctor had noted in her medical records, she was pleasantly demented. I thought the label odd when I first read it – but she was. She was truly at peace with her condition and accepted her circumstances with a grace I hope I can equal some day.
Back to the Beginning
I decided to start this narrative regarding Mother today (November 16th, 2014). My intention is to withhold publishing the post until after she has passed to avoid making public her health challenges. While she would be embarrassed to have some of these details shared widely, I do want to chronicle her last years before I forget them.
My expectations continue to fluctuate. In October, I operated under the impression I would need to get her into a senior care facility within a few months. After my visit earlier in November, I was much more optimistic based on Mother’s General Practitioner’s comments regarding her long-term prognosis (“I expect her to live to 85”). Today, reading about her clinical condition, her life expectancy appears to be five years or less. Marjorie is currently 76.
The First Trip to Danville
On Sunday morning, October 26, 2014, received a phone call from my Mother’s friend Marcy Spielman (Norman) informing me that my Mother had fallen. Mother managed to drag herself from the bathroom to the phone in her bedroom to call for a squad run. She had been admitted to the local hospital (Ephraim McDowell Regional Medical Center). I arrived late Sunday afternoon at the hospital. The early word was that she had experienced a Hypoglycemic event. Mother has Type 2 diabetes. We conjectured she had started giving herself insulin shots without first checking her blood sugar levels. We guessed she did so to avoid the pain of pricking her fingers for blood.
Monday morning I came in early to make certain I was present for the attending physician’s morning round. Unfortunately, Mother was downstairs undergoing tests of her vascular system when the doctor arrived – but it gave us the chance to talk freely. I shared my concerns with her short term memory and general cognitive capacity.
The following day I also came in early to participate in the doctor’s rounds. After a brief series of tests, he sat down across from mother and very directly told her that she suffered from Vascular Dementia. It was a sobering message. The doctor shared that his sister and mother also suffered from the affliction. He told her it was an awful disease and one from which she would never recover. He told her she should no longer drive a car. On the positive side, he told her that she was finding out early enough that she would have the opportunity to put her affairs in order.
The doctor made an impression on Mother, but I know his message was intended for me. His role was to treat the patient, but he was preparing me for the challenge ahead. His message to me was clear – I needed to start looking after my Mother. Like many medical professionals that followed him, he delivered a dispassionate message in a compassionate way.
After her release that evening, Mother gave me specific directions as I drove her home regarding which roads to take. I’m sure she wanted me to know she could still function. But as we learned later, the ability to operate under stress is also impaired by the condition. She never gave up her ambition to drive again – but I never relented in preventing it.
This fall and trip to the hospital were the second for her in a three-week window. In hindsight, the symptoms are reasonably easy to see. She had grown forgetful and easily disoriented.
We quickly decided we needed to move Mother up to Dayton so I could better care for her. We struggled with which elder care option to pursue.
- We live in a small home without the room for an additional adult.
- We didn’t feel moving her into an apartment near us helped to keep her socialized. Becky and I believed strongly that Mother’s health started declining when Marcy moved out of her house. Mother was simply unable to take care of herself and needed to be able to socialize with others.
- I feared putting Mother in a Nursing Home. While her health was an issue, I did not feel it warranted the full-time care provided by a Nursing Home. Moreover, the risk her mental state might decline in a more institutional facility concerned us. Finally, it would be hard for her to part with her cats.
- The cost of Assisted Living exceeded her income by a significant margin. The option was too expensive.
- The compromise position we settled on was an Independent Living facility. This option gave Mother the social interaction needed while providing a modest level of in-room care. It was an affordable and more importantly one which wasn’t dehumanizing.
Relocating to Waterford
As I write this (December 30, 2014), it appears I have stumbled on a good strategy for dealing with Mother’s circumstances. I toured the Waterford facility in southern Dayton, near the Dayton Mall and was impressed with the facility. They are an independent living facility with services available on an a la carte basis.
Sunday, December 28th, 2014, we took off at 9:30 and arrived in Danville. I’d reserved a U-Haul truck to facilitate the move. Matt agreed to help with the move and drove down with us. Tom and Carol (brother and sister-in-law) who live in Danville also were there to help as well. After arriving, we packed throughout the afternoon. We packed as much as we could through 9:00 in the evening before retiring. The following morning we packed her household through 12:30. By 1:00 I was on the road with the U-Haul while Matt drove ahead with both Becky and Marjorie. We arrived in Dayton about 4:30. By 8:30 we had the truck emptied and by 9:30 we were back in Troy. We were exhausted after two days of hard work.
Over the next few months, Mother slowly settled into her new home. The walk from her apartment to the dining room was a source of exercise which had been missing in her old home. The dining room was a source of social interaction which had been missing in Danville as well.
Most importantly, it’s clear the staff are very professional. They understand Mother’s challenges and work with her so she’s comfortable in the community.
Throughout her stay at Waterford in 2015, Mother expressed concern for Marcy. Marcy had moved out of Mother’s house into a trailer in Danville near Mother in early 2014. She had done so ostensibly to provide room for Mother and Tom to patch up their relationship. When Marcy and Tom’s son Jeff had divorced, Mother chose to support Marcy. That decision impacted her relationship with Tom and Carol. While that move had, I believe, an unintended negative consequence on Mother, I was thankful that Mother and Tom did achieve some success in bridging their differences.
Marjorie and Marcy talked multiple times a day. Marcy was clearly struggling by herself, and Mother wanted to help. Concerned with the consequences, I spent most of 2015 resisting plans to bring Marcy to the Dayton area to be closer to Marjorie. According to Mother, Marcy struggled with both drug and alcohol abuse while in Danville. It concerned me Marcy’s presence would negatively impact Mother’s health and well-being.
I took the position that until Marcy could afford to move up to Centerville, we would hold off on making plans. In February of 2016, Marcy announced after a year of saving that she had sufficient funds to move to Centerville with Mother. Reluctantly, I supported the move. Mother persuaded me to go down and pick up Marcy while professional movers packed her household goods and moved them to an apartment she’d picked out near Waterford.
I rented a larger SUV to carry Mother, Marcy, and her dog. Upon arriving, I learned that Marcy had not started packing. The movers were scheduled to arrive the next day, so we purchased boxes and started packing all of Marcy’s possessions. It was exhausting work, and I was not happy to have been misled.
The movers arrived the next day and moved her possessions into the moving truck. As soon as they were done packing the truck, we took off for Centerville. None of us had given any thought to having Marcy’s dog loose in the SUV. It takes about three hours to drive from Danville to Centerville, and I spent most of that time with the dog panting in my ear as it strained to look out the front window. I did not enjoy the trip – but the bad news had just started.
When we arrived in Centerville, I quickly learned the details of the move had not been worked out. The apartment management staff did not expect Marcy until the following week. They did not have a two bedroom apartment available for her and would not until the next week when they thought she was due to arrive. Also, I learned the monthly rate Marcy expected to pay would only cover a single room apartment.
After more than an hour of drama, Marcy agreed to move into a single room apartment available at that time. She was distraught of course and upset that the apartment management had so badly screwed up the details. Regardless, the movers moved two bedrooms worth of furniture into a one bedroom apartment.
Marcy, it turned out also did not have money for the down payment. Over my objections, my Mother agreed to pay the down payment of $700. Later, I learned that Marcy also did not have the money for the first month’s rent. Marcy received her Social Security check on the third Wednesday of the month and expected the apartment complex to cover her until the check arrived. Again, my Mother paid the money. (3)
Clearly, the move was poorly planned and significantly impacted my Mother’s finances. Mother was fully committed to funding the move and would not be persuaded otherwise. Marcy had demonstrated that she was not capable of managing her budget. Mother covered the down payment for the apartment as well as the first month. She also covered a variety of other expenses associated with the move. In total, she spent almost $2,000 facilitating the move.
Marcy and I had a heart to heart conversation. Knowing my Mother would attempt to cover any expense Marcy incurred, I required, as a condition for further support, that Marcy clear all expenses through me. We also agreed to have her Social Security check deposited into Mother’s account. To protect my Mother, I now would be managing Marcy’s budget. Marcy also agreed to pay the money my Mother had loaned back.
Early Wednesday evening on September 14th, 2016, I received a call from Marcy. Mother was in severe distress with abdominal pain. She was recommending we have a squad run her to the hospital. Marcy speculated that she had food poisoning from lunch they had eaten out earlier in the day.
The next morning I woke up surprised to see several calls from the hospital on my cell phone. After calling them back, they asked if they could put in a peripherally inserted central catheter (PICC) line for medication to improve her blood pressure. Without giving too much thought to ‘why’ that was necessary, I approved the procedure.
After settling in at work at my desk, I received a call from Mother’s General Practitioner expressing concern and general sadness and regret that Mother had suffered this complication. At this point, I was thoroughly confused, so I called the hospital and asked them to explain what had happened the previous night.
They had described the Emergency Room team had determined that Mother had a tear of some kind in her digestive system. They had performed an exploratory surgical procedure but had been unable to locate any damage. The tissue in the area surrounding the Duodenum was infected with bile. They put some drains in place and closed her back up intending to evaluate the drainage.
They eventually determined that her intestines were still infecting the surrounding tissue and that a second procedure was required to locate and correct the tear in the intestinal wall. The operation took almost two hours, but the surgeon was able to find the issue. The location of the rip on the interior curve of the duodenum prevented the doctor from simply sewing up the fissure. Instead, the doctor inserted a T-shaped drain with the intent of relieving pressure. Also, a section of the upper intestine was brought up to the stomach above the usual juncture of those two organs. Finally, the surgeon closed the tear in the duodenum.
In hindsight, the outcome was never in doubt. Mother had sepsis. People half her age struggle recovering from the condition. Her blood was infected, and the body’s response resulted in the catastrophic drop in her blood pressure and subsequent organ failure.
While the surgeon had cautioned me, I spent Thursday at her side without fully embracing the likelihood she would never leave the hospital. I called Marjorie’s brother and sister along with my family to let them know her condition was severe. She was heavily sedated Thursday after the surgery and did not react to anything in the room. I did get a reaction late in the day before leaving by getting close to her ear and calling out her name. Her eyes snapped open (it startled me), and she looked at me. She may have recognized my voice, but I don’t think she could focus on my face.
During the day Friday, I thought her condition improved. Her eyes were open as I entered the room in the morning. She followed me with them as I walked across the end of her bed. She was on a respirator and was unable to speak. Her eyes were open, and she appeared to understand what was being said. We would answer her yes/no questions, and she would shake her head to indicate her response. For example, Becky asked if Mother would enjoy it if I would read to her and she nodded her head yes. We even got her to participate in a joke by asking her if she would enjoy it if I sang to her, to which she shook her head no. Everyone understands I can’t sing.
ICU nurses live in a different reality than most of us. They see people struggle to stay alive and in many cases fail. In the ICU at Sycamore, the nurses work twelve-hour shifts. During her three and half day stay, Mother had five different nurses, and they were all compassionate, skilled professionals.
Getting a dialysis machine to work on a patient whose blood pressure is too weak to push blood to the device is requires patience and proper technique. The Thursday evening nurse coaxed the dialysis machine into action by combining bags of saline to create pressure, drugs to constrict blood vessels and positioning the neck so that the line into the jugular had a straight path out of her body.
Rhonda was the Friday evening ICU nurse. Indicating that Mother’s condition was severe, Rhonda advised me to spend the night Friday. We talked about the three levels of care the ICU team could administer and agreed that we would not permit them to progress to the first level where chest compressions were performed. Around 4:00 AM Saturday morning, Mother’s blood pressure started dropping dramatically, and the staff downgraded her condition. The attending physician at that hour advised we put an external pacemaker on her so that if her heart stopped, it would shock her to restart her heart. Viewing that as a half-step to the level of care I had declined, I declined. The doctor persisted, but between Rhonda and I, we prevailed. We agreed that we would change the team’s objective for her from sustain to comfort.
During the night Rhonda had put on soothing music in the room as well as laying Mother flat with a towel wrapped around her head to keep her warm, and the lights turned low. The Saturday ICU nurse, Deb, added a blower with heated air under Mother’s blanket to try to maintain her body temperature. The dialysis machine, which had been hooked up but operated at a low level to accommodate Mother’s weak blood pressure was withdrawn. Except for a friend’s loudly expressed anguish, Mother’s spent her last day in a quiet, relaxed and warm setting surrounded by her family.
At 11:21 (by my watch), Mother’s vital statistics monitor indicated she had no heartbeat. Over the course of her stay in the ICU, the team had put four ‘pushers’ or bags of saline solution to maintain Mother’s blood pressure. The team also had administered three different drugs to sustain her blood pressure. Deb, a five-year ICU nurse, had not seen the use of four bags before. Several nurses took turns listening to Mothers pulse with stethoscopes. Throughout the afternoon the nurses reported Mother’s heart still beat – aided by the four bags of saline.
Finally at 4:15 PM, with the aid of imaging equipment, the nursing team determined the heart had stopped. The attending physician was brought in to provide the official declaration of death.
Doctors: they show up occasionally and render opinions. They bring narrow but deep understandings of medical subjects. That doesn’t necessarily mean they understand your loved one’s circumstances. Challenge their direction when warranted. A 77-year-old woman in Septic Shock is not going to benefit from an external heart pacer. ICU Nurses: Gold. Mourners: Respect the patient. The ability to hear is the last thing a person loses as they die. Understand what you say can be heard and can negatively affect the mental state of the patient. I will forcibly remove the next mourner who cannot provide a positive, reassuring presence to the afflicted. There will be plenty of time to grieve after the person passes. Until then, remember, it’s not about you. Expressing Support: I’ve never been comfortable expressing support to the those affected by the death of a loved one. I’ve now been on the receiving end of those condolences. In my experience, the best response goes something like this:
If they knew your loved one, the next thing to add is calling out a positive quality of the deceased (but not a platitude such as “they were a good person”). Suitable examples include,