On May 1, 2021, my mother, Margaret, passed away from massive internal hemorrhaging. Although she was 84 years old, her death was unexpected in the context of her medical history and overall health. I am left to come to terms with the fact that Mom is gone and to try making sense of how this happened.
Mom’s Dementia Journey Begins
Mom came to live with me in 2017 after selling the home I grew up in. Dad passed in 2013. It had become too difficult to maintain the home. The first six months together were very pleasant. Although Mom showed some signs of forgetfulness, she seemed to adjust well and enjoyed being with us. Toward the end of 2017, Mom started seeing and hearing things that no one else could see – for instance, she had hallucinations of the neighbors digging up our bushes and she heard my voice in the house when I wasn’t there. She was also starting to leave the house, sometimes late at night. We finally took her to the hospital one night after discovering her asking the neighbors for a ride to the airport.
At the hospital, Mom was treated for a urinary tract infection and evaluated by a neurologist due to her mental state. The neurologist diagnosed Mom with dementia, which had been exacerbated by the infection. Upon her discharge, we made plans to see the neurologist regularly for treatment of her dementia.
Mom was home only one night before she escaped again, this time running away down the street screaming for help to a group of people she saw on the sidewalk. There was no one there. We immediately brought her back to the hospital, where it was decided that a stay in a rehabilitation facility would help to further evaluate her and plan a course of action. Ultimately, it was recommended that Mom be placed in assisted living due to the psychotic features of dementia she exhibited. I did not want to go this route but could see how impossible it was becoming to keep Mom safe.
The difficult search for a safe, affordable facility for Mom
We found an assisted living facility a few miles away. Mom moved in at the beginning of 2018. She adjusted well and made many friends. Unfortunately, by mid-2019 we had run out of financial resources to afford this facility. We investigated home care options and adult daycare centers in an effort to keep Mom at home with us. Nothing worked. Home care was more expensive than the facility. The adult daycare would not accept Mom because of her exit-seeking behaviors. I began driving around and knocking on facility doors trying to find a room for Mom that I could afford. Finally, I found one and she relocated there in June 2019.
Again, Mom adjusted well, and things were quiet for a time. Mom and I did lots of activities together — day trips, lunches, doctor appointments. In early 2020, she began to refuse medications. Because of high blood pressure and associated edema, Mom needed to take blood pressure medicine daily. In the previous facility, when she refused her medications, the facility’s doctor decided it was time to place Mom on hospice care. I was hesitant as she did not seem anywhere close to the end of her life. However, the doctor insisted that, because she was refusing medication, she would fall critically ill eventually. On hospice Mom took no medication other than morphine for pain and something for anxiety as needed. A nurse came a few times a week to check on her.
When she relocated to the new facility, Mom came off hospice because the new facility did not accept hospice services. She agreed to take her medications but, when she began to refuse again, the facility had a hard time managing her health and behavior. This set off a couple of trips to the hospital in 2020 — once in January to manage the edema caused by not taking the blood pressure medication and once in May for behavioral disturbances that the facility was not equipped to handle. They obtained an emergency custody order and sent Mom to the hospital in a police car.
Because of COVID, I was not allowed in the hospital to help her. I contacted the long-term care ombudsman program and worked with her care facility on a sound plan for managing Mom’s behavioral issues related to her dementia. The facility found Mom a therapist and changed her medications. Despite COVID, the facility began to let me visit Mom regularly. Although we couldn’t go out and do things like we used to, we were able to sit together and talk. It was a blessing to have that time together.
In January 2021, Mom fell, breaking her hip. After surgery, her recovery was a great success. Mom and I had a nice Easter together. Her only complaint was trouble swallowing medications. I knew this could be a sign of worsening dementia, so I made an appointment for her with a gastroenterologist. It was scheduled for May 5th.
I did my best to believe the doctor’s assurance and trust the treatment process.
On April 27th, Mom was sent to the hospital because she was fatigued and had some weakness. The emergency room doctor informed me that Mom was anemic, and he was going to give her a blood transfusion. I remarked how strange this was since Mom had no history of anemia. The doctor responded that she had been anemic after her hip surgery. No one had mentioned this to us. If she had anemia after the surgery, wouldn’t there have been a plan in place to monitor and manage it?
Mom was admitted to the hospital and received her first blood transfusion. It barely moved the needle on her hemoglobin count. The attending physician told me he didn’t know why Mom wasn’t retaining the blood they were giving her. He said that, at her age, it usually wasn’t advisable to do endoscopy or colonoscopy procedures, so they would wait for Mom to make a bowel movement and test her stool for blood. If there was blood present, he would assume Mom had cancer and there wouldn’t be much to do treatment-wise. I slept on this information. Early the next morning, I texted the attending physician that I wanted Mom to have an endoscopy and colonoscopy as well as a CT scan of her abdomen. (I was surprised that hadn’t been done in the emergency room, to check for bleeding.) The doctor advised me that he would reach out to gastroenterology.
I had also let the doctor know that Mom had been having difficulty swallowing, so a speech therapist came to evaluate her swallowing function. As a result, the dietitian adjusted the consistency of her food to make it easier to eat. Mom was not eating much. She had low energy because of the anemia and obviously was not feeling well. The dietitian recommended a palliative care consultation. Meanwhile, the attending physician tried calling the gastroenterologist but did not hear back. Another day passed with no further examination or treatment other than blood transfusions.
I began to log into Mom’s patient portal to read the notes the various providers were recording in her chart. I was seeing things like “acute or chronic anemia” (how does one have chronic anemia, having never been diagnosed with anemia previously?) and “rule out GI bleed possibly due to NSAID use.” This note angered me. My Mom lived in assisted living. She did not have access to any medication other than what was given to her by the staff. She was prescribed Tylenol for pain as needed up to a certain dosage per day. So why were they putting “possible NSAID use” in her chart?
On April 30th Mom was finally seen by a gastroenterologist, who agreed to perform the endoscopy and colonoscopy over the weekend. Mom also had an abdominal CT scan that night and was given two more units of blood. During that transfusion her body temperature was difficult to read, and when they could get a reading it was averaging around 94 degrees. I thought either she was reacting to the transfusion, or she was bleeding somewhere and going into shock. The attending physician told the nurse to complete the transfusion. I expressed my concerns to the doctor, telling him that I felt Mom was in an end-of-life situation. He responded that, barring any complications, he expected her to make a full recovery. This was not an end-of-life situation, he said, unless she started to bleed profusely, which he didn’t think she was. I did my best to accept this and trust the treatment process.
I told her I loved her, and then she was gone.
On the morning of May 1st, Mom had an urgent episode of low blood pressure that required a rapid response team to intervene. They managed to get her blood pressure back to normal. The doctor told Mom that he wanted to place an IV in a vein in her neck to better manage her medication flow. Mom was scared and confused. She told the doctor she did not want the IV; she did not want any more treatment. I was used to this. Throughout her journey with dementia, it was a pattern for her to refuse treatment when she didn’t understand something. In a pleasant and clear conversation with Mom, I explained what was happening and asked her to let the medical staff stabilize her so we could learn the results of the CT scan and other tests and then make a plan together. She agreed and told me she loved me.
The attending physician asked for my permission to change Mom’s code status from do not resuscitate (DNR) to full code, meaning that all measures would be taken to save her. He wanted to move her to the intensive care unit but could not with a DNR status. I agreed.
Within the hour, Mom had a bowel movement and started hemorrhaging and vomiting blood. The doctor was unable to get a blood pressure reading and told me they could not save her. All I could do was tell her that I loved her, and then she was gone.
Looking back, I don’t understand …
Throughout Mom’s journey with dementia, I frequently worried about the choices I was making for her care. I was having to make hard choices in high pressure, emergency situations without fully understanding the consequences of the available choices. It was hard to get staff to help me think outside the box for care solutions. Looking back, I do not understand why hospice was recommended for a relatively healthy woman merely because she was refusing to take her medication. I don’t understand why a CT scan of Mom’s abdomen was not done in the ER during her final hospital visit. I don’t understand why we weren’t told she had anemia after her hip surgery. Mostly, I replay her last days, and the last 5 years of caring for her. I think about all the things I didn’t do, despite my soul wanting nothing more than to lovingly care for her myself. I should have, but I didn’t because I was scared. I was scared when I heard that safety would be an issue with Mom. I worried that if she stayed home with me I wouldn’t be able to keep her safe. In the end, I feel she was less safe surrounded by care 24/7.
Mom had many loving, caring caregivers. Nevertheless, I think insufficient staffing and too many complex needs among patients put healthcare staff in the position to make decisions that may make care easier but may not be the best for their patients. Despite all my advocacy for Mom, my love and care and many hours spent talking to doctors and researching her disease, I feel that I failed her.
On May 1st I lost my mother. The world lost a multi-lingual teacher who devoted 40 years of her life to teaching languages in the public school system. We lost a tremendous friend, a loving friend, a devout Catholic who prayed the rosary daily and offered sacrifices for everyone she knew who was suffering. Mom had a beautiful smile and a special compliment for everyone with whom she made contact.
I cannot bring my mother back, but I can continue to advocate for those who need help navigating the health care system for their loved ones. I will do what I can with what I’ve learned to ensure that others do not have to watch their loved ones die when, perhaps, better choices could be made.
This article has been reprinted with permission and can be found at Communications (halovoice.org). Click on Alerts. HALO, the Healthcare Advocacy and Leadership Organization, has a mission to “promote, protect, and advocate for the rights of the medically vulnerable through direct patient and family interactions; through intercessory prayer; through community education and awareness programs; and through promotion and development of concrete “life-affirming healthcare” alternatives for those facing the grave consequences of healthcare rationing and unethical practices, especially those at risk of euthanasia and assisted suicide.” Visit HALO’s main site at halovoice.org.