I had the privilege of being at the bedside for much of the time during my mother’s and sister-in-law’s passing. Unfortunately, not a lot has changed from Colorado to Iowa or in the nine years that have passed since my mother’s death and that of my sister-in-law. In fact, thousands of people throughout the country are released annually to family members to die at home. This sounds wonderful. In reality, it’s not.
Family members are ill equipped to handle the medical and psychological burdens
After experiencing this twice and discussing it with friends and family who have encountered the same thing, I have concluded that dying at home is excruciating for family members who are ill equipped to handle the medical or psychological burden. And because the patient is in a drug induced coma much of the time, we have no idea how they feel about it at the end. Decisions are made days, weeks, maybe even years before. Many are fearful of being “warehoused” and dying alone without family or friends. Understandably, these thoughts shape their decisions. However, the patient has little idea of the impact of their decision on their family members, nor the kind of sacrifice, or emotional roller coaster they have signed their loved ones up for. I wonder if there’s not a better way.
In my situation, both of my loved ones died in a morphine-induced haze. Days before their deaths, neither really recognized family members nor were able to have a conversation. They were released from hospital – weak, but cognizant and able to converse – to family members with lots of pain meds and the instruction to give every two hours or “as needed.” The next day, they were barely responsive and incoherent. Did these people really have pain? Or were we just keeping them “comfortable” for our sakes and the sake of the medical establishment?
In my mother’s case, she was suffering from COPD from a lifetime of smoking. She was released from a rehabilitation facility, because of a broken collar bone due to a fall, into our care. She was scared of dying, but she had decided she didn’t want to take any more meds. She was tired. She was rational enough to make that decision. So, she came home to die. My sisters descended from other states to assist. We were told she would probably last around a week. She lived for three. Having not eaten or barely taken a sip to drink, she wasted away, and I believe died of starvation. To watch a family member, starve to death while being drug addled is a terrible thing. Especially when they were very lucid before being released.
We were exhausted providing round the clock care. A certified nursing assistant, nurse and social worker would come every day, but only for an hour at most.
Positives come from caring for a loved one who is dying
The only positive to come from the experience was that my sisters and I became closer. I was extremely grateful to them for being here as I had provided most of the care for our mother for years because we lived within blocks of each other, and my sisters lived out of state. I was the fortunate one as I had years of sitting and chatting with our mother. They did not. Upon their arrival, they were faced with a non-responsive shell of a person who no longer had a coherent thought.
They stayed at her house, and I got to go home at night, returning every day to sit with her and take care of menial household duties and go through years of paperwork. Each sister took turns to be with her at night, giving her medicine, talking with her and hoping for a sign that she knew them. I will be forever grateful to them for the care they provided our mother during her last days. Three weeks of keeping up that type of schedule is exhausting – emotionally and physically. They were wrecks. They had put their lives on hold to help. It was a relief when she died.
Situation replays itself
This was nine years ago. Fast forward to two weeks ago when my husband and I were informed that his sister was being released from hospital into at-home hospice. She had a raging infection and stage IV colorectal cancer and would die from sepsis. She too wanted to die at home. Her fiancé whom she did not live with, and adult daughter took her home on Wednesday. We arrived Thursday evening. My husband had spoken with her Wednesday morning and had a good conversation. By the time we arrived, she was in a morphine stupor. Do you know the side effects of morphine -- slow heart rate, weak or shallow breathing, breathing that stops during sleep, extreme drowsiness and death? All the same indications of active dying.
Her daughter had spent Wednesday night with her, medicating her, and was frightened. She was doing everything the nurses told her to do. She sat vigil for days and stayed up at night, every night. Her boyfriend went home every night. By Friday, I could see my niece’s exhaustion and offered to take over. She allowed me to stay by myself for a few hours while she returned home for some much-needed rest and to see her 7-year-old daughter. She then returned that night. The following day, I spelled them both again.
Even though my sister-in-law was on morphine she rallied, and we could converse slightly. My husband would say something, and she would respond and answer him. I knew she knew us. And that was important to us.
Exhaustion and guilt
I again offered to stay the night. My niece agreed and allowed us to stay Saturday night. And I have to say it’s a lot easier when there’s someone with you. I can’t imagine what my niece would do if this lasted much longer. We were returning to Colorado, and she was an only child who had her mother’s stoic streak and had difficulty asking for help. We called other family and encouraged them to reach out to our niece to help her. They did and one even stayed two nights, giving her much needed rest. Finally, my sister-in-law passed. But not after her only child was exhausted and guilt-ridden.
I can’t help but wonder if the drugs are not for the patient, but so that family can handle the situation a little easier. But it is not easier. I recently asked a friend about this as she had experienced a similar situation when her mother was dying. She and her brother moved to California to be with their mom. They provided care, doped her up and even gave her morphine in beer because the mother craved beer so much. “We didn’t know what we were doing. We could have killed her. But she was dying, so we wanted to give her what she wanted,” said Jackie Brinkman. They even investigated their state’s death with dignity laws and came to the conclusion that with a week to live she did not qualify. California’s law, similar to the law in Colorado, requires the patient to be diagnosed with a terminal illness (check) and be competent to make the decision (check – if making the decision upon release from hospital). In addition, the patient must locate two doctors willing to write a prescription and have appointments with the doctors two weeks apart. This obviously was not possible, not when the medical establishment gives you a week to live. So instead of offering this humane way of saying goodbye as an option, we drug and drag out the inevitable. This familiar tale is told hundreds of thousands of times in the U.S.
It reminds me of how in the 1950s and ‘60s the medical establishment thought it best to drug pregnant women during childbirth, because “they were frightened and couldn’t handle the experience.” Throughout the years, we have discovered that being aware of what’s happening can be liberating for some.
Maybe it’s time we looked at death in a similar way.