By Wendy Hughes
This is a republication of an essay submitted last summer after my personal loss. I am happy to offer it again since I think the SIN series is important. Religion and church attendance are useful to the religious for more than worship. The fellowship of congregations provides support during life passages, births, holidays, weddings and funerals. I found a great deal of support from my secular community.
“No one here gets out alive.” – Jim Morrison
Maybe a hundred years ago, maybe even in my own lifetime, it was more common for people to die at home, and for family members to see firsthand the process of dying. But since the mid 20th century, except for health professionals, military personnel and witnesses to violent crimes, I think few of us ever see anyone die, let alone see anyone die at home of natural causes.
By chance I happened to be listening a couple of weeks ago to This American Life podcast, an episode called Death and Taxes. It brought to mind an article I’d read in The New Yorker in 2010, “Letting Go” by Atul Gawande. Both the podcast and the article were about hospice care – end of life decisions that are not easy for anyone to contemplate for their own lives or for the lives of those we love. The podcast reminded me that maybe I ought to review my mother’s advance directive, and review the New Yorker article, because she was growing older and more fragile. When I phoned the gerontology clinic to have a little chat with the social worker there, she said she was glad I called if I had questions, that most people wait too long to ask about hospice.
My mother was diagnosed with dementia associated with her age about five years ago. Her demeanor was about the same as always, but she’d begun making little mistakes. She’d always been a good driver, but one day, about 20 years ago, when I was a passenger in her car, she changed lanes without looking and cut off another driver. I didn’t think too much about it at the time, but as I look back on it, it was the first in a gradual spiral of changes in her that constituted her decline into what used to be called senility.
When I realized she didn’t know what financial records she was supposed to give the tax accountant, I offered to help with that annual chore, and gradually I took over as her “secretary.” She added me to her checking account, and I paid her bills, including insurance premiums. This is relevant. She’d had a persuasive insurance broker who sold her two Long Term Care insurance policies. That was long before she needed them, but they turned out to be wise investments.
We, her family, live in a cluster within a couple of miles of each other in a suburb of Los Angeles. We helped her move closer to us so it would be easier to visit her often. We took turns having dinner with her, celebrating holidays and birthdays at her house, and doing her shopping. It wasn’t always easy – negotiating with each other over what nights we needed for other activities, the strain of being away from our partners at dinner time at least twice a week, the double duty taking care of our own lives, and simultaneously taking care of her was hard, but we kept her in her own home, and she was mostly happy.
I was describing her problems with memory to a fellow skeptic, and he encouraged me to take her to a specialist, a gerontologist. I followed that advice, and the clinicians administered a battery of tests to get a baseline of her mental state, and the series of tasks was maddeningly revealing. One of them, the clock face, was startling. The doctor placed a sheet of paper in front of her that had a circle printed in the middle, and asked her to draw the numbers on a clock. In my mind, it was easy: 12 at the top, 3 on the right side, 6 on the bottom and 9 on the left; then fill in the other numbers. She couldn’t do it. She bunched all the numbers from one to twelve on the righthand side of the circle. It makes tears well up in me to this day. I wondered when this change had occurred, and what kind of brain damage causes one to lose that ability.
The diagnosis was mild dementia. In those days, the only way Alzheimers could be diagnosed was a postmortem examination of the brain. Dementia is a catchall phrase for several kinds of mental changes associated with advanced age.
The social worker had a talk with me and explained that it is a progressive disease. That means that the symptoms were going to get worse, and if I had questions, I could always call on her. Social workers know a lot of stuff – I did call on her, and was grateful every time.
Taking care of business
My mom had been living alone; I figured I’d better find out about the provisions of those long term care insurance policies. One of them would pay the same amount every day for the rest of her life and the caregivers were required to come from an agency. I don’t think they even sell those anymore. The other paid roughly the same amount per day, but only for two years, but didn’t have the requirement for an agency. It would pay anyone but a family member. I invoked the lifetime policy and found an agency that provided caregivers. I asked for someone to come four hours a day to get my mom used to having a caregiver in her house, and I wanted someone to stay with her for the rest of her life. I thought it would be better if the caregiver could always remember my mom when she could still talk, instead of seeing her for the first time, possibly unconscious. My mom didn’t want a caregiver, and getting someone to stay with her for the rest of her life was – problematic.
The social worker explained that because my mom couldn’t remember what she couldn’t remember, as far as she was concerned, there was nothing wrong. Dementia is a lot harder on the family and friends of the patient than it is on the patient. They don’t think anything’s wrong, and they think they can take care of themselves, all the way to the end when they can’t even take themselves to the bathroom.
We had a security system installed in my mom’s house that had cameras recording five rooms in the house that I could access with an app on my smart phone. I wanted to make sure nobody was hurting my mom when I wasn’t there. That turned out to be a non-issue – but I’d read horror stories of elder abuse, and the security system turned out to be useful in other ways.
When my mom fell in the night, we realized we couldn’t leave her alone at night anymore. My mom’s housekeeper was about 70 years old, and the income for staying overnight was definitely interesting to her. My best friend, Heather, was between jobs, and I asked if she’d take turns with the housekeeper, and it worked out well. My mom and Heather loved each other, and my mom was always happy to see her. I invoked the other insurance policy. We supplemented the security system with a motion detector that would wake the overnight caregivers if my mom tried to get up in the night. But one day she fell and broke her foot, and that was the beginning of a steeper downward spiral.
Adding injury to injury
A broken fifth metatarsal requires avoiding placing weight on the injured foot. For seniors, every day of inactivity, not getting up to walk from one room to another, is like three weeks for a healthier younger person. The muscle atrophy is much more severe and rapid. If the bone didn’t heal right, she would have required foot surgery, but not walking was also bad for her. There was no middle ground.
There is a high burnout rate among caregivers. The ones that are attractive and young and strong are also the demographic that has families of their own, children to care for and other responsibilities. We liked many of the caregivers, but finally, after over three years of mostly good experiences with caregivers for my mom, we had the perfect combination. One young woman from the agency for daytime Monday through Friday, another for daytime on the weekends, and the two friends of the family for overnights. These are the people who stayed by my family after my mom’s sudden and unexpected illness.
I guess I’d begun to think that besides my mom’s dementia, she was otherwise healthy. I could see that she was not as strong as she’d been before the broken foot, but one night she threw up. At the emergency room, the doctors said that it appeared there was a mass in her bile duct (translation: a blockage that was causing bilirubin to back up in her bloodstream, and causing jaundice). The recommendation was to do a “procedure” – without going into detail, it was supposed to be quick and easy, and in fact was an outpatient procedure in younger patients. It didn’t work. The recommendation was to try again, this time with a doctor who had more experience with this problem. He also failed; hospital personnel were assuring me that if they did not operate, my mom would die. That’s when I began to ask about hospice.
Hospice, not homicide
Hospice care is completely covered under the Medicare Act. The provisions are that the patient is suffering from a terminal illness, is seeking comfort and not a cure. There are agencies that provide personnel who have experience in providing equipment and medicines to assure a minimum of pain, and assistance for the family of the dying patient. I learned a lot.
I was startled when the hospice liaison said there would be no IV fluids – only food and drinks that my mom could take by mouth. She could have a catheter, and disposable underwear, and pain killers that are considered controlled substances, but no life prolonging medicines. All she had was sublingual drops of morphine, Ativan and atropine. The morphine controlled pain – I know it works because I had a dose of it when I had a broken leg once. The Ativan was to control agitation – it helped her sleep. The atropine is normally used to help clear up eye infections, but sublingually, it helps clear the lungs; it stops the “death rattle,” a symptom of lung congestion after the patient can’t swallow anymore.
The hospice liaison was trying to talk with my mom in the hospital – she was yelling, as a matter of fact. I said she didn’t have to yell, that there was nothing wrong with my mom’s hearing – but that I doubted she could hear anything anyway. The liaison started talking about my mom’s spiritual journey – and my daughter was standing behind me motioning to the woman to stop talking about those things (making a horizontal motion with her finger under her throat), but I could barely wait to put a status update on Facebook asking if any of my friends knew whether patients near death can still hear what’s being said around them.
The last thing my mom said to me that I could understand was that she wanted to go home. I told her we were taking her home in the afternoon. My sister waited to receive the hospital bed and other equipment – my mom rode in an ambulance and was carried on a gurney in the elevator to her apartment. Our daytime nurse offered to stay with us for the rest of my mom’s life, and Heather offered to stay every night because the other overnight caregiver doubted her ability to handle this crisis, although she came every day to sit by my mom, crying frequently.
Heather and my daughter and I camped in my mom’s room every night. We had to get tough with the hospice service on only two occasions: they for some reason had a contract with a pharmacy that was not open weekends, and we were afraid of running out of the drugs; and we didn’t like one of the hospice nurses. We discovered the family is in charge, and they accommodated us, apologizing repeatedly.
In the movies, people die fast. Not so much in real life. In the movies, people die quietly. Not so much in real life (or death, in this case). At first we could give my mom little sips of water by creating a little vacuum in a straw, but we couldn’t even do that after she couldn’t swallow anymore. The last solid food she had was ice cream my sister fed her with a spoon – I’m glad she enjoyed that. Her breathing was noisy and irregular, sometimes with long pauses between breaths. I would hold my breath to see if this was her last one – and then sigh with relief as she inhaled again. She slept with her mouth open, convenient when the drops of medicine had to be put under her tongue, but it looked uncomfortable. We found a list of the symptoms of death online – some of it was useful, some of it was bordering on woo, but it was a useful resource because I could tick off the symptoms my mom seemed to show.
Not knowing how long it was going to take, we cleared our calendars, and stayed in her room, except for zooming home to shower and get clean clothes. We just needed to be there. Finally, one morning I was asleep when my daughter and Heather got up to give my mom her two hour dose of medicines, when she seemed to stop breathing for real. My daughter woke me up – Heather suggested getting a stethoscope. I ran to get a knife to hold under my mom’s nose – there was no fog on the knife. My daughter was about to go get the stethoscope out of her car, but I suggested the blood pressure monitor – it has a little gauge to read the pulse. She wrapped the cuff around my mom’s arm, and at first there was a beating heart on the readout, indicating a pulse. She pumped up the cuff again, and the monitor gave an error reading. She let it deflate, then pumped it up again, and there was no reading at all.
We cried, we called the hospice to send a nurse to pronounce her, and Katie and Heather picked up bagels and coffee. Hospice was not what I expected, but I am proud that we brought my mom home instead of subjecting her to surgery. She would not have understood post surgical pain – she would not have benefitted by having her life prolonged at the expense of the quality of that life. All I was doing was following the precise conditions set forth by my mom in her advance directive. I am eternally grateful that she left that trail of crumbs for me to follow. I had checked with her about two years ago – she did not believe in life after death. I think we took good care of the one we knew about.