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Caring For a Dying Parent – Do the Right Thing
The week after Christmas 2009 I got a call from a friend of my mother’s telling me that my mother had suffered a stroke. This was a problem since my mom lived in North Arkansas and I live in Houston. My son and I left the next morning, on the road for 11 hours. When we got there and visited her in the hospital, I felt something was wrong. The nurses didn’t give us any information and told us to come back to the hospital at 6am to talk to the doctor.
It saddened me greatly to see my once strong and courageous mother reduced to a frail woman with obvious physical effects from the stroke. Fortunately, the stroke had only been a minor one that didn’t affect her mentally, but it was a game changer. If he hadn’t suffered a stroke, I wouldn’t have seen him for months, since he had just visited that summer. We talk weekly on the phone, but she was not open about her health.
My mom and I weren’t that close, in fact she had spent less than two weeks with me in over 30 years since I graduated from college, with the exception of living with me at my house in 2000 for six months when she was passing. a traumatic divorce at age 70. But this was a time to put the past aside, forget history and focus on the present, today.
The next morning, my son and I were walking down the hall to my mother’s hospital room to meet the doctor. Even though my son was 23, I wanted to prepare him. I remember saying, “whatever the news is, we’ll deal with it.” Her doctor appeared and before entering her room, told us flatly, “Your mother has cancer. She has cancer of the liver and cancer of the brain.” I was surprised, but immediately asked, “How much longer does he have?” He replied, “I wouldn’t estimate more than 60 days.” That diagnosis hit me like a ton of bricks.
My son looked at me and I said, “Well, she’s going back to Texas with us.” We all took a deep breath and entered my mother’s room. She asked the doctor and he told her the news. She replied, “I’m glad you told me the truth. I can deal with it.” The doctor advised her to spend her time with us and she listened. Now this was unusual as my mother was very independent and had made it clear to me that she wanted to be alone. I am an only child, my mother was divorced and her only brother had died a couple of years earlier. She had friends, but this was a family situation and this was me.
The doctor met us again in the hallway and thanked me for taking her home with me. I thought it was very strange, but he said that many people do not want to face death and put their parents in nursing homes. It wasn’t a problem, she was my mother and this was one of those times you just step in and do the right thing.
Over the next 48 hours, my son and I prepared to take mom home. Thanks to her many friends, we were able to get someone to take care of her house, find new owners for her six beloved cats, pack essentials and cherished memories into our SUV, and bring her 14-year-old Labrador. Back in Houston, my husband took care of the logistics of setting up hospice care. My son and I spent New Year’s Eve eating a late dinner, thankful for the opportunity to be there for Mom when she needed us most.
The next morning, I went to Walmart and did my first shopping for adult diapers so my mom would travel comfortably. I remember thinking that this was no way to start the new year.
Early Friday morning, we warmly gathered Mom, took her home for one last visit, said goodbye to friends and neighbors as we headed back to Texas. The return trip was even longer, mostly because we had to stop several times for food, gas refills and bio-breaks.
For the first few nights, Mom slept comfortably on request in a recliner, but soon our living room off the master bedroom became her room. The hospice provided all the necessities: hospital bed, potty chair and oxygen machine. We were lucky to be able to have mom with us, steps away when she needed help. The hospice team included medical staff, a psychologist, caregivers and a minister. They handled all the paperwork so we could focus on spending time with my mom. They brought supplies and ordered materials.
I had no experience dealing with a dying parent. I’m also not very proficient with medical procedures, but the hospice staff went out of their way to teach me how to handle medications and be aware of the stages of death and dying. It was very emotional and my mom went from cell phone to bed within a couple of weeks. I developed a great respect for people who work with the chronically ill or dying. It is very tiring and emotionally draining. Fortunately, my son came several times a week and my husband and I could take a much needed 1-2 hour break.
I made her small food plates with a couple of bites of yogurt, fresh fruit, oatmeal, fruits and vegetables. She had some plates with little sayings on them, so I encouraged her to finish the tiny meals to read the plate. It was a fun little game that he enjoyed. I cut her hair and she was happy with her new job. And he loved the new clothes I bought him, t-shirts and warm pajamas and fuzzy slippers.
My daughter flew to see her and spend one last weekend together. I was very proud of my daughter’s kind nature. Even though we didn’t get my mom to remember the family history, it was time well spent. It was transformative for my daughter to see impending death as just another stage of life.
I also thanked the hospice carer who came twice a week to shower her, make her bed and brush her teeth and hair. He was kind, gentle and patient with my mother. It also gave me a couple of hours of “free time” to sit and relax at home.
Perhaps the most disconcerting issue was my mother’s moaning at night. This started within the last two weeks, while he was still alert and communicating with us. The terrible guttural sound was very annoying to me and my husband. The hospice nurse told us he was probably in some emotional pain. My mother had rejected religion most of her life, but she decorated her house with pictures of Christ and Mary. She had asked us to take her favorite photos with us so that we could decorate her room with them.
My mother declined her time to speak with the Hospice Minister, but seemed to enjoy herself as she sang him some hymns. But when the nocturnal moaning continued, I made the decision to contact a Catholic friend. She had a minister come and pray with her. My mom responded with a smile, thanked him, and seemed relieved as she left. That night the moaning stopped, I think her emotional pain was healed.
The next day my friend came and recited the rosary to my mother. My mother was much weaker, but she smiled again and shook his hand in thanks. I think my mother had finally found religion and her time on earth was over. The next day, my mother went into a transition phase. Since I work from home, I took our phones and set them up as a baby monitor to listen to her breathing when I was in my office, just a few steps away. I would go in, talk to her and tell her she was loved, but it was okay for me to let her go. His body was giving out, his hands had a funny smell which the nurse explained was a sign. On Friday evening, January 30, 2009, he stopped breathing. My husband sensed the change.
We called the hospice and they sent a nurse to confirm her death. As per his instructions, we had made arrangements for a funeral home to come and collect his body. Everyone treated her with respect. After loading her into the hearse, my husband and I went back to her room. There was a rose on her bed.
We sat and cried. The experience brought us closer. We began the process of returning to our normal lives. Hospice did not forget us. After completing the paperwork, they called and offered to stop by our house if needed. The medical supply company came and picked up all the equipment. Our home was restored to a place to live, not to die.
A year later, what did I learn from the experience?
– Do the right thing. Being there for parents is the right thing to do. This can be difficult if you didn’t have a perfect relationship, but it’s the right thing to do.
– Hospice can teach you how to be a good caregiver. Just be teachable.
– Don’t expect the experience of dying to be perfect. Nothing in life is perfect, so why will this time be any different?
– Keep a diary and cherish the moment.
I am at peace with my decision. I am proud of how my son, daughter and husband worked together to make my mother’s final days peaceful and full of love. I am proud to take care of mom at home, with the help of the hospice.
Life takes on a new meaning when you face death. And in the end, everything is fine.
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