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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 that my mother had had a stroke. This was a problem since my mom lived in northern 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 that something was wrong. The nurses gave us no information and told us to come back to the hospital at 6am to talk to the doctor.
I was very saddened to see my once robust and brave mother reduced to a frail woman with obvious physical effects from the stroke. Luckily the stroke had only been a minor one that didn’t affect him mentally, but it was a game changer. If she hadn’t had a stroke, I wouldn’t have seen her for months since I had just visited with her that summer. We spoke weekly on the phone, but she was not open about her health.
My mom and I weren’t that close, in fact she had been with me less than two weeks a week for over 30 years since I graduated 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 with 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.” His doctor appeared and before entering his room, he told us bluntly, “Your mother has cancer, she has cancer of the liver and brain.” I was shocked, but immediately asked, “How much longer does he have?” He replied: “I would not 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 coming 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 made it clear to me that she wanted to be on her own. I am an only child, my mother was divorced and her only brother had died a couple of years before. She had friends, but this was a family situation and that was me.
The doctor rejoined us in the hallway, and thanked me for taking her home with me. I thought it was really weird, but he said that many people don’t want to deal with 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.
In the next 48 hours, my son and I prepared to bring mom home with us. Thanks to her many friends, we were able to get someone to look after her house, find new owners for her six beloved cats, pack essentials and cherished memories into our SUV, and take her 14-year-old Labrador. Back in Houston, my husband took care of the logistics of setting up a hospice. My son and I spent New Year’s Eve having a late dinner, grateful for the opportunity to be there for Mom when she needed us most.
The next morning, I went to Walmart and made my first purchases of 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 welcomed Mom, took her home for one last visit, said goodbye to friends and neighbors as we headed back to Texas. The drive back was even longer, mostly because we had to stop several times for food, gas and biological breaks.
For the first few nights, Mom slept comfortably in a recliner, but soon our living room off the master bedroom became her bedroom. Hospice provided everything needed: hospital bed, bath chair and oxygen machine. We were lucky enough to be able to have Mom there with us, just 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 equipment.
I had no experience dealing with a dying parent. I’m also not very skilled with medical procedures, but the hospice staff took time to teach me how to handle medications and be aware of the stages of death and dying. It was very emotional and my mother went from mobile to bedridden in 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 would come several times a week and my husband and I could take a much needed break of 1-2 hours.
I made him small plates of food with a couple of bites of yogurt, fresh fruit, oatmeal, fruits and vegetables. I had some plates that had little sayings on them, so I encouraged her to finish the little meals to read the plate. It was a fun little game that he enjoyed. I cut her hair and she was pleased with her new look. And he loved the new clothes I got him, warm shirts and pajamas and fuzzy slippers.
My daughter flew in to see her and spend one last weekend together. I was very proud of my daughter’s gentle nature. Although we couldn’t get my mother to remember the family history, it was time well spent. It was transformative for my daughter to see imminent death as another stage of life.
I also thanked the hospice carer who came twice a week to shower, make his bed and brush his teeth and wash his 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 moans at night. This started over the last two weeks while she was still alert and communicating with us. The terrible guttural sound was very disturbing to me and my husband. The hospice nurse told us that she was probably in some emotional pain. My mother had rejected religion most of her life, yet she decorated her home with pictures of Christ and Mary. She had asked us to bring 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 she seemed to enjoy it as he sang her some hymns. But when the nocturnal groans 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 her, and she seemed calm as she left. That night the moaning stopped, I think her emotional pain had been healed.
The next day my friend came and recited the rosary to my mother. My mother was much weaker but again she smiled and shook her hand in thanks. I think my mother had finally found religion and her time on earth was over. The next day, my mom went into a transition phase. Since I work from home, I took our phones and set them up as a baby monitor so I could hear his breathing when I was in my office, just a few steps away. I would go in, talk to her and tell her that 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. Late in the evening of Friday, January 30, 2009, he just stopped breathing. My husband felt the change.
We called the hospice and they sent a nurse to confirm her death. As per his instructions, we made arrangements for a funeral home to come and take away his body. Everyone treated her with respect. After she was loaded into the hearse, my husband and I went back to her room. There was a rose left on his bed.
We sat down and cried. The experience brought us closer. We begin the process of returning to our normal lives. Hospice has not forgotten us. After completing the paperwork, they called and offered to stop by our house if needed. The medical supply company arrived and collected all the supplies. Our house has been restored again to live, not to die.
A year later, what have I learned from the experience?
– Do the right thing. Being there for a parent is the right thing to do. This can be hard if you haven’t had 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 appreciate 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 that we took 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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