Pam has provided primary care for not only her children, but her husband, Bill, and later her mother. When she was 63, Bill had lung cancer, and at first he responded well to chemo. They thought he might beat it for awhile, but the cancer went into his cerebral spinal fluid, and he lasted three weeks from that time.
Her husband was not a cooperative patient, but her five adult children and their spouses all took turns coming out and helping care for him. Her daughter Jen is a nurse practitioner, and she set things up and ran them. They all took care of him as a team, and also relied on hospice for pain medications and other personal care.
He had to be turned every two hours, and Pam’s children inspired her as they stepped up to care for their father. She felt a lot of gratitude that they could care for him at home, and that all of her children were there. Her daughter recognized when his breathing pattern signaled that death was imminent, and she called everyone. At the time of his passing, all of the family were standing around his bed, touching him. Pam said that if he had to pass, that it was good to do it that way. After her husband’s passing, her son lead them in prayer. She said, “It was the best way I can think of, if someone has to die. It’s the best way to be. I would like the same for myself.”
If she had advice to give, she said to gather your family if that’s possible. “Sometimes it isn’t because of distance, but that’s a time when you really want your family around.”
In January of 2013, around five years after Bill’s passing, she had a feeling it was time to come stay with her mother. She had been coming to visit her periodically, sometimes for a few months at a time. She asked some of her local friends to keep an eye on her mom and let her know how things were.
When Pam arrived, her mom was still driving, but her eyesight was getting bad. Once Pam was here, when her mom’s license was up for renewal she voluntarily decided not to renew it. Pam felt grateful to have that time with her mother, because they had always been close. Pam lived far enough away that it was rare that she got to visit.
While she was here, they often reminisced, and in fact Pam interviewed her mom and transcribed the interview. Pam wrote a couple of books about their family. She had heard many of the stories before, but loved hearing them again from her mother. Sometimes they joked that they watched TV together with their eyes closed, because as soon as they sat down to watch something they would both drift off to sleep.
As time passed, Pam’s mom got to the point where it was an effort to leave the house, and eventually it was hard to leave her room as well. Her mom didn’t want anyone else to come in. She liked to visit with people, but she only wanted Pam to take care of her. Sisters from the church came to sit with her mom so Pam could run errands. When Pam came home, her mom would tell her, “I don’t need to be babysat.” Her mom was very independent.
Near the end, Pam’s mother seemed ready to go. She wanted to be with her husband, who had already passed, and would often say in the morning, “Well, I thought Dad might have come to get me last night, but here I am.” When the doctor came to consult about hospice, he kindly asked, “Barbara, what do you want?” She said, “I want to die. I’m tired of this.” He said, “You know, we have all kids of medicines these days that can keep you going, but they have side effects and interactions. She said, “I don’t want that. I just want to die.” She went on hospice, and they took her off of a lot of her medications. She deteriorated quickly.
For the last month or so before Barbara passed, Pam’s daughter flew out to help as well. Barbara worried about becoming an addict, and they would tease her about knocking off a 7-11 to get what she wanted. Pam set Barbara up with bells to ring when she needed help, and she would call for her at every hour. Sometimes Pam would sleep next to her on the bed or in a chair nearby. Her mother insisted on getting out of bed sometimes when she was not really able. She wanted to get up and leave, and they made rails for her, but she still ended up on the floor at times.
Jen had taken leave from work, but couldn’t take anymore. They decided to take Barbara back home to Illinois. They rented a travel trailer, and Pam’s sister Shirley and a friend had been school bus drivers, so they knew how to drive. They rigged up a bed on the dining room table, and it was just the right size. They rigged up some rails, and drove back to Illinois.
They set up a hospital bed in Jenny’s living room, and hospice could assist with care there. Barbara’s 90th birthday rolled around, and all five of Pam’s children and their spouses, as well as most of her grandchildren came. They had cake and ice cream, although Barbara was able to eat only a little. The celebration took place in early May, and a week later, Barbara passed away. She had always said, “I just want to go to sleep and not wake up,” and that is basically what she did.
Pam had been sleeping next to her and holding her hand almost all night, because her breathing was becoming labored. Pam went to get some water in the kitchen, and when she returned, Barbara was gone. Pam felt very grateful that she was in a position to care for her mother. She was the only one out of ten children (2 deceased) who was able to come and stay with her.
Pam said, “The idea of caring for her was very sweet to me.” When Pam was young she had polio, and her mother had to make her exercise. She says she know she was not cooperative, but her mother cared for her, and all of the children, including a brother with serious health issues. “It was just sweet to me that I got to return that caring.”
She had friends who helped her by staying in touch. They were understanding if she could talk for two minutes and then might have to stop and take care of her mother. Her faith helped her through, and was an anchor. Her church community helped as well. Her hospice nurse lived right down the street, and was always there to help—far and away beyond what her job as a hospice nurse was. Pam also had several wonderful neighbors that she knew she could call at 1:00 in the morning to help lift her mother.
Pam said, “No matter how much you love someone it is always stressful to care for them all the time, but it was also a very sweet experience.”
Thank you for sharing your sweet experience, Pam. I honor your work.