Hospice Volunteers News
Hospice volunteer eased couple's most difficult 'journey'
BRUNSWICK — Peggy and Phil Mason were high school sweethearts. Although a year apart at the Catholic high school in New Jersey where they met, they were in school clubs together. During his senior and her junior year, they were cast in lead roles in "The Boy Friend," a play in which Phil's casting in the title role matched his on- and off-stage relationship with Peggy.
"So we sang love songs together on a high school stage, and we dated ever since," from 1967 until they were married in 1972, Peggy remembers.
The couple moved to Maine in 1973, living in the Bangor area because Phil worked at Cianbro. The Masons then resided in Winslow for 17 years before moving to Brunswick in 1990. They raised three daughters in Maine. The daughters now live in different states.
Peggy and Phil celebrated their 35th wedding anniversary Sept. 23, 2007. Aside from some lightheadedness while painting on the ladder that summer that led Phil to get diagnosed with hypertension at the time, both seemed to be in good health.
Not long after their anniversary, Peggy noticed that Phil just didn't seem as sharp as normal. It took a little convincing, but Phil went to see a doctor as advised.
The exam revealed that Phil was suffering from a brain tumor that had already started affecting his functionality.
Peggy hadn't noticed symptoms of the tumor until a half a week before she called the doctor.
"He was diagnosed last Veterans Day," Peggy said. "I called up the girls to say, 'Daddy's at the ER. He has some kind of tumor in the brain and we're going to Maine Med immediately.'"
Daughters Amy, Sarah and Kristen all came as soon as they could, "and we spent two weeks together living in hospital rooms as we started at Maine Med and then when they did the MRI and decided that because Phil was left-handed and the tumor was in the right temporal lobe, that he needed to have the surgery done at Mass General, and by the end of the week they were able to get a bed at Mass General and then, we spent the next week at Mass General, sleeping in Sarah's little apartment (in Waltham, Mass.)," Peggy explained during a recent interview.
Despite the medical intervention, Phil died Aug. 3 of this year. Peggy says Phil called his experiences after being diagnosed with the tumor an "odyssey." She called it a "journey," one that would take a physical toll on them both.
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Hospice At-A-Glance
Hospice is
an interdisciplinary program of care that provides relief from symptoms as well as emotional, social, and spiritual support to people at the end of their lives.
CHANS Hospice Care Program is
Medicare-certified to provide the full range of hospice care services including nurses and other medically trained professionals including but not limited to Nurses, Home Care Aides, Social Workers, Physical and Occupational Therapists, Chaplains and Volunteers.
Hospice is an interdisciplinary program of care that provides relief from symptoms as well as emotional, social, and spiritual support to people at the end of their lives.
Volunteer services include a resource center, support and bereavement groups and trained volunteers to provide companionship, respite, transportation and support. Half of what they do deals with grief as well as dying.
Programs include:
• Direct Care Hospice Volunteer Services (private home visits, nursing home visits, companionship, respite for caregivers, transportation, shopping and errands, and other help.) For more information call 729-6782
• Grief Support Services (adult grief support meetings, grieving parents support meeting, structured grief support program call (207) 721-1357
• Grieving Children's Program (Grief support for children, teens, and families call (207) 721-1257
• Anticipatory Grief Services (Living Loss, Living Hope Program, interview required. Call (207) 721-1357
Source: http://www.hospicevolunteers.org/ and Hospice pamphlets. |
A Time for Hospice
Despite the painful context for the last journey she shared with Phil during his lifetime, Peggy now focuses on the many blessings that arose along the way. One of them, Hospice volunteer Herb Rowen, sat next to her during a recent interview with The Times Record at the Hospice Community Center on Baribeau Drive.
Hospice volunteers provide an array of support services for families of individuals as they come to grips with the end of their lives.
By May, Peggy said it became clear that the Phil needed to become involved with the local Hospice program. Phil was matched with Rowen, a retired internal medicine doctor from San Francisco, who had an good understanding of the physical symptoms of the tumor in Phil's brain. Peggy explained that in the case of right brain injuries or tumors such as Phil's, a left side "neglect" results. The condition often comes with a sense of well-being that the afflicted person can do what he or she has always done.
Phil had no awareness of his left side, but that did not prevent him from trying to get up.
"He just couldn't comprehend the limitations of the tumor, and in a way I remember feeling that was a blessing," Peggy said. "Because I think if he realized ... how devastating it was and the progression of it, it would have really been harder for him to handle. Throughout this odyssey, he kept his sense of humor, he kept his gentleness," on the whole.
He thanked his caregivers all the time, Peggy said, and never took them for granted. One day he gave copies of "An Old Irish Blessing" to all his caregivers.
"But, you couldn't leave him alone because he'd want to get out of bed," but couldn't stand, she said.
Peggy said the first day she brought Phil home in March from Winship Green Nursing Center in Bath, she was only gone for a minute to tend to the laundry. She heard a thump, and found her husband half leaning into his wheelchair, half getting up because he thought he could walk.
Rowen said that Phil needed someone with him all the time because his brain tumor prevented him from knowing anything was wrong. The retired doctor said he believed Phil knew on some level that something was wrong and would get nervous when Peggy wasn't there. That's why it was important to have someone he knew and trusted with him at all times.
"So the purpose of Hospice volunteers is to be able to come in to give me or my daughters a two-hour period of respite so we could — just go out," Peggy said. "We could either leave the house or go upstairs and just ... To me every cell of my body was on call."
Having a male Hospice volunteer was beneficial because all of Phil's familial caregivers were female, Peggy said. She, her daughters and Phil's sister, Joanne, cared for Phil.
"(Hospice) actually chose Herb because he understood what the tumor was doing to Phil, — physically, mentally, the whole works," Peggy said. "They all have different roles they play depending on the person, but if it was someone else who didn't understand that, I could have gone into another room but I wouldn't have had the respite," Peggy said, illustrating the importance of matching client and volunteer.
"The first time (Rowen) came, I went upstairs and I said I'm taking a nap. I hadn't had a nap in 10 months," Peggy said. The tumor affected Phil's sense of time, and because Peggy was the center of his world, caring for him demanded a lot of her time.
"I was never down until the respite took over," Peggy said. She had run a full design studio but after the diagnosis, "My whole world became the room Phil was in," and then the bedroom when he was home.
Peggy said that Rowen "wasn't Phil's doctor and he never assumed that role," but "having medical insights, he was able to explain sometimes why (Phil would be prescribed) certain medicines." Those insights increased her awareness and helped her anticipate what Phil might need next.
Rowen added, "I could explain things that Peggy already had been told but she had some question (no one likes to call the doctor every 10 minutes). It's important, I think, for me to know that I'm not Phil's doctor; that's not why I was there. But I could explain what the other doctors were doing."
Why volunteer?
Rowen, who moved to Maine in 1999 and lives in Pownal, said, "I think it was about 2002 when I decided that retirement was great but I needed to do something."
His mother had died a few years earlier and had received Hospice care where she lived in Florida. "I was impressed by that, and thought I might do something like that," Rowen said.
He estimates he maybe has worked with a dozen or so Hospice clients since becoming a volunteer.
"It's different from being a doctor in that you're not having to direct patient care, but it's the same as being an internist in that you're still used as ... a resource."
Of his volunteer experience, Rowen said, "One of the things that surprised me that I hadn't thought about before I entered the Hospice program was that when you have a Hospice client, it's not just the client. It's the family, whoever the caregivers are — you help them, you try to, you should try to, as much as possible."
And while it wasn't the case with Phil, Rowen points out, "Sometimes the client, by the time they get to Hospice, is not really much involved anymore, but the caretakers are very much involved, so you do both."
Peggy said Rowen and Phil would talk during their time together and said Rowen, like many caregivers, saw the "red book" — a wedding album capturing their daughter Amy's 2005 Hindu wedding in India. The "red book" stayed at Phil's side until he died. Peggy said it allowed him to show the real Phil behind the tumor.
Rowen said he talked with Phil, but, "sometimes not even talk. Just being there. He would be asleep a lot of the times and I'd bring my own book and just sit next to the bed and when he woke up, he would see that I was there."
"He knew he wasn't alone," Peggy added. "He never wanted to be alone."
Seek help
For people going through a similar situation, Peggy said simply, "Don't be a martyr."
Friends told her, "Peggy, take care of yourself, because if you don't take care of yourself, you can't take care of Phil."
The advice made sense but it was harder to put into practice, until she noticed the amount of weight she had lost.
"That was so hard to try to not be a martyr to him," Peggy said.
All the caregivers went out of their way to take care of the family, Peggy said. One of the CHANS nurses even planted impatiens alongside the driveway. The flowers started to bloom the day Phil died. She'd like to thank everyone who helped.
Peggy gave Rowen an angel as the interview ended, saying, "God blessed my journey with many angels ..."
"It's a very caring angel and sits in my bedroom so it can watch over me as I sleep," he said, clearly touched by the gift.