ParentCare » Vol. 3

Final Passage

Making the last days meaningful

By Christina P. O’Neill

Who among us who has lost a loved one can read an obituary that begins “…died peacefully … surrounded by family” and not wish it had been possible for our own family member?

Two people share their stories about making a parent’s last days as meaningful as possible. Their efforts demonstrate that behind every good death is often a lot of effort to make it so.

“Tell my sisters that I love them”

Her father’s dying wish was that Chriss Kowal would take care of his Zosia ~ his Sophie ~ after he was gone. She promised to do so, and kept that promise, but it didn’t come without some difficult decisions.

Chriss, an only child, is a married mother of two. Her mother lived at her family’s Northboro home from January of 1997 until January of 2001. As the years went on, the living situation became difficult. Family time was being compromised, as was the operation of a home-based business. Talking to Chriss during those years, one could sense the stress, though she soldiered on. Her sons were affected, too ~ they sought school and other activities outside the house that she feels they might not have if not for the living situation.

Working in Chriss’ favor were several things. She was the designated health care proxy for her mother and also the durable power of attorney, which enabled her to make the decisions ~ including prearranging Sophie’s funeral ~ as Sophie’s health and mental acuity declined. Chriss also had the continuity and support of the family doctor, Glen Bombadier, who had taken care of both her father and her mother for more than 25 years. And while Chriss is an only child, other family members live in or near Holyoke, Sophie’s home town, which eased Sophie’s isolation. In fact, one of Sophie’s sisters was a resident at the nursing home to which Sophie was admitted, so there were other family members besides Chriss in Sophie’s final days. In addition, her employer at the time, Goulet, Salvidio & Associates PC, gave her the combined personal time off and bereavement leave she needed to deal with Sophie’s end-of-life process.

When Sophie left Chriss’ home in 2001, she moved to the Pulaski Heights Apartment complex in Holyoke, right across the street from her church, so she could attend Mass easily. Chriss spent part of most weekends shuttling from her home in Northboro to Holyoke to visit her mother. She also accompanied her mother on doctor visits, and once Sophie went to Mount Saint Vincent nursing home in Holyoke, Dr. Bombadier worked with the attending physician there. “You do want your parents to live forever but that’s not going to happen,” Chriss says. “It’s a gift to find a physician who can respect a patient’s wishes to be treated with dignity.”

Despite profound deafness after years of working in a Holyoke spinning mill, and being declared legally blind in 1996, Sophie could still live fairly independently. Her arthritis and hypertension were controlled by medication and she was able to cook by touch and taste. Chriss would help with the laundry, do her shopping and banking for her, and take her and other family members and friends to lunch. But then, beginning early spring of 2005, Sophie had a series of transient ischemic attacks, or TIAs, sometimes called “mini-strokes.” The effect was devastating, Chriss says. “She would have moments of clearness and then she would just forget.” Dementia caused her mother to fidget at things and to become easily overwhelmed.

Chriss recalls taking her mother and other family members on a lunch date in June of 2005 when “…all of a sudden my mom said, ‘Chrissie – who are those people in the car? Where are we and how did I get here?’“

Sophie’s sister-in-law, Chriss’ Aunt Lorraine, had the wisest words, Chriss recalls. “Chrissie, please understand that your mom will never be the same.” She took those words to heart, and her mother “…became Sophie to me ~ a lovely lady who wanted her final days ~ actually almost 2 years ~to be lived quietly.”

Sophie was admitted to Mount Saint Vincent Nursing Home in Holyoke, where she had grown up. Chriss is grateful for Sr. Ramona, the chaplain, who understood Sophie’s fear of a new place. Sr. Ramona would visit Sophie and say the rosary with her to help her settle in. Chriss commends the Alzheimer’s Unit staff on the third floor. On Sophie’s “good” days, they made sure she could attend Mass. “My mother found comfort in her faith and being in a Catholic environment gave her an inner peace,” Chriss says.

Visiting Sophie, their babci (grandmother), became increasingly difficult for Chriss’ two sons. On a Christmas visit in 2005, “She would recognize them for a minute or two and then forget who they were.” After that, the boys demurred from visiting. But Chriss kept Sophie up to date on the boys’ activities, despite babci’s failing hearing. “I would have to repeat myself quite a few times to get across even the simplest concept. Patience became a true virtue,” she says.

One of Sophie’s three surviving sisters, Genevieve, was also a resident at Mount Saint Vincent. Chriss spent her Sundays helping Sophie finish her lunch and then Chriss and Sophie visited with Auntie Gene and Chriss’ cousin Elaine at the nursing home. The younger women threw a joint birthday party for Sophie and Genevieve in May of 2006. “All of the nieces and nephews and the sisters were there ~ it was a really special gift to have us all there for a good reason,” Chriss says, noting that it was one of the last times Sophie had a “good” day.

When Sophie realized she was having memory problems, she made a request of Chriss. “She asked me to ‘Tell my sisters that I love them.’ She found the strength to say the words that mean so much to a family.”

In the end, Sophie didn’t want any visitors, though Chriss spent half a day with her toward the end. She died on February 6, 2007. “When her time came to leave this earth, I had the comfort and support of the 3rd floor staff and Sr. Ramona. My mom was given the Last Rites, as was her wish,” she says.

If I Could Have Said Good Bye

Sharon Hirtle is a palliative care RN at UMass Memorial Home Health Care. Her father, Kenneth Emil Korpi, died at Sharon’s home in June 2007. He’d had 12 years of cardiac problems, starting with a heart attack. He had utilized the Home Health service as needed for a few years before transitioning to UMass Hospice, receiving hospice care for the last 10 months of his life.

Factors that worked in Sharon’s favor ~ in addition to her professional knowledge ~ are first and foremost the closeness and emotional involvement of her multigenerational family, the fact that her father’s illness did not affect his mind until the very end, early receptivity to and adoption of hospice care, and lastly, his wanting family around him in his final days instead of withdrawing.

Her husband’s grandmother had passed away October 31 2001. She had not wanted to talk about the end of her life with her family. Afterward, Sharon’s daughter Katelyn, then 10 years old, wrote a poem entitiled “If I could have said Goodbye.” In it, she expressed her love for her great-grandmother, who was also her piano teacher and friend, and said their shared memories would last forever.

Sharon’s youngest daughter had never seen Kenneth healthy, but her children apparently looked right through the illness and sought out the person. He sought them out in return. Hospitalized after his first heart attack, he told Sharon he wanted to see her children ~ the youngest then 6 months old ~ before he underwent surgery. It was Christmas day, and an ICU nurse let them all in. Sharon taught the children to pray for him ~ and as the years went on, many friends, coworkers, clergy, and the staff of UMass Memorial Hospice would join in as well. “Little did we know we would have 12 years of angels,” Sharon says.

As Kenneth’s health worsened, Sharon and her daughters worked to make his remaining days as good as possible. They drew on the experiences in the Mitch Albom best-seller Tuesdays with Morrie. Her parents had always been actively involved with her children. Her father understood the progressive nature of his illness and talked openly of what the future might bring. In January 2007, after a family-wide decision, Sharon’s parents moved from their split-level ranch to Hirtle’s home. There, Kenneth had access to a ground-level bathroom and the kitchen and dining room, with a clear view of the back door where he could witness the comings and goings of the family, neighbors, and friends. “It was a lot of work on everyone’s part but no one had to do it alone,” Sharon says.

Her father also made the decision to request a Do Not Resuscitate order after a friend of his wife had died in the hospital. “I don’t ever want to have your mother make that decision,” he told Sharon. He was also fully informed about the prognosis if he even survived a resuscitation ~ the chances he would have to be kept on a ventilator were high.

Sharon told everyone she’d answer their questions as best she could, but if she didn’t know the answer, she’d tell them that, too ~ such as how long the death process would be and what it might be like. “We talked about the unknown from the beginning,” she says. “I didn’t want to try to anticipate what was coming and scare them…we just took it and explained it as it came.” This made it easier for the family to help her father through the mental confusion of his last few days. Fortunately, the doses of morphine he took were sufficient to ease his shortness of breath but low enough to allow him to share in family activities such as dinner, helping his granddaughters with their homework, and sharing stories from the daily newspaper.

Picking the cemetery plot and the marker was a group effort, by choice. Sharon and her mother started making the funeral arrangements shortly after her father was admitted to hospice. Kenneth hadn’t been interested in selecting a marker until he heard that his then 15 year old granddaughter wanted to help pick it out. The children, who sing in All Saints Choir in Worcester, decided to sing at his funeral and practiced the song on the piano beside his hospital bed.

The pastoral counselor who visited Sharon’s father would blend prayer and the Red Sox, and achieved an intuitive understanding with Kenneth. “My dad wouldn’t have to say specific things,” Sharon says. Five days before her father died, he had a near-death experience, falling into what appeared to be a deep sleep, from which he awoke suddenly and greeted the visiting priest by name. He immediately asked about the outcome of a Red Sox game. Speaking from experience, Sharon told her father, “If you’re alive now, you’ll be alive in the morning and you can read the score in the paper.”

“It was wonderful to have the length of time of hospice care,” she says. “He didn’t die with hospice, he lived with hospice.”

Lessons learned

Take-away lessons: not everyone who is dying wants their family members present at the end. Not every family member is able to cope emotionally with the declining health of a loved one. Everyone has their own experience with love, care and loss, and those experiences pull one away from the everydayness of life on a timetable largely out of one’s control.

Some words of caution and, I hope, reassurance: if your family was not close-knit before a crisis, that dynamic is not likely to change during or afterward. A home setting is not always the best for a person in declining health no matter how close the family ties are. And not everyone is cut out to be a caregiver. Sometimes ~ often ~ the best way to show love for a dying person is to reach out for help from those who can help you.

For those readers anticipating going through an end of life process with a loved one or family member, there’s help out there for caregivers and their supporters. Here are some web sites to get you started. The National Hospice Federation website is www.nhpco.org, and www.caringinfo.org is a consumer-oriented website worth visiting as well. www.betterendings.org is a Worcester-based organization and all these can give the guidance to make someone’s final days meaningful.

Keys to providing the best end-of-life experience are:

Family involvement and openness to suggestion

Taking each day as it comes

Acceptance: the ability of both caregivers and the care receiver to accept what is happening – in whatever way is effective for them.

Community connections to avoid isolation

Support of ability to practice faith (comforting routines, spiritual support)

For home care, patient-friendly living accommodations (first floor, accessible but private enough for patient to rest)

Utilizing hospice early in the process ~ months, not weeks, before final days (this involves receptivity on part of the ill person)

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