Shay Jacobson, RN, MA, NMG, LNCC, CNLCP
The National Institute on Aging estimates that there are seven million long-distance caregivers in the U.S.
These are the people who receive calls in the night, at work, during a son’s soccer game, and often have no idea what to do. Their parents, once the solvers of all family problems, have developed problems of their own, all heart-wrenchingly real and difficult to fix.
Someone has fallen. There is a new diagnosis. The caregiver has vanished. The neighbor called to say Mom is wandering. Something has to be done.
This was the situation in which Brian found himself, situated 1000 miles from his aging parents and a cancer-stricken brother, all of whom were rapidly unravelling.
Something had to be done, indeed.
One, Two, Three
Brian settled out east years ago and established both a career and a family of his own. He was young when he made the choice to move, and his parents and brother supported his decision. Lots of families wind up geographically scattered when children reach adulthood and, though it leads to plenty of airfare over the years, most people find a way to make it work. Brian’s family was no exception.
Over time, though, things changed. Brian’s parents, Mr. and Mrs. Carter, and his older brother, James, remained in their hometown and somehow arrived at the threshold of medical vulnerability all at the same time. All three of the hometown Carters had moved from their community homes to live at and receive care from an assisted living facility in their community. In the case of Brian’s parents, it was age-related frailty that prompted the move. His brother had cancer, and reached a point where he couldn’t manage his own care, much less his parents’. All three had been living at the facility for several months and it appeared that most of the big changes were done. Brian knew his parents and brother were well supervised, well fed and carefully tended.
What appeared to be a well-written chapter in the family’s journey turned out to be merely an introduction to a longer story. Brian’s father was diagnosed with prostate cancer and, after a hospital stay, was admitted to a skilled nursing facility. His brother, whose cancer was progressing rather rapidly and necessitating increasingly complicated care, was relocated to the same skilled nursing facility. Mrs. Carter was in relatively stable physical health but was now alone at the assisted living facility and unable to see the other family members. Her early-stage dementia precluded the possibility of driving on her own.
As the seemingly settled plan unspooled before his very eyes, Brian tried to manage it all via telephone and during hasty trips home on the weekends. By the time he called Lifecare Innovations at the recommendation of his parents’ trust officer, Brian was hanging on by a thread.
Eyes, Ears and Expertise
Brian made one more urgent trip home, but this time one of his primary goals was to meet with Lifecare Innovations to work out the ways we could be most helpful to his family and relieve him of the far-away-caregiver role.
The first order of business, we determined, was to formally assess each of these three people –although they were a single family unit, their safety and health required that individual needs be identified and managed to ensure that each received precisely the care they needed.
Brian’s brother, James, was seriously ill. He would likely never be able to return to the assisted living facility where his mother continued to reside. This understanding, as gently outlined by the Lifecare Manager, allowed Brian to feel comfortable letting go of his brother’s apartment at the assisted living facility. Eliminating this expense paved the way for Brian to fund a caregiver for his brother; the caregiver would provide some much-needed companionship and accompany James to and from cancer treatments at a local hospital. LCI was able to pre-screen prospective caregivers for James and bring potential candidates to the nursing facility to help Brian and James choose a good companion. A caregiver was eventually hired by the Carter family and this caregiver became an integral part of James’ care plan under the supervision and guidance of the Lifecare Manager. Our Lifecare Manager visited James at his nursing facility several times a week to meet with the nursing staff, review the medical chart and advocate for this very ill client. Near the end of his life, LCI recommended to the Carter family that hospice be engaged and this care further enhanced James’ quality of life in his last days.
All the while we were focused on James’ care in the skilled nursing environment, arrangements were simultaneously being made to move Mr. Carter out of that facility and back to the assisted living community. Mr. Carter’s diagnosis was also terminal, though his care needs were less complex than James’ had been. It was important to the family that Mr. Carter spend his last days in close proximity to his wife, and being in the apartment with her was medically feasible for him. LCI arranged for a caregiver and a hospice provider visited Mr. Carter frequently to ensure that his care needs were adequately met.
On one such visit, our Lifecare Manager saw that the caregiver was not doing a good job. During times of medical crisis, comfort and safety can often be found in the small details, and it was in this area that the caregiver faltered. She was immediately relieved of her duties and our Lifecare Manager sat with Mr. Carter for several hours while a new caregiver was identified and dispatched. It was well worth a small disruption to find for Mr. Carter a caregiver who would be attuned to his needs and provide thoughtful, effective care measures as his condition increasingly limited the scope of his life.
LCI was in frequent contact with Mr. Carter’s hospice provider and new caregiver; we provided daily updates to Brian who remained out east and was able to attend to his life with peace of mind that his family was receiving quality care. When Mr. Carter passed, just days after his son, James, LCI provided support to Brian and his family as the memorial services were organized.
To Boston with Brian
After the passing of Brian’s father and brother, the focus turned to his mother. She suffered from dementia and did not have a good understanding of all that had been happening around her. Brian asked that LCI continue to provide supervision and oversight to his mother’s care at the assisted living facility, especial as she adjusted to being along. It was Brian’s eventual choice to move his mother to the area in which he currently lives so she could be near her only remaining family. Having endured so much loss, Brian wanted to have his last surviving family member close by where he could see her often. LCI investigated facilities in Brian’s area and did many phone interview to pre-screen assisted living facilities and geriatric care managers near Brian’s home.
At Brian’s request, our Lifecare Manager made a trip east to personally tour the pre-screened facilities with him to offer insight and help with his choice. While there, she also sat in on interviews as Brian determined which of several care managers would assume responsibility for Mrs. Carter’s care needs in Massachusetts. A local facility and care manager were selected and all arrangements were set.
Our Lifecare Manager was pleased to accompany Mrs. Carter on the plane when she made her way east to her new home. It was helpful to have a familiar face along for the ride, and most especially as she settled into her new apartment. Brian, too, took comfort in knowing his mother had a known traveling companion and was someone he trusted completely.
Now that a year has passed, Brian reports that his mother is doing very well, enjoying her new care environment and engaging in more mental and physical activities than she had in the previous few years. Brian and his family visit with Mrs. Carter several times a week and no longer worry about her care needs. He has expressed his extreme gratitude to LCI on many occasions and has joked that LCI should establish a branch in Boston so we can continue to help with the big choices and work alongside him as he tends his mother.
What Brian may not realize is how much we, too, value the relationship and the experience of knowing this family. It’s not every day that we have three clients, all in the same family but with very divergent care needs, to oversee at the same time. Brian’s geographic distance and corresponding sense of helplessness was something we could bridge immediately. There was tangible relief for Brian from the onset of our involvement, and he never tired of telling us about it. It was a pleasure to give each of the Carters – including Brian – exactly what they needed to feel that even rapidly changing, difficult situations can be made to feel safe, manageable and well ordered.
©Lifecare Innovations, Inc.