Guest post by Claire Brannigan, whose husband Joe died January 17, 2015.
It all began when Joe started struggling with the aerobic portion of his regular gym workout. At the advice of the instructor, Joe saw his doctor that day.
Within days, we got the diagnosis: Acute Myeloblastic Leukemia (AML) — incurable and treatable only with palliative chemotherapy treatment. Joe asked the difficult question anyone in his situation would want to know: “How long do I have?” Her answer was six months to a year with treatment.
Telling our son Luke and other family and close friends this devastating news over the next few days was enormously difficult. Although pale, Joe looked and seemed quite healthy. This fed our inevitable denial. Just a few weeks before, Joe had been active, involved, and seemingly very healthy. He retired at age 77 from his full-time job as Executive Director of Shalom House and at age 81, from the Maine Senate. He loved being retired and had so much to look forward to.
We had a brief window of time before starting treatment, so we spent a memorable vacation at Niagara on the Lake in Ontario with friends. For the next 15 months, Joe received weekly palliative chemotherapy treatments. Since there were no effects or adverse symptoms from the disease or treatment, we lived fairly normal lives.
I became fond of saying that with leukemia there is no physical pain, no nausea, and no weight loss associated with most cancers. However, there was no getting away from it or ignoring what was looming and foreseeable as we got closer to the end.
Enter Hospice of Southern Maine
Almost a year after the diagnosis, Joe collapsed. He attempted to get out of a chair and could not do it. We dialed 911 and Joe was transported to the emergency room. When it was clear these recurring debilitating infections would keep coming back, without hesitation he decided not to be admitted and chose to go home with hospice care.
On September 29, he arrived home by ambulance. The hospice admitting nurse arrived a few hours before him to complete the admitting process prior to his arrival and talk to me about what would happen next.
We were fortunate to have two wonderful hospice nurses, one our primary care nurse and a substitute when needed. Both amazed us with their expert knowledge, sensitivity, compassion, professionalism, problem solving and more. The nurse visits were twice a week. They included basic assessments, but more importantly listening, answering questions, addressing concerns that had come up, and telling us what to expect. Their experience in working with clients with this diagnosis was invaluable. The ability of both nurses to problem solve was impressive and, of course, very helpful. They knew exactly what to do or recommend with whatever happened. For example, advising us to continue medications that were absolutely necessary and eliminating others. Joe thought that choosing hospice meant no more medications, but we both learned that’s not the case. Some medications, like those to prevent stroke or soothe a rash, are beneficial and they even helped us get the prescriptions.
We also had a terrific hospice aide. She was thorough, kind, efficient, a good match for Joe. She liked his sense of humor and once said she learned a lot when she came to our home. I would hear them talk and laugh and those experiences were very good for him. She never hesitated to do the “extras” and always made sure his needs were met before she left. She also recommended that we request a lounge chair that hospice provides which we did obtain. Joe just loved reclining and watching news and favorite sports including the winter Olympics and the men’s World Cup, which he feared he would miss.
We also received a visit from our social worker, who called on several occasions at times that worked for us. She was helpful and was able to answer all our questions including what to do at the end.
In the last couple of months, we had a volunteer who visited weekly. He also connected with Joe easily and was able to relieve me to do errands.
Gosnell Memorial Hospice House
Joe really wanted to go to Gosnell but knew it was for patients whose symptoms could not be managed at home. He wanted to go not only because he knew it was a beautiful place with great care, but also because he helped fundraise for it. When Joe and I learned that Gosnell provided respite care for home hospice patients, we were absolutely thrilled. Joe finally got his wish to spend a week at Gosnell for respite care.
On the first morning at Gosnell, the chef visited and asked him what he wanted for breakfast. He offered just about anything anyone could want. When I called Joe later, he told me he had the “best breakfast” of French toast and bacon, which he thoroughly enjoyed! Joe ate quite normally during his illness. Leukemia did not affect his appetite until the last few weeks.
While at Gosnell, Joe enjoyed visits from friends and family. The non-medical model was so refreshing to experience. The staff and volunteers were available at the touch of a button but otherwise innocuous. The cookies and libations were available to clients and family alike. Joe particularly enjoyed the frappes that were made to order.
On the day of the Super Bowl, I asked if it would be possible to watch the game in the conference room since the TV screen was much bigger than in Joe’s room. Our son Luke joined us arranging the comfortable chair for Joe and using his strength to transfer him from the wheelchair expertly. The aide came a few times and brought him a frappe. We quite enjoyed the game, especially the outcome!
At Gosnell, like at home, the nurses were informative, helpful and available at all times. The admission nurse completed the admission process with me before Joe arrived which made it easier for him. Again, we were impressed with the care and expertise provided by all the nurses.
Joe’s Advocacy for Hospice
Joe’s interest in hospice care started when he learned several years ago that Maine ranked 49 out of 50 for utilizing hospice care. Joe decided to work to change that.
It became his passion to do something about this and he did everything he could to effect change in hospice care in Maine. Not only working to increase use of hospice care in Maine but also to build an inpatient hospice facility.
Joe died at home on January 17, 2015, one year and five months following his diagnosis. When he died, we were again fortunate to have a nurse who exceeded our expectations. She was a stranger to us, yet her compassion and demeanor could not have been better. She stayed a long time and was very respectful and sensitive to me, my son, and our family and friends. She was also very considerate in the post-mortem care she provided to Joe.
Along with my son Luke, I want to express our sincere thanks and appreciation to all who are involved with Hospice of Southern Maine. The expertise of the staff, their care and compassion made a real impact on us. In particular, Hospice of Southern Maine gave Joe the ability to die at home the way he wanted to die.
This guest post was written by Joe’s wife, Claire Brannigan. Claire has led a professional career in nursing, nursing education and administration. She holds a MS in Nursing from Boston University. In 2001 and 2008, she taught for an RN to BSN Nursing program in Tel Aviv, Israel. She has shared her expertise on numerous boards and committees in nursing education and healthcare. She and Joe were married for 42 years and have a son, Luke Brannigan.
Hospice Care in Maine
There are approximately 20 Medicare-certified agencies in Maine that provide hospice care in private homes, nursing and assisted living facilities, hospitals, and other locations. Hospice of Southern Maine operates the only inpatient hospice facility (Gosnell House) in Southern Maine. Volunteer hospice services are also available throughout the state. For more information about hospice services in your community, contact the Maine Hospice Council & Center for End-of-Life Care.
Hospice of Southern Maine also cared for my father, Bob Swett, in his final months. He died at Gosnell House in December 2009. You can read about our family’s experience in the blog post: Hospice enhanced my father’s life in his final days and nurtured our family.