Can aching hearts be touched with love and care without ever meeting in person?
Can the mission of living well with dying and grief still be carried out through telephone wires, the postal service, cell towers, and delivery volunteers?
The truth is that no one knew–we could only hope.
Over the last year, we’ve received answers to questions we had never thought to ask. We found ourselves radically shifting our model of care without time for a breather. The answers we gave our patients and families during this whirlwind of change were hopeful, steadfast, and comforting. They were answers from a team dedicated to making the purpose and mission of a Volunteer Hospice work, no matter what.
Hospice of Anchorage moved to multiple weekly calls to patients instead of monthly visits by clinical staff, we mailed or delivered joyful items under our new Spark of Joy program every week (for over 52 weeks now!), and staff communicated with each other over Google Meet–just for a few examples of what changed for us during 2020. We had to adapt suddenly, and frankly, we didn’t know how it was going to work! But when I hear stories like the Avey’s, I’m so happy to know we continued to make a real difference.
Can aching hearts be touched with love and care without ever meeting in person? YES!
Can the mission of living well with dying and grief still be carried out through telephone wires, the postal service, cell towers, and delivery volunteers? YES!
Even in the strangest of times, hope can spring eternal. I believe leading with our hearts was a big reason we continued to genuinely connect with and support our patients and their families while keeping them safe from COVID-19.
If you’re wondering what you can do to help us continue this heartfelt work, know that any amount you give is humbly appreciated. Hospice of Anchorage is funded solely through grants and donations. We rely on funding from people like you to continue our mission to help individuals and families prepare for, and live well with, serious life-limiting illness, dying, and grief. Families never receive a bill from Hospice of Anchorage because we believe all a family should worry about is making sure their loved one is well taken care of at the end of their life.
The donation you make today will be doubled. Legacy Funeral Homes is matching 100% of all gifts up to a total of $5,000.
Our most vulnerable seniors have been on everyone’s minds this last year. When you donate to Hospice of Anchorage, you are donating to an organization that brings real help, support and care to people in our community who have a life-limiting illness and their families–people like the Aveys.
Hospice of Anchorage uplifted Jim Avey and our family through his end-of-life days.
Dear Friends of Hospice,
Jim believed in true family values and loved his family deeply. Raised in Anchorage from the early 1950’s, he saw the value of being walking distance from where you lived, worked, and used community services. He thought of neighbors as extended family and wanted to visit with anyone walking by his home. He demonstrated this in his latter years, when May through September he opened his free-coffee stand, Wishing Well Coffee, “Wishing you well every day.”
Jim loved to laugh and to see others happy, was humble about who he was, and had a loving way of telling his life’s stories to anyone who would listen. He liked working with his hands and used to joke that he spent most of 30 years on his knees as a carpet layer, which should qualify him as a praying man before the Lord.
Whenever Jim was presented a challenge, he weighed how much his contribution would make a difference that mattered---to God, to his nation, and community. He preferred peace-making over soldiering and was a Vietnam-era, Army draft respondent, who left as soon as his contracted time was over.
He had rough-edges and was so sincerely real that he shared his opinions openly, often without word-mincing diplomacy, and expected honest replies as frank as his own. Although that could be hard to accept, everyone who knew Jim felt endeared to him because of how genuinely he cared for everyone in his life. He was a deeply loving man of God, his Heavenly Father, and his faith was not about religious ritual as much as being pure in heart.
Jim loved taking his family into the great Alaskan outdoors--camping as often as possible. Nature was his sanctuary. During his end-of-life days, from his bedside window, he would watch the local birds at their bird feeder. He loved the music of their songs and the colors of their plumage.
Jim’s first serious health decline was diagnosed in April 2003 as renal failure, when both kidneys stopped functioning, and by June 2003, Jim was on dialysis. In November 2009 he received a kidney from an organ donor and had transplant surgery at Swedish Hospital in Seattle, Washington.
The health decline that became his end-of-life days began in late August 2019. During an MRI test he was diagnosed as experiencing a mini-storm of strokes impacting his brain functioning--and we could believe it. We had seen Jim was noticeably different with his gait, his word-finding, and other functionality. He was frustrated and befuddled by the changes he was experiencing. As for myself and our family, we wondered what these symptoms meant for Jim’s life and how long he would be with us. Within a week after his first ER trip when he was discharged without hospitalization, Jim lost most functioning of his right side, and was admitted to the hospital to explore possible causes and treatments.
Except for venting negativity to feel better, Jim knew that complaining did not change things, and usually tried to be grateful. “My right hand isn’t working, then I will try to eat with my left hand (non-dominant) side.” This worked until we were re-directed by his therapists and nursing staff to try his right side first—to help to re-pattern his brain.
Jim and I started living close to our daughter and son-in-law before their two boys were born; we were in a triplex we owned downtown. When the basement apartment flooded and we found ourselves all living together, it worked out so well for us that we continued the arrangement. Some families don’t do well with three-generations together. Jim and I loved being with our grandchildren as they entered the world and as they started growing. It was a source of deep joy, especially for Jim.
Similar to the changes in family arrangements and adjustments as children come along, this new problem with Jim’s health decline meant we would be adjusting again. As a family, we became more aware of Jim’s new needs.
By February 2020, we moved into a new home with flat floors and no stairs in the primary house, which was helpful to prevent falls.
Before COVID was declared a pandemic and hunkering down started, Jim was doing well and he went through in-home Speech, Occupational and Physical Therapies, and then outpatient therapy visits two or three times each week. Then, around the same time he started to plateau in his body’s improvement, COVID presented us with additional challenges.
Suddenly, we couldn’t go to outpatient treatments because the facilities were shut down. It took more than a month to begin telehealth appointments with the therapists. In addition, our son and his wife and our daughter and her husband and their two families (with four children under eight) found themselves needing to reorganize to accommodate working at home while homeschooling the three school-age children and caring for the still potty-training two-year old.
We were acutely aware that our “pod” could avoid COVID, but with our daughter’s role as a critical care RN at Providence (and in training for the Intensive Care Unit), we would need to be hyper-vigilant to prevent Jim’s exposure to COVID. We regrouped and started regular Saturday meetings for coordinating a home school for five children (a neighborhood friend joined our pod) and a one-bed assisted living facility.
Jim started declining again, and by Father’s Day 2020, we noticed his left-side was not doing well, though his right side had improved. We believed he had more strokes, but taking him in to get more tests put him at too much risk for COVID exposure. New in-home speech, occupational and physical therapist referrals came in. Also, home health personal care assistants were needed so that I could receive some relief as Jim’s primary caregiver, as I had been diagnosed with early-stage Parkinson’s disease, presenting with left-hand tremors in February 2020.
Jim had signed a Comfort One agreement before we left the hospital in October 2019. He wanted to be at home if his situation worsened and he might die; he preferred to be surrounded by family and not to die in the hospital. Comfort One allowed him that. We also set up our Advanced Directives.
We did not know much about the importance or value of Hospice of Anchorage or the difference between Medicare Hospice services and Hospice of Anchorage services. We might not have ever known, except that Jim started taking another turn for the worse, which left him unable to move with his walker to get to the toilet by himself.
Jim’s downturns and emergent problems always seemed to happen on a Friday --which meant non-EMS Home Health assistance was not available again until the next week. When I called his neurologist’s office in a panic one Friday afternoon, Jim’s doctor referred me to Hospice.
That’s when I called Hospice of Anchorage. We had a misconception that Hospice would not be good for Jim. Jim had fought long and hard to have a functioning renal system, and we knew that he wanted to keep his medication regimen until he could not swallow or take the kidney anti-rejection medications in liquid form. Hospice of Anchorage, being a Volunteer Hospice, meant that we could receive their services without stopping Jim’s medications.
Hospice of Anchorage staff support meant we always had someone helping to intervene with things that we could not predict, or were uncomfortable to bring up. Jim and I did not know how to navigate this phase of our lives. Hospice of Anchorage staff, especially our nurse Sharon, helped me brainstorm what could address the problems that came up. Of course it did not relieve the stress completely, but it made it possible to navigate a solution with less stress--and sometimes a few laughs, too. It is amazing how wonderful it is to have a knowledgeable, empathetic listening ear.
When it was clear that myself and my son-in-law (my backup) could not assist Jim with transfers without injuring ourselves, Hospice of Anchorage’s social worker Bethany called and offered to fill out forms to apply for a Stand-Assist-Lift. This piece of equipment represented support from four organizations-- State of Alaska funding through the Alaska Mental Health Trust grants for dementia patient beneficiaries, which was distributed through the Alzheimer Resource Center, and was referred through Hospice of Anchorage.
At one point it became apparent that I was unable to carry out all the day-time transfers and 24/7 caregiving coordination. The four adult family members supporting me on nights and weekends were about to max out, too. We were referred to Providence Palliative Care. Then, Hospice of Anchorage jumped in to coordinate with VA Palliative Care, as well, to have a benefits determination screening. Although we would be paying for some of the daily home-health and respite care support we needed, the good news was that Jim did qualify for VA Home-Based Support Services, allowing us to continue maintaining Jim’s care in our home. I began to breathe more easily.
Besides the consistent check-in calls by one or two Hospice staff at the beginning, middle and end of the week, Hospice of Anchorage demonstrated caring to our family in other amazing ways. Jim received weekly gifts with cards and notes through the mail. Most of them brought a big smile to his face.
Maybe you’ve heard the expression “food is love.” We received the gift of Alaska Dinner Factory meals around the Thanksgiving and Christmas holiday season. Fresh produce from Valley farms (and recipes to go with them) were delivered to our door, and warm fresh breads arrived one day. Another time, a handmade quilt. A holiday gift basket with a warm comforter, handmade greeting cards, amazing treats and a budding amaryllis bulb came. That amaryllis bloomed once toward the end of Jim’s journey of life around Christmas, and then once again after he passed away on January 6, 2021. The second bloom reminded me of the continuous cycle of life and the warmly nurturing care we experienced from Hospice of Anchorage that brought so much comfort in a time when our hearts were hurting.
My family and I probably could not have been as emotionally available for Jim without the support of Hospice of Anchorage. Not only could we survive better, but also, we could begin to thrive during Jim’s in-home, end-of-life journey. The one-on-one time I received as Jim’s primary family caregiver became support to all the rest of the family. The journey was especially difficult on myself as I became painfully aware that Jim’s condition was not something that could be “fixed,” and I was forced to accept that his days were numbered. This realization strikes a blow to the heart.
This new reality could have been emotionally draining, but having an outside resource bringing up weekly suggestions and helpful input—like “incontinence wraps,” to help prevent urine contact to Jim’s skin and to assist with bed-sore prevention and wound care, greatly helped. This kind of emotional support to me became practical support for Jim to experience--as improved caregiving.
After Jim’s diagnosis and the storms of mini-strokes that would sometimes explode through his brain, he lived another full year and moved into the second year. All of the support we received made this possible.
I remember particularly deep conversations with Sharon and Bethany about how I could support Jim and the other eight people in our immediate family caregiving team through Jim’s end-of-life stages. Shortly after, a large box of more than 10 helpful books from the Resource Center arrived. These were especially useful to help the youngsters understand that Grandpa might not be with us soon. All of us started looking at how to digest our feelings and to share about Jim’s life with others. The publications were enriching in a unique way with colorful illustrations, creative stories, and well-crafted imaginative presentations One of these books was The Invisible String story, which came with a workbook as well. That box of well-chosen books may have been my favorite gift we received.
Each unique gift and resource that came to us from Hospice of Anchorage gave us pause to reflect on the profound value of knowing there is a community of caring beyond our own family. These folks were strangers to us before the life-altering course we were on with our beloved Jim, but now they were standing by to assist in any way they could.
Our family had the type of experience all dying persons and their families would want—sacred last days of loving, caring, and sharing in an environment of our God-given school of love, our family. Undoubtedly, we are like most families that we love each other very much. We never imagined that sharing time with each other as an on-call, 24/7 care team for Jim would strengthen a bond of heart among us that would allow us to experience a new level of unconditional love. In our faith system we believe that God as our Heavenly Parent has suffered and longed for our families to reflect a filial love from children to their parents and an irrefutable true love from parents back to their children. We believe that when we have this kind of exchange, there are blessed, grace-filled moments of joy and happiness. These precious moments were there, despite everything else going on.
Jim’s Anchorage family--wife, adult children, and spouses and grandchildren were all attending to Jim through each phase of the changes in his health and his body as it began to shut down. Working with the beautiful caregiving health care providers and personal assistant angels that came to help us, we knew that every day and minute we had with each other, and Jim with us, was a way to celebrate the blessing of our family life.
As bittersweet as it was, we did celebrate as we shared the stories of the past, recounting the silly and the difficult times while listening to his favorite playlists. Even when Jim could not speak, through the sharing, there was a peace, a knowledge that this precious family experience was indeed Jim’s idea of the Kingdom of Heaven on Earth, that he was living out his lifetime goal of an ideal family and contributing to world peace. We will be forever grateful to every single person who touched our lives and has assisted us along the way.
On June 30th, 11am at Angelus Cemetery Park, Jim’s body will be interred; 5:30pm at Abbott Community Park off Elmore Road there will be a Celebration of Life (with some food and drinks we provide and those that participants may choose to bring, potluck style). For those who have Jim Avey stories they want to share with everyone, we hope to have live-mic time.