In 2013, Erik Iverson and Gabriel Inton had the idea to create Holding Space Asheville, a shared housing solution to improve the quality of life and death for those with a terminal illness and their caregivers in Asheville, North Carolina. Many people say they’d prefer to die at home, but can’t get the care and assistance they need. Help in the home is one of the most significant benefits for seniors sharing housing, and can be an incredible help to people with serious health conditions. Holding Space is not a business or a medical center, it’s a shared housing community that allows for informal social support for the dying and their caregivers.
How It Started
Gabriel has been a hospice nurse for ten years in a long-term-care facility and VA hospital with fifteen beds. Many of those who were dying wished they could be at home but at home they couldn’t get the care they needed. Not medical care but hospice care, help with activities of daily living. Erik says, “In 2013 we saw the documentary “Gen Silent.” One aspect of that story is how queer people are pushed back into their closets at the end of life, with their partners being separated from them. It planted the seed with us. Further inspiration came from a Zen center that offered hospice care in a big beautiful Victorian house. We loved the idea of offering mindfulness and caregiving. Unfortunately, their staffing overhead forced exclusive and unsustainable pricing of their 5 beds, and then it folded. We developed the dream of creating a shared home for the dying where people could be taken care of by the residents of the home.
Holding Space is Born
“We bought a nine-bedroom house the day it came up for sale. Though it was sold as a single-family house it had been a group home for girls and was wheelchair accessible. Less than a month later we owned it. We moved in on May 4, 2018 with regular housemates to help pay the bills as we got ready to do renovations. To get the word out we started hosting potlucks. We invited neighbors, friends, and curious folks.
Opportunity Knocks
We were planning to take one to two years to do renovations before we really got started, but through our connections Eve got in touch with us. Her wife, Yvette, had a brain tumor. They were living about 40 minutes away and were without transportation. They’d sold their car to pay medical bills, so this meant they were now getting rides for the 40 minutes to and from the medical appointments for treatment. One day with two appointments – one in the morning and one in the later afternoon they asked if they could just stay in the house and take a nap, and that’s kind of how it started. They never left. We went to their house a few days later to retrieve their belongings.
A New Kind of Home for the Dying
Originally, Erik and Gabriel thought they would pursue getting Holding Space certified as a Family Care Home. However state licensing requires having trained medical staff on hand 24/7 and other medical requirements. But that’s not quite what they had in mind. They simply wanted to create a supportive, home-like space for the dying person and their live-in caregiver. When Yvette and Eve moved in they found that their Section 8 rental voucher was portable to the shared home with only a minimal amount of paperwork and corresponding inspection. Erik says, “It opened our eyes to how we could reduce our overhead by utilizing elements within the existing system coupled with the benefits of shared housing to offer exceptional care and affordability to anyone. Dying well needn’t be exclusive.” Part of their model is to also have healthy housemates who want to participate in the care of the dying and the caregiver.
Caregiving and Grieving
“We have a goal of alleviating caregiver isolation and burnout through our support of the caregiver. For instance, caregivers often feel guilt if they leave to do anything for themselves. They feel that they always need to be around and coordinate with everybody. Caregivers are often afraid that something may happen while they are gone. Other adults in the house make it possible for the caregiver to have some time off.
When Yvette died, the household washed, mourned, and buried her. Eve was able to stay in the room for a number of months among the support of the home mates while she was in the grieving process. Since the model is based on room rental rather than billable medical care, there is no urgency to turn over the room – nothing has changed financially. Eve moved out only when she felt ready after developing a new relationship.
The Future for Holding Space
The Covid-19 pandemic has put them in a kind of wait and see. There are renovations to resume in the house and a studio apartment. “We’re not looking to make money from this. Members of the household maintain independent jobs outside of the home. Since our income isn’t relying upon someone’s illness, it frees us up to consider the person’s individual needs and desires.”
Holding Space for Living and Dying can be found on Facebook and Instagram as @holdingspaceasheville. The video below is a Pecha Kucha presentation by Erik.
A Husband with Dementia Leads to Home Sharing(Opens in a new browser tab)
Read more about how shared housing can help you: Home Sharing Means Never Having to Scoop the Litter Box, CoAbode: Single Mothers House Sharing,
2/18/2021
Thank you, Erik, for this youtube presentation of your work providing the Holding Place, a co -housing model that welcomes those who are at the end of life. Your works heartens me to continue to find a path to bring change so that more of us who want to live and die at home can do that. I was taken back by your statistics that although 80 % of persons want to die at home, 60% die in acute care hospitals,
20% die in Nursing Homes. Only 20% die at home.
It is not just a matter of age. We are all TABs, Temporarily Able Bodied. Most of us will experience some disability. All of us will die. Why not make plans that include the options we desire.
I would like to see a movement to promote home sharing for seniors by exploring ways churches and other local organizations could help persons find house mates and provide continuing support. Home sharing in a caring community would not dump persons in a health crisis or in their last days. Some churches might even sponsor a rental apartment.
We need to make it easier to navigate our Healthcare, Insurance, Nursing Home Complex. (I know how hard it is to get help from these agencies without being shuttled off to a nursing home during my husband’s six years of decline with Parkinsons. ) These businesses profit from making dying complicated. It doesn’t have to be. In the past most people died at home. Today many do not have that web of family caring. Our society makes it difficult to age with dignity.
Home sharing is a key to making it easier to overcome obstacles to meeting health challenges and spending last days in the comfort and peace of home . Another person in the home can provide friendship and support , share chores like cooking, work together to make home accessible before a crisis like a fall occurs, and share cost of help for home care and daily living care. Shared expenses can be much less expensive than those for Assisted Living Communities or Nursing Homes.
Although I miss my husband I have the satisfaction of knowing he had a peaceful death at home surrounded by family with his dog by his side. His buddy caretaker and a hospice nurse made him comfortable. We prayed as his Spirit left his body.
We need to work together to make it easier for those who wish to die at home.
Kathleen
Thanks Kathleen! Yes, we are all temporarily able bodied. I think this is important to remember any time we are modifying our spaces with a renovation or furniture placement, appliance purchases, or the purchase of a new home. I encourage folks to consider the concept of Universal Design — the design of buildings, products or environments to make them accessible to all people, regardless of age, disability or other factors. I would almost include shared housing in that design list since the presence of others in the home can help address shortcomings in both the physical AND the social/mental realm.
There is room for creative improvement in so many areas of our modern life, some of which you’ve proposed here. We were just living our “normal” lives when we began brainstorming solutions to the problems we were seeing. Holding Space is our experiment to see what works and what doesn’t. It’s still just our “normal” life in a modified form. I would encourage anyone reading this who sees a problem with the status quo to give thought to what you can do in your normal life, or a way to modify your normal life, to address it. Change doesn’t have to be monumental. It can be incremental. And it starts with each of us.
Maybe for you it starts with approaching your church (or any group where folks congregate around shared ideals) to offer a homesharing matching board. The timing could not be better for folks who are seeking to diffuse housing expenses AND restore connection with others.
Looking forward to continuing to receive the newsletter. Thank you, Annamarie, for your inspired good work.