Community Co-Care Agreements

This is a compilation of posts on the coho-l email discussion list serve in late January 2017, in response to this inquiry:
Does your community have formal or informal co-care agreements about how
neighbors will support one another in their aging journey? Have you had
discussions and if so, what questions guided the conversation to help get
to practical agreements?

Thanks,
Dyan Wiley
Pioneer Valley Cohousing

Also helpful, this June 2015 blog from Sharon Villines, Guidelines for Neighborly Support vs Health Care in Cohousing

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We are beginning this conversation in our community this weekend. We have
discovered that it is important in order to engage all of our community to
frame it as a conversation about caring rather than aging as there are many
opportunities for caring that are not age related such as births,
illness/surgery/injury, birth/adoption, potential owners who come with
caring needs, expanding one's family with individuals who need caring,
etc. Our first step is to explore these two questions: if, when and how do
you expect care from your community (different from friends and family) and
if, when and how are you willing to help your community care for a member
of the community. If a group wants to focus on caring during aging then
that may be the direction we pursue.

There are some great materials available from the coho website from last
year's session on aging in cohousing. We are eager to learn from the
journeys of other communities.

Mary Vallier-Kaplan
Nubanusit Neighborhood & Farm
Peterborough NH

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We had a half-day forum on this topic about two months ago with very good
attendance. We tried to broaden it to include all kinds of co-care
possibilities, not just the needs of older members, though that was the
original impetus - it arose from an Aging In Place group that's been
meeting on and off for a few years.

We basically did two things at this forum:
-Came up with a comprehensive list of possible helping activities - some
were written up in advance by the event planners plus whatever else
attendees could think of. These were posted around the room on large sheets
of paper.
-Then everyone walked around the room using red and green dots to give
feedback on (1) their willingness to provide those activities, and (2)
their willingness to receive each kind of assistance. The feedback included
how often and for how long people were willing to give or wanted to receive
each kind of help to/from their neighbors.

My takeaway was that, at least in the abstract, we're willing to provide
and to accept various kinds of concrete shortish-term help and some
medium-term help, but most people didn't want to give or accept very
personal or quasi-medical care or to make open-ended commitments except of
a trivial kind.

So, people might volunteer to bring your mail to you and to walk your dog
every day as long as you live here, to fix meals for a couple of weeks, to
take you to the doctor while you recover from surgery or illness, but most
were not willing to help you get dressed, buy your groceries, fix meals,
take care of your house and yard, drive you to doctor's appointments etc.,
*for an indefinite period* as you decline - and most didn't expect that
from their neighbors either.

It was evident from this exercise, and we agreed, that we're not a
cradle-to-grave community. At some point, residents with serious physical
or cognitive issues should expect to sell their house and move to senior
living/ assisted living, In fact in the last couple of years, four singles
or couples have done just that, and two more residents are about to leave
as well because of their increasing age-related physical limitations.

Muriel at Shadowlake Village

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It isn’t the 80 year olds who are running around breaking ankles. Or having babies. Or going to an office retreat and needing someone to walk dogs, feed cats, or water plants.

A repeated story: One of our members who uses a wheelchair had an automatic door installed at the entrance to our CH. That door is so useful to everyone. Strollers, walking a dog and a toddler at the same time, ankles in casts, on crutches, carrying bags of groceries, pushing the grocery cart. A child with a broken leg. The community pays for repairs and if it needed replacement, I’m sure we would also pay for a replacement.

Many of these things are for everyone.

One difference in aging is that there comes a place where an infirmity is more permanent. When I had back surgery, it was very helpful to have someone stop in everyday to see if I needed anything picked from the floor since I couldn’t or wasn’t supposed to bend. I got good with my toes and a reacher but there were limits. If that became a permanent condition then an ongoing solution would be needed. One would be to have those who need help hire the same person to come in so someone knowledgable with the community can provide service to several people. That set of people might change but the person might be employed a good percentage of the time by individuals.

Sharon
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Sharon Villines
Takoma Village Cohousing, Washington DC
http://www.takomavillage.org

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Here's another thing that gets left out of these conversations.

While we have community-wide agreements and expectations, we also have
individual relationships with each other. Some of my neighbors are like
family to me; some I wouldn't necessarily choose as friends but we have
cordial working relationships; I have ongoing low-level conflict with one.
Most of us are going to be willing to invest far more time and effort - and
of a more intimate nature - helping those with whom we have deeper
relationships. (I was willing to give B an occasional ride to the doctor; I
spent time in the hospital spoonfeeding A.) We also differ in our
willingness to receive certain kinds of help (W did NOT want any community
member doing ANY personal care at all). How much people are willing & able
to help others also depends upon their own burdens at the time - I have less
energy to help others when my wife is recovering from surgery.

Any community-wide agreements made about all this are necessarily going to
be abstract and somewhat vague. It's still useful to have the conversation,
but be wary of making assumptions that because we're in community we're
going to be able to take care of everyone's every need, or that people will
be cared for equally.

Eris Weaver, FrogSong Cohousing (Cotati, CA)
Graphic Facilitator & Group Process Consultant
eris [at] erisweaver [dot] info • 707-338-8589 • http://www.erisweaver.info

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This topic is bringing up an unresolved issue for me about the goal of
helping cohousers age in place. Does it make sense to plan on staying
longer in your home, with whatever kind of assistance, past the point when
you can "do" cohousing except in a social sense, receiving visits and
perhaps getting some kinds of assistance from your neighbors that you can't
reciprocate? How many such residents can a community sustain?

I'm thinking about the very nice local senior living/ assisted living
community to which several of our older members have moved in recent years.

As pleasant as it may be to live there without all the responsibilities for
maintaining one's house and the common spaces and the governance that
cohousing entails, I think those of us who are getting older (yes, everyone
is, but some of us have been at it longer) want to postpone that move and
stay in our wonderful cohousing community as long as possible because of
the human capital we have here. We want to remain in the presence of
energetic younger folks and children and not live surrounded only by the
old and the very old.

But is it fair to our cohousing neighbors if we can't contribute to
maintenance and governance? Or should that even be a consideration? I
wonder about balancing all of this.

Muriel at Shadowlake Village

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One startling thing we at Raleigh Cohousing (senior coho now forming) learned when we toured older cohousing communities in the Triangle of NC that were built in the 1990s and early 2000s was that they never built in accommodations for aging in place and thus their seniors are having to move away. So unfortunate that this was not considered in the building phase so that aging and disabled residents did not have to leave at all or leave so early in the aging process.

Co-care, neighborly care can cover so many aspects of assisted living. It cannot cover 24/7 nursing care like nursing home. In between the two needs levels though the PACE program or hired and shared caregivers who can stay in a guest room in the common house can delay entrance into a nursing home for many months/years and maybe the whole lifetime.

The aging process and reality that we do age needs to be on everyone’s radar long before it is needed so it can be planned for in advance.

Kayelily
Raleigh-cohousing.com

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Muriel wrote:
This topic is bringing up an unresolved issue for me about the goal of
helping cohousers age in place. Does it make sense to plan on staying
longer in your home, with whatever kind of assistance, past the point when
you can "do" cohousing except in a social sense, receiving visits and
perhaps getting some kinds of assistance from your neighbors that you can't
reciprocate? How many such residents can a community sustain?

That last sentence is the key question: How many non-working members can a given community sustain in the long term? This is partially a function of community size - my community of 30 households can hold more than a community of 12 - but lots of other factors come into play.

I've often discouraged potential cohousers who seem too focused on all the things they think they will GET from cohousing but don't seem to realize that they will also be expected to GIVE. Similarly, as our communities age, we can't assume that turnover will take care of our needs - we can't just expect that we'll naturally attract loads of younger, more energetic new neighbors who will be thrilled to pick up all the work that we can't do anymore...especially when they don't have the longterm relationships the previous members do.

Some time ago Laird Schaub wrote an essay about his community, Sandhill, eventually deciding not to add anymore new members over a certain age, as they were becoming too "top heavy" demographically. They just couldn't for the longterm continue to do the physical work that they do with the bodies available. (Sandhill is an income-sharing agricultural commune, very different than cohousing, but the idea still applies - especially in communities with strong "we must DIY everything!" sentiment.)

We can all handle a small number of folks being "out" at a time - right now one of my neighbors, who broke her leg and lives in an upstairs unit she cannot now access, is living in the common house guest room and folks are helping her out while she recovers. But if there were FOUR folks needing that level of assistance at the same time, I think compassion fatigue and just logistical issues would prevent us from doing it well.

Eris Weaver, FrogSong Cohousing (Cotati, CA)
Graphic Facilitator & Group Process Consultant
eris [at] erisweaver [dot] info • 707-338-8589 • http://www.erisweaver.info

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and there is more to consider… what if we planned KNOWING that most of us will need help, especially as we age. Do we have a “grandmother’s house”? use au pairs who help both young families and older ones, create monthly fees that are high enough to pay ourselves (and others) to do some of the necessary work - which means that even when someone can’t cook once a week, or garden, etc. that either someone else in the community will be paid to do it, or we can provide a living wage to a member of our larger community (and thus avoid some of the inward focus that some communities get stuck with).

liz
Liz Ryan Cole
lizryancole [at] me [dot] com
Pinnacle Cohousing at Loch Lyme Lodge
Lyme, NH

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I suggest considering the PACE program as communities put their Aging in
Place Plan together. The program is designed to address precisely the
issues that you highlighted in the above quote, Muriel. Here are the
details:

PACE (Programs of All-Inclusive Care for the Elderly) is a Medicare (and
Medicaid) program that helps people meet their health care needs in the
community instead of going to a nursing home or other care facility.

The program offers a team of health care professionals providing
coordinated, comprehensive care, including a geriatrician who oversees
medical care provided by a team of physicians, nurses, therapists and
social workers. The program also provides home health workers and sends
contractors to make a participant's home safer and more accessible.

*COST*

If you have Medicare, you pay:

A monthly premium to cover the long-term care portion of the PACE benefit
(no premium if you qualify for Medicaid).

A premium for Medicare Part D drugs.

No deductible or copayment for any drug, service, or care approved by your
health care team.

If you don't have Medicare or Medicaid, you can pay for PACE privately.

*QUALIFICATIONS*

To qualify you must

1) Be 55 or older.

2) Live in the service area of a PACE organization.

To date, there are 121 programs in 31 states with the program rapidly
growing. See the National Pace Association (NPA) at npaonline.org for
up-to-date information.

3) Currently need, or be "at risk" for needing nursing home-level of care
(assessment criteria varies by state). Common criteria include needing
assistance preparing meals, dressing and/or bathing; chronic medical
conditions are also considered. Exemptions may apply.

AND most relevant to cohousing communities IMHO--

*4) Be able to live safely in the community with help from PACE.*

*The willingness of residents in cohousing to provide mutual support--so
that residents can "live safely in the community with help from PACE"--will
influence whether an individual can meet this PACE criteria or not. *

What needs to happen next for cohousers wanting to age in place with PACE
is to work through a few community-level test cases (to my knowledge this
has not been done in either a coordinated or even an ad hoc way yet).
I've identified NM as a good test case because the state and its
vertically-integrated hospital system provider is a recognized pioneer with
the PACE program, and thus influences others. This same hospital system
will be providing health care automation to the State of NC, so NC is an
interesting possibility as well. CO is also a sensible and strategic
choice, given work done with the Director of the Denver Office of Aging and
the ED of the Colorado Gerontological Society, where together we've all
been on a housing workgroup focused on Community Wealth Building (cohousing
being one very impactful way to build Community Wealth).

*Please let me know if your community is interested in being a test case,
either in NM, NC, CO or in one of the other 31 PACE program states. *

*Muriel, there's a PACE program out of Roanoke that may cover Blacksburg.
Refer to http://www.kissitopace.org/ . *

*Dyan, a program out of Holyoke that covers Western MA:
http://mymercylife.com/ .*

*Sharon, no PACE currently in DC.*

Those communities interested in being test cases could clarify PACE
Qualification Criteria #3 and #4 (above), as they relate specifically to
cohousing. Having a range of test cases would give us a better opportunity
to capture the unique choices that cohousing communities are making today--
on what we know is actually a continuum of "mutual support".

Now speaking in general terms, cohousers will need access to the
comprehensive medical care that PACE provides, but often not need
transportation/meals on an everyday basis, nor the more extensive
housekeeping/maintenance/checking up associated with the larg(er),
traditionally isolated single family home, nor the "social activities" that
are part of PACE programs.

*This means potentially reducing the cost/increasing the ease of providing
care in cohousing, giving PACE providers a clear incentive to work with
cohousing communities and their residents. *

At the very least, if your cohousing community is not currently covered by
a PACE program, it is possible that your community could participate in a
development phase PACE program. Thus cohousing could be considered in the
program from the get-go.

Wendy

Wendy Willbanks Wiesner
Executive Director
Partnerships for Affordable Cohousing (PFAC)
Affordablecohousing.org

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In an interview, probably on PBS, a few years ago a researcher said that it takes 3 daughters to maintain parents in their home. Sons usually don’t provide care—which makes China’s emphasis on having a boy a bit suspect.

Many of us had the same feeling when a family with 3 children to rent a unit. We had 20 children including a cluster of loud, active 10 year olds. How many children can we live with. But over time it has really sorted itself out.

People in their 50s and 60s are the most active workers here. They have skills and are ready to put their energy into building community. They aren’t distracted so much by their children.

But in terms of fairness, not siphoning off the perfect people, what are the percentages in the general population?

Sharon
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Sharon Villines
Takoma Village Cohousing, Washington DC
http://www.takomavillage.org

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There are many, many jobs people of every ability can do. We had an 80+ person who swept our sidewalks I don’t know how many times a week. He not only made our sidewalks look great, he was out talking to people and could set his own pace. I saw him one night finishing up the pots and pans with the help of a six year old. She brought the pans to him, he was washing, she was drying, and he told her where to put them away. They were both having a wonderful time.

On workdays we have someone sitting with the list of tasks to help people find and understand tasks and who to see for direction. That person is also a message taker and giver.

A person in a wheelchair took the work from the kitchen to a table to make it easier for her— peeling potatoes, etc. Soon two or three people are sitting there.

There are always jobs. They may not be essential, and a younger, smarter, more able person may do the job faster, but it is still appreciated by the community and is work. Sort the spoons. Fill the salt shakers.

People who are quite senile and incontinent can be difficult. But we had one on a team. The person loved it. The team managed by allowing them to bring up whatever they wanted to talk about when they brought it up and then went back to the agenda.

The difficulty is finding a person who is a good caretaker for them on a 24/7 basis who also becomes integrated into the community. We have had au pairs that fully participated and still come back to visit. But other helpers have been irritating and intrusive and not even nice to their patient.

I was sad when one person moved to assisted living before I thought she needed to because she didn’t feel she was contributing.

How many children can you handle. They usually don’t do anything for years, and further, they draw their parents away from other tasks. We had two teenagers leave for college one year and we got a surge of parents taking on jobs and coordinating events.

Sharon
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Sharon Villines
Takoma Village Cohousing, Washington DC
http://www.takomavillage.org

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Elders can serve the community in many ways as long as they are mentally sharp. Grandparenting is one way. Eldering: being sources of wisdom and nuturing is another way. Reading stories to children. Teaching what they are skilled in. Just because elders don’t move fast on their feet, does not mean they are not able to contribute aspects of living long honored by cultures and generations past. Those with dementia can stay as long as they have a partner to supervise them and then they need to move to a place that can provide more protective care like a memory care place—unfortunately. Cohousing residents cannot be expected to provide constant supervision to any adult.

The whole impetus for my husband Dave and I to form Raleigh Cohousing (senior) is so that we can avoid assisted living and nursing homes for as long as we can and hopefully our whole lifetime. We are in our 70s. We have waited too late to get started but we are doing this anyway. We have been through the aging to death process with our parents in the independent living to assisted living to nursing homes and we are NOT willing to go that route. We feel that cohousing is the best solution out there. Our community will have a range of ages from the 40s on up—because we can’t all turn 92 at the same time. We are not focused on raising children at this point in our lives although we are not against multigenerational communities, we just don’t think young families will be attracted to our community nor do we know how to market to them. The best of both worlds would be to have two communities adjacent—one multigenerational and one senior.

Kayelily
Raleigh-cohousing.com

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My mother has been in a nursing home, the wing with the highest level of nursing care for at least 10 years. She was in lower care for almost 10 years. For at least 5 years before that she needed frequent home visits to maintain her safety and comfort. Those 25 years (approximated dates) follow a period of 5 years when her DNR order was not followed. She is so angry to be alive in a debilitated state that she is difficult behaviorally. Running into people with her wheelchair, for example.

The nursing home keeps her alive no matter what. She doesn’t recognize anyone she ever knew and cannot answer questions logically.

The crisis is in understanding how to die. When do I pull the plug? It used to be determined by wealth — how much medicine can you afford?—and education — How much do you believe in medicine?

All of my mother’s four children had decided 25 years ago that she was like Mr. Magoo. She happily walked around the neighborhood and the shopping mall. When someone thought she was lost, they brought her home. Like Mr Magoo nothing ever happened to her. She was slowly deteriorating and we expected she would die from some incident in her body/head occurred when her DNR was respected, or no one knew she had had a stroke or whatever. We had all agreed to that.

After a fall and a stay in the hospital, the doctor committed her to a nursing home without her knowledge or the family’s. She would have to pass a test to remain home with part-day care or someone would have to accept full legal responsibility for removing her from her nursing home. None of us were able or willing to do that. She refused to keep a normal sleeping waking schedule, among other unique characteristics. And mostly she wanted to die.

A long preamble to saying that cohousing communities need to develop a theory of death if we want to be a cradle to grave community. The old one was that your body/mind decided when you died. The new one is that the health care community decides and short of instant death in an accident or terminal illness, they can keep you alive forever whether you like it or not.

Can cohousing develop a new theory of dying that allows people to live at home and die? Can we figure out when medical care is reasonable and when palliative care is more appropriate? And the neighbors and family not incur criminal charges if the person actually dies?

That’s the crux of things.

Sharon
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Sharon Villines, Washington DC
"Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose." Steve Jobs