[Editor's Note: Come to the Aging Better Together Conference and join Laird's pre-conference intensive: "Community Conversations about Aging: What You Need to Talk about and How”]
Almost all intentional communities do not expect to be able to provide support to members through end of life. While it may work out to provide that for some, there are a number of reasons why it may not work out in all cases. This essay is focused on what a group is likely to encounter when addressing the topic: What Are the Limits of Support for Basic Needs that the Community Can Provide Members with Diminished Capacity?
I. Asking for help
Some have no trouble being a squeaky wheel, and others would rather die first—literally. This means you have to expect that the threshold of when to ask for assistance will vary widely, to the point where some will request help with a want while others are suppressing requests for help with a need. You may have to get very specific about the kinds of support the community is willing to assist with.
II. Care Committee
In recognition of this, I think you want a mechanism whereby it's as easy as possible for people to step forward with their needs. This probably translates to a standing committee—let's call it the Care Committee—perhaps with a mandate that looks something like this:
o Periodically canvasses the membership discreetly, to ascertain if anyone is suffering from a condition requiring assistance.
o When someone is known to have suffered a health setback—either temporary or permanent; physical or mental—or is observed to have diminished capacity that suggests they may need help, this committee is authorized to approach the member in question to inquire about their needs.
If it's determined that the member needs help, the committee will help develop a message (to be sent to members only) that apprises the community of the situation and makes clear what kind of assistance is requested. The expectation is that the content of the message will be developed with the aid of the member needing help, such that they approve of what everyone is being told.
If help is needed, the tasks will be specifically described and the committee will help identify a volunteer who is willing to serve as the Care Coordinator for that person.
To be clear, the community is not guaranteeing that other members will step forward to meet the needs; it is only making sure that everyone has accurate information about the situation and that offers to help are funneled through the Care Coordinator.
o In addition to being available to members approaching them for help, the committee will have a responsibility to the community to see that rights are appropriately curtailed if it's deemed that the member's capacity has diminished to the point where they cannot function responsibly or safely. This could cover such things as exercising a right to block plenary proposals, or being allowed to drive to town to pick up kids after school. In handling this duty it is expected that the committee will work closely with family members and close friends of the member in question.
o The committee will take primary responsibility for shepherding through community process any issues or suggested policy adjustments in the arena of support for members needing assistance in getting their needs met.
o The committee can serve as a limited resource in helping members transition from living in the community to living elsewhere if conditions are such that the member's basic needs cannot be met if the member continues living in the community.
III. Waiting too long
This a delicate topic. As such, groups often put it off until they have members in need of help, which greatly complicates the conversations because you're essentially setting limits that will be immediately applied to individuals at or close to need (don't you love me any more?) This is an example of how waiting works against the group. It may be a tough topic pre-need, but it will be veritable hellhole if you delay policy developmnt until you need to apply it.
IV. Resources will not be evenly distributed
You have to expect the amount of resources available to a member suffering diminished capacity will be quite different from one member to another. Here are reasons why:
o Partner in residence
It makes a big difference whether the person in question is living alone or with a domestic partner—someone able and highly motivated to supply help.
o Money in the bank
There is also going to be quite a range in terms of the financial resources (cash, home equity, and strength of insurance) available with which to hire assistance.
o Social capital
The willingness of other members to come forward to provide home health care assistance will be directly related to the affected member's social capital, which roughly is a measure of how much more the member in question has given to the community than what they taken. If a member runs a high balance, then the community is far more likely to be there for them in their hour(s) of need. If the person was not much engaged in community life, then that's likely to show up here.
o Graciousness of the person receiving assistance
In addition to one's track record as a community member over the years (see the previous point) it matters how a person handles aging (and possibly pain) emotionally. For some, their spirit expands and there is a heightened sense of appreciation for the gift of assistance. They are grateful and let those around them know it. For others, their spirit shrivels and they become curmudgeonly. Those folks aren't very fun to be around and it directly impacts how much others are willing to volunteer care. (It's the same lesson that Dr Seuss so entertainingly related in How the Grinch Stole Christmas.)
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Having said all this, it's important that the community be as even-handed as possible in what support it provides members in need: the reaching out to gather accurate information about needs, the appropriate sensitivity and discretion in disseminating it, the coordination of support, and the help in transition when it's no longer possible to live in the community.
Taken all together, it's a lot to handle, but I think these are the inevitable challenges the community faces and it's doable to handle them as long as there's the will to discuss matters openly and with heart. Remember, you are not promising that members can stay in the community until they die; you are just promising to do what you can without swamping the boat.