Thursday, February 26, 2015

Aging in Place in Community

Increasingly, I've been asked to facilitate community conversations about coming to clarity about how much a community can stretch to accommodate members aging in place.

While most intentional communities are careful to not make the claim that they'll provide full end-of-life service (no matter how beloved someone is), there remains considerable nuance and delicacy about determining exactly where the limits of support lie. That is, when is it time for an aging member to move to a nursing home or assisted living in another setting?

Like a lot of hard questions, this one is typically put off until the community is in the situation where it needs to apply the answer, and the conversation is skewed by all the feelings associated with the particular person whose failing health begs the question. This can get messy.

To be sure, some people die in their sleep or get hit by a truck and the question of long-term support never enters the equation. Also, some aging members decide on their own that it's better to shift where they live (perhaps moving in with their adult children), obviating the need for the community to wrestle with this question. So it's an occasional need and doesn't apply in all cases.

Still, it applies in some cases, and it's prudent to be ready for it.

In addition to it generally being less expensive to continue living at home for as long as possible, it's what's most familiar and comfortable—two important quality of life factors. Further, in most cases there is the opportunity—which tends to be peculiar to community—for seniors to contribute meaningfully to the lives around them even as their overall capacity to do so diminishes. This too, contributes to quality of life and you can appreciate why people who have enjoyed the connections and sensitivity of community living are reluctant to leave it for institutionalized facilities.

As if that weren't enough, there is ample evidence today that living in community is itself healthier beyond the claims above. Witness what gerontologist Bill Thomas discovered when developing the Green House Project as a radical alternative to long-term care.

And yet, for all of the reasons that it makes sense to keep people in community as long as possible, the time may come when the community can no longer handle the load of support. How far is the community willing to go to support people aging in place? What are the markers that indicate the community may be at the edge of what it can do and it's time for the aging member to get additional support outside the community? Following are some things to discuss:

o  Deteriorating cognitive abilities (can the person follow conversations and contribute thoughtfully and constructively in meetings; is it safe for them to drive).

o  Personal care needs that exceed the capacity of volunteers to handle (bathing, dressing, laundry, shopping, grooming, feeding, cleaning, incontinence). To some extent these things can be covered by part-time professional assistance (which may or may not be provided by a member of the community), but there are limits.

o  Deteriorating physical capacity (can no longer walk, is susceptible to bed sores, can't lift anything more than a glass of water, can't climb stairs, shaky balance).

o  Compounding health concerns (diabetes, obesity, Parkinson's, loss of hearing, loss of sight).

o  For how long is it anticipated that assistance is needed (helping a 55-year-old recover from a broken leg is demonstrably different than an open-ended commitment to a 70-year-old in frail health; on the other end of the spectrum, the community may be willing to rally for a two-week stretch of concentrated hospice care—something that is only possible because it's short-term).

o  Special challenges (for example, is the person becoming belligerent, or prone to violence?)

It's important that volunteer support (perhaps organized by teams, so that it doesn't fall too heavily on too few) not be extended beyond what can be given freely and without resentment. Propping one person up while the quality of life for several others degrades is not a good long-term choice.

I recommend that communities establish a Special Needs Committee who's job it would be to:

A. Discreetly explore with members (or the loved ones of members) their need for assistance to continue living in the community. Note that this is not limited to seniors—it's open to anyone needing assistance. This would include both what the member might need in the way of support, as well as how that member can reasonably continue to contribute to the maintenance and well-being of the community. For this to work well, it's essential that the committee receive accurate, current information about the member's health and capacities, along with a commitment that the committee will be apprised of any significant changes in the member's condition.

B. Based on guidance established by the plenary (in answer to the above questions, defining the limits of what the community might be willing to offer in the way of support), the committee will see if they can put together a support team of volunteers in the community to meet the requested needs. Any team created for this purpose will exist for a specified length of time. If needs extends beyond that time, an extension may be considered, or another team may be put together—though this will be considered on its own merits and will not be granted automatically.

C. In consultation with the member (and perhaps the member's family) the committee will craft a communication to other community residents letting everyone know what's happening.

D. The committee will be available to receive information or complaints about how this support is going, troubleshooting and adjusting as appropriate.

E. If the committee believes the member's needs are exceeding the community's capacity to provide support, it will be their task to inform the member (and their loved ones) of that limit and the possible suspension of support.

F. Throughout, the committee will be expected to hold information about a member's condition and needs in confidentiality, excepting as it's appropriate to complete C above.

G. If the committee believes there needs to be any adjustment to the limits of what the community can offer members in need, it will see that this is brought to the plenary's attention for consideration.

As is implied in the job description above, it's important that care be taken in how members of this committee are selected. While the Special Needs Committee will (hopefully) not have a lot of work to do, when needed the committee will be well positioned to handle a sensitive task with discretion, dignity, and decisiveness.

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