Q: Can I allow myself to be carried, supported, upheld by others and the love of God?
PYM Faith and Practice, 2002
For individuals facing long-term health challenges and their loved ones, choosing residential health care can be one of the life’s most difficult decisions. The loss and emotions felt when one faces letting go of independence and a long time home may be complicated by the stigma associated with nursing homes or other care environments. Many people are not sure where to begin in the search for long term care.
Practicing discernment based in our values can assist us in making decisions that honor our individual priorities. We can employ Quaker clearness process to assist in discerning what is best for the individual and those involved in care. Knowing more about choices available can also help offset stigma. A useful first step is to assess both the individual and the available local options.
“Nothing about me without me.”
Memorize this phrase used by people with disabilities to remind us that if we are talking about someone, we should be talking with that person. Throughout any assessments or decisions, it is important the person who is at the center of the discussion is included and listened to!
Assessment of the Whole Person: See the person, not just the illness or challenge. Look for their capacity, likes, wants and values in addition to the immediate needs or concerns.
Assessment of Daily Needs: A professional assessment can help determine how well a person can function without assistance. The ability to perform tasks such as preparing food, getting to the bathroom, bathing, using a telephone, and any specific needs are evaluated. Your Yearly Meeting office can help identify professionals who can conduct such an assessment.
Assessment of Resources: Consider viable alternatives. A self care assessment may reveal, for example, that the person is not able to cook for him or herself. . However, is there a family member close by who can deliver meals that can be easily heated? How much help can local organizations such as the Meeting or Meals on Wheels offer? Is the person’s safety at risk—will they forget that they have turned on the stove? Are there adaptations that can be made—technology available to offset any risk? Finally, assess whether combined services and adaptations meet the person’s needs:
- Will he or she be safe?
- How well can he or she maintain reasonable physical well being?
- How will the person stay socially, spiritually and emotionally connected?
- What does the person most value and how can those values be supported?
A Clearness Committee can offer loving guidance during a time of uncertainty and crisis. This supports a meaningful decision making process that is grounded in spirit and faithful to the values of the individual and loved ones caring for him or her.
Your Yearly Meeting can help identify local resources for aging and care at home. If long-term care is determined to be the most suitable option, know that there are many good facilities to choose from and that many people, after an initial adjustment, find themselves more active and socially connected than they were at home.
“Friends do not take readily to being cared for…But many of us will find ourselves in need of full care in our old age. This will not be easy…But there are compensations and opportunities…And in the experience of living in a Home with others, a deep sense of sharing the darkness and the light can lead to a sense of community not known before…”
Margaret McNeill, 1990
Simple things to consider in choosing a long term care facility:
The basics: Is the home close enough to allow frequent visits by loved ones? Is it financially viable? Does the facility provide the appropriate level of care to meet the person’s needs, and if one’s condition changes, will they still be able to provide appropriate level of care? If not, what are the options – would one have to move to another facility or is it possible to stay there and receive supplemental services to meet health care needs? Once a few facilities are identified that meet the basic criteria, schedule visits to those facilities and consider:
- What is important to the person who will live there—to be in a town or a city, to be close to nature or children?
- What types of educational, creative, spiritual, fitness or other activities are provided and are they consistent with the values and interests of the person who will be living there? How much are residents involved in decision making and planning? What adaptations are made so that frail residents can pass time meaningfully?
- Will the person be able to get to beloved activities outside the residence, such as Friend’s Meeting or other places of worship, family visits? How might this be supported?
- Empowering self-care and mobility to the degree that is appropriate supports emotional and physical well being. Are residents encouraged to walk, as they are able, wheelchairs used only as needed, not for convenience or speed? Are adaptations made, such as opportunities for rest?
- Do residents seem engaged? Do their rooms have personal touches? What do the interactions feel like between residents and staff? Does the environment feel home like?
- Direct Caregivers are likely the ones who will spend the most time with residents. How is staff treated? Do they seem respected? Does it look like care workers have time to spend with each resident or do they seem harried and rushed? Is direct care staff actively involved in care planning? Are their interactions kind and friendly?
- Overall, is there an atmosphere of kindness and warmth toward all?
“There is that near you which will guide you. O wait for it and be sure you keep to it.”
Isaac Penington, 1678, Quoted in PYM Faith and Practice, 2002
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