By Rev. Karla Woodward
Pastoral care for the frail is not difficult or complicated. For the most part, it is a simple gift of time and presence. Pastoral visits from clergy or lay volunteers maintain a connection with those who can no longer get to church so they know they are not forgotten. They reach out to faithful, active members as well as those without a strong faith connection. Visits assure people that faith can be fostered at any age irrespective of ability or disability and remind people that in all times, all places and all phases of their life journey God remembers them. Pastoral care for the frail is about relentless love and compassion and Christ.
Frailty is a journey of physical, social, cognitive (thinking), sensory or mobility (moving around) issues that can combine in many different ways to cause loss of strength and decreasing activity. Dementia can complicate, intensify and escalate the frailty journey. Frailty is not a solid, easily understood syndrome. It may begin with one event, like a fall, but other more elusive issues quickly add to the situation. No two people follow the same path and the path is not simple and straight. It can be something new and different constantly, making this journey so very difficult for both the person and their caregivers. Ultimately, frail people continue a spiral of decline that eventually leads to death. The spiral may be very slow or very quick and have some brief upturns, but it is a spiral none the less.
To further complicate the issue, frail people live in a vast variety of settings, and the setting they’re in is not always the best with regards to their advancing needs. Some people age successfully living in their own home in the community. Others continue living in their own home in the community way past the time when their needs can be safely and securely met. Some live in senior adult subsidized housing or other independent living settings quite successfully as they age even into frailty, and many others continue to live in this same setting always on the precipice of disaster. Family caregivers can assist in successfully maintaining their loved ones in the community, and they can also insist that their loved ones stay in the community long past the time they should. Those who are proactive and move to a retirement community or assisted living may have a greater potential for having their safety and security needs met, but they feel “locked in.” Others on the frailty journey reside in skilled nursing or dementia care when their physical or cognitive issues demand that they do so, and most of the time they really are locked in.
Every church has frail people either as members, as extended family of members, or in the community served by the church. Some frail people are able to continue coming to church if they have transportation, but most eventually become invisible. Without a ministry that intentionally reaches out to the frail in the church family or community, they are lost. In the journey of frailty, slowly but surely there is one loss after the other. The church should not be one of the losses.
Yet, the intentionality of offering pastoral care to frail people is not always easy for churches. Visiting someone with dementia can be an adventure, and the physical journey of frailty is not always pretty and tidy. Pastoral caregivers aren’t sure what to do or how to do it. The overall needs of frail people are generally deep and wide. Without clear guidelines determining the nature and scope of pastoral care, pastors and visiting volunteers can easily get caught up in trying to intervene in many different needs and that can be overwhelming (and at times inappropriate).
A successful and appropriate pastoral care program for the frail can be designed, developed and implemented, but it has to be done with great care and concern in defining boundaries from the beginning.
When evaluating or beginning a pastoral care ministry for the frail, things to consider are:
Who is going to visit?
Many times there is an expectation that the pastor is to do the visiting. For frail people, it is important that the pastor visit, call or send a note on a regular basis to develop a relationship for ongoing care. It is often an unrealistic (and unfair) expectation that the pastor do all the visiting. First, it is not always easy for the pastor to get all the needed visits done. Secondly, it shortchanges the opportunity for others in the congregation with the spiritual gifts of compassion and mercy. Training, “consecrating,” and naming from the pulpit those who will assist in visiting gives them the authority and blessing to do this important work. Pastors come and go in an appointment setting. Visiting volunteers can provide much needed continuity for the congregation.
How often should people be visited?
The church must first decide what they have the time, energy, and spiritual gifts to really do. If visiting is to be just pastoral in nature (presence and prayer), then begin by determining how often someone from the church will visit. This does need to be flexible depending on the circumstances, but if the person is stable and not changing significantly over time, will the visit be once a month? Are there volunteers and staff that can visit once a week without becoming overwhelmed?
The frequency chosen must be realistic so it can be continuous, consistent and reliable. When the world of the frail shrinks by being homebound or in long term care, visits are very important and anticipated. Letting people know how often they can expect a visit will help establish boundaries. If a scheduled visit must be postponed due to unanticipated circumstances, get word to the person so they aren’t waiting.
If the person becomes acutely ill, visits need to be more frequent.
If the person enters the hospital or has a time when they are experiencing increased physical concerns, visits should be more frequent. Often, daily visits are needed to provide excellent pastoral care.
The decision for hospice care requires a different set of boundaries. Many people who are frail make the decision to discontinue active medical treatment and choose palliative support of hospice for end of life care. Hospice care, however, is a journey unto itself, and that journey is sometimes long.
There’s a difference between being on hospice and actively dying. If the person is on hospice, judgment must be used to determine how often they are to be visited. It may still be monthly, or may need to be weekly depending on their physical condition. When people enter the stage when they are actively dying (have ceased eating and drinking, have significant changes in their vital signs, or acute physical changes that will be incompatible with continued life in the near future), people often need to be visited daily.
Frail people often move around frequently, and an established visiting schedule can help maintain contact.
In some communities, the changes a frail person is experiencing are widely known. In others, people enter the hospital, rehabilitation, or move though different levels of care (independent living, assisted living or skilled nursing) with great fluidity unknown by the church. It is not uncommon for frail people to change their living sites several times in one week! A fall or illness can precipitate hospital care, then rehabilitation care, extended care, back home, etc. Ideally, the person or the family will let you know of changes, but that does not always happen. Regularly scheduled visits can help the pastoral care team keep up with the changes and provide consistency in contact.
Leave a reminder at the home or bedside of your visits.
It is not uncommon for frail people to have some short term memory loss. They may quickly forget a visit and not remember when the next one will be. Leaving a card or note at the end of a visit with your name and the date will remind them (and their family) you were there. Include the timing for your next visit, such as “I will return on (a specific date),” or within a basic time frame (in one month) and provide contact information if a need arises before that time.
What are your safety and security boundaries for visits?
Pastors in the United Methodist Church go through extensive screening and boundary training. Volunteers and staff can be background screened, trained and certified for working with youth and disabled adults through Safe and Sacred Spaces training. In the Silver Link Ministry for the frail at The United Methodist Church of the Resurrection, volunteers are encouraged to take Safe and Sacred Spaces, but there is little in that training regarding working with frail, older people. Silver Link Ministry does background checks using the Disclosure to a Volunteer Regarding Procurement of a Criminal/Credit Report. Everyone, no matter how long they have been involved with the church or how well they are known, fills out this form. It gives the person being visited, their family, the hospital, or the care facility assurance that due diligence has been done in screening visitors.
Special care must be taken for boundaries depending on the level of care.
Typically, the less visible the visiting encounter is to others, the greater the need for setting safe boundaries. If the visit is in the home or apartment where there will be complete privacy, it is wise to let someone else know when the visit will take place. Men should visit men, and women should visit women. If there isn’t enough volunteer or staff support for this to occur, it is wise to take someone else along for the visit. A man visiting a woman alone in the home or a woman visiting a man alone in the home can set up a scenario (on both sides) where unfortunate accusations could be made. Having safety and security guidelines in place can help prevent any unnecessary (or untrue) issues.
If the visit is in assisted living where there are individual rooms that are very private, let the front desk staff (or other available staff) know you are visiting. If a man is visiting a woman (or vice-versa), try to meet in the commons area. If it is in the apartment, keep the door open so you can be easily observed from the hall. Don’t touch their things and be careful of personal touch. Let the staff know when you are leaving.
If the visit is in skilled nursing, it’s a little easier to be observed. People are out of their rooms more and in a commons area. Still let the staff know who you are visiting if they are in their rooms/beds and respect their space and person.
Touching/hugging can be inappropriate if done in an intrusive way, but positive, healthy touching can be vitally important to frail people. If they are in a higher level of care (such as skilled nursing), often the only touch they receive is care related, unwanted, and painful. Holding a hand, gently touching a forearm, shoulder or back can be a great blessing to people. Touch can communicate care and concern to those who are unable to communicate in meaningful ways. It just must be done carefully and honorably.
What is yours to do?
When determining the boundaries for pastoral care, the individual church must decide what is theirs to do. Is pastoral care a brief visit and sharing of The Lord’s Prayer? Do you take communion once a month or anoint for healing? Do you take the weekly worship bulletin, offer them the phone number for a Daily Devotion, and leave a Large Print Upper Room or other church publication? This certainly is an appropriate boundary of pastoral care for the frail.
Some churches extend their visiting/pastoral care boundaries to include accessing community resources, becoming legal guardians, driving to appointments, grocery shopping, etc. Likely, most frail persons living in their own homes have great needs, and some churches are able to meet them. The attempt to be all things and solve all problems can quickly become overwhelming and perhaps inappropriate. Establishing what you can realistically accomplish with excellence and without liability will make your pastoral role clear to all.
What are keys to excellent pastoral care for the frail?
Commit to the journey
The physical journey for people who are frail is often a downward spiral with many twists and turns, yet it is not assumed that pastoral care for the frail is just ministering to the dying. Most people would likely say they’d just as soon live right up until they do die. Pastoral care for the frail commits to the entire life journey from when they enter this care until they do die. It is ongoing, consistent, honoring, and meets the person where they are in their journey – even if they are in a coma. Excellent pastoral care for the frail assumes that people are blessed by the presence of the church, representing Christ, in their lives at all points, whether they can communicate or not. It assumes people with dementia have “holy windows” into their spirit that can be reached through care and concern from the church. Excellent pastoral care for the frail never quits, even if the blessing or the benefits are not visibly witnessed.
Give them the pieces they need to be healed and whole in the love of God.
When visiting the frail, one question that should always be asked is, “What if I’m the last person representing the church and Christ that visits?” What can you offer people to give assurance that their “circle of faith” is complete in that moment?
Prayer
Generally speaking, people who are older know The Lord’s Prayer. It is a part of their long term memory and will remain intact even for confused people. It is familiar, comforting, and offers the opportunity to speak of praise, forgiveness and faith in Jesus Christ. It is not uncommon for people who are presumed to be in deep comas to begin mouthing The Lord’s Prayer along with the pastoral caregiver.
Anointing
In the United Methodist tradition, anointing for healing is offered based on the Prayer of Faith in James 5:13-15. This passage is read, and the person is anointed with oil. Care is taken to explain that healing is not intended to be curing, but instead being made whole in the love of God.
Forgiveness
Often, people who are frail express the need for forgiveness for things done in the past. A Service of Reconciliation can be offered. Listening to their stories in a nonjudgmental ways can lead people to healing and hope as well. Preface the sharing of The Lord’s Prayer by reminding people that when this is prayed, forgiveness is asked for.
Life Review
In offering pastoral care to the frail, do not underestimate the need for life review. People need to tell their story to validate that their life has had value and worth. Listen to them, write their stories down, and praise them for what has been good.
Holy Communion
It is very important for people to continue receiving Holy Communion. This can be consecrated on the altar during regular worship and taken forth to the church family who are frail. If the person has swallowing issues, it is best to use the small wafers, broken into quarters and intincted in the juice. If the person has some degree of dementia, ask if they’d like to receive. Hold the wafer directly in their line of vision so they are cued, intinct it and hold it into their line of vision again, then serve them directly. People who have dementia often lose their ability to sequence, and they are unable to take the wafer from your hand, intinct it, and get it to their mouth on their own.
Scripture
Read comforting and familiar scriptures to the frail. Many verses are committed to long term memory and will open them to their past faith journey. There are many such verses, but ones that seem most helpful are:
Psalm 8
Psalm 23
Psalm 121
Ecclesiastes 3:1-8
Isaiah 40:28-31
John 3:16
John 14:1-6a
Romans 8:37-39
Philippians 4:4-7
2 Timothy 4:6-8
Revelation 21:1-7
Address significant others but remember the individual.
Most frail, older persons do not exist in isolation. They have a network of friends and family who are traveling this journey with them. For caregivers, this journey can be quite difficult as they physically, emotionally and spiritually attempt to meet the ever changing needs of their loved one. Caregivers are often near exhaustion when care is offered in the home. It can be a 24/7 job and will take a physical and emotional toll on the caregiver over time.
The decision for long term care can be excruciatingly difficult for families. Often, promises have been made to “never put me in one of those places.” Care homes are expensive and an entire lifetime of savings can disappear very quickly. The decision for long term care (assisted living or especially skilled nursing) is often infused with feelings of failure. The caregiver feels they failed and their extended family may tell them they failed. The frail person’s body or mind has failed them in some way, and they often feel their caregiver has failed them.
Yet, the decision for long term care can be the best decision made in a frailty journey. Safety and security must come first in all times and in all ways. If safe and secure care cannot be ensured outside the care home (and it often cannot), then it is the best, loving decision to make. Finally the caregiver can once again become the wife, the daughter, the son and not the nurse!
The burden of care does not end if and when the person enters long term care. The physical role changes, but the emotional and spiritual role of advocate and supporter can still be overwhelming. Excellent pastoral care for the frail extends to the significant others who are fellow travelers in this journey as they listen, encourage, and offer suggestions to assist in navigating the systems they encounter.
Excellent pastoral care for the frail serves both the caregiver and care receiver during a visit. It’s a natural tendency to focus on the person who is most verbal and interactive, which will likely be the caregiver. If the care receiver has confusion, a lessened ability to speak or understand (expressive or receptive aphasia), is bedfast or in a coma, they may get overlooked in a visit. Always take time to focus completely on the care receiver. Get close, touch them gently, speak directly to them, pray for them by name within their hearing. Always trusts they can hear you and be blessed by your words.
Likewise, trust that they can hear you if you talk about them as though they’re inanimate objects taking up space in the room. Honor them by stepping out in the hall to talk about funeral plans or other sensitive issues.
Encourage pastoral self-care
It is critical that the pastoral caregiver for the frail (pastor or volunteers) take care of themselves as they faithfully serve. The downward spiral of frailty can take an emotional and spiritual toll on those serving as attachments are formed. Grief can be significant. Find ways to confidentially process the work done. Consider hosting a Service of Remembrance each year where those involved in pastoral care can formally name those they have loved and lost, grieve, pray, and be praised for the great work they do.
Conclusion
Remember that the simplicity of time and presence through visiting, even if that time and presence are offered in complete silence, matters. It matters a lot. It is through your visit that Christ can be most present. It is always worth the effort. It will bless and be a blessing.
Karla Woodward, July 2010, Center for Ministry with the Frail
Copyright © 2010 The United Methodist Church of the Resurrection, 13720 Roe Avenue, Leawood, KS 66224, 913-897-0120, www.cor.org. Permission granted to reproduce materials for education and ministry.