Elder & Family Care: A Call to Churches

Our global population is “graying” and multiple generations of family are often separated by great distance. Churches will be increasingly relied upon as a resource for Elders and their families. Now is the time to call ministry teams and develop Elder-adult outreach programs. Older adults need to remain visible to church membership, their families need to remain on the radar for spiritual care. Churches can set the standard for how we care for and with each other across the lifespan.

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To better understand the urgent nature of the “flood” of aging persons and their coming needs,  consider the impact of the following two facts on the family, the church, the community, and the individuals who need care and support.

  • Currently, for every person receiving Social Security and Medicare benefits, there are 4 contributing individuals in the workforce. By 2030, (only 14 years away), there will be approximately 2.2. (Reference available upon request).

Nurses, social workers, doctors, care givers, etc, will be in shorter supply by half. Greater pressure will be placed on Medicare dollars. Supports for aging in place over a longer life span must be strengthened. Churches should be part of the solution.

  • Assisted Livings are marketed as vibrant communities filled with fun and social activities, but it is very easy for older adults to become isolated and discouraged. 13% of institutionalized adults suffer from depression.  Spiritual care is sparse.

Facilities rely on volunteer programs from the community to engage with residents, and church members hunger for support and visits from their “church family”.

I feel an urgency in the call to develop ministries that serve Elders and their families. Whether your church’s focus is evangelism or social justice, the trumpet is sounding and the time to act is now.

  1. Hire a Parish Nurse, part or full time. Look for grants to support the position. RNs can:
    1. Create a program for home visits, medication review, wellness teaching, patient advocacy, and communication with families and medical providers.
    2. Be a medical case manager who can also address spiritual and wellness needs.
    3. Work with Eldercare Advocates to write policies governing the church’s supportive programs for aging adults and their families.
    4. Encourage discussion of Advance Directives, end-of-life care wishes, and emergency contacts. Develop a way to secure that information in the church in the unfortunate event that it is needed.
    5. Discern how to provide spiritual support for individuals facing the end of life. (Hospice chaplains are often the sole spiritual providers at end of life).
    6. Coordinate church staff annual CPR and AED training.
    7. Assures volunteers working with Elders (and children) have criminal back ground checks completed.
  2. Develop a ministry of Eldercare Advocates. EA’s can:
    1.  Host family/caregiver support groups open to the community.
    2. Identify safety and accessibility for older or fragile church members and work with the appropriate leadership to make changes.
    3. Introduce weekly visits Assisted Living Facilities/ Memory Care Units where members or family members reside. Share Bible Study, music, prayer, and monthly worship and communion.  Never assume “someone else is taking care of their spiritual needs now.”
    4. Teach other volunteers, expanding the scope and reach of the ministry.
  3. Scrutinize your buildings and programs for accessibility and safety.

    1. Is there a handicapped accessible bathroom, complete with a cupboard of protective undergarments, disposable gloves and cleansing wipes?
    2. Can mobility-impaired persons get around the building safely in a wheelchair, scooter or using walker, canes or crutches?
    3. Is there a protected “drop off” area for inclement weather? Is there a greeter to help those with mobility needs?
    4. Adapt your “cry room” for families with a potentially disruptive Elder, and include some appropriate interactive items.
    5. Consider hosting an “IT” room for those who don’t have home computers. Computer literate members can teach others to use Skype, email, and social media to connect with distant loved ones. Get them talking!
    6. Create an emergency response plan to contact members who are home bound or have special needs.
  4. Bold congregations can also consider developing:
    1. Adult day care programs to provide respite care and social opportunities. Not unlike a church preschool model, it can include Bible Study, teaching and respite for family members.  For adults with dementia, a routine can includes chapel, music, scripture and creative projects. (This same ministry can be offered in facilities.)
    2. Manage a church run “board and care home” to serve the congregation and others. One efficient, but small scale model is the Green House Project thegreenhouseproject.org/ . Social policies generally support “aging in place”. Some Elders need fulltime assistance when they are no longer safe to live independently.
  5. Communicate and collaborate with local social service agencies to understand the needs of seniors in your particular area. There are likely Foster Grandparents, spouse/caregivers, or seniors living in poverty that would benefit from “adoption” by a congregation. Are there special needs in your area? In 2001, the Faith Based Initiative partnered churches and social service agencies. In the case of Eldercare, it could be revived to promote protection, support, and spiritual nurture of the aging population.

There are other ways to support an aging congregation and its local neighborhoods.  From community gardens to home repair ministries, the opportunities are endless. The first step is to understand the needs that are closing in upon us. May your ministry teams prayerfully prioritize and begin to address these needs within your local congregation.

 

 

The Changing Image of Aging

GrannyContemplating issues facing the aging population on our planet (and therefore, facing us all) I became aware of the lack of positive role models for active aging and co-generational caring in families. In the US, where people over 60 are more than 30% of the population, only 2% of movie and television roles portray older adults, and then often in cameo/comedic roles.. What does this lack of role modeling mean for us? That we don’t have a strong cultural idea – coming out of the “nuclear family” post WWII era – regarding the needs of our Elders for meaningful relationships with younger adults and conversely, the need for all of us to “mind our elders.” Culturally, we lack a map for what healthy, positive co-generational sharing should look like, and how to live it out.

I cut my cultural teeth on the sitcoms of the 60’s, 70’s and 80’s. I remember when American television broke the color barrier and when women quit vacuuming in high heels and pearls (Thanks be to God!). Seniors, however, continue to remain quite invisible.  Where is the show about life in the Assisted Living or retirement living that includes bicycling miles for an ice cream treat? British and Canadian television have done better integrating multiple generations in their storylines –  from “Doctor Who” to 81 year old Dame Judi Dench (who continues to model of an active and vibrant “granddame”), as Jean Pargetter-Hardcastle in the multi-generational family sitcom “As Time Goes By”. “Downton Abbey” gave us a 4-generation family (albeit cared for by paid staff), and the excellent aging (and maturing) of family members across a decade. Some other favorites portraying the retirement cohort would be “The Last of the Summer Wine” and “The Vicar of Dibley” which include positive, humorous and touching portrayals of people from different generations supporting and encouraging each other (sometimes into trouble). They are people we can relate to and imagine being in relationship with. (They also die – and their friends mourn).

Twenty years ago, the battle cry for assisting the most vulnerable in our communities was “It takes a village to raise a child.”  Then, as now, we hear little about how the needs of elders in our society will be addressed beyond the hot button topic of Medicare and Social Security “reform.” There are problems there that will need to be addressed creatively as the Boomers hit those roles. More pressing, and in the grasp of each of us right now is: How do we support the Elder community from the ground up?  When is the spotlight going to fall on Elders – not as dottering, cameo appearance comediennes or crazy/scary and unpredictable  – but addressing the need for accessible spiritual care and nurture, medical care, socialization, generational sharing and protection from those who would abuse or exploit?

The Art of Parentcare LLC will be offering training in 2016 for individuals, churches and other community groups to develop additional skills in assessing and creatively supporting the spiritual, physical and emotional care of aging adults and their families, and to aid in anticipating and meeting the changes that will come as the wave of Boomers hits the shore of their seventh decade and beyond. Private and group consulting services are also available.

Truth and Lies Part I: People Die

A troll recently hit our hospice’s social media page. His anger and vulgarity exposed his pain, still fresh after the loss of his mother, some unknown time ago, to lung cancer. “She was just fine!” he yelled, “Her lung cancer wasn’t bothering her or me, and then hospice came in with their medications and murdered her”.   I was annoyed he vented himself thus in our advertising a summer camp for local youth who have suffered a loss. Maybe his outburst was appropriate, though. He was after all, a woman’s son – someone’s child still suffering in his own grief.

Let me share one important truth: Hospice doesn’t kill people.

Cigarettes do. Tumors do. Alcohol, consumed excessively over time will. A weak and failing heart will. Sometimes, the treatment for those ailments will.

When those enemies of life have torn down the walls of healing and your defenses are diminished, hospice is who you want walking with you as the battle wanes. They are Warriors who will see you safe to the end of the dock, where you must cross over to the other shore on your own. During this time, your hospice team will keep you as physically, emotionally and spiritually comfortable as possible.

Do I wax rhapsodic about hospice? I do. This form of midwifery has fascinated me first reading Elizabeth Kubler-Ross’s seminal work “On Death and Dying”. Just as childbirth was sterilized, medicalized and managed in the last century, so was death. The rise of the medical and pharmaceutical empires removed these natural milestones away from the home and those who could honor, protect and keep sacred these passages for both individual and family. Our culture became anxious about birth, anxious about death, and given the plethora of sedatives and anti-depressants dispensed, anxious about everything in between.

Dying is a passage, not dissimilar to labor. Different “stages” have distinctive milestones and characteristics.

  • Early in the process of unremitting but incremental decline is a turning inward – sleeping more, increased isolation and choosing more intentionally how one spends their time. Personal energy management focuses on conservation rather than strengthening.
  • There may be a focus on life review, sharing important stories and making plans for one’s last days. This can be uncomfortable for family who are not at the same point of acceptance as the person wanting to talk about it all.
  • In the last month to six weeks, it is common for appetite and thirst sensations to decline. Dying people don’t starve to death, but they do decrease their intake. A body conserving energy doesn’t need fuel, and doesn’t need to use up energy for digestion. This is a natural function of the body. We have to get our heads out of the way so the body can complete it’s life cycle.
  • Dying people often talk about “those who have come to help” or “those who are waiting for them”. Sometimes they are recognizable; sometimes they are strangers or “angels”. Rarely do they incite fear.
  • In one’s last days, it’s not uncommon for patients to talk of “going home”. This is often confusing to the family, who often respond with “you are home”. My own mother asked often in her final days if she could go home now. My sister carried guilt unknown to me for several years, as she thought Mom meant going back to her house. “Home” is a much bigger place, and somewhere the dying want to get back to.

People approaching their end of life can experience unnecessary suffering. The ethical and professional role of hospice is to provide comfort. Sometimes that comes from the confidence gained by knowing this is a normal, natural process – this business of dying. Sorting out tumultuous relationships can reduce emotional pain. Position changes, massage, heat, and favorite foods can increase physical comfort. And when needed, hospices have “rescue meds” or “emergency kits”.

“Rescue”. “Emergency”.

These medications aren’t prescribed lightly, nor do our patients or families treat them so. These are powerful tools that are highly effective when other resources are not.

A usual order for morphine sulfate solution starts at 0.25 ml. Measure 0.25 ml. It’s about 7 drops of fluid. The maximum dose of 1 ml (20 mg), is 1/5 of a teaspoon. It is concentrated. The dying body is sensitive, and it doesn’t take much to effect pain relief.  If pain is not relieved to the level the patient has stated a desire, more can be given.  If pain is not managed (not alleviated but managed), hospice is not doing it’s job.

One side effect of morphine is that is slows respiration. This is incredibly effective for people with chronic lung disease who are suffering from air hunger, because morphine tells the respiratory center in the brain it doesn’t need air. That increases comfort by reducing the respiratory effort, which then reduces anxiety, because the patient doesn’t have a sensation of suffocation. (Who wouldn’t relief from THAT???). Morphine in this case is not given to treat pain, but relieve another symptom.  Still — not given to commit murder.

Our angry man’s mother died of lung cancer. I can imagine that she fought hard to keep her discomfort from her son, and that she experienced relief when she was no longer struggling to breathe. I hope her last hours were peaceful, knowing there was support for both of them during her last days and beyond. (She does not to appear to have been my agency’s patient).

Hospice controlled my mother's pain enough that she could enjoy apple pie for her birthday...9 days before she passed.
Hospice controlled my mother’s pain enough that she could enjoy apple pie for her birthday…9 days before she passed.

Hospice is available to patients at the time a doctor could say  “With the progression of your disease, I’d be surprised to see you in six months”. It’s sad that most people don’t engage with hospice until the very last days or hours of life, as they encounter chaos and confusion during the rapid end of life changes their loved one is experiencing. A resource that can provide education, information and comfort in three domains – physical, emotional and spiritual, is too often lost.

Not all people die on hospice. Sometimes by improving symptom management, patients regain strength and overcome their “episode”. We’re ok with that. For those that don’t, and for their loved ones, Hospice will hold your hand, offer you comfort, and give you a safe place to grieve when all is said and done.

Hospice doesn’t kill people. It is a service courageous enough to address the dark issues that can plague the end of life, hold you up through the pain of disease, and later the pain of loss. In the end, it strives to give families and patients confidence, support and rest while attending to the cares of one who’s life is slipping away.

After a long hiatus…

It’s been 18 months almost to the day since my last post.  In that time, I relocated back to Oregon, married a man who is daily my Heart’s Delight and has made me, officially, a “Pastor’s Wife”.  This spring, I completed my Master’s Degree in Aging Services and Management from USC.  I’ve changed jobs once, and currently find myself walking the sacred and powerful path of hospice care, (which in general is vastly misunderstood).  I also serve as Parish Nurse for Peace Memorial Evangelical Presbyterian Church (and yeah, there is a story there, too!)

With graduate school behind me and new initials added to my name, it is time to get back to the real work which God nudged me to do.  My passionate calling is to smooth the journey for families figuring out how to assist aging generations in ways that strengthen and empower all parties – from the adolescent “3rd gen”, the “Middle Gen” and the Elders.

For all the questions that I have had, I now have new resources and answers, from preventative care strategies while aging, to reinforcing the critical need for effective Co-Generational Care and primarily, making plans for the days that will come when each of us will discover there are no more interventions to keep these bodies going. Over the next weeks, I will break these topics down into manageable posts, with the intent of tying them all together into the soon-to-be-sent-to-publisher book “The Art of Parent Care: Journeys with the Aging Family”.

We stand at the edge of an ocean – facing our parents’ aging years, and looking to the horizon which harbors our own.  How we teach our children now will impact how we are cared for when such care is needed.  The strategies, resources and foundations for communication and planning are already overdue.  I hope you will come alongside me in the journey – to rethink how we care for ourselves and each other in our most glorious Elder years.

If you have a need for family care coaching, please feel free to reach out.  My strength is in helping people identify the obstacles to their ease of care coordination and help find creative solutions! If you have a need for a care advocate for a parent who lives away from you, I can assist you in finding someone who can come alongside them, where ever they are.

With love and hope for all our bright and safe futures,

Katherine Silver, RN, BSN, CCM, MASM

Some thoughts on Advance Directives

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Every emancipated adult should have an Advance Directive. Once a child is emancipated, parents can no longer make medical decisions for them by default, should the offspring become incapacitated. Often we limit our conversations about Advance Directives to Elders, thinking they are more likely to become cognitively impaired. However, the age cohort often overlooked are young adults between 18 and 30 who are at risk for devastating traumatic brain injury (TBI) — due to motor vehicle accidents, recreational accidents or substance abuse.
Preceding the Patient Self Determination Act (PSDA) was the tragic, 1970’s case of Karen Ann Quinlan, which attracted sensational media attention and brought the controversy between family desires, medical opinion, ethics and law into the cultural conversation. I have no doubt that her case, and those that followed, helped propel the PSDA into being. Shortly after the Quinlans lost their appeal to have their daughter’s life sustaining treatments revoked, I found myself working in a “convalescent hospital”. There I had the unforgettable experience of caring for a high school classmate, not even 21 at the time. Shortly after graduation, while walking on a lonely road late at night, he was struck by a car. Suffering spinal cord and traumatic brain injuries, his quality of life was undeniably impaired.
I don’t think revoking heroic measures was an option in California in 1978, and this encounter, so close to heated debates about terminating life-support, left an impression on me. In recent years, I have had conversations with young adults that include thoughts about accidents and injury. They are quite clear “I don’t want to be kept alive if there is nothing left of ‘me’”. Youth are as important to include in the conversation about Advance Directives as are their Elder relatives, and for similar reasons. Loved ones can’t act on your behalf if they don’t know what you want.
We don’t like to talk about death and dying, about end of life mystery or transition. Life seems brighter if we ignore the shadow side and go merrily on our way. For us, it might be. If we’ve become incapable of making decisions for ourselves, chances are we won’t care much. Some won’t talk about death because they don’t want to upset their families or those that they love by “making them think about it”. The irony is that by trying to protect those we love by ignoring this reality, we force them into making decisions about us which they are ill-prepared to make. Some people don’t understand what Advance Directives are or how they can help.
I have watched this process when families are unprepared. It is often grueling and painful. The second-guessing about what “mom wants”, the contention between those mature enough to let go and those clinging to hope or fearing death can devastate a family that needs to support each other and prepare to grieve.
Most departments in my hospital, which serves a large retirement age population, assertively broach the topic of Advance Directives, and in my specialty clinic new patients are educated and offered a copy of our state’s Advance Directives workbook.
AD pamphlets read very similar from state to state. They are dry and medically oriented. Recently, I was introduced to a stellar revision of the standard Advance Directives, entitled “5 Wishes”. It reads very similar to the more bland AD pamphlet with three notable exceptions – “How comfortable I want to be”, “How I want people to treat me”, and “What I want my loved ones to know”. Those tools could soften and gently personalize the conversation about end-of-life decision-making.
Those three wishes give the powerless – those who can only stand by while someone they love is dying – specific tasks to perform to enhance the quality of the last days and hours and instill a sacred dignity to the art of dying. I wish that they had been a part of my own mother’s AD process. At 88, however, she was not very open to talking about what she wanted (besides that she didn’t want her children to hurt). Baby Boomer Elders may be more forthcoming about what would make their final passage sacred and meaningful, (or even fun and joyful!) My Depression Era mother was not. We had to guess. How much gentler it would have been if we had known what was important to her, to enhance her comfort.
There are few reasons for any emancipated adult to not have the discussion about end of life wishes — from medical care choices to what music you want playing when you are unconscious or passing — and legally initiate appropriate Advance Directives. Perhaps more people would engage in them if they knew that:
1. They can be revoked at any time by the issuer.
2. They only go into effect if the issuer cannot make medical decisions for themselves due to inability to communicate their wishes.
3. It alters the responsibility for making life-to-death medical decisions to the issuer, having had a discussion about their values and desires with their appointed representative. It is an act of personal empowerment — one is less “victim” to the end-of-life passage, and more a participant.

4. The process of reviewing the choices one must make when completing their advance directives opens the door to conversation valuable in any relationship, “what to do when I am dying”.
5. It is kind for the family to have decisions articulated and communicated in advance.
Inadequate understanding is a barrier to completing Advance Directives. The concept that it is somehow a “death sentence” or supported by “death panels” can link Advance Directives to one of the most emotionally charged phrases to come from the detractors of the Affordable Care Act, though the PSDA precedes the ACA by more than a decade. For those wishing to engage in all means of life-sustaining treatment, it is still important to appoint a representative to direct medical care and long term care choices from home health, nursing home to hospice. The idea that Advance Directives are only for those wishing to halt life-sustaining treatment is a common misunderstanding of it’s purpose.
There is a risk of exploitation and that needs to be guarded against, and is, by the stipulation that the appointed representative cannot be a caregiver or employee of a facility where the issuer receives care. It is possible to appoint the wrong person for the wrong reasons. A representative should be someone the issuer is confident will follow their wishes, who has knowledge of the care they have been receiving and their medical history, as well as their values and desires.
Life is short, the time is now to think about what you would want and who would be your voice if you couldn’t make your desires known. Have the conversation with your children and your folks.

For more information on “5 Wishes” visit http://www.agingwithdignity.org/five-wishes.php

Full list: Is there a primary stroke center near you? – USATODAY.com

Full list: Is there a primary stroke center near you? – USATODAY.com.

I hadn’t heard of Stroke Care Units until very recently. The data on recovery, reducing long term disability and reduced recurrence of stroke is significant for people who receive care from an SCU rather than an ICU/CCU or medical/surgical floor. The exact mechanism is not clearly identified, but whatever the reason, the outcomes are better and the stays tend to be shorter.

Is there the Stroke Care Unit near you???