Mission Outreach to Aging Adults & Families

IMG_0744.JPGPart 2/4 in a series about how churches develop mission outreach to aging family and elder church members

As Jesus’ hands in the world, guided by the Holy Spirit to demonstrate His love through our actions, church mission must include seeking out those who are isolated due to age or health and support and encourage their families.

gusJohn 4:35 “Do you not say, ‘There are yet four months, then comes the harvest’? Look, I tell you, lift up your eyes, and see that the fields are white for harvest.”

Churches need to recognize the need to reach out to children of aging parents in a multidimensional ways. What services they can be offered to adult children and spouses caring for loved ones? Perhaps Parentcare support groups, Bible study with respite care, regular adult day care, and at the very least, some form of regular and frequent home visitation for the older church member, to provide companionship and spiritual care. If we come to see Elder care as a mission and ministry, we will deliberately and actively seeking out isolated older members and the people who care for them. In isolation, our Elders suffer. We (the focus of the church as a whole) are neglecting the spiritual care of older adults and their adult children.

In preceding years, churches grew from the younger ages on up. Young families were embraced, children grew up learning about Saving Grace, play groups formed, families met in fellowship and worship and community was built. 25 years ago, that was what drew me in the doors. As the mother of two preschool aged children, I became hungry for a foundational faith we could grow as a family. I was initially attracted to the church because mothers in my La Leche League group were members. I found a wellspring of children’s activities, and became immersed in the church/child/parenting culture. It was vibrant and fun and alive, full of music and song.

My current church home is a rapidly aging congregation who span 50-101 years across a few dozen members. Most no longer participate in outreach activities. There is little engagement between this church body and adult children, our youth are a small handful of great-grandchildren of longtime members.

Previously, I shared the story of Mae and the encounter I had with her son. We have 4 such “Maes” in the last year. Physical decline, cognitive impairment or some other combination kept them from worship and activities. Their adult children don’t engage with the church much, perhaps because no one is left for them to connect with, perhaps because they feel overwhelmed trying to get Mom to church and, perhaps, because no one is reaching out to them. This would explain Mae’s son’s anger toward the congregation he grew up in.

Allow me to unpack that just a bit:

First, these activities need to fall to someone other than the Pastor. Pastors already have a full-time calling, and what I propose requires a called and gently trained team for this mission outreach, not unlike Stephen’s Ministries of recent years.

Small group outreach: Eldercare Advocates can be trained to run small groups for spouses or adult children caring for parents. A ministry opportunity exists people come together to share stories, build support networks, learn about local resources from each other and receive spiritual care. By understanding the needs of these families and their challenges in co-generational care, an environment can be developed to support study and worship participation for all generations.

Respite care: Developing a respite care program -perhaps a lunchtime activity – on a regular basis allows time for self care for other family members.  Through regular, scheduled activities trusting relationships are built.

Home visitation More than monthly prayer and sacraments, we can bring time, companionship and respite to the home. Loneliness experienced by homebound or institutionalized Elders causes suffering, which none but family and care providers hear. Home visitation, especially when coordinated with the family offer respite and time for Spiritual care as well.

My calling is to help churches and families find creative ways to meet the needs of a rapidly growing population of Elders. They way we have cared for the aged and fragile in the past will no longer be sustainable. We need a new model that begins in the family, in the community and addresses not only the physical, but the spiritual needs of Elders and their families.  Time is of the essence.

Allowing Natural Death

5 and a half years ago, I lost my mother to a very normal death.  She was 88.  She had been a 1/2 pack a day smoker for 5 decades. One chronic condition – a low platelet count – had dogged her for 40 years, with no ill effects until the last couple years of her life, when periodically she would become “a quart low” and we’d traipse to the ER for a transfusion and diuresis which would make everything better for several months.  In going through old emails this morning, I found a letter I wrote to friends of mine during my mother’s last week as I struggled with bearing witness to her end of life transition.  It is raw, but I think in that, shares well what normal end of life decline is like for both a loving daughter and her mother.  I share it today, after spending some time listening to and reading from David Kessler’s works – knowing that we have little that prepares us for what a normal, uncomplicated end of life process looks like.  In a webinar of his, he shares the story of a person telling of the death of a family member, how horrible it was for them.  Kessler comments that it was actually quite a normal process they witnessed.  I share with you today what “normal” can look like, and the confusion and uncertainty it brings us.

Death is not easy when we have access to technology and drugs that can indefinitely prolong arrival at it’s door.  In the end, however, it is where we will all arrive.

Thanks, dear readers, for bearing with these musings as we approach the autumn of the year.  May there be peace or comfort in my words – now or later, whenever you need them.

Katherine

     IMG_4068.JPGGood morning, my dear friends.  I’m writing to you because I’ve been holding a “group conversation” in my head this morning, and realized I really could open it up to you all for us to muck around in a bit, grow and think and philosophize, if you have the energy.  It is about the process I am working through with my mom’s end of life.  That being said, if you aren’t up to the topic, it’s ok to stop reading here.  (you have been warned).   I find that I need my “sisters” for a reality check and I needed to journal and talk and do that better when I can imagine you responding and offering the wisdom you have acquired in your collective years.  We will  all have to walk through this place, let us see what we can glean from each other for tools to help us on our way.

     I, who always thought myself a midwife “one who ushers souls both in and out” is finding I am unexpectedly ill-prepared for the changes happening with my mother.  I realized this morning that I don’t have a vocabulary for it, this process of un-change that is occurring.  Indeed, it seems where I once thought death the “flip side” of birth, I am now thinking it is the “un” side.  Having framed most of my adult experiences and passages in terms of labor, delivery, birth and postpartum, I am at a loss, now that I cannot do so.  This is so much bigger and more fragmented than birthing, which now seems so predictable and linear.  We have documentable steps in the birth process, though few women follow the text book design, we know generally what markers to look for to alert us to an acceleration of the process or dystocia.  In the end, we know there will be an out-come, an arrival. In 90+% of those births, there will be great joy and celebration, in others, guilt and sadness.

     But what of death?  What of the process of dying?  It is decidedly not linear, except in that we know it is our ultimate destination, having been born.  I am struggling this morning with language and process.  Death has no “out-come”; but no “in-go” either, except in the turning inward that those around the dying one revert to for solace and silence.  I realized this morning that all my encounters with death intimate to me have been unexpected and dramatic (traumatic).  The onset of death was sudden with no time to watch, to bear witness to the slow defragmentation that dying seems to be.  I have no predictors, no milestones upon this journey that let me know where we are on the map — closer to town, lost in the woods, stuck in mire?  Perhaps it doesn’t matter where we are, we are there anyway, and we know it.  

     I feel ill-equipped to help my family (children, spouse, siblings, aunts and uncles) for lack of knowing.  I know that we (my mother and I/us) are progressing away from something — her health and her vitality, her physical ability, her quick and witty responses to humor or her acerbic response to the news or politics.  The fire of her argumentative nature is dowsed, her independence and will to decide important things for herself, put away in a chest probably not to be fully opened again.  (She does draw this mantle out periodically, when it seems least likely she will, and then I stand with my mouth agape and wondering how I erred as she, with energetic resolve, lets the social worker or caregiver know that I have made the wrong assumption or decision about her care).  Lack of predictable response on my mother’s part is a large measure of what keeps me off-balance in this precarious walk.  She wants me to make important decisions about her treatment (though on hospice in all other respects, we are still making the final — and it will no doubt be final — decision about whether to treat her mortally low platelets anymore, and she asks me to make that decision for her, stating it is too big for her to make).  I don’t want to be the “parent” in this conversation….I want to be the daughter passively along for the ride, not the driver deciding which road we take through these uncharted lands.

     I have no language of death or the slow defragmentation that I am seeing now, where the loss of strength and increase of pain have no etiology, no treatment, no diagnosis — only the persistent question “if we do invasive diagnostic procedures, and we find something (MS, ovarian cancer, gallstones, kidney stones, etc), what would we do with that information besides continue to keep your mother comfortable?”  My mother is a frail, 88 (on Thursday) year old woman who smoked for 5 decades and has had uncontrolled (though mildly so) diabetes for who knows how long, and now possibly some undiagnosed neuromuscular syndrome as well…indeed what would we do? My reliance on the physicians to guide us through this has proven unsteady.  Because we cannot know the hour, estimate the process of dying as we would the process of birthing, we cannot anticipate, no one will tell us “your mother, as you can see, is dying, and we cannot with good conscience, prolong her process (especially since all of her advance directives direct us not to)”.  I guess I know that.   

     How, then,  do I answer her question “why can’t I walk?”  because “I don’t know, Mom” has lost it’s ring and “because your body is winding down and preparing to cease” is too brutally honest.  Or “why do I have such pain?”  “We don’t know, Mom…”  I am filled with unknowing, and understand the reluctance of MD’s to put her through testing trying to find an answer when the outcome seems unlikely to change, and yet we fill her with morphine (because the vicodin derivatives are now ineffective against her lower right quadrant pain), without knowing WHY she hurts in the first place (we have done CT and xrays to no avail).  I have watched her strength decline in the last 6 weeks from able to walk with her wheeled walker with some confidence to unable to lift her foot to cross her legs while reclining in her chair, she is no longer weight bearing, and cannot move her feet to straighten herself when we transfer her from bed to wheelchair. How do we process losses, failings of systems, without knowing WHY?  I am stuck here.

     When a birth process fails, we work diligently to uncover a least a fair hypothesis of “why”.  When an aged body fails, is the why we need to be satisfied with simply the answer “age”?  Is this what it looks like when someone “winds down”, this slow defragmentation of the body and it’s systems, one slow failure at a time until there isn’t enough of the whole left working to keep the system running?  My spaces between breathing in and breathing out seem to be getting longer, as I hold my breath wondering if today is the day she lets go, or I panic wondering if today is the first day of the next 6 years of this pattern, fearing that she may plateau where she is – fragile, angry, unable to care for herself, demanding and pleading that we care for her our selves instead of the dedicated caregivers we have found for her.  And then the guilt that should be optional but somehow isn’t, washes over me for fearing such a thing (though were it me stuck in my body thus, it would be a fearful thing indeed — I’d prefer not to live too long like that). She is my mother after all, how can I anticipate with some relief her passing?  Bad daughter? Good nurse?  Compassionate human?

     My goals in my work are to promote dignity and comfort in aging and dying, and yet my own mother seems far less interested in dignity and comfort than in demanding we find a way to make her well.  Are we to be forever stuck in the emotional stage of denial?  The hospice chaplain is visiting her today, it is my fondest desire that he help her find a way to calm herself and accept the un-doing of a body once so full of spitfire and hutzpah.

     There is no one to blame for the decline, she is 88 and never had aspirations (that she shared) to live an extraordinarily long life just to say she kept breathing that long.  And, 88 is not a short life, and hers as full as it was of love and children and work and adventures…I mean really, I’m not sure I’d have it in me to pack up my 9 year old and move to Taiwan for 2 years (OK, I no longer have a 9 year old, mute point).  She has told her stories and we have memorized them; we have shared love back and forth and around and under, with no regrets.  Now, we just wait, expectantly, frustrated as the body she relied on slowly grinds to a stop while she still inhabits it?  

     Where do we go from here?  How to help one’s mother cross over, without feeling an accomplice to Death?  In theory I always thought it would be easy to balance this, to make it right.  In practice, I am lost at sea……(though the seas are calm at the moment, I am not flailing, but contemplating).  

Your loving friend and sister on this twist in the journey,

Katherine

 

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.

Blessed Christmas, One and All!

The Day has arrived.  Christmas!!!!

Christmas is a time for family — beginning with the story of a very Holy Family (so now you know where I stand on that ;-).  The story has been modified in interpretation over time, for who’s agenda we’ll never really know.  But today, sitting in the stillness of my own home and reflecting on what I know of birth, co-generational families and culture, I offer this version, taught to me 20 years ago by a Presbyterian Minister who’d lived several years in the Middle East.

Joseph was neither a procrastinator nor a goof.  He had family in Bethlehem, and he needed to return there with his pregnant wife, so they could be counted in the census.  It is unlikely that they left so close to her time that Mary was in labor while they traveled, and likely that they stayed in Bethlehem with family for some time.  It is probable that many branches of the family gathered together from distant parts, all there to “be counted”, filling to overflowing the modest home — built as was the custom with the “barn” connected to the inside by an adjacent wall.  The word for Guest Room is, I understand, the same as for “Inn”.  Perhaps, in this version, the guest space was previously occupied, and Mary and Joseph were given to rest in the common area, near the animals and the outdoors, the fire, the food and well – things comforting for a woman heavy with child.

Instead of the cold and lonely version —  colored by language and sensationalism and the idea that an entire culture would turn away a young laboring woman — let’s entertain for a moment a different first family gathering, the one we have actually come to emulate as we greet our own family from far and near during this festive week.  Imagine a rustic house overflowing with aunties and uncles, cousins and babies, everyone boisterous and contributing what they had to the meals, to the work, to entertaining themselves while the interminable census was conducted.  Family slumbering in all corners of house and stable, or outside in tents, making good use of this reunion to catch up with each other.  A celebratory air of family gathering together and the anticipation of a much prophesied Birth.  Men seated around table or fire, talking politics in hushed voices and pondering the Light in the sky and what it could portend.  Let us imagine the Elder Women in the family watching Mary with curiosity, knowing her time was drawing near by the way she moved, by the tired resignation in her countenance.  Wise women would recognize her early labor and begin to shush children and send them out with older siblings and cousins, away from the house.  Her back would be rubbed, her efforts encouraged and eased by the Aunties and Grannies,  Midwives in the family.  Those who knew would be waiting with anticipation the Birth of the King, foretold by prophets of old, and by those in Mary and Joseph’s own families.  This was not a birth to be taken lightly, not when Joseph’s entire family was gathering in Bethlehem to “be counted”.  It was a celebrated event, in the family and in the countryside and in Heaven, where choirs of Angels sang of the wonder.

I don’t think the vision of Jesus’ birth as much anticipated and welcomed, of Mary’s labor attended by women who loved and honored her as a sister, of the family having what they needed — clothing, food and shelter (and a warm, fresh manger to lay the baby in), diminishes the Miracle at all.  In fact, it brings more Love, more Light, more Peace, more consolation.  A King was born from very humble beginnings, but was much loved already — by angels and shepherds abiding, and by family greeting Him in celebration.

And so, maybe, this event didn’t happen around the Winter Solstice.  Perhaps as many believe, it happened in the summer and was later co-opted by the church to coincide with the return of the Light in the dark of midwinter (but hello! if you live in the Southern Hemisphere, it IS celebrated in the height of the summer! We are such snobs here north of the equator).

~   ~   ~   ~   ~

This phenomenon of days shortened and lengthened made me consider how we refer to life passing.  As in the Christmas story, we shift words and meanings to somehow minimize our love and connection, our delight in and mutual support within family and society.  We refer to our days as growing shorter at the end, but really, they don’t.  Whether we have 16 hours of daylight or dark, our days remain the same — 24 hours in a day, 7 days to a week.  Every day, we have the opportunity to embrace each minute and hour to the fullest.  Our actual days do not grow short.  Our patience might.  Our abilities may change and wane, our family and social circles ebb and flow, but our days — our wonderful, magical, glorious days — continue to have 24 hours, 1440 minutes, 86400 seconds (if you check my math and find me in error feel free to leave a comment).

What grows short is our ability to take each of those days for granted.  How many seconds have slipped through our fingers — seconds when a kind word or a smile would have changed an encounter with someone?  How many minutes spent thinking about the ways we could show love and attention, but didn’t?  How many hours spent in futile endeavors that didn’t add value to our — or anyone else’s — life? As we embrace this Day, and the morrow, as family arrives or leaves or calls or writes, as children laugh or get fussy; Elders participate or rest, let us remember that each moment is an opportunity to add value, ease a burden, encourage with a word or smile, laugh out loud together.  We have infinite opportunities to “Be the Love in the World” that we celebrate this day.

It is only in looking backwards that we can measure the length of a life or the impact it had on those it touched.  Looking forward, we only have this moment to share the Love, Joy, Peace, Hope and humble service that this Holy Day represents.  My wish for all of you, dear friends and family (and much appreciated readers), is that the Love Light that shone on our Planet that day so many centuries ago, shines on you and your family, from the youngest to the Eldest, and fills you with Peace beyond all understanding through every trial you may encounter in the next year.  Peace to you, and Goodwill to all,  and a very, Merry Christmas.

Katherine