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.

 

 

Church Congregations and Aging Adults

Part 1 of 4:  The Invisible Aging Person

The church needs renewed consideration of the Eldest members. People too often become invisible once they are no longer able to get out, when they are too fragile to “contribute” to the growth or life of the church. I have witnessed a sad trend played out in congregations I have participated in and the work I have done with Elders both in the community and in Assisted Living Facilities.  Once a person becomes absent – through relocation to an institution, becoming home bound due to infirmity or because the church is not set up to accommodate special needs –  they become invisible.  Deacons may send a card on special days.  A church visitor may pop in for an hour once a month, but the Older member becomes exiled, wandering alone in the spiritual desert of their last years.

I belong to a small, aging congregation in a rural community. There has been discussion of late that if we don’t bring in younger families, the church may not have sufficient members to keep the doors open.  That’s a reality shared by many small churches, and the focus of revitalization strategies taught by leaders like Thom Rainer and Ken Priddy. It makes sense: We must find ways to invite people to come in – and stay – to keep the church alive.  The Great Commission calls us to make disciples and certainly we can’t do that if the doors are closed.

Historically, churches grew from the younger demographic upwards, not unlike societal institutions. Historically speaking (pre Baby Boomer cohort) the majority of our population were in their middle years, with a large base of youth and children at the base of the population pyramid, and retirees and Elders comprising the narrowing tip. Nursery care, preschool programs and Vacation Bible School drew families by attracting  children and their parents. That was an effective paradigm for growth as the Boomer Generation was created, well into the 90’s as they then had their own children. (This format worked for me. I was “unchurched” until a program drew my children in and then I followed. Nothing softens the heart of a parent more thoroughly than seeing their children glowing with joy and a sense of purpose; the innocence of “letting their light shine”).

The times, though, they are a’changing. The Boomers will be launching the last of their babies shortly.  The Generations X and Y and the Millennials will not likely reproduce in the numbers that the Boomers and their parents did. Church nurseries, I predict, will not host the numbers that were common 30 years ago.

I will close this installment with a story I was privy to. I began reflecting on this situation as our church discusses revitalization efforts and how we become more welcoming. It occurred to me to think through “to whom do we need to be welcoming?”  We need to not overlook our aged church members, who once disconnected from their Spiritual fellowship, can suffer in isolation.

Mae was a resident at an assisted living where I was employed as a nurse. She was in her early 80’s, and suffered short term memory loss.  Mae had been moved to the assisted living apartment because she could no longer safely care for herself at home, and her family thought the socialization of the community living facility would benefit her. Mae had a church visitor – once a month a young gentleman would “round” on about a half dozen residents who had once been church members. As far as I could see, that was her only church contact.  In chatting with her eldest child one day, I heard an intense anger towards the church and it’s members, as he felt that for the 40 years Mae had participated in all aspects of the life of her church, no one “saw” her anymore.  She had become invisible to the church family, save the dedicated volunteer who provided ministry in the local facilities for “former” church members. Mae was starving for conversation, for regular prayer, Bible Study, a friend, and the ritual of church services.  In the assisted living, she was spiritually starving. Her children also felt abandoned by the church family they had grown up with, and thought would continue to be a resource for them and their mother as her needs changed.

Our seniors become “the forgotten” and often decline visits because “they don’t want to be a bother”.  I’ll let you in on a secret.  They DO want to be a bother.  They want to be seen, noticed, cared about, included, even in their changing states.  They thirst for authentic connection, visits, prayer, hymns, gossip.

Questions to consider:

How many of your aged church members seem to have become invisible once they no longer attended services regularly? 

Is anyone designated in your church to notice an absence and follow up with a call to the parishioner or their family? 

Who in your church family is tasked with making sure members, unable to get out often, are visited frequently enough to nurture still growing relationships, rituals and spiritual succor?

* * * * * * *

I challenge church leaders to take an inventory of the people that have faded from view in the last year.

Where have they gone?

Who has reached out to them?

What training is offered for your volunteer visitors, if you have such a body, so that they are equipped to have meaningful visits to those who are home bound?

Does your church regularly engage with the families of their aging membership?

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.

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.

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???

Grief happens

"Weeping may endure for a night, but joy cometh in the morning."  Psalm 30:5
“Weeping may endure for a night, but joy cometh in the morning.” Psalm 30:5

ORIGIN Middle English: from Old French grief, from grever ‘to burden’ (see grieve) .

I like that. To burden, specifically, to burden with sorrow.
It’s been a sad week. My heart goes out to the community of Truckee, California; to friends in Oregon who have endured losses, both expected and age appropriate and not. My work has brought me in touch with many people recently that have walked the Grief walk through death, foreclosure, the experience of family separation. The reality is, we will all encounter death and other losses, we will have to walk with Grief, for however long or brief a time is required for us to allow it to grow us and renew us.

Grief? Grows and renews? Oh yes, indeed. When we let it.

Like a fertile garden that must die back in the winter to make room for new growth in the spring, grief prunes away that which is unnecessary and brings us down to that which really matters and of which we can be certain — Today.

We tend to fight grief off. We numb our selves — “gotta get back to work”, “gotta get on with life”, “here, let me pour you a strong one”.  We get frustrated with people who don’t “move on”.  We want folks to grieve their losses on our timeline, because, frankly, other people’s grief makes us uncomfortable.

Grief and I are quite good acquaintances.  As a young child, I had two classmates lose multiple siblings in car accidents (all teenagers).  As a teen myself, I encountered 10 losses in 18 months around my sophomore year, including my own father and a man as dear to me.  There were car accidents, gunshot wounds, hit and runs.  Cousin, friends, and parent.  I grew through my childhood believing that when you are a teenager, a lot of people die.

Raised by a Depression-era mother who’d lost her own mother at 14 and then withdrew and didn’t talk to anyone for almost a year, I was encouraged to “pull myself up by my bootstraps”, “put on a happy face”, “don’t wear my heart on my sleeve” — colloquialisms all for “get over it”.  I’m sure my sadness brought up her youthful loss and neither one of us had any kind of road map for the sadness, or how grief works.  Without guidance, I had no model for how to pull myself back together.

(Beloved Swiss physician, hospice proponent and author Elisabeth Kubler-Ross had not yet published her outstanding guidebook on Grief and Loss).  We were adrift in a sea of feelings, and really, it took me decades to benefit from Grief.

Grief doesn’t go away because we will it to, anymore than those we’ve lost will come back to us.  Grief goes away when we are done.  Grief isn’t a one-size-fits-all experience.  Different situations bring it about differently.  As our parents age, especially getting into their 8th or 9th decade, we can predict our time with them is limited.  There is both a savoring of the days we get together, and often an anticipatory grieving, as we imagine what life will be like without them.  This is also often true of those who’s loved ones suffer a chronic, exacerbating, terminal illness.  A lot of the grieving occurs as the family prepares for the loss.

The difference in my grief experience between the unexpected and untimely death of my father and the slow aging and peaceful, expected, hospice-supported passing of my mother have no comparison*.  I was so at peace when my mother took her last breath, I had a chance to say my goodbyes, make my amends, and there was no sense of regret.  I miss her — to be sure —  and certain milestones make me sad she isn’t here to celebrate with us.  But the pain I feel around losing my dad at 16 still flares up with sharp edges and an enduring sense of loss — 37 years later.

*Hospice supported my mother’s emotional and spiritual healing process preceding her death, and kept her very comfortable near the end.  They supported the family by asking the right questions to get us talking, clarify values, make plans, and deal with the “business” of death.  Hospice care is generally offered to anyone with a life expectancy of less than 6 months, for whom medical care will not be accessed to prolong life.  In my humble opinion, everyone facing an imminent loss should have a hospice team at their disposal.

Here’s what I’ve learned about grief, and what I want to share with you, especially my friends in this very tender week:

There are predictable stages of the process.  They are not sequential, you may return to one over again, months or years later.  Denial (this isn’t happening).  Bargaining (“Wait God!  If I…. then will you take this cup from me?”) Anger (THIS ISN’T GOING TO HAPPEN!) Depression (which is quieter and people tend to withdraw and lick their emotional wounds)  Acceptance (the time when you realize it’s OK to be sad, and happy.  To love someone and miss them, and look around your own life, take stock, and be grateful again, realizing you are not being disloyal to their memory by getting up and getting on.)  Any state that begins to interfere with activities or daily living, or sadness that brings on suicidal thoughts needs to be addressed by a team who can help you negotiate this passage.

Different losses require different processes.  A parent losing a child is not going to incorporate the pain and heal the same way an adult child saying goodbye to an octogenarian parent will, nor should they.  The first loss in a circle of friends is not going to resolve easily, because this experience is so new and you don’t know how to feel, or how long you’ll have to feel.

Don’t replace sadness with anger.  Allow sadness.  Allow time.  Allow memories and sharing and stories.  Sadness will burden you, but not forever.  Trying to dodge it by numbing it with excessive activity or chemicals or television won’t make it go away.  Sadness will have it’s day, will leave it’s mark, and like metal tempered in the fire, will make you strong in ways you never knew you were weak, will reveal love from directions you’d never noticed it coming before.

I send love to those I know need it this morning, and to those who know this walk painfully and intimately.  Death and loss are part of our human experience.  Allow it to be what it is, seek love from those around you, be tender with yourself, protect those walking this walk with you.

With loving kindness this morning,

Katherine

Have distanced from your Elders? Why do you think that happened?

I was listening to Brene Brown on Oprah’s Super Soul Sunday recently.  She made a statement that struck me to the core. Initially, I thought of it in terms of my own life parenting adult children, working on building a new relationship. Musing on it for a couple days, though, I realized that this contributes to why — as a culture of middle aged adults — we distance from our family Elders. Brene stated “When we lose our capacity for vulnerability, joy becomes foreboding.”

“What makes us vulnerable?” Risking the pain of losing a parent you love and adore and know really well is being REALLY vulnerable to loss, pain, self doubt and regret. As our parents and other Elders age, we know that we will, ultimately, have to say goodbye. We will experience loss (statistically speaking). To fully engage with our parents as they age, as their abilities change or decline, as they need us more as advocates and companions and not just as children, is to open ourselves up to the pain of letting them go after becoming very engaged and attached. That is something, perhaps, worth defending your heart against (or not, more on that to follow).

The second part of that quote is that “Joy becomes foreboding”. When we are afraid of being vulnerable and truly open to the moment without fear of what may or may not happen down the road, even happy moments generate tension. When I had a great day with my mother, I often felt pre-emptive grief, realizing that these were special days and numbered. How much better it would have been for both of us if I could have just experienced the joy without the foreboding. Would I have shown up for her better? More often? It is something I contemplate in other relationships now.

There are many reasons why people distance from aging relatives and friends.  Their changing or dissolving abilities challenge us.  It isn’t easy to be with some people — communication is difficult due to physical changes (loss of hearing for example); cognitive changes (from mild to advanced dementia, depression and ensuing negativity), to powerlessness which makes people feel hopeless for any positive change in their situations.  Hopelessness is hard to cope with in someone we love, someone we want to help out.  Too often it seems that our Elders don’t want help, they just want to complain.  This may actually be more a symptom of depression (which is a common and treatable disease among Elders), than an overall personality change.

We may distance because WE feel powerless and hopeless.  “There’s nothing I can do, anyway.”  (A self-fulfilling prophesy if ever there was one).  “They don’t want my help” (No, but they might want your attention, to know that they aren’t alone in this last walk around the block).  “They live too far away” (how can you mitigate that through phone calls or setting them up with social media?).

This is what I have learned about distancing and avoidance.  Our parents will likely precede us in death (mine already have).  In the case of my father’s death, he was young and it was unexpected.  There was no planning for, preparing for, working out old issues.  It just happened, and there we all were, carrying around the things left unsaid and undone.  That is the stuff regrets are made of.  Regret, like disappointment, is an emotional experience I go out of my way to avoid.

My mother’s last years were quite different.  Yes, I often woke up in the middle of the night with a start and wondered if she had just fallen.  Yes, we lived from crisis to crisis because there was a lack of communication and planning for quite predictable events.  Yes, some days I thought a week-long rest in the local behavioral health inpatient unit would be just the ticket for me (thankfully I never had to use that extreme back up plan).  In the long run though, I have powerful memories of my mother.  Her grandchildren, who engaged with her often showering her with love and attention and likewise being recipients of the same — have great stories to share.  In her last years, my mother imparted her values, her humor, her resiliency on that next generation.  That didn’t happen all at once but over time, over ice cream and Scrabble boards, card games and coloring books, Sunday dinners held at her house even if the best she did was Shake and Bake chicken strips, mashies and salad.  We watched together as her abilities diminished.

My mother’s passing came as a completion of several years of work in which we loved on her, were devoted to her comfort and quality experiences.  With our help, she remained in her home until just shy of her 88th birthday, moving to an adult foster home the week before.  I sat with her daily.  We knew her favorite music, and it played in the background.  We knew the stories she liked to hear re-told, and we shared them.  We placed phone calls to people she needed to hear loved her, one more time.  Our pastor came and sorted out some last issues around shame.  When my mother passed, it was quiet, gentle, complete.  I have never looked back and thought “I wish I had only….”, because we chose to be present with her.  Choices were made that were temporary sacrifices for a lifetime of peace (mine and my children’s).  When we think of my mom and the void her absence sometimes creates for us, it is with a sense of love and acceptance.  There is no guilt.  No regret.  We allowed ourselves to be vulnerable to the pain, and in the process, allowed ourselves to experience the love and  joy that spending time with her gave.

 

I challenge you to look at current patterns with  Elder family members. What stands in the way of regular communication: Geographical distance? Technological deficits? Unresolved relationship issues? The belief that parents are the responsibility of another besides you? Time constraints?  Upon further examination, are any of those things possibly excuses to help you maintain a safe emotional distance from the reality of aging or end of life issues, for yourself or your parents? Feel free to comment below, and as always, feel free to share this blog with others walking this middle of life walk.