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.

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

The bumpy road of expectations

Expectations. We all have them. We expect the people around us to be kind, sometimes lie to us and stroke our egos. We expect the world to have some sense of fairness and folks to follow the most basic rules of conduct. We expect the opportunity to make a living, to be accepted for who we are. And, somewhere in this “youth culture” milieu, we expect to not change, not see our physical or mental abilities diminish, not have our “privileges” imposed upon.

When reality dope-slaps our expectations, disorientation and disappointment ensue, and depending on the severity of the disappointment, the process of grieving begins.

Dr. Elisabeth Kubler-Ross identified five stages of grief as related to patients and families coping with terminal illness: Anger. Denial. Bargaining. Depression. Acceptance. We don’t always follow this in order, and sometimes when we are grieving (and really, isn’t disappointment a minor stage of grief?) we revisit feelings and behaviors we have coursed through already.

This morning, I’m not talking about death and dying. I’m talking about disappointments that come from the subtle but real expectation that we aren’t going to “get old”. Our reaction time will stay the same, our vision won’t really fail, our ability to concentrate won’t become scattered. We will always be able to drive – safely.

Driving. Our steel horses that carry us away to where ever we want to go. Power at our feet and finger tips. Freedom. Our youth culture is built upon it (as is our economy).

Then, one day, that freedom is gone without warning.

A letter from DMV comes in the mail. “It has been brought to our attention that your ability to safely operate a motor vehicle has become impaired…” There is no trial. No jury to convince. No charges filed against anyone. Someone saw you weaving or slowing down abruptly and called in your license plate number and now you have to prove that you are not impaired.

Worse, you might have to admit that you are.

This is a real scenario. Of all the expectations that leave one’s sense of worth and independence shattered on the rocks of despair, losing the driver’s license and the freedom we cherish, is near the top of the list. You can lose a spouse, but still, you can drive yourself to the market, church, the widow’s group. Your health can fail, which makes driving all the more important. When vision fails, well, then, that’s not your fault and people will help – but to accept the idea that you have become addled or incompetent to do this most basic thing – drive a car safely – tears at the independence upon which we have so much pride.

Anticipate this. For your parents. For your auntie, and for yourself. Start the dialog now. “Hey mom, have you ever thought about how you’d get around, or where you’d want to live if you weren’t driving anymore?” It’s a loaded question, but it begs proactive thought. If it makes you uncomfortable, you can always start with, “I was reading this blog today, and an interesting question was posed….” I don’t mind. I’ll be your scapegoat. Know your resources. Know your parents’ thoughts about their future independence. Bette Davis is quoted as saying “aging isn’t for sissies”. I’d add “it’s no time to stick your head in the sand”.

Talk. Plan. Avoid crisis.

Happy Sunday everyone! Call your mother (or dad or auntie)!

Peace and laughter,
Katherine

“The antidote to disappointment is gratitude”.

(I’m sure someone has said this before me, but I’m saying it this morning! 😉

Aging Happens…

Aging Happens…

…and will involve our parents, ourselves, and our children. In this new millennium and with the tide of Baby Boomers surging forward, it is time to see past the cultural invisibility of Aging and engage in conversation about values, needs and positive, family inclusive solutions for Elder Care. The sentiment “Failing to plan is planning to fail” more acutely accurate when we neglect to anticipate the predictably changing needs of our parents. In “Holding Hands: Journeying with the Aging Family” you will learn:

• How the “nuclear family” model made our Elders invisible, and how to we must begin seeing them again

• The Co-Generational model: assessing each generation’s strengths and developmental tasks to help you envision an integrated network of support for all the family members in a maturing family system

• Strategies for initiating conversations between three generations to promote balance through planning

• Addressing the six core human needs (Thank you Tony Robbins!): certainty, uncertainty, significance, love, contribution, spiritual and personal growth and why we must help our Elders reconnect and stay connected with them

• Identifying resources so you know where to turn for support on a moment’s notice

• Creating “life plans” for the most common “unexpected” life events so small curves in the road don’t become critical collisions!

When uncertainty is the rule (and it becomes moreso as we age) Love is what remains at the core. Here’s to all the things that let peace and dignity blossom at such a challenging and transitional time: Validation. Respect. Empathy. Kindness. Thinking outside the box. Holding Hands: The Art of Parent Care provides an integrated approach to navigating the Journey of the Aging Family.

 

To reserve your copy of Holding Hands: The Art of Parent Care, please fill out the contact form below, and keep an eye on the blog for more exerpts of the book to be posted in the upcoming weeks!

 

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Happy Memorial Day (weekend)

Tribute to a family of participants:  The Ledford Loughead clan (my father is the baby), Oliver P. Ledford with Sea Bees on Tinian, WWII, and with support staff in Viet Nam; Eva Heineck and Katherine Heineck, USCG Spars.
Tribute to a family of participants: The Ledford Loughead clan (my father is the baby), Oliver P. Ledford with Sea Bees on Tinian, WWII, and with support staff in Viet Nam; Eva Heineck and Katherine Heineck, USCG Spars.

Holidays are a time for establishing and maintaining rituals. This last weekend in May is generally harkened as the first weekend of “summer”, play time, fun time, get-outside-in-the-sun time. We think of beaches and blankets, the smell of sunscreen and water and how there really is sand in sandwiches. The boat goes in the water, the tent gets popped up, someone gets too drunk and spoils the whole affair. Memorial Day!

Holiday rituals connect us to family gone before us. Some rituals we keep, some we let go, some adapt in collaboration with a lover or mate who brings their own with them. My father kept holidays well, though I didn’t always appreciate that. With Christmas, of course, the better kept the happier the children are, and my dad could keep Christmas very, very well! Memorial Day was harder for me as a child.  While friends would be camping or playing and enjoying the three day weekend, and he loaded us up and drove to a town I was unfamiliar with, spent time talking to people 5 decades my senior (oh how I wish I had that time back now!) and took flowers to his parents’ gravesites. I recognize now that like Christmas traditions, my father also kept Memorial Day… very well.

My father passed away 36 years ago. He’d be 99 this year (so if he’d survived the heart attack at 63, he’d still be gone by now). Memories don’t do “time” though. He is as alive for me this Memorial Sunday as he ever was, and I get to go visit him today. My 21 year old daughter will be with me to hear the stories, see the place, walk through old neighborhoods, clean the headstone, admire the cherry tree and with love and attention, place flowers and a flag. It took thinking I couldn’t go this year (and I’ve  missed 25 due to relocating far from my home town and his resting place) for me to realize how imperative it was that I go. Through all the automotive travails we have had in the last three days I thought it impractical to make the 3 hour trip “home”. I tried to console myself with setting up a small Memorial Day alter for my parents, but the thought of this man — who voluntarily served in two wars — having an empty headstone struck my heart and I realized that…. I had to go.  I had to make my love and respect for him made visible on this Memorial Day.

Through the ritual my father taught me all those uncomfortable childhood Memorial Day weekends ago, I have a cellular imperative to honor him the same way, to take my own daughter, who never knew this wonderful man, and make him real to her. My mother, whose ashes remain above ground as yet, will one day rest with him, and a more complete family reunion will take place, at least this one day a year. Hopefully, there will always be a child there to hear the stories, for it is in our rituals of remembering that we share our oral histories with our offspring. Through ritual, we teach those that come after us the values we cherish.

I never knew my grandparents, both died before I was born. I understand better the love and respect my father had for them, demonstrated by honoring them, publicly, at least this one weekend a year. They made him the man he became and through him, helped craft me into the woman that I am today and the man I see my own son becoming.

We are not disconnected from our family histories. They live in us and through us, are passed to our children whether we attend to their memories or not. Similarly, while our families are living, whether we ignore their needs, put off the phone calls, imagine that everything is “alright, or they’d call me”, we are not disconnected from them and their influence upon us.

The Post War (that would be WWII) cultural shift away from extended family and to the ‘burbs has been an interesting social experiment in fracturing the family, and it hasn’t worked out so well. When denied the comfort and company of multiple generations, aging has become isolating and demeaning, where too often Elders feel they are “less than” if they require assistance from others.  By ignoring rituals and connectedness (my mother made Sunday dinner for us for years, that became “our time”), we forget to teach our own children the importance of family connection, those generational bonds that sustain us when the world shakes beneath our feet.  Cooperation and collaboration support multiple generations of family so knowledge is saved and wealth is condensed.  I hope that as a unique American culture, we will come again to defy the idea that we are all independent, autonomous islands, sustainable on our own. This Memorial Day, I call you to remember, and then to share.

Blessings to you and yours,
Katherine

Be seen! Be heard!

When I was a child, I was often reminded “children should be seen and not heard.”  I believe that profound piece of social correction came from my great-grandmother’s Victorian era, passed on to my father.   Though he was kind, he was much older than most of my peers’ parents, and perhaps less tolerant of excessive noise and fidgeting.  His message was clear:  “Be invisible.  Don’t speak for your needs, don’t contradict your parents, don’t whine, don’t interrupt.  What adults are talking about is important.”

It troubles me that this same correction seems to be the social standard for Elders, as well, to be “Seen and not heard” and fosters myths about their plight.  “Don’t ask for help, no one will come.” “Don’t complain, there’s nothing you can do about your situation anyway.”  “Don’t contradict your doctor, because s/he knows best.”  “Don’t talk of pain, or loss, or fears, because you don’t want to be a burden and no one wants to hear it.” 

My work with seniors suffering from depression and anxiety, validates my awareness that unspoken concerns create the foundation for emotional health problems, even in those who never suffered them in younger years.  Some Elders, when they feel they have lost their voice, become withdrawn and isolate from family and friends.  They don’t feel good, and don’t want anyone to know about it.  Others react out of anger, a last ditch effort to show they still have power.  They take pain and make it mean something, not always in a proactive or productive manner.  Many hopeless or powerless Elders use “no” or refusal as a way to show they still have some of what makes them “them” left. 

Somewhere in our cultural dialogue, honestly sharing fears, hurts and losses translates to becoming a burden, and it is time to write a new story.  Rarely do I hear adult children speak of their parent’s ills as burdensome.  They voice concern, they want their parents to be comfortable, content and relaxed as they move through their days.  It is the Elder generation that walls up against sharing, as if through some externally imposed sense of shame, do not have cultural permission to reveal what is really happening with them.  Denial and minimizing are dangerously common issues, and one I faced with my own mother even though I had the therapeutic communication and nursing education to try and draw her out.  Her lack of sharing brought many trips to the local emergency department for crisis management, when had we gotten more honest information earlier, might have been resolved with a simple office call and medication adjustment. 

Our situation was in no means unique.  I have the benefit of working with a dozen or so highly functional, independently living albeit clinically depressed Elders every day.  The denial and avoidance of shame for becoming a recipient of care and attention instead of the provider is the daily norm. Emotional health dictates that we speak our truth and our needs, at every age, because unspoken feelings fester, resentments develop and once strong and capable adults begin to see themselves as victims of aging.  Too often I have people tell me they wonder why they must still wake up in the morning (which is passive suicidal ideation).  Sharing one’s fears, limitations or needs is often confused with relinquishing autonomy, but can be vitally important for safety and comfort. 

Don’t let Life happen “unexpectedly”!

IMG_1487_2We have choices about the story we tell as our families age. When I was doing some research on the literature available to support the aging, multi-generational family, I found the material woefully (and I do mean W-O-E fully!) inadequate. I kept coming across first-person stories that in describing their synopses began with “suddenly, my aging mother who lived across the country, needed assistance” or “unexpectedly, Dad wasn’t able to take care of himself anymore”. REALLY?

As a culture we seem to have a peculiar denial that allows us to ignore the changes that are typical across the lifespan? For example, we know that new parents need support and time to adapt to the demands of their infants, that teenagers will go through particular behavioral changes as they assert their independence, that college freshmen often gain 10 pounds their first semester.

We have analyzed and quantified and reported on changes across the lifespan — until we reach a “certain” age. I guess after the “empty nest” the Golden Years are supposed to manifest and the rest is all an easy listening, waves-crashing-on-shore-at-sunset relaxing life to be enjoyed. You know, where your greatest challenge is Erectile Dysfunction (and they have several pills available for that now!)

Parents don’t “suddenly” or “unexpectedly” age anymore than babies grow “suddenly” into toddlers or school-aged children “unexpectedly” become teenagers, yet we ignore these changes until the need arises.

I strongly believe that “failing to plan” – especially in the case of our parents – “is planning to fail.” Unless you are a fan of crisis and drama, you really want to start thinking this through now – while your children are little, you are still talking to your siblings and your parents can start making “back up plans” for when one or the other becomes temporarily indisposed. These conversations are so much easier to have and are much more empowering all the way around when had before someone is in the hospital.

The first step to that planning process is to get through the fear that your parents are aging, and that this means you and your lover will eventually age too. Teach your children how to communicate with you later by modeling good communication with your family now. I pray that this New Year brings open hearts and health and safety for you all!

Happy Family-ing!
Katherine