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Holding Hands: Journeys with the Aging Family

Love is Patient, Love is Kind…It always protects, always trusts, always hopes, always perseveres. 1st Corinthians

Why we need Eldercare Advocates

“All of a sudden, my parents are so old.  I don’t know how to help them!”. This sudden awareness of aging causes anguish to adult children, as they become acutely (and often unexpectedly) aware of …

Source: Why we need Eldercare Advocates

Why we need Eldercare Advocates

“All of a sudden, my parents are so old.  I don’t know how to help them!”.

I have heard this statement routinely in every position I have held providing support and advocacy to Elders. This sudden awareness of aging causes anguish to adult children, as they become acutely (and often unexpectedly) aware of the aging of their parents, and feel powerless to “help”.  Parents are not supposed to be fragile and needing assistance, parents are our backbone, our foundation, folks we should always be able to turn to.  You know… always there. “Grandparents are old.  My parents are NOT!”

The truth is, our parents age as gradually as we do, but if there is little contact from month to month or year to year, these changes can seem to come on abruptly and unexpectedly.  Indeed, there are critical (“sentinel”) events that rush the aging process – a fall with a fracture, a serious illness – and the consequences can be dire, the recovery long and debilitating. For the most part, though, we each “age”, every day.

Later life aging is divided into three primary categories (with new ones cropping up regularly as our society ages stronger and is living longer). Generally speaking, they are the “young-old”, from 60-75, the “old-old”, from 75-85, and then the “frail elderly”, 85 and above.  We have now added to that the “super centenarians”, those people exceeding 100 years of age. These definitions would be better applied to the progression of aging instead of attaching a year marker to them.  Many seniors remain active well into their 80’s –busy, vibrant, learning, creating, contributing adults in our families and culture.  They may remain “young old” far beyond their mid-70’s.

What we do witness is a progression from activity to a gradual slowing down; appetite and interests change, fatigue becomes more frequent, sleep patterns change.  Senses may become impaired, and with that, enjoyment in conversation or visual stimulation decreases. Mild to moderate joint pain makes mobility and comfort difficult, and the gait may become unsteady enough to require an assistive device (cane or walker).  It may become hard to attend church or social gatherings because it is difficult to see or hear.  Memory may become altered, and additional assistance is required in what are termed the Activities of Daily Living (ADLs).

When an out of town child comes for a visit, what has been a steady progression for the older adult and those around them suddenly appears as a crisis for the adult child. They may feel obligated to intervene on behalf of parents who seem to be failing before their eyes.  Such situations often result in chaos and upset.  I have known such family to uproot seniors and move them into assisted facilities, believing they were doing what was right and safe, yet having little understanding of the culture in such facilities,  or concerning themselves with the intense sense of loss one endures when they are uprooted from that which is familiar. I would suggest that unless one has a regular, on-going relationship with an aging adult, it is best NOT to jump in and make decisions for an aging family member, but instead to work on building a closer relationship with them, help them assess the need they have for assistance and figure out how to get it to them in their home. I have seen such painful moves imposed on Elders by well meaning – but disconnected – adult child who impose their fear and will on their parents.  We refer to these folks as “blow in, blow up, blow out” family members.  They aren’t really in a close relationship with the Elder, and so come from a place of fear and protection that is not always rightly placed.

As families endure the separation of miles and hours, it is more important than ever before that we make connections in their communities with reliable people to provide support and advocacy, and keep us in the loop, so to speak, as the needs of our aging parents change.

 

If you would like to be such an Eldercare Advocate,  The Art of Parentcare is now accepting applications for training for September of 2016.  Learn what it is to be a resource for Elders in your family, your church and your community.

Katherine

 

 

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.

After a long hiatus…

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

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

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

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

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

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

Katherine Silver, RN, BSN, CCM, MASM

Blessed Christmas, One and All!

The Day has arrived.  Christmas!!!!

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

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

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

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

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

~   ~   ~   ~   ~

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

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

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

Katherine

 

 

Some thoughts on Advance Directives

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! 😉

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???

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