Pride Goes Before the Fall!

It is no secret that as we age, our bodies are less sturdy, our gait can be less balanced. Too often, pride is the greatest obstacle to making changes to reduce the risk of falls or injury.

PRIDE: keeps us from removing throw rugs (the single greatest tripping hazard in any home).

PRIDE: keeps us from asking for help to do things we used to do with confidence. (I remember the alarm I felt when I discovered my 88 year old mother was changing her own ceiling lightbulbs – standing on a stool, reaching up over her head).

PRIDE: keeps us from using assistive devices (especially canes and walkers) when our doctor or family has asked us to.

PRIDE: leads us to believe we are unbreakable if we do fall.

PRIDE…will get you in trouble!

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Photo credit to phys.org, article on Emergency detection systems.

A fall with a fracture can be a sentinel event. 30% of people over the age of 80 who suffer a fractured hip die within the year, because it is that taxing on one’s health and stamina. Risk of injury is increased if one is taking blood thinners. A fall with a bonk to the head can be an inconvenience for some, but a deadly experience for those on anticoagulants. Blood pressure medications can cause dizziness – rise slowly, don’t walk off until you feel steady.

Clearly, the best thing to do is NOT FALL!

Look for tripping hazards in your home, and consider ways to remove them.

  • Throw rugs can be secured with double sided carpet tape, but are still a significant hazard. Can you remove them altogether? Uneven flooring can also be hazardous.
  • Mind your pets and their toys. They can be small enough to not notice, large enough to cause tripping.
  • Make sure your walkways are free from clutter, especially at the end of the day.
  • Provide good lighting to those paths you walk, especially at night.
  • Ask for help when you need it, and if you have to do something risky (changing light bulbs, getting into a high cupboard), make sure someone knows what you are up to.
  • Wear comfortable, non-slip foot wear that give you good support.
  • If you live alone, please consider a Life Alert type call system. They are well worth the cost. Find a Call Buddy – someone you agree to check in with at the same time every day.  Make a back up plan for what to do if you call and they don’t answer when you expect them to!

Balance and strength come from our core muscles. Find an exercise class or home program that gently helps strengthen muscles and improves balance. Elastic muscles are strong muscles, older adults who exercise daily are less likely to have a fall, and less likely to suffer severe injury if they do. It is never too late to begin toning and strengthening! Swimming, yoga, walking, tai chi, are good forms of exercises that are easy on the joints.

As always, if you want more information on any topic I write about, or information on something you haven’t seen here, please email me at info@artofparentcare.com

 

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.

 

 

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

 

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???

Moving from “Burden” to “Participant”, a paradigm shift in the roles the 1st generation can play in the extended family.

I hear this at least once a week – someone will state they don’t want to be a burden on their family. They don’t want to live with adult children, they don’t want to ask for help if they live alone. It hurts my heart to hear this, I learn so much from the Elders I know and enjoy sharing time and stories. I don’t want to see my role in my family change from participant — from being essential to our joyous and goal-oriented function — to feeling that I have nothing of value to contribute and would only be a draw on resources. A “burden”.

 

New American Dictionary defines burden thus:
burden |ˈbərdn|noun
1 a load, esp. a heavy one.
• a duty or misfortune that causes hardship, anxiety, or grief; a nuisance
• the main responsibility for achieving a specified aim or task
• a ship’s carrying capacity; tonnage:

2 (the burden) the main theme or gist of a speech, book, or argument
• the refrain or chorus of a song. (italics mine)

How did we come to believe that as we age in our family, our role evolves from essential service to a “misfortune that causes hardship, anxiety, grief”, or that we become a “nuisance”??? I have fixed ideas about how this shift from essential, valued, integrated member of the family disintegrated in our Post WWII culture, (you can find them addressed in Chapter One of “Holding Hands: Journeys with the Aging Family” to be released in 2013). More important here is refuting the myth of the invisible, devalued, aging adult and moving from “burden” to “participant” in the co-generational family.
The “burden” concept begs the question, “What do we need to change so that Elders stop defining themselves and their needs as a burden?”  How do we help them quantify the value they bring to the family?
It would be nice if Elders in a co-generational setting were more visible in our media. Portrayals in popular culture “cameo” grandparents, aunts and uncles. They are not part of the weekly story line, and are often written out of our own storylines as well.
This invisibility comes from both sides. Our aging parents, who began their families in the neo-television/post WWII era, also have no model for integrating parents. Likely, they moved away from their own families of origin to the suburbs after the war, leaving their own parents to the care of each other, their siblings or a child who stayed geographically close. To have parents live with us after WWII was interpreted as a weakness – not cutting “apron strings” or being overly involved. “You aren’t going to let your parents tell you what to do, are you?” as though taking advice from those who have been there/done that, would be shameful. Not independent. Not trendy.

Our very narrow tolerance of anything “different” bled into the way we learned to not care for our Elders. On the other end of the parenting spectrum, we were expected to cut our children loose at the earliest legal age and start planning our midlife, renewed “independent, Golden Years” with a sense of relief that all that family stuff was done, checked off the to-do list of life. I’m here to tell you, that was all a bunch of hooey.
What we gained instead were expensive and low-quality institutions to house Elders, middle-aged parents suffering from “empty nest syndrome”, new retirees suffering from a lack of purpose and sense of value. I stand firmly behind the belief, from four decades of observation and one of professional exposure, that humans are most decidedly NOT meant to be independent, autonomous islands in the stream. We hunger for connectedness, integration, participation, feeling valued and loved, and contributing to family and community. The tribal model of survival is as ancient as our earliest recorded histories, there is a reason why. This experiment of division has not promoted individual or family health as our members have aged.  It fractured family resources rather than concentrating family wealth and resources of time, and now creates a discontent in the Elder generation which too often leads to great feelings of sadness and loss. Where they may desire connection and support, they deny their own needs because somewhere along the line they bought the lie that to do so would be burdensome to the very people they gave life and love to.
This is wrong.

Recognizing how we got here is part of the solution. The other part is asking yourself how you show  you recognize the contribution your parents, aunts and uncles, Elder family friends make in your life now. Reminiscing is great, but subtly reinforces the concept that those days of value have passed.

  • Why is their presence important NOW?
  • How do they add value to your life NOW?
  • What could you not do without them for NOW?

In the early self help years, we called these “ego strokes” and they developed a reputation for being unhealthy. They aren’t. We all need to know that we matter to the people around us, and no age cohort needs that more than the one that has been rendered invisible, comical, burdensome in 40 years of televised cultural teaching.
What can your parents teach your children – essential family or cultural knowledge, survival skills, games and playfulness – that you can’t due to limited resources or time? Looking at the generations that stand on either side of you, what do they have to offer each other? Child care? Cooking lessons? Learning to budget money? Homework supervision? Being the licensed driver while a teen gets their supervised hours in? Living models of history?  Can your child learn how to express love and service to an Elder family member, just because it’s the right thing to do? (Teach them now with your parents, and they will teach your grandchildren in time).
This is how we rebuild a cultural model of family members taking care of each other across the lifespan. This model is seamless, no one gets left out. Everyone knows they are important to the quality of someone else’s life, to the security of the family and it’s members, and love and respect have ample room to grow.
Referring back to that original definition, the alternate to “nuisance” was:
2 (the burden) the main theme or gist of a speech, book, or argument
• the refrain or chorus of a song.

I choose to think this is where the descriptor as Elder family member being “a burden” first came from. As the historians of our family and culture, that is a much more tender and fitting definition of those who have come before us, shaped us, nurtured us, raised us up. May our Elder Generation come again to be revered as carrying the chorus of our family song.

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Happy Father’s Day,
Katherine

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The Art of Parent Care: Help me know what you need.

Thank you for filling out my poll.  I hope to use this information to guide me in my blogging, so I am addressing the issues most pressing to my readers.  Remember, we’re all in this together!

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