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Dear Death

Dear Death

“….I need a friend.”

Good morning Death, I see you may plan to visit a woman who has been my friend for 5 years now. She called me this morning from the ICU at Tempe St Luke’s and asked me to come to her. She told me she is dying.

And I am wondering now Sir, What can I say? What can I do Yama? I give her a part of me in life, but what can I give to her in death? Should I cry with her?

My card says “It seems like we’ve been friends forever.” And now forever has come to take her. She will be free. I give her a poem which holds my soul in words- simply my opinion as I have no knowledge worth her life. I can only hold her hand and smile with fear that I may not say the right things to my friend who has said so many right things to me.

I share a little more of my time with her.

If she goes with you tomorrow, I will know that we shared love today. I felt the sun in my heart. 

Today, oh Death, we learned of education. Plato could say the right things to my friend. We listened of love and I learned that love does not come to an end, and this has helped me to stand straight at my friend’s bedside as I share that idea. To her I can say, “I hope that you will remember we share love, and it does not come to an end.”

Now I must go to her as you too may be ahead of me. When I see you Death I will not recognize you. You look different to me today than you did yesterday. I’ll try not to be afraid. If when I get to her she has gone with you, please give her my love.

                                                                                                    Respectfully Yours ,

                                                                                                    JMD 6-13-1990

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The above writing was the result of a phone call I found on my answering machine late one morning after night shift at the steel-mill and early morning Philosophy class at Mesa Community College. My friend recovered from her condition. 26 years later after 20 plus years in nursing this letter to death carries much more meaning to me now than it ever did then.

In our excitement to preserve life, we have indirectly vilified death.

Working with end of life care and Hospice has led me to a place now where I hope to share the importance of having conversations with loved ones, friends and caregivers long before such a situation as above takes place.

© 2016 Caring Choices

Intrusive Assumptions

Facebook is famous for quizzes to find out silly and random “facts” about ourselves.  Quizzes determine which Bible character we are like, what our favorite song reveals about our personality, or even the color of our soul.  Recently, I saw a quiz that would determine which friends will take care of me in 2016.  With a quick scan of my Facebook presence, the quiz returned a list of five friends who will “step up”.  If only it were that easy to determine who can step into the role of caregiver.  My husband was not among the five friends which is curious since he would be the first person in line to take care of me in 2016 no matter what life throws at us.

This quiz got me thinking about the randomness with which many people approach the need for personal caregiving when age or health undermines our ability to care for ourselves.  In my work, I see people of varying ages in many different stages of chronic illness. In my family and community, I see the same.   When I meet with families who are trying to determine their next step after age or health has altered their loved one’s course, I often hear that the first choice is remaining in their home.  It then becomes my job to “intrude” on their personal lives to help them decide if that really is the right/best course of action for them.

Since beginning Caring Choices, I’ve heard the word “intrude” from a handful of people, as in:

  • “I wouldn’t want to intrude on their personal decision.”
  • “I wouldn’t want to intrude on a family matter.”
  • “Asking questions about [their situation] would be intrusive, wouldn’t it?”

To a degree, I can understand the hesitation to “intrude.”  Typically intrusion is from the perspective of outside, looking in – someone outside of the situation, being afraid to ask questions or offer assistance/guidance/suggestions.

But what happens when the intrusion is generated from the inside outward – much like the Facebook quiz that chose my 2016 caregivers for me – without asking important questions like “who will do what.”

We should not assume that our Facebook quiz caregivers (or other family/friends) will be able or willing to handle the demands of caregiving.  Yet, many people make this very assumption.  The act of caregiving is a huge commitment.  Caregiving runs the gamut from picking up prescriptions or groceries to preparing three meals a day to providing a bath to administering medications via a PICC line to very personal hygiene after elimination.  Not everyone is comfortable with every aspect of caregiving.  To assume that others will “step up” can be an intrusion.  Certainly friends and family do step up when they are needed.  I’ve seen this.  I’ve done this.  But there are also times when friends and family are not able to manage caregiving amid their own life’s demands – job, raising children, their own illness.

The best way to avoid the randomness of caregivers is to have conversations with people you care about.  Talk about who can pick up the groceries and how often.  Determine who is available to cook/provide meals and when.  Pull together a schedule so you all know whose turn it is.  Find out who is comfortable and able to give you a bath or change your soiled sheets or, literally, wipe your behind.  Seriously, these skills and abilities are not present in everyone’s toolbox.  The less prepared we are for the caregiving role – as either provider or recipient – the more awkward and intrusive the caregiving becomes.  Put a time table to the chores of caregiving.  How long will you need someone to do “X”?  What happens when they are no longer available?  Who will you turn to when family and friends have burned out?

Caring Choices knows that staying in our homes is the optimal choice for most people.  If you want to stay in your home, make a plan now that makes that option feasible.  Don’t simply rely on the random availability of family and friends.  Family and friends may not be able to meet all of your needs 24/7.  They may not be comfortable providing certain kinds of care.  Begin conversations now so that the roles of caregiving are carefully considered. Know before a need arises who can help you and in what ways.  Planning now can alleviate the intrusive worry of needing or providing care.

Que Sera, Sera

Recently during a meeting about nursing home safety measures to reduce fall risk and prevent future injuries, a resident said “whatever will be, will be” (which reminded me of the old Doris Day tune, titling today’s blog post).  His opinion about said safety measures was that regardless what we plan to do, we won’t prevent all falls and he may be injured in a fall at some point.

To a degree, I live my life under the motto of “whatever will be, will be” because we don’t know what the future holds and we are not able to control every aspect of every situation we encounter.  However, I also recognize that we do have control in how we react to things that occur.  We do have the ability to affect change in our circumstances when life throws us a curve ball.  We do have the power to make plans (Plan A, B and C) to prepare for future happenings.

One thing we all know for certain is that each of us will face death, our own and that of people we love.  We don’t know when or even how it will happen.  We likely won’t be able to control or predict when it will happen.  BUT, we can help manage the emotional burdens for those we love.

We can impact the future for ourselves and people we love by making plans about healthcare choices and having personal conversations with them about our hopes, values and expectations.  Plans do not need to be elaborate constructs of detailed, step-by-step processes.  Simply telling our loved ones a few key things can help them face our illness and death with less trepidation and burden.  For example, some things I say to people who love me:

  • It will be okay to place me a nursing home if you are not able to take care of my needs in my home. Visit me as often as you can but know that daily visits are not necessary.  If I’m still able to see/read, make sure I have my iPad, books and magazines to occupy my time.
  • I do not want to take a handful of medications especially if they will no longer benefit me or give my life quality. You know that I cannot swallow pills without great trouble so limit what I’m given in pill/capsule/caplet form, make sure it’s crushed (or an appropriate alternative  if manufacturers say not to crush!) and in pudding!
  • I am in favor of receiving hospice care for as long as I am eligible. Don’t wait too long to begin this vital service which will benefit me and you.
  • Know that I have made my choices and decisions based on my values, beliefs and life experiences. I have made these choices and decisions to reduce/eliminate decision-making burden on you.  My Five Wishes form will guide you in future decisions if I am unable to communicate.
  • If I’m no longer able to express myself, know that I love you. Your presence in my life has made it much richer and more meaningful. I will see you again someday. It is okay to say good-bye to me and for you to tell me it’s okay to leave you.

This isn’t morbid or maudlin.  This is life-changing knowledge I give to my loved ones so they can know they’ve done things in the manner in which I’ve instructed (and chosen for myself).  They will not need to second-guess decisions or question what I would have wanted when a healthcare professional questions them.  They will be able to confidently advocate for my choices and stand up to people in positions of power who may disregard my choices because they deem it more appropriate to follow regulations and rules under which they provide services.

Taking some of the unknown out of “whatever will be, will be” for my family and friends is important to me.  Planning for their emotionally-whole passage through loss, grief and bereavement is something I do as much for them as for myself.  Conversations, writings and my Five Wishes will aid them in decision-making; but they will also aid them after I’ve gone to the other side of the garden wall (nod to Jackson Browne).

Caring Choices.  Make them for yourself and for those you love.  We can’t account for everything, but we can pave the way to reduce emotional burden of decision-making and caregiving.  Don’t leave your and your loved futures up to “Que Sera, Sera.”

© 2015 Caring Choices

High Dive

Way back in 1963, I can remember warm July summer afternoons like today. My family would take me along when going to a local swimming pool at an amusement park. I had been swimming for years having had YMCA lessons and growing up a block from a river. But there was a very strong attraction to the diving boards at big swimming pools. It hadn’t been until this day that I finally made the choice to try to jump off. I practiced on the low board for a while. It was a perfect day for this because there were not that many people in the pool yet. My earlier experience at another pool closer to my home had not gone so well.  Climbing the ladder took a few attempts before I made it to the top. Mostly the people in line behind me were girls and when I froze at the top it was far worse fear for me at the moment going forward across the board and jumping than admitting I “chickened out”. Climbing back down after making the others climb down behind me was not an option this time. Walking across that diving board was scary and I couldn’t help thinking I was about to walk-the-plank. I jumped.

And each time after was less frightening and scary. I knew the water wouldn’t do more than sting a little if you jumped in right. And eventually I was diving, doing flips and gainers just to feel that few seconds’ thrill of going into the water at that speed. Eventually I was able to convince others to take the “leap” themselves when I worked at one of those earlier pools as a Life Guard. Now it was easy for me to encourage people into taking that step past their fear to have a summer fun experience. And I did, whenever I would see those who had the same hesitation on going off the high dive I would escort them up and walk them through it. And if they still wanted to stop once on the top I would escort them back down. And more often than not they would return in a short time and want to try again. And I was never really that good of a diver. I just loved the water. And I loved jumping off the diving boards.

Today I find myself once more in the Life Guard role. There is no high dive now, no water, umbrellas or concession stand. It is just life, and the reality of time. But just like the story above, I had to face the frightening leap into another kind of pool. This pool was my friends, family and everyone around me who live their lives and dream the hope of good health, kindness and love. And as time goes by I have gained another confidence from climbing to the heights of emotion and helping Hospice patients and their families to share strength and  compassion to help them deal with the discussions and decisions at hand.

Caring Choices has taken the leap.  We are aware of how scary and frightening it can be to face the unknown. We are ready to offer the possibility for enriched dialog among people who care about and care for each other. Share your fears and concerns and often there is strength in knowing others have jumped before you and can understand.

© 2014 Caring Choices

Fog Light Blog Light

DNR, CPR, IVF, ADL, PRN, POA, AD/LW, PO, HS, PCP, MS04, IADL, PT, OT, RN, NP, NPO,LPN, CNA, NA, MD, ANH, LSW, TPA, MI, CVA, TBI, PVS, MHB, ARDS, ESRD, COPD, BMP, GTT, CF, ARF, ETOH.

Imagine, just for an instant, that you are being timed and are expected to immediately recite the purpose, meaning, and logic behind these initials. Above is a very small assembly of abbreviations comprised from the thousands of potential references we may encounter during an emergency or critical medical event – an event that may require us to act on behalf of someone we love deeply or for whom we are responsible.

A simpler life. That’s all I ask, I saw it on the intranet or internet, or maybe found it on an iPod, iPad, iPhone, now I need an  eye doctor, lawyer, shrink … can anyone tell me what any of this means?  We hear what we want to hear, and often miss the details of an entire conversation because we are focused on the one phrase, word, or number which triggers a SNAP-TO-ATTENTION(!) response of every sense in our body.  That one moment is different for each of us … where we begin to wonder/wander in our heads.   How long do they have? Are they ever going to be able to walk, talk, eat, breathe, see, hear, live again? What does “managed expectations” mean? What is an “optimal outcome”?  What is a “best case scenario”? How do you do “symptomatic treatment”?  What does “viable” even mean?

Despite the magnitude of information we are granted easier and faster access to, the emotions remain mutual for us all.

Fear

Love

Grief

Joy

Sadness

Empathy

Understanding

Doubt  

Hope

Anger

It is not unusual to see, feel, hear, and experience all of these in a few moments.

DEATH = the glass is half empty.  LIFE = the glass is half full. No matter where we place out trust. Faith is the strength that stays as constant as the magnetic forces at work in the universe to help create and hold us in place.

Faith, and the freedom to express that trust, varies as widely as each smile and as deeply as every dream. Welcome this feeling each day with warmth of heart and reach into the lives of each other with the renewed gift of another day. Share your thoughts, imagine the beauty, and sleep in the satisfaction of having given the light of clarity to those you love. Knowing this (your wishes) will provide the power to generate the force that lifts the fog of confusion and stress surrounding the decisions of what to do when faced with the task of deciphering the multitude of medical and legal abbreviations, terminology, and codes.

Caring Choices stands ashore of your voyage with beaconed guidance to assist when life will finally welcome you home.

(c) 2013 Caring Choices