When the End is Near

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In two impersonal, sterile hospital rooms two separate families gather to keep vigil, to say good-bye.

Previously the doctors have had the hard conversations - the loved one is no longer responding to treatment and the prognosis is grim.

The patient and his or her family too have difficult decisions to make, hard conversations to hold. Words must make their way past a lump that forms in the throat, around sadness that breaks the heart, through tears that glisten in eyes and spill down cheeks, and finally formulate in a brain dazed by shock. These conversations require great courage.

The two families keeping vigil had these hard conversations. One family chose to deny the reality of their loved one's situation. The other family chose to let go. The patient chose to let go of this life and his family chose to let him go.

Letting go of this life and of a loved one is a heart-wrenching decision and it can also be an immense gift of love.

The family who denied reality and rejected the option of palliative care, of hospice care watched their mother, wife, and grandmother die painfully. Her death was a traumatic event both for her and for her family.

The family who chose to let go also chose hospice care. Hospice focuses on palliative care--keeping the person comfortable through the dying process. Hospice is not about heroic efforts to extend life, but about helping a person to die peacefully and helping a family to cope with the heart-rending loss of their loved one.

For many there comes a point when the doctors and other medical professionals have exhausted their options, when the treatments have failed. At this difficult moment in life, the choice becomes how to let go, how to face death. Hospice care, palliative care can help families make this difficult transition with support, care, and comfort.

Alzheimer's - Another Face of Grief

Grief wears many faces. The person standing in the unemployment line. A family that lost a home and pets in a fire. The mother who lost a child. The father who receives the news that his child has a serious birth defect. The woman who has to have her leg amputated. The husband who has to bury his bride. The young surgeon who receives a diagnosis of terminal cancer. The grandparents who know their granddaughter died at the hands of a drunk driver. The person who receives news of a life-changing chronic illness. The family who loses a beloved pet. Alzheimer's Disease (AD) is yet another face of grief.

AD takes away a loved one little by little. A once active, well-spoken woman who raised 6 children, ran a home, mentored young women, loved her husband, sewed clothes, sang at weddings begins to change. At 82 she watches the home she designed and her husband built for her burn to the ground. Her family notices that she is defensive, angry, having difficulty understanding some important factors of her husband's diabetes. Is it the beginning of Alzheimer's or the trauma of losing her home and having to start again in her early 80s? She and her husband move into their new home and she seems to become more like herself, yet there are still small changes.

Then her husband dies. After 65 years of marriage, a huge loss. A loss that would send anyone reeling. She adapts to living alone, but slowly changes become more apparent. She is unable to fill her own pill case, then she is unable to remember to take her pills. Her meals become more and more simple until she is having trouble even operating the microwave. She begins to have trouble remembering people. Eventually she is unsure of who people are and how they are related to her.

Slowly, over the months and years her family loses her, while she is still with them. Sometimes she remembers them and other times not. Her speech becomes garbled and communication becomes difficult as she struggles to find the words to express her thoughts. Social ques are missed and behaviors are often inappropriate.

Her body is still there, becoming more and more frail. She, a once vibrant, active, hard-working, talented woman becomes trapped inside a frail body and a confused mind. Still there are vestiges of the woman that once was - a clinging to her faith as she recites John 3:16 like she is holding fast to a lifesaver in a treacherous sea; her love for music as she plays the piano at 2 a.m. or watches Lawrence Welk over and over; her dislike of clutter and desire for order. Somewhere under the disease, inside the frail body, occasionally peeking out of the traitorous brain is the essence of the woman that once was.

Her family grieves. Lost is the opportunity to taste her cooking. Gone is the ability to carry on an adult conversation with her. Left behind are excursions to museums, parks, zoos, berry picking, gardening, and shopping. Recipes and memories that have not been written down may become extinct. Yet in the midst of all the losses, of what was that will never be again, there is an opportunity to keep recreating the relationship. Where we used to go shopping, now we watch episodes of Lawrence Welk. Where once we watched movies together, now we read children's books or look at photo albums. Our activities change, but while she remains there is the chance to love her, to minister to her, to enter into her world and connect however we can. There is the chance to hear her voice and to hear her play the piano, the opportunity to hug her gently, to comb her hair, to take her for a ride or to church. Every moment is filled both with grief and with the opportunity to seize every chance to cherish her presence while she is still here.

New Beginnings: #3 Are You Wearing Your Oxygen Mask?

Awhile back I saw a couple of clips of flight attendants who delivered the airplane safety instructions like stand up comediennes. Unfortunately, I've never had the privilege of flying with one of them. I've only been treated to the traditional safety film and accompanying flight attendant demo. Can you keep a secret? I thought they were a little boring and even useless. I mean, if your plane is hurtling toward the earth from 25,000 feet how much difference are any of these safety features really going to make?

Then one day I had a bit of an attitude adjustment. Still no comedian flight attendant, but I was traveling with a six year old family friend. Although her father was also traveling with the group, I knew he was a bit like the absent-minded professor and so I was prepared to give her a little extra attention. 

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As her little six year old self sat next to me on the plane and the safety film began, I paid careful attention. They asked who should get the oxygen mask first you or a child with you. Heroically, I replied firmly in my head, "the little girl!" Then they proceeded to show me why that was the absolute wrong answer. And it made sense, not only on the plane, but in life.

If I tried to put on the child's mask first, and encountered trouble, I would soon run out of oxygen, become unconscious, and be unable to help her. If I put on my own mask first, I would have a fresh supply of air that would allow me to remain conscious and clear thinking, able to help her overcome any challenges we might encounter putting on her mask. 

This is also true in day to day life. When we become busy, stressed, overwhelmed, our energy can be rapidly depleted leaving us without the resources to cope with life's difficulties and to love well those around us. Self-care is an important aspect of good health -- emotional, physical, and spiritual health. In times of high stress, times of change, or times of additional responsibility, adequate self-care can become more difficult.

Identify What You Need

We all need adequate sleep, healthy food, plenty of water, and exercise for physical self-care. Those are critical parts of caring for ourselves, and often the first to be sacrificed. Yet, we are more than physical beings and caring for ourselves emotionally and spiritually is also important.

What refills your emotional tank? What allows you to de-stress and regain the ability to meet high emotional demands with emotional fortitude? For me, as an introvert, time alone, time to think, time to process what is happening all refill my emotional tank. Time alone carefully balanced with time with good friends and loved ones keeps my emotional tank at optimum levels. What refreshes you? What fills you with positive emotional energy?

What about spiritually? For me, journaling, prayer, Bible study, and fellowship help me to maintain spiritual well being. What renews your spirit and your connection with God?

Make Space in Your Life for Self-Care
1. Identify what you need.

2. Brainstorm ways that you can incorporate those things that refresh you into your schedule.

3. Take steps, even small ones, to begin to create spaces and times that minister to your body, soul, and heart.

4. Put on your oxygen mask so that you have the strength to do all God has called you to do.

What have you done to make self-care a part of your life?

Or

What is the hardest part of finding time to care for yourself?

New Beginnings: #2 When Everything Seems Upside Down

When Everything Seems Upside Down

New Beginnings bring lots of changes. Positive. Exciting. Good. Yet, even the best of changes require us to adapt and navigate.

During that same time of crisis that I mentioned in "Who Are You?", I realized that feeling my life had turned upside down was more than just a feeling, it was reality. Nearly everything about my life had changed - job, schedule, meals, living arrangement, pet, dress code, sleep. My world had turned upside down. 

Still, I had chosen this path to be able to care for my Mom. I was convinced that this was God's leading and a gift I wanted to give to my Mom in this winter season of her life. So, how would I cope with all these changes? How would I navigate this uncharted territory?

Stand on Your Head

The first cross-stitch project I completed says, "When Everything Seems Upside Down, Stand on Your Head." Sometimes everything does seem upside down. How would I stand on my head?  

1. Trust God and His Purposes. God is always at work, even when I don't see it, even when I don't feel it. He is at work to draw us into relationship with Himself and to mold us to be like Christ. When I stand on my head, I want a firm foundation underneath me. God and His purposes are a trustworthy foundation.

2. Accept. Although I had underestimated the impact the changes would have, I needed to accept the reality of my new situation. Only by accepting the reality of what is could I begin to find real solutions to cope. I needed to put my head down on the floor and prepare to lift my feet toward the ceiling, trusting that I could see things correctly again, that I could navigate this uncharted course. 

3. Re-create. So what that everything was different? That's just an opportunity to be creative, to find new ways to do the things that were important. Example: Being involved in a community of believers was important to me, but attending church on Sunday mornings was a BIG challenge. With a little research and a little understanding of what would best meet that need, I found a Sunday School class that would fit into my new schedule and allow me to be involved in a community of spiritual sisters. 

4. Establish New Rhythms. In my old life, I had a quiet time each morning and set aside time to unwind daily and time to step back and rest deeply on the weekends. That rhythm was displaced in my new life. Yet, those rhythms were important to my emotional, spiritual, and physical well-being. I am still experimenting with new ways to incorporate these essential rhythms into my new life. Thankfully, it's looking like Wednesday will be my new day of rest and I'm finding a new space and time for my daily quiet time. What rhythms do you find worth keeping? How do you re-establish them?

These are just a few ways to cope when life seems upside down. 

What suggestions would you offer to anyone navigating many changes at once?

News of Beginnings and Endings

At one end of the 3rd floor is maternity; at the other end is the hospice unit. Between them a short hallway, the dash between birth and death. Life.

The maternity unit is most often filled with wonderful news, with hope, with the anticipation of a life to be lived, of dreams to be developed, of potential to be realized. 

The hospice floor is a place of endings, of letting go, of saying goodbye, of memories of a life lived, of sad news. 

Between them is life, where dreams are realized or lost, where love is found and lost and found again, where families are built, where memories are made. 

I read a book recently about a man who was diagnosed with terminal lung cancer in his late thirties, a brilliant surgeon with a bright future. As he adjusted to his diagnosis, to chemo, to the loss of dreams, to the loss of the life he and his wife had planned, his oncologist challenged him to determine what he valued and to expend his energy, the energy and time he had remaining on what he valued.

If I was given the news I had 10 years or 5 years or 3 years or 6 months or 3 months to live, where would I want to expend my energy and time? What would I want to do? Who would I want to be with? What legacy would I want to leave behind? 

The man in the book chose to finish his residency, create a daughter with his wife, write the book I read, and love his family and friends. The journey for each of us will be different. Identifying what we value, where we want to spend our remaining energy and time is a deeply personal process. 

I haven't received news about how much longer I have to live, still I want to live a life of meaning, of focus, of value. I want to leave a legacy that matters. Pondering these questions, determining values, is an important part of the journey to leaving a legacy that matters. 

New Beginnings: #1 Who Are You?

New Beginnings . . . those words speak of hope, life, starting over, second chances, something new and exciting on the horizon. Energizing. Hope-giving. Anticipation.

I expected the Necessary Endings of leaving a life I'd spent 18 years building and maintaining to be difficult, but I had great expectations for the New Beginnings. I knew that even New Beginnings come with challenges, but the anticipation of new opportunities was also energizing. My previous experiences with New Beginnings had left me with the expectation that the challenges were outweighed by the benefits.

Imagine my surprise, when about a month after my move, I reached a crisis point. I was exhausted and overwhelmed and my dreams and expectations seemed far from being realized . . . E.V.E.R. being realized. However the biggest impact and surprise was that I felt like somewhere, along with the things I couldn't find amidst the waiting-to-be-unpacked boxes, my identity had been lost in the move. Dear friends helped me see that it hadn't been lost, just misplaced for a time.

For 18 years I had been Dar - ministry leader, teacher, administrative assistant, journaler, and coach/counselor. Now I was Darlene, disconnected from church and ministry due to my new job, care-giving responsibilities, and schedule. I had become a Unit Secretary learning to function in a field where often even the words sounded like a foreign language. And, I had no time to journal, no space to find solitude or silence. So many of the things that made up who I am had been replaced by something foreign to who I am.

Thankfully, dear friends reminded me of who I am and helped me to begin to think about how to make sure my identity didn't get stuffed in a box to be unpacked later or donated to charity.

New Beginnings ARE a time of hope, anticipation, second changes, yet even the very best of new beginnings contain profound challenges and inherently involve change. Change impacts our identity. So how do we retain our identity in the midst of change, especially profound change? What do you do when you feel like you're losing yourself in the midst of a new season of life?

1. Remember and re-member. In the midst of unpacking, of adjusting to the new job, of meeting new people, of adjusting to a new spouse or baby, of starting a new ministry take time to remember who you are. Take time to remember your strengths, the contributions you have made in the past, the things that define you. Then take time to re-member yourself, to put yourself back together. Change pulls at us from different directions, making us feel like we're a rag doll caught between children in a tug of war. We're close to losing vital parts. When we remember who we are and then put ourselves back together we're rescued from the tug of war and able to retain our wholeness.

2. Maintain Connections. Maybe you've been blessed to have family that is part of your New Beginning, family who can help remind you of who you are. Yet, New Beginnings create stress for the whole family, so take time to stay connected as a family. Maybe you've left behind dear friends who helped you stay the course in the past. Keep in touch with them. Accept their reminders about the best that's in you or about what God has been doing in your life. Let them help you remember the best of who you are.

3. What Defines You? What are those things that if you don't do them or don't have them you're not yourself? What are those things that others would say, "As long as I've known you, you've _______"?For me, reflective silence, solitude, journaling, and ministry have defined me since I was a teen. Without them I don't feel like myself or feel able to cope well. With help from a listening friend, I was able to recognize the importance of prioritizing these things in my new situation. It may take creativity, cooperation from others in your life, and determination, but maintaining your identity is critical to your new beginnings. You are the only you the world has and if we lose you, we lose an important voice.

What have New Beginnings been like for you?

Did you ever feel like you were losing yourself? How did you cope?