Working as a hospice social worker and as a social worker in a nursing home provides me unique opportunities to advocate for my patients, residents and their family members.  With every elder I encounter, I feel like I am bearing witness to their final journey (whether it be years, months, weeks or hours) in this human life.  It is a privilege to do so.

Not everyone is psychologically or emotionally comfortable facing the end of life – whether their own or that of someone for whom they provide care.  Certainly when my Mom was in her final hours of life, I didn’t want her to die; but I also knew that she could not live much longer in the end stage of her disease.  The signs were becoming clear very quickly:

• She stopped eating.  Within 48 hours, she went from eating small amounts of oatmeal for breakfast or half of a grilled cheese sandwich with a half cup of tomato soup for lunch, to eating nothing.
• She stopped drinking.  Her last drink was some iced tea with lunch the day before her death.
• She stopped going to the bathroom.
• Her temperature seemed to fluctuate between feverish and cold.
• She slept more deeply than I’d ever known her to sleep.  She stayed in her bed for her final 24 hours.
• I noticed that her feet turned slightly purple and blotchy; her fingertips turned blue.
• She would occasionally awaken enough to know I was in the room; every once in a while she would speak.  Sometimes she spoke to me; other times she spoke to my Dad while staring into the corner of the ceiling above her.  (Dad died five years before Mom.)
• Her breathing slowed, became more shallow.
• Her eyes became glassy; when she slept, her eyes were half open, half closed.

When I got awake on Sunday morning, these signs were even more prevalent and I knew I’d better call my brother and have him come to the house to say his final goodbyes.  I knew Mom would die that day.  I would bear witness to her final day on this earth and although I had episodes of deep sadness and bouts of sobbing, I also had moments of profound peace and joy.  When Mom was talking to Dad in whatever faraway place he was, she called his name and asked him to wait and her voice trailed off (“Dale, wait…”).  I felt as though I was witnessing Mom stepping with one foot into the great beyond and Dad holding out his hand to greet her.  It was serene and her breathing was unlabored.  My brother arrived and suggested I take my teenaged son out of the house for a bit.  My brother needed to spend time with Mom and bear witness on his own.  While we were away from the house, my brother called and said “Mom’s gone.”  When we returned home, Mom was laying in her bed and looked as though she was simply napping.  She looked more peaceful than she had in years (because of her daily struggle to live with COPD).  I knew that peacefulness was because Dad had taken her hand earlier in the day and guided her to their eternal life together.  I also knew my own peace that day because Mom died as she wanted – in her own bed, in her own home and without my brother or me having to make agonizing, heart-wrenching decisions in the midst of her final hours.  We were able to just to sit and hold her hand, say our final words, begin to find peace in our own ways, and bear witness.

Caring Choices wishes for all to find peace at the end of life and to bear witness for each other without the distraction of agonizing decision-making. You can talk about this; you can prepare for your own peaceful journey.

(c) 2014 Caring Choices

Time can be so deceiving at different points along the way for some of us. Many expressions shape this fact:

• Time flies
• Time seems to stand still
• Frozen in time
• Time dragged on
• Gaining time
• Lost time

We all know, on some level eventually, time is a constant. Never faster or slower; time is just ticking away.  We live our lives around a generally accepted value of how much we have and what we need to do during a very large part of it. There are, however, events in our lives that change our routine time management. Some of these are relocations, vacations, new jobs, graduations, anniversaries, births, accidents, disasters and deaths.  Over a life span, relationships develop and end that can affect our perception of time just as much.

Relief is the word I would use to describe the expression of the parents’ recognition of my name from my Hospice name badge. Smiling through wet swollen eyes she held my hand and said, “We’re so glad it’s you.” My mind raced for the connection and quickly filed through thousands of faces, names, and places to draw the conclusion. “Wow,” I said, “it has been quite a while.” Walking past the child on the living room couch, I seemed invisible to him as he stared through me at the cartoons on TV. The tiny kitchen was very neat, and the three of us stood in an awkward triangle for a few seconds. I pulled out a chair for her and said “I don’t think he remembers me.” “Well”, his mom said, “he was pretty young when you met him. But he does remember you playing that little green guitar because he talks about that sometimes.” Laughter faded quickly into tears.  “I would like to see if he remembers me?” I asked. Careful to not block the TV screen, I squatted beside him and gently said, “Hey buddy do you remember me?” He looked at his mom and she rattled off a series of names and places to which he responded by one slight nod and then focused back on the TV screen. “I’m feeling sick mom”, he said holding his stomach. While his parents walked quickly through the house for the basin, he leaned forward enough to reach the edge of the couch and vomited bright red blood onto the floor and my shoes. As mom and I cleaned up, he sat stoically watching cartoons. “He has been doing this since we got home from the hospital today,” his mom said. I called the doctor, was immediately transferred to him, and we spoke for a few minutes.

Back in the kitchen the father sat at the small table and mom leaned against the wall softly crying. I stood in the door way watching the child watching TV and said “Would you like me to call 911?” Mom looked at the admission papers and said “I know what they said to you but I can’t sign those.  I just can’t.” Dad held her tight and shook his head slowly. “Let’s ask him what he wants to do,” I suggested. We walked into the living room and more blood splattered the basin. As mom cleaned him up, I sat beside him and said “You’re real sick buddy, and you can go back to the hospital right now if you want to.” I held his hand and he looked at me and then at his mom and said, “No, I wanna be with PopPop.”

Quietly and peacefully that next day, the time came. Yet the love continues. Across the world every day the cycle of life gives and takes.  What remains constant are time and hope that we may share in love with those around us.

Caring Choices encourages the love to be shared, the stories to be told, the moments to be cherished and the questions to be asked. Please talk to those you love today.

© 2014 Caring Choices

Wow!  It’s hard to believe that Caring Choices has been “out there” for an entire year.  One year ago today, August 11, Jim and I began our consultation business to help individuals and families start conversations about advance care planning and healthcare choices.  We’ve addressed some community groups and engaged a lot of people in preparing for conversations.

We have been blogging for 52 weeks and have fielded some really great comments and questions.  We hope that our readers have found some inspiration and motivation in our blogs to begin conversations in their own families.

We invite our readers to continue to share experiences and feedback.  We hope that you will join us on the journey into Year #2 of Caring Choices.

(P.S.  August 11 would have been my Mom’s 88th birthday.  Her life and death have given me great strength in pursuing the work of Caring Choices. I hope she’d be proud of this endeavor.)

(c) 2014 Caring Choices

22 years ago, his soft spoken style insisted I get closer and lean across the bed rail. Despite the odor from the gangrenous wounds and medications, he still made me smile. His touch was so desperate and sincere. His voice was urgent and matter-of-fact. “Please don’t forget to come to my funeral. I don’t want to die and never be thought of again.” AIDS had destroyed him at 28 years old in his prime, once strong, energetic and proud. Now he was dependent on everyone for everything. He moistened his lips and sipped gently on the straw. He knew he would not keep this down either, as with everything he now tried to eat or drink. “It’s worth it” he would say with a smile and apologize once more as I tended to his sheets and clean gown.

He must have died that night, alone in his room. The next day was my day off when I went in to visit him. The busy desk clerk shuffled the stack of papers and said “he didn’t have any friends or relatives so they cremate them. He’s gone son, there is nowhere you can go view anything.” He didn’t even have any personal belongings. Homeless he came into the hospital and homeless he left. And I cried, I felt I had let him down, this stranger I had only just met. All he wanted, all he talked about, all he thought of in his final two days was the possibility he would never be thought of again.

22 years later, his soft spoken style insists I lean in closer to my soul, and remember. No, Steve, you will never be forgotten, not in my lifetime. You taught me so very much from your classroom bed. You taught me to be gentle in all things, to move sheets slowly, to support arms and legs with both hands, to keep the water temperature just right. To laugh, to listen and to never forget that no matter how much you may want some things in life, reality can be very different.

And today I hope he knows. I hope he remembers the day I stopped by to see him and he was gone. I hope he would smile and realize it was never too much trouble to spend that extra moment there, holding his hand. Did he know I was wondering if he was being truthful about the effectiveness of the pain medications I had given him earlier, and still wonder.

Caring Choices is grateful for the opportunity to help with the planning, preparation, discussions and decisions each of us may have to face someday. Knowing the desires and wishes of our loved ones is so much more the issue than any one single act or event. Knowing that someone will continue to remember is often all that matters. It is never too soon, but it may at some point be too late.

© 2014 Caring Choices