This is a guest blog by Abbey Wexler a well respected professional colleague of mine discussing her personal experience with hospice and loss. This post is not my usual drug and alcohol or addiction post but I find it moving and informative and extremely well written. Abbey is an Adjunct Instructor in the Counseling Psychology Department in the Schools for Graduate and Professional Studies at Rosemont College and also an Administrator and Adjunct Instructor in the Psychology Department at Community College of Philadelphia and she is also a Certified Hospice Volunteer.
Living amid a serious illness of an immediate family member or close friend is a different kind of living. Most of us feel stress in our daily lives over the common things: Why did my boss speak to me like that at work today? How can I get my kids to stop fighting? What made the gas bill go up $200 this month? When there’s a serious illness, these common daily annoyances that have the potential to get us quite upset, somehow seem to fall out of the forefront of our brains, to make way for the new duress. Life becomes consumed with the unknown. What’s the diagnosis? How will this be treated? Why did that machine make a loud noise? Did she sleep? Did she eat? When will the doctor call me back? If you’re not in the medical field, you are navigating your way through a whole new language. You are forced into an immersion class of new terms, symptoms, opinions. You are sometimes given minutes to come up with what you want to ask, and so much of your energy can be used up on this that the answers don’t even make sense. The whole thing is loud, confusing, foreign, intimidating, worrisome, sad. You can feel like you are making the right decision and then another opinion comes along that makes you doubt. Or let’s say a transfer is needed to a different health system. Updating, monitoring, and advocating for the patient becomes a full time job. All this is happening while you are dealing with the fact that you just had a birthday and your loved one missed it, or that your son was in a school concert and the seat next to you in the audience was empty. It’s too much.
We’d like to blame someone for the nightmare we are in, but it’s not the fault of the doctors , nurses, therapists, technicians. They are wonderful people doing their jobs the best way they know how. It’s not the fault of the patient. She didn’t mean to get sick and turn your world upside down. Maybe it’s the fault of the American health care system in general, but if I compare our system to some countries in this world, I feel grateful to have what I have. So there’s no one really to blame.
Luckily humans have survival instincts. We somehow manage. We show up. We sign papers. We carry lists of medications, visit rehab facilities and shlep clothes back and forth. We get into the groove, and we don’t stop until someone or something forces us to. And then, someone or something forces us to.
When you hear the words for the first time, you can immediately get angry at yourself or another family member. You can become angry at the doctor. You can deny. You can selectively hear or completely tune out. “There’s no chance of recovery.” “She’s not gonna make it.” “I’m sorry, but there’s nothing more we can do.” These words circle around your head. They punch you in the stomach. They send you in a rage. To hell with learning the new language; where did it get me? To hell with manners, what do you mean there’s nothing you can do, god dammit? There’s always something you can do. Do SOMETHING.
These are all of the things my family felt during my Mom’s 2.5 month illness. We shared chores and racked our brains and rallied like crazy, but there was nothing anyone could do. I remember sitting in the hospital conference room with her “team.” Before I went into the meeting I said to my sister, when the team wants to meet with you it’s never good. They are too busy to meet for a good reason. We held hands going in. Then, one doctor left to get tissues. A meeting, in a hospital, that requires tissues also isn’t good. Then the chaplain walked in. A meeting with the “team” that requires tissues and a chaplain? Far from good.
We went through something called a DNR. We talked about her “affairs.” There was some kind of conversation about her living the 2 months they predicted she had left, in a panic, delirious and on a ventilator. There was a re-hashing of why surgeries were done, what meds were used, how her body reacted and broke down. She was suffering, in pain, and wanting it all to end. Then I realized we had reached a crossroads. A dilemma. Were we keeping her alive just to live in pain and in suffering? At least she was here. I could look at her. No, she didn’t look like herself, but she was in there somewhere, and I could visit. I could tell her that my 10 year old won the pine wood derby at cub scouts or that my 8 year old lost a tooth or that I bought the cutest new outfit on sale. No, she couldn’t respond, but I could tell her anyway. Then I remembered what happened the day before. I had come on my lunch hour to visit. I got to her room to find 7 people around her. There were very loud noises. Her voice screaming! She had been on a trach for weeks so I hadn’t heard her voice in a long time, and it startled me. “Help me! I can’t breathe! I’m dying!” These were her words. She was in a serious panic. She was physically hurting and she was so scared. Someone, a kind nurse maybe, saw me at the doorway and motioned for me to come in. “Bless her heart” I thought. “She is letting me in!”. “Hold her hand, say calming things, remind her who you are.” Nothing seemed to work. She kept screaming. Finally, the air leak that had developed in her trach was patched. She was given an injection; she was breathing calmly again. As I was sitting in the team meeting flashing back to that whole scene, I started to put it together. She is going to die, and it will be in a panic, in pain and scared. I’m being selfish by prolonging this suffering. I need to change my thinking.
Someone in that meeting said the word hospice. It was that word that pulled me out of my flashback. I looked at that team, and my anger did a 180 and became gratitude. I got it. You did the very best you could with what you had, and now you want her suffering to stop. SHE wants her suffering to stop. This is what you are trying to tell us. To the right of me was one of the main doctors. She had her arms around me, and I hadn’t even noticed. The doctor across from me had such pure sincerity and care in her eyes that I felt humbled. Peace. Give her peace. She wants it; she deserves it.
My dad, sister and I looked at each other and knew what we had to do. We had to be more selfless than we had ever been. We had to give her the opportunity and permission to die in peace.
The way it worked at this hospital was that they would take her off of the ventilator. If she was still alive after 1 hour, she would be transferred to the hospice floor. We would determine the time they removed the machines and who would be in the room. We would have time to talk to her, sing to her, say goodbye. Our entire family came. There were 11 of us – even the grandchildren, except my youngest who chose not to. We brought her favorite things. A prayer shawl, pictures, her favorite cookies. A rabbi came and blessed her, and we all sang to her. I will never forget that hour. She hadn’t been conscious in days, and when we sang her favorite hymn, her lips began to move as if she was singing along. We said, ” We love you. We will be fine. We will take care of each other. We will love each other the way you showed us how. “
She lasted the hour and made it upstairs. I stood outside the double doors of hospice for what seemed to be a long time thinking “Do I really have to walk in? How did I get here? This is where she will die.” As they settled her in, we waited in a beautiful lounge area equipped with some comforting things. There were games, a kitchen, soft furniture and a fire place. There was a children’s room with a computer, big TV and toys. With nothing to do but wait until she was settled, I looked around. There was an office that said “social worker” on it. What the hell. I’ll take whatever help I can get. My 10 year old son was with me, and we knocked on the door. I swear a smiling angel answered it. She had a calming demeanor and a sweet face. I felt something inside me relax a little. “Hi. I’m Abbey. My mom was just brought up here. Do you think I could talk to you while we wait to see her?”. “I’m Suzanne. Of course. Please. Come in. And who is this handsome young man with you?” “This is my son, Riley. It is his grandmother that is here”. She closed the door and we sat. She offered him juicy fruit gum- one of his favorites. She listened to both of us. There were no big words. There was no rushing through a conversation. We just talked. She spoke our language. What a relief. Riley did not want to leave the hospice. He wanted desperately to be part of the experience. I didn’t know the right thing to do. Do I shelter him from life’s pain? Do I expose him to death and dying at such a young age? I have a Masters degree in Counseling Psychology, and I still didn’t know what to do. I knew that in hard times we must show our kids that we don’t lie to them, that we stick together and that we will be okay, but does this include the death of a dear Mom-Mom whom he adored? I couldn’t think.
I asked Suzanne. She said, why don’t we ask Riley?” Yes. Let’s ask Riley. Duh. She asked him why he wanted to stay at the hospice. What was important about it for him? His answer bowled me over. “I want to know Mom-Mom from the minute I’m born until the last possible second I can.” Oh my. I cannot take that away from him. “Stay. Of course Riley, you should stay.”
The next 3.5 days were life altering. I have to admit there was a lot of laughing. You’d think it would be a somber ordeal, but we used the opportunity to remind my mother and ourselves of the antics, the parties, the milestones, the funny situations we found ourselves in over the years. With the removal of the ugly noise, the medical language, the tubes and wires and painful dressing changes, we could be ourselves. And finding humor in life’s craziness is who we are. That’s who my Mom was. The nurses would come in, and we’d stop. We’d quiet down and act somber. Maybe we were doing hospice wrong. Maybe we were too loud and disturbing other grievers. “No. Don’t stop. Please keep doing what you are doing.” There’s nothing wrong with reminiscing and laughing. She can hear you, and she loves it. Any mother would.” We let the guilt dissipate and went about our business. We got coffee, played games on our phones, checked the hundreds of thoughtful messages on Facebook. We listened to voice mails from friends and family offering love. We made calls, and we were together. We all have busy lives with tons of responsibilities, but not during those 3.5 days.
There were many difficult moments. Nighttime was the hardest. Should we leave? Should we sleep there? What if she dies at 3am and no one is with her? The nurses were amazing. Christy and Anne in particular. They told us “There’s no wrong answer. There’s no guilt. This is her decision and if she wants you here, she will wait. If she wants to protect you, she won’t wait. You don’t have the control. You can’t choose wrongly.” This was a relief to hear. Having come from 2.5 months of making difficult decisions and not knowing what was right, this was a big load off.
There were moments my anxiety got the better of me. I had received a voice message from my younger son’s 2nd grade teacher. Something about his reading skills. I immediately thought the worst. He’s going to be left back. He won’t succeed in college. I called the woman back and left the most irrational, crazy message. I jumped to all the wrong conclusions. I was on overload and needed help. I knocked on the social workers door. Brian, this time. He told me this was normal. Whatever I was feeling was okay. Let’s talk through the feelings. I calmed down. It helped.
The morning my mom passed away I had gotten there very early. I had some things I wanted to say to her on my own. Suzanne knocked on the door. She hadn’t even changed into work clothes yet from her long commute. She came right in to see me. That made me feel special. “Her breathing is so labored.” I told her. I’m losing her. I’m losing my mom.” She listened. She watched me cry. She told me my mom was incredibly blessed to have such a beautiful and loving daughter. She showed me genuine human kindness and gave me peace at the very worst time of my life. How do you properly thank someone for that?
The moment of death- the very second I feared the most- came. We watched. We held each other. After she took her last breath, somehow a staff member found out, and suddenly there were 10 people in the room. There was no chaos though. They were there for us. One of the nurses used a stethoscope and listened for her breathing. She looked directly at me and said, “I’m so sorry.” I broke down. I cried harder than I can ever remember crying. I grabbed my sister and squeezed. I heard someone calling my name. It was Suzanne. I grabbed her. “She’s gone. My mother is gone.” “I’m so sorry, Abbey. Know that she will always be with you. I’m so, so sorry.”
When we were about to leave the hospice I went around and thanked everyone. The nurses who lovingly kept her comfortable, the chaplains and Brian who heard our sob stories, the rabbi who visited and sang. Her doctor even came up to hospice to see us, and I thanked her. Then Suzanne. She hugged me. She told me about the child bereavement team and the extended counseling services I could use. She told me that I was an amazing person, a wonderful mother and a caring daughter. I thanked her for all she had selflessly done for me and my family. I told her the experience changed my life. The whole damn thing. The massive heart attack and subsequent surgeries that started it all. The immersion into medical lingo, the running, the decisions, the tissues at the team meeting, the juicy fruit gum. It all played a part. Of course the hospice experience and the staff had a huge impact. The generosity of their hearts and the genuine kindness they showed us changed my life forever. I realized we were fortunate to have been able to experience hospice. Not everyone gets that chance. It made me more empathic, more aware, more connected.
Of course, I miss my mom terribly. But I can have good days and happy times amid tragedy. One does not preclude the other. I can laugh in a hospice room. I can come through an anxiety attack. I can talk to my kids and make good decisions together. I can endure. I learned those lessons about myself. I have found a certain depth of gratitude and humility to complement the sadness. This would make my mom so proud. At the funeral I told the large crowd of people that I would do my best to love big and unconditionally like she taught me. I told them I would grasp life the way she did, and make people feel welcomed and cared for. I may still groan at the gas bill, but it’s so much less important. My time is better spent laughing and watching my kids’ antics-planning parties, enjoying milestones and continuing to find the humor. These are the things she taught me both in her life and in her death. This is her legacy. This is what I will pass on to my kids, and how I will honor her. Living life amid a terminal illness of a mother is excruciating, but somehow there can be rewards, lessons, laughter and gratitude on the other side.
Adjunct Instructor, Counseling Psychology Department in the Schools for Graduate and Professional Studies at Rosemont College
Administrator and Adjunct Instructor in the Psychology Department at Community College of Philadelphia
Certified Hospice Volunteer