This was written a few years ago. As a podcast at the time. I wanted to come back to this moment in time. The moment when the automatic doors opened and we entered the hospice unit. To note the fear and silent courage we both faced and accepted.
As the doors closed behind us with Donna on a gurney my first impression was shock. As if this whole tracking experience wasn’t shocking. Less about the unit but the idea of it. Hospice is hospice and we all come to it with some preconceived notions and attitudes. Yes it’s the end of the line. Not like the second Donna got her dx we didn’t harbor the fantasy magical unicorn rainbow belief that there would be a happy ending. I remember the overwhelming silence both of us lost in our thoughts when we knew Stage IV cancer six months to live. Not really fear just a weighted blanket of sadness. Entering the hospice unit is less about the place and more about how would this play out for how long and in what capacity.
The staff — it’s all about the staff people humans, because the magic of science is gone, supplanted by the caring and support of people. People who make this horrific tragic sad painful end of life for both of us bearable and surprisingly hopeful and comforting.
The physical plant was fine. It was older but clean and comfortable the room had windows where light could enter and the end would come. And I guess looking for wainscoting was not a priority.
Right away the nurse in charge came and spoke with us. Details? Not sure I remember I was introduced to other members of the staff, Donna’s PCA, the physicians, the social workers, and clergy. But I remember the one person who stood out as key for Donna was the PCA who would be doing the majority of the care and the nurse who was there to make sure her extensive experience and expertise were brought to help Donna. And me.
The unit within the hospital was always open and accessible. Anytime day or night I could enter from any door in the hospital. All I had to say I was going to the hospice unit and there was never a question or concern. I guess everyone knew that I and anyone else going to the hospice unit was one of the walking emotionally dead. I would try and stay with Donna for the day return home to feed Nina and giver her her insulin and return. This became my routine along with getting a slice at pizza joint on the way home. And there was the park that I had to walk across with a fountain on the way to the subway. Green cool a place to sit and think for some. For me a reminder of where I was going or coming from. Not sure I even knew where I was. But once in the unit I would sit with Donna talk to her mostly. Not sure she had much to say. She always lived in the harsh reality of daylight. And her daylight was fading to black. I was trying to talk with her about EOL her wishes and plans. in such a Donna way she said “Stop being a maudlin pussy.” I stopped. I would bring her items make sure the staff was on top of her needs as if I knew what they needed to do. Frantic hand wringing was the sum of me in hospice. During this time the effects of WBR(whole brain radiation) was taking its toll. She was having sun dower syndrome with bouts of delusion in the evening. Calling me on her phone asking me what I did with her phone telling me she lost her glasses which she was wearing…. yeah heartbreaking. I would rush back to be with her.
During this time the staff both nursing and physician would comfort me tell me that this is to be expected. They would tell me how they were adjusting her meds and what was going on clinically. I was part of the team but in a bigger way I was relieved of my caregiving duties and could focus on being with Donna. Yet those who know me know I’m a control freak and taking charge was going to win over watching. I had to know what was going what was being done what more could be done. I was respectful but active in her care. And they the staff the people the humans who were caring for her were caring for me in a very big way. Thats what they do…We may be lost and focused on the loved one, yet they see the full spectrum of the patient in 360 degrees.
I asked about being there when the end came and very clearly a physician told me that’s hard. It’s missed by most because it just happens and there are few signs to say now is the time. That assuaged my fears.This is what happens in hospice they leverage their clinical knowledge to care for the patient but focus their attention on our needs. The needs of the loved one the family the spouse they want us to succeed if that is a word, to succeed well after her death. Perhaps the better word is adapt. They want us to adapt. The message here is access these HCP experience knowledge and support they will do cart wheels for you and the patient if asked.
On Wednesdays the unit somehow was able to choral local restaurants to come in and serve dinners. These restaurants were not Arby’s or Micky D’s they were 3 star well regarded eateries in NYC. The reality is most of the patients were not eating so this service was for the family members, the loved ones, visitors and the staff. It was good to have a home cooked meal and not a slice running back and forth to the unit. And in a way you had the chance to break bread with others. Even if you didn’t share you were there together in this common moment of grief fear and sadness. You weren’t alone. And I was able to have Donna’s friends come and get a meal while visiting her. Her friends rallied to her side and mine.
Let me assure you this is not all sitting around a camp fire making S’mores and telling stories. About week to 10 days in I was showing a nurse some pictures of Nina our Westie. The nurse said “You know you can bring Nina in” WTF they tell me now when Donna is hardly alert and awake Sweet But I did bring Nina in and she slept on Donna’s bed and was visited by the staff. I guess in the end it was okay. But I was pissed.
At about the same time Donna was having difficulty swallowing. I kept giving her sips of water. A resident or fellow saw me and told me to stop nothing PO. This was late Tuesday AM all day I could see Donna was struggling and wanted water I was giving her ice chips but it was not working well at all. That night and the next morning you could see it on Donna’s face how she wanted water. To this day that image remains. I am sure have been a d-bag husband at time but this was full on in my face reality. I was killing her in my mind. Luckily that morning there was a grand rounds with the director of palliative care and a few residents and fellows. I knew my place I stood and listened and then I just said, “Can I give Donna some water? I was told not to but please can she have some water” The director asked me who told you that? I pointed to the resident fellow dude and the director turned and if looks could kill… She said to him in no uncertain terms get me a cup of ice water and a soft tooth brush. The director proceeded to wet the sponge of the brush and put in donnas mouth. You cannot image the smile she gave everyone and the joy in her eyes from that simple small moment. I see it as I speak about it now. Finally for the first week the social workers clinical staff the Rabbi all spoke to me in the hall. Or I grabbed them in the hall and we talked and that was that finally I said one day to the social worker “Do we always have to speak in a crowded hall?” She was shocked and realized I was never offered a room to sit and be alone or talk… well she found one.
The take away from this is you we need to be less a caregiver and more an advocate asking questions learning and understanding what we can to be better at being their for our loved ones. Move from caregiver to loved one. The staff and everyone is there to help you and the patient so to get that help we need to say help. Scream help perhaps. Speak, they will not just hear but listen and act in the patients and your best interest.
Finally Donna’s PCP and her oncologist stopped by to review her chats speak with the clinical team and speak to me. I just accepted that as what happens but it wasn’t until a year after that I learned that NEVER happens. And this is not about me or Donna but that fact the team from the day she got the dx to now were an integrated team and they were part of her care whether it was their role directly and responsibility or not. It also I would like to believe speaks to the relationship Donna and I established from the beginning. We respected them and worked with them but we spoke up and participated and were engaged. They knew us not as a chart but as Mark and Donna with real fears and emotions. Okay who am I bullshitting they were consummate professionals who did this day in and day out but it felt good it felt loved supported helped valued. And guess not everyone gets this, we still have a fragmented EOL system even with hospice in place but it is changing. (Update: More home hospice which has it’s own set of problems)
Hospice is about dying well. There is no good death any death is bad and painful but dying well surrounded by friends family loved ones changes the dynamic for both the patient and the family. It makes the time to the finite end better and kinder and comfortable but more important is the time after death. That is our long darkness the time after death of a loved one. Our memories are of what we lost and fear and suffer over. For many of us it’s grief that is unfathomable and relentless yet for me and my experience with hospice and Donna’s entire spectrum of care I had memories that gave me hope and kindness and friends and family and a team that was there for Donna first and me as well. They were there to help me because they knew I was to live as much as I didn’t want to (still don’t) but thinking about the time during her care and hospice I reflect on what was not what wasn’t.
I’ve said about Donna and her illness, Courage is not the absence of fear but the presence of dignity in the face of fear. The team who cared for us and hospice treated us with dignity and helped us remain that way even during death. Hospice saved my life.