The hand no one was holding.
I could always tell when it was Susanne walking past my office, even without looking up. She walked at a slow, steady pace behind her red walker, and she sort of whistled through her teeth while she walked. I would hear her whistling long before I saw her.
Months ago, Susanne received a terminal cancer diagnosis. She was understandably frightened; even when you’re older and death maybe doesn’t seem so far away, cancer is an ugly word to hear. She became more of a recluse, and whether that was from the stress and turmoil of so many doctor appointments, or the emotional strain, I’m not sure. She was always pretty social (at least, she was after she had her two cups of coffee in the morning), but she stopped coming to activities and going out on the bus, then she stopped coming out for meals, and then stopped coming out altogether. A few loyal friends would knock on her door and check on her, but those visits were few and forced.
I’m glad she had a few residents friends who pushed their way in through her closed door and made her update them on how she was doing. You see, Susanne came over from Europe (she was born in Germany) in her mid-twenties, and lived in the States away from her family ever since. She was married at one point, but was divorced when she moved into our community years ago, and I believe her ex-husband had passed away before then. She had no friends, no family she was in contact with, and no children. Susanne was about as alone in the world as you can be, save for her few resident friends.
About a month ago, she had a nasty fall that landed her in the hospital with a fissure in her pelvis. When we tried to contact her brother in Austria, the one emergency contact phone number we had for her, the number was invalid. So my nurse and I stepped in and made countless trips to the hospital to see her, to chat with her, and ended up attending her care conference for two hours on a Saturday with the hospital’s palliative care team to help her decide her next steps.
Eventually, Susanne discharged to a SNF rehab to work on getting stronger and back to walking. It was either that, or discharge back home to us on hospice care. I would have preferred to have her come home and just be comfortable, but the medical folks all agreed she was regaining her strength at the hospital and would probably benefit most from a stint at rehab. Besides, the physician who would need to sign her onto hospice care didn’t feel that she comprehended the implications of hospice (assigned to people with a terminal diagnosis that could end their life within six months), and therefore wouldn’t sign her onto the program anyways. She moved into the rehab on a Friday, and we all shared high hopes that this upward swing of recovery would continue.
I went and visited her at the rehab the next Tuesday, four days later, with our nurse. And I was so disheartened. I felt physically heavier as we walked out of her room after our visit. Susanne wasn’t getting better; in fact, it was quite an opposite swing. She couldn’t focus, she couldn’t hold a conversation, and she spoke in intermittent sentences that often drifted into silence halfway through. She wasn’t up and in a chair like she was at the hospital. She was sitting up in her bed, but still bed-bound. Our nurse looked at her charts and noticed her sodium level was low. That can cause behavior to change, she assured me, but I still struggled to maintain my composure after we left Susanne. I think that was when I first started to entertain the thought that Susanne might not be coming home.
I continued to visit her, and her resident friends back home always asked me for updates. At first, when she was in the hospital, I was very honest with them about her recovery, but as she struggled in the rehab, I started updating them with broad, generic answers. ‘She looked good today, yes, I read her your letter, she didn’t give me a response, maybe she was just tired, no, I don’t think they’ll send her home today..’ Susanne had given me permission before to update her friends on how she was doing and when she’d be returning, but how was I supposed to tell them she might not be coming home at all?
I checked in with the social worker at the SNF, and she pumped me for information about Susanne – next of kin, funeral home preference, emergency contact, etc. I gave her my short list of responses, and answered the rest with ‘we just don’t know.’ She was a Medicaid resident, which meant the state was paying for her to live at our ALF, and she was deemed cognitively capable of making her own health decisions prior to the fall that landed her in the hospital, so there was no one we were sending a bill to, and no one we questioned about her care. When the social worker told me she needed an emergency contact, I didn’t know what to say, so I gave her my personal cell phone number and said to list my name as Susanne’s friend. That probably crosses a patient-employee line somewhere in the HR handbook, but what was I supposed to do?
I went and visited her multiple times that week, including Friday, exactly a week after she was moved to the SNF. At that visit, she had the ‘death rattle,’ which is a raspy noise that can often be heard when someone close to death is breathing abdominally. The med-tech administering Susanne’s medications told me offhandedly their nurse practitioner had stated the night before that Susanne was actively dying, and what I saw on Friday confirmed that. I read a letter to her from another resident, held her hand, and talked with her about the weather and the events going on back home at the ALF. At that point, I have no idea if she knew anyone was there or not, but I did everything I could think of. I told her she didn’t have to worry about cancer, and she didn’t have to fight anymore, and that she was free to rest. I don’t know if it did any good, but I tried to let her know she wasn’t dying alone, despite the fact that the last visitor she would have was me, someone from her facility who was paid to visit her.
I was at the gym that night and saw a strange number come up on my phone, and I instantly knew. Sure enough, a methodical, emotionless voice came through my phone. ‘This message is for Tracy, hi Tracy this is ___ from ___, and we have you listed as the emergency contact for Susanne ___. She did just pass away, and I wanted to know what you’d like us to do with her personal effects. If you could give me a call at…’
Death is a part of working in an ALF. I saw my first dead body working in this job, and I am the one who tells residents that their friend passed away (which is what I ultimately had to do with Susanne’s friends), but it doesn’t make it easy, and this one was especially difficult. I made the calls I needed to make, contacted the people I needed to contact, and then when I had a moment to actually think about it, I broke down crying in the middle of the hallway outside my gym. She and I weren’t especially close, but that was what bothered me the most. She didn’t have anyone else. She died alone. I beat myself up for a bit – I should have stayed with her longer, I should have visited her more frequently, on and on. But ultimately, even when we know it’s coming, we can’t predict death, and I couldn’t have been there at the exact moment she passed. And even if I had, she might not have known I was there.
The picture at the top is our hands in the SNF the day she passed away. The picture below is from the following Monday when I went to the SNF and picked up her personal effects, and a small orchid I bought to put out by the ‘In Loving Memory’ sign I made for our ALF. There isn’t much redemption in this story to make it have a happy ending, but my take away is that if I one day pass from this life, and there’s a hand holding mine, and it’s attached to someone who loves me, then maybe that’s enough. Maybe that’s when we can relax and just let go and rest. And hopefully that’s something I did for Susanne.
