When you first enter her home, the first thing you would notice is the hospital bed right in the middle of the living room.
Her family converted the living room into her room—with a TV at the bottom end of the bed and a nightstand on to her left-hand side which is filled with the patient’s needed supplies and medications. At the foot of the fire place you can see even more supplies such as adult diapers and more.
I made my way over, introduced myself and asked her how she was doing. In a very hushed and timid voice she was able to push out a, “Nice to meet you.” However, she could hardly keep her eyes open and that’s when I found out that her eyes were closed shut most of the time.
Remember how I talked about the fireplace?
At the other end of the fireplace, you wouldn’t miss the small stand filled to the brim with about 20 or more medals and sashes.
From a distance, you can make out some of the medals and the sashes that have written in large fonts that read “5K finisher.” Some had on them printed “Long Beach Marathon” with the remaining of the text covered by either another medal or another sash.
Out of curiosity I asked her, who’s are those?
In a very soft and fragile voice she uttered, “those are mine”. Stunned, all I could say was, “Really?” It was very difficult to imagine someone who was very active, who ran a 3K, who ran a 5K, and was participating in marathons just a few years back—could end up in a hospital bed immobile, motionless, and without the ability to even lift her toes.
The only movement I thought she was able to make is when she needed to scratch her nose—but even that looked so uncomfortable and problematic. Her hand was shaking as she raised it moving it towards her nose.
Out of nowhere that soft and fragile voice uttered,
“That makes it harder and depressing” and continued on to say, “I was doing all of those before and now look at me?”
I did not know what to say or how to react to what she had just said. Instead, I said, you can never tell.
She just looked away. So, I proceeded and let her know that I will start with the session and will take her vitals.
It took me several tries to check her O2. Because the level was reading really low, I had to jump to different fingers.
So, I threw in a joke saying “your fingers are still sleeping, and they are cold—we need to wake them up and warm them up.”
To that she replied, I’ve always had cold fingers. My husband even made fun of my fingers, that I don’t have enough blood in my body. I guess he was right all along because look at me now.
I just took a deep breath and was at a loss for words for what to say yet again.
I started the exercise and was at the point where I was stretching her lower extremities, when she opened her eyes and just stared blankly. “Are you ok?” I asked.
She just nodded and said, “it’s just the stiffness on my right neck.”
“Besides that, I am ok.”
Immediately, I shifted my attention to her neck just after we finished the stretching exercise. I continued chatting and asking probing questions about how, when, and why the pain started to begin figuring it out and getting the big picture to understand her discomfort.
Her 24-hour caregiver helped by narrating how she positions her when watching TV or feeding her. We were able to find out that it was her bad posture that was causing it.
You could see the pain and discomfort in my patient’s face, and every time her head moved you would see her eyes squint.
So, I gave a soft tissue massage to provide relief to her calvary-like pain in her right neck. As I was performing the massage you can see it on her facial expression that she was feeling relief.
I continued with the massage for about 20 minutes, releasing the tension, and with the goal to impart a sense of calm on her stiff neck.
To my surprise, out of nowhere she said
“Thank you. Your massage really helped. I don’t feel that much pain on my neck now.” And she uttered with a smile on her face, “I can get used to that”.
I just replied and said, “I can teach your caregiver so that in between my visits she can provide you that soft tissue massage.”
From there, I provided detailed instructions to the caregiver—which included proper body mechanics that would help better her posture and avoid aggravating pain in her neck or her body in general.
As I was discussing the instructions to the caregiver, she interrupted and said to her caregiver we need to see to it that we do that.
As I was about to end my visit, I can’t help but to notice her blank stare again.
A plethora of thoughts and things were running through my mind—like what can I do to put a smile on her face? Like how she smiled when she uttered that she could get used to the massage.
I stood up, said my good-bye and informed her of when my next scheduled visit would be and turned around to leave her house.
As I walked towards the front door, the caregiver whispered in a gossipy tone, like nobody else was supposed to hear, with her hands cupping the side of her mouth, to tell me that
“Her niece is putting her to hospice”.
I walked myself over to my car, got in, sat and paused for a minute and thought about what the caregiver decided to let fall on my ears. I found myself pondering over the same repetitive question—asking myself, “is that the best thing that she needs? A palliative care?”
I decided to drive home and tried not to think about it too much.
Time came and went. Come Monday the weekend after I had met my marathon champion patient, we had our usual staff meeting. In that staff meeting, it was confirmed that this once extremely active and accomplished woman was really going to Hospice.
That meeting really made me think,
what must have been running through her mind when she knew that she was going to be placed in Hospice care? Did she have a choice? Did she just say “what the heck, I have no choice?”
I just find it incredibly sad that at the terminal stage of our life, someone else gets to decide for us. I just comforted and told myself that at least the Hospice company is the same company I work for. That gives me the peace of mind that she will be taken care of and she will get the spiritual and emotional care she might and will need.
As someone who works in Home Health, my team and I always want to see our patients recover and find comfort and good health. We provide treatment in such an attitude as well. However, as is the natural progression of things, I know that sometimes it is inevitable that some patients are beginning their decline and that there’s not much more we can do.
So yes, we do find a sense of relief knowing that Hospice will be their support to help them through the end stages, but it never really makes the process easier of knowing that your patient won’t be recovering, and that eventually you do have to say good-bye.
Written by Wilson Comahig, PT. Edited by Vaishnavi Mahajan for clarity