Hospital, Hospitalist, and Hospice

Today in 2014 was a long and stressful day, with our hopes of mom returning home from the hospital shattered by the hospitalist. All of mom's specialists had released her, and dad and I were hoping to pick mom up about noon. But then we heard from the hospitalist. He took one look at mom's legs and refused to sign her release. She had developed cellulitis, and a return home without treatment would have spelled disaster.

I had mentioned the other day about how I was trained by mom's home health care on how to massage mom's legs, ankles, and feet to help relieve some of the fluid build-up pressure. Not only did this practice help relieve some of her discomfort, but I could also look for open sores, scratches, or other issues that would allow bacteria to enter and cause an infection. When this happens, cellulitis can develop. Left untreated, the infection can spread to the lymph nodes and bloodstream and rapidly become life-threatening.

Mom didn't allow me to massage her legs in the hospital, and that refusal turned into more days in a bed away from home. Her weak immune system and arterial issues, along with pressure of fluid build-up against her skin had taken its toll, and now she had an infection that was very dangerous, as in her condition cellulitis could lead to septic shock. What was difficult to hear was that now that she had that condition, it could occur again often and very quickly without keeping watch over her legs.

The image shown here is not of my other's condition (in fact, it looks like ringworm), but her cellulitis patches looked just like this--something that might be easily overlooked. I carry so much gratitude for the hospitalist who saw several of these patches and knew it for what it was. That cream was also in mom's future, as I was later designated as mom's "cellulitis watch", and I applied the cream to her wounds as well as massaged her legs and cut her tonails and did a number of other chores that helped her keep infections at bay.

After meeting with the hospitalist, we also agreed that, perhaps, mom needed to sign up for hospice. Of course, that didn't sit well with mom, either, as it was one more step toward acknowledging that she had a terminal illness. I remember meeting in the hallway with dad, the hospitalist, and a specialist who was called in to look at mom's legs. We decided the best way to handle the situation was to tell mom that dad and I couldn't administer the intravenous antibiotic mom required to treat her cellulitis. The nurses from hospice could, however.

The people we met from hospice (Centra) were wonderful. They helped mom to understand they would be better than her current visits from Home Health Care, because they had staff who could work with her port (which was installed in 2013 before her first chemo treatments), as well as the antibiotics. If she chose hospice, the hospitalist added, she could return home in one or two days as opposed to another week in the hospital bed.

I can see that whole scene clearly even today. With everyone surrounding her bed and taking turns talking to her, it reminded me of an intervention...and it was, truly. We only wanted what was best for mom, and I think she got that message. I wrote that she was in good spirits at the end. Dad and I were less optimistic. Events were cascading, and it made us feel as though the end was very near.

Fortunately, we were wrong.

The oncologist and the cardiologist agreed that chemo wasn't an option at the moment, as those treatments aggravated her heart. We could only guess at what those treatments were doing to her one kidney. While a few friends and even her oncologist were concerned that gaining hospice meant losing chemo treatments down the road if her health improved somewhat, their fears were unfounded. As hospice explained, the chemo would be for palliative care, not for a cure.

That was another harsh reality.

Through it all, mom held up. When we left the hospital, she had a smile on her face. The only hint as to how she really felt was when she asked that we refer to hospice as "dad's help." That way, the use of palliative care wouldn't seem so hopeless for her.

Catching Up With Myself

I didn't see any journal entries or other information about my mother for this week in 2013 or 2014 until this morning when I delved deeper into items I saved in various folders. I found a couple notes that I want to post here so I don't forget them when it comes time to edit this whole shebang.

On January 4th, 2014, I had a sneezing cold, so I couldln't visit mom in the hospital. I think I caught the cold when we were admitting her, so staying away probably was more for my benefit than hers. I did mention that I had masks, which was an unusual thing to have before 2020.

Also on that date I was more specific as to my mother's definition of pain. I wrote, "It appears "pain" is long-term constant hurting. "Hurting" is temporary until it becomes "pain." So when my mother's doctors asked her if she was in pain, she always responded in the negative. No one bothered to ask her if she was hurting.

I said it before, and I'll say it again. My mother could be difficult. When I learned the difference between the two words for her, it made it easier for the doctors to understand. When they would ask my mother if she was in pain and she would say no, I'd look at the doctor and say, "Now, ask her if she's hurting." My interjection would anger my mother, but it helped her in the long run.

Another thing that didn't help mom was the lack of communication among her specialists. At that time, we didn't have "MyChart" or any other way to deal with multiple specialists viewing what other specialists had discovered. I was my mother's advocate, and I would inform each specialist about my mother's health history between her visits to the oncologist, the cardiologist, and the nephrologist.

Being my mother's advocate was a lesson in many things, but the main thing I learned was to love myself first. If I didn't feel loved, then I couldn't deal with my mother. She disliked having to depend upon me, too, but she did. 

Third Day in the Hospital

Today in 2014, I visited my mother in the hospital. This hospital stay, which was supposed to be a "day or two" according to the cardiologist, was now into its third day. I wrote, "She smiled. 😊 She's in good shape this morning, except for those durn legs..."

I still have that visual in my head, of me standing at the foot of her bed and asking her if she wanted me to massage her ankles and feet with lotion. That was one of the procedures I learned to handle her edema when taking care of her. I can still see her legs and ankles, all swollen and slightly purple from the fluid retention. Again, when I asked, she said she wasn't in any pain. And, no, she didn't want me to massage her legs. 

She changed her mind later, after the doctor arrived and told her that I should be massaging her ankles and feet at the very least. That's how she rolled, my mother. Not doing anything for herself unless someone in authority told her she should do it.

The edema causes were multiple in my mother. Known a century before as dropsy ("she was a long-sufferer of dropsy"), this medical condition causes the patient to exhibit tight skin, a feeling of heaviness in the area affected, joint stiffness, skin discoloration, and difficulty moving. In my mother's case the edema came from her cancer, of course, but it also came from specific failures wrought by that cancer. Those included heart failure, kidney issues (she only had one kidney, and the previous chemo treatments affected the strength of that organ), liver problems, and some medications. The liver problems stemmed from the advancement of the tumors from her bile duct into her liver. This issue also was the root source of her ever-present jaundice.

Our efforts to stem her jaundice were daily rituals that included cleaning the catheter that was inserted into her bile duct to drain the bile, and to replace the bag that collected that bile. I'll write more about those routines as I come upon those journal entries.

While in the hospital, she was hooked up to various fluids. I don't remember all of them now, but I'm certain one of them was Lasix. She was still receiving small doses of that medication to try to ease the fluid retention. We were never fully successful, as "she was a long-sufferer of dropsy" until her demise.

Photo is from Canva.com.

The Weather

On this day in 2014, I taunted my friends on Facebook with this message: "Hey La Grange -- ya'll stay warm, now, hear? 😆" I obviously was in Virginia and not at home. And, it seems the weather was about to get real in Kentucky.

But, that weather went back and forth over the years as I took care of mom and then dad. I was lucky not to get caught up in really bad weather, although sometimes it rained so hard I had to pull over. I'm talking rain that my windshield wipers couldn't handle.

The only time I encoutered bad roads was on this day in 2016 on my way home from visiting with dad. The photo shows a picture I took from inside my car. No other cars or trucks around me at all. I was on I-64 west close to Dawson when the snow came "raining" down. I was able to stop in the middle of the road to take the photo, because I guess everyone else got a warning that I didn't hear. I made it home safely.

Today in 2025, Kentucky is about to get whacked with yet another ice storm. This one should be short-lived, though. Here's to no power loss! Hope everyone else stays safe, too.