My husband was recently hospitalized for complications related to his Parkinson’s disease. I took him to the emergency room one morning, and he didn’t leave the hospital for over four weeks. As my husband said once it became clear he’d be there for a while, “I went into this as a volunteer, and now I can’t get out.”
Neither of us had experienced a lengthy hospitalization during our marriage, so this was new territory for both of us. Here are some things I learned:
1. Once you’re in the system, you’re at the mercy of the system.
The hospital staff had the best intentions, but their processes sometimes made life harder for patients. For example, my husband was labeled a fall risk—and he truly was when he was admitted. But even as his condition improved, the staff remained so afraid of a possible fall that they kept monitors on him far longer than I thought necessary. Yes, he might have fallen, but in my judgment the risk had become acceptable. Hospital personnel should not be incentivized to avoid falls so aggressively that they limit a patient’s recovery.
2. Hospital scheduling doesn’t let the staff get to know patients.
I don’t think my husband ever had the same nurse or aide two days in a row during his stay. That meant no continuity in understanding his medical needs or personal routines. I repeatedly explained to each new nurse that Parkinson’s medications must be given on time—every time—not within the two-hour window their system allowed. I raised this issue with the rotating doctors as well. Each doctor acknowledged the importance of timely medications, but their instructions did not seem to override the nurses’ procedures.
3. The system is not designed for efficiency.
Even during a period when my husband had an aide stationed full-time in his room to prevent him from getting out of bed, his medications were still given late. Why? Aides are not allowed to administer medications—only nurses can—and the nurses were busy with other patients.
4. The staff appreciated my help.
I visited my husband every day, usually for two to four hours. While I was there, I functioned as an unpaid aide (helping him when staff weren’t available) and as an advocate (asking about late medications or calling for assistance when I couldn’t help him myself). I tried to remain pleasant, even while pushing back when necessary. Because the staff was always stretched thin, they appreciated having one patient who pressed the call button less often than he otherwise might have.
5. Every patient needs an advocate.
The doctors and nurses caring for my husband said they had experience with Parkinson’s patients. Still, they treat many conditions and are not specialists in Parkinson’s disease. Over the past decade, I’ve learned a great deal about Parkinson’s—the commonly prescribed drugs and potential side effects. And after 48 years of marriage, I know my husband. I can tell when his behavior is normal for him and when something is wrong. That knowledge allowed me to be an effective advocate.
6. Ask questions—and keep asking until you get answers.
After about two weeks, as my husband began improving, I started asking about next steps. The original plan was to discharge him to a rehabilitation facility, but other possibilities were floated: transferring to another hospital unit, or sending him home with home health aides. Each time an option was mentioned, I asked what the goal would be. Often, the doctors couldn’t say. “That’s a good question,” I heard more than once. When I pressed and still didn’t get an answer, it became clear—even to the doctors—that the option wasn’t appropriate.
7. The staff is well trained in de-escalation.
When I complained about late medications or delays in helping my husband with basic needs, the nurses and aides immediately acknowledged the problem and assured me they would try to do better. That usually defused the immediate tension, even if little actually changed afterward.
8. Being a patient advocate is exhausting.
I thought I might get a break from caregiving while my husband was out of our apartment. But explaining my husband’s condition, pressing for timely medications, tracking down staff when call buttons went unanswered—it all took significant physical, mental, and emotional energy. I came home each day utterly drained. Self-care for the advocate is essential, but it’s also hard. Regular exercise, good nutrition, and adequate sleep were all difficult to maintain. I suspect I’ll be recovering from this experience for a while.
After thirty days in the hospital, my husband was discharged to a rehabilitation facility, where he is now working to regain strength and mobility. He is still there. I’m now applying what I learned in a new setting, with new systems, procedures, and staff—but I’m trying to pace myself. We don’t know how long this phase will last
What have you learned from helping a loved one in the hospital?
You are doing everything right. Keep working on self care. There is never a typical day in this situation so seize the moments. During my most recent caretaking experience, I bought a lot of Starbucks. After a particularly surly nurse came in one morning, I knew it would be a long day if the dynamic didn’t change. On my way downstairs, I asked if I could bring her something. She tearfully accepted. Nurses bear the brundt of insurance stupidity, tone deaf administration, and stressed family members. I found a little empathy for the nurses went a long way. Just remember that you are doing the best you can. There is no guidebook for this situation.
Terry