Hospital Stays: Mistakes, Mishaps and Misunderstandings

Mistakes are going to happen during a hospitalization. Misunderstandings are inevitable. Mishaps are sure to occur at home following a hospitalization.

“Learn from the mistakes of others. You can’t live long enough to make them all yourself.” – Eleanor Roosevelt.

It would be wonderful if we could learn everything we needed to know from the mistakes of others. In reality, there are so many complexities involved in each hospital stay that the best we can do is to know that mistakes, misunderstandings, and mishaps are inescapable and plan accordingly.

When I accepted this inevitability, I could better prepare for the role of patient advocate by:

• Writing down information as it was explained and asking questions to clarify the confusing bits
• Jotting down the questions that surfaced in the middle of the night
• Demonstrating self-compassion when I didn’t live up to absurdly high standards 
• Recording procedures that I needed to replicate at home and imagine performing these tasks to identify potential complications
• Learning as much as possible about diagnosis, recovery, or ramifications
• Paying attention and engaging with the team 
• Showing appreciation for all that was being done for our family member while many others are also receiving care
• Talking to the discharge planner about medications and care needed at home

Diagnosis

Dad spent a lot of time at the hospital, but at 94, he had never spent a night in a hospital. He volunteered and drove staff and patients from the entrance to their vehicles in a large golf cart, where he felt right at home. He had complained of an irregular heartbeat off and on for years. Each time, it was recommended that he wear a heart rate monitor, and each time he refused. Then, he relented and, a few days into the process, refused again. I was furious. He gave in long enough that the irregular heartbeats could be recorded and a diagnosis made AFib. He went on the blood thinner Coumadin. It was a high-maintenance medication. He was covered in bruises. We had to have his INR checked weekly and could not get the dosing dialed in. 

Hospitalization #1

Weeks after the AFib diagnosis, he had an intestinal bleed in the middle of the night. He hadn’t told me that he had passed out twice. I heard a thump and found him slumped over the sink, incoherent, pants around his ankles. The toilet was full of blood, and there was a foul smell I did not recognize but now know is a telltale sign of a GI bleed. Convinced he was dying, I called 911. The EMTs were professional and measured, which countered my near-hysterical excitedness.

After a few days, Dad was ready to go home, about to be discharged, and I called attention to blood in the toilet. That was a mistake. I realized it soon after I spoke up, but the damage was done. It was apparently normal. Not sure how I would have known that or why my obvious lack of credentialed comment couldn’t have been disregarded, but he wasn’t leaving. Then, he was given too much fluid causing him to go into heart failure. He struggled to breathe. I blamed myself. Fluid was a tricky thing to regulate at his age and had he left sooner, this may not have happened. Or, it would have, and we would have been at home dealing with it on our own. Funny thing about mistakes, mishaps, and misunderstandings, you just never know. As soon as the fluid was regulated, he recovered and came home.

Hospitalization #2

We decided Coumadin wasn’t worth the risk, and after collaborating with the doctor, Dad stopped taking it. Weeks later, he had a stroke. It happened sometime in the night, and I drove him to the ER. It was a busy place. They did not have a bed, so kept wheeling him back behind the locked doors for tests. For several reasons, I should have called 911 rather than driven him myself. If anyone is counting the mistakes, I have made four sizable ones to this point, but if I had not insisted on him continuing to wear the heart monitor, we would have been right where we were at the moment, in the ER.

Dad spent a week in the hospital. I was there from morning until night each day. The neurologist stopped coming by after a few days. At the end of the stay, I was told that he stopped coming because Dad was going to make a full recovery. That would have been comforting information to have known at any moment earlier. Dad was still pointing at the blue and saying yellow and confusing simple images. He wasn’t walking well, and his words weren’t coming to him. I chose a rehab facility that was also a hospital. It was a trek to visit every day, but I preferred that the therapy match Dad’s motivation, and this was the best option.

In a week, he was almost back to his normal and was demanding to leave. It was during this week in rehab that I decided that Dad should not continue driving. I had realized that it was no longer safe much sooner but hadn’t been up for the battle. I couldn’t, in good conscience, let him get behind the wheel at this point. 

Home or ALF?

The question of where Dad would go following rehab came up repeatedly. I learned that there were two clear camps. There were those who were incredulous when they thought I would consider sending Dad to an ALF. Camp 2 told me I would not survive otherwise. The PT at the rehab hospital told me that if I were a good daughter, I would take care of him at home. Later at home, the visiting PT and OT told me that providing care at home was not sustainable and that I would burn out. They gave me personal examples. It was all too sudden to know what was right, what was sustainable.

With some maneuvering, I sprung him from rehab, and he continued PT at home. We still resisted blood thinner and, after a few TIA’s, added Eliquis into the medicine mix. If anyone is still counting mistakes, that was a big one. He should have already been on a blood thinner, and the TIA’s, mini-strokes, were leading up to another stroke. It could technically be counted as two mistakes because Eliquis was low maintenance, and we should have started with it rather than Coumadin. Home from rehab, we did not have the new prescriptions that we needed, and it was the weekend. This was all very familiar. Same mishap, different parent. 15 years prior, I remembered being on the phone on a weekend evening with the on-call PCP, and it wasn’t a fun conversation then, nor now. Ironically, it was the same physician. Cue compassion for all involved.

SOS!

The social worker handed me a packet of information the day Dad was discharged to rehab from the hospital. Welcome to the deep end. Blurry-eyed from lack of sleep, I went through each form and applied for everything available. There were waiting lists, and I put Dad on all of them. I had no idea what we would need when Dad recovered, what he would accept in the way of help. Why didn’t any of those forms have the name of someone who had been through this, someone who could relate to the turmoil, someone who could tell me that how I was feeling was normal and that it would be alright?

Dog paddling in the deep end

One thing was clear. I needed help with the tasks that swirled around his care. There were doctor’s appointments, cooking, cleaning, laundry, paperwork from bills to VA forms, medication management, PT, OT, and in-home nurses to coordinate, grocery shopping, gear shopping (walker, cane, portable toilet), installation of safety bars, implementation of low vision recommendations, keeping Dad engaged in current events and stocked in painting supplies, badgering him to do PT exercises, updating friends and family members on his progress, plus a host of other activities needed to keep Dad going. I learned that “It Takes a Village” did not just apply to raising children.

I was overwhelmed and infuriated that Dad insisted that he didn’t need help. Insisting that he could still drive, he refused to give me a key that he remembered he had found tucked away (not the last of the hidden keys). He resisted my every move to create a safe living space and manage his medicines. He wanted the portable toilet out of the house and into the dumpster.

Learning what type of help, helps?

Dad did not want help, did not need help, and would not have help. He was getting along just fine. I was losing my mind and told him that I needed help. He reluctantly agreed. I found a home care company, and my learning continued. The aide would arrive, and Dad would say, “I really don’t know why you’re here. I don’t need any help.” I had to learn how to manage the entire situation, which created a good bit of additional stress in the beginning. The reality was that I needed help beyond the tasks and resources; I needed help with the emotions, the resistance, and the worries.

We visited senior centers where Dad could meet some folks and spend time away from the house. Those folks were too old. They used walkers. He no longer needed a walker and did not want to spend time with anyone who did. We were not in a good place, and the arguments around driving were escalating to the point that I was concerned he would have another stroke. He became red-faced and sputtering mad. It was much later that I discovered David Solie’s book, How to Say it to Seniors. I had made every mistake in the book and invented a few new ones.

Hospitalization #3

Dad’s partial knee replacement 21 years prior was no longer viable. X-rays revealed a shift, and it was producing pain to the degree that he could no longer comfortably walk. He wanted the knee replaced and found a surgeon who would do it. Dad was 97, and after resisting the idea for many months, I relented and reluctantly supported his efforts. In hindsight, it was his decision to make. I wasn’t concerned about him not surviving the surgery, it was the post-surgery period that worried me, and with reason. On operation day, Dad did fine, and we chatted after the surgery. He was upbeat and sharp. I was tremendously relieved and went to get something to eat.

Close call

While I was gone, the nurse decided to give Dad half of the pain medicine that was prescribed because the dose seemed high for his age. When I returned, I couldn’t wake him. A male nurse came and got on top of the bed, yelled, and got him to wake up. This nurse said that was what he did the last time, to get him to wake up. I had only been gone 20 minutes. I asked them to call Dad’s PCP, who I knew was in the hospital at the time. A nurse asked if I wanted them to administer Narcan to reverse all of the pain medicine. The question caused as much anxiety as the situation because I was not qualified to make that call, and the risks seemed tremendous.

I became the patient advocate that Dad needed and made several other immediate requests, a few which were to stay in effect through the night. I wanted a report of all of the medicine that was in his system because I wanted to verify that he had not been given general anesthesia, which he had not. What he had been given over the course of the day was more than enough to cause an overdose in someone his age.

All’s well…

The nurse saved his life when she didn’t give him that full dose. 24 hours later, with no new pain medicine, he was still so high that when asked his name, he couldn’t answer correctly. It finally wore off. A 97-year-old in good health can survive the surgery, but the aftercare has to take age into consideration. It had been acknowledged by many of the team members that they did not have much experience with the recovery process for someone Dad’s age. The doctor who performed the surgery told me to stop lecturing him. He had thousands of patients. Toe to toe, I said, “You may have thousands of patients; I have one dad.”

Lessons

COVID-19 has changed our hospital experience temporarily, but we will one day return to a new normal and this information will, hopefully, be of help. In the meantime, I wanted to share our story. Many of the lessons learned in crisis and during hospitalizations serve me well today in all areas of caring for Dad. For example:

• Mistakes are going to happen, and I want compassion to be my first response.
• Write and record important information.
• Continue to learn about illnesses and research disease progression that may impact the future.
• Dad, with an understanding of the risks, is entitled to make his own decisions. The role that I have accepted as his caregiver is best carried out by supporting those decisions.
• Help that helps changes with the intensity of the experience, and I need to regroup, reassess and re-source when I struggle.

Here are two resources that provide needed knowledge before being dropped into the deep end:

• Beth Suereth, a fellow Certified Caregiving Consultant™ and owner of Caregiving Pathways, offers a free Hospital Guide for the family caregiver.
• The discharge process can be particularly painful. This guide offers advice so to help it go as smoothly as possible, Hospital Discharge Planning: A Guide for Families and Caregivers.

Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast.

Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.

Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.