Caregiving can be extremely difficult, especially for those who are thrust into this role abruptly and find themselves completely unprepared. That was the situation my brother and I found ourselves in when our mother suffered a heart attack. Not only did we immediately have to apply for Medicaid on her behalf, but we also had to find her a quality nursing home. To fully appreciate how my family’s caregiving journey unfolded, we need to go back several months before Mom even suffered that devastating health setback.
Our Nursing Home Nightmare
The year before her heart attack, Mom fell and was hospitalized for several days. After the hospital stay, she spent about two weeks at an inpatient senior rehabilitation center. This facility also served as a nursing home for long-term care residents. Mom was happy while she was recuperating there, and everything seemed fine with the staff and the care and physical therapy she was receiving.
After Mom’s heart attack, we suddenly realized that her current living arrangement was no longer safe. We needed to find a quality nursing home where she could live permanently and receive the care and supervision she needed. Naturally, the first place we thought of was the senior rehab facility she was already familiar with. This facility was only a few minutes’ drive from the hospital, which made it seem like a win-win situation for all of us.
Because we had previous experience with this skilled nursing facility, we didn’t bother checking its online reviews, stopping in to speak to the administrator or taking a tour. They already had a bed available and accepted residents on a Medicaid-pending basis, so we signed the admission forms, began the Medicaid application process and moved Mom right in.
It was unbelievable how seamless this transition was, but our good fortune ended there. Mom’s move precipitated a serious downward spiral. Shortly after she got settled, Mom began having issues. She couldn’t seem to stay healthy in her new home for more than 72 hours at a time—she was constantly in and out of the hospital.
The first hospitalization occurred because of a urinary tract infection (UTI) and an irregular heartbeat. When I met Mom in the emergency room, I was shocked by her condition. I’d visited her at the nursing home only the day before and she had seemed perfectly fine and alert. But at the hospital, she did not even respond to my presence, my questions or other stimuli. She was readmitted to the intensive care unit (ICU), where she slowly began to recover. After about 10 days, she was eventually discharged back to the nursing home.
Then, virtually the same thing happened again. Mom looked good one day and horrible the next. Not only were my brother and I worried about her physical and mental health, but the constant hospital trips and phone calls from doctors, often in the middle of the night, were also killing us. We still had our own families to attend to, our jobs, and the meetings with social workers, bankers, and insurance agents to move Mom's Medicaid application along.
This time, however, we talked with the doctors at the hospital and voiced our concerns about the constant shuffling back and forth between the ER and the nursing home. They kept Mom in the hospital for an extra day and we thought we had solved the issue for good. They cleared her a second time and she went back to her room in the facility. The very next day, my brother visited her and reported that all was fine.
Two days later, however, we got yet another phone call in the middle of the night telling us the UTI was back, this time accompanied by even lower blood pressure. When I arrived at the ER, the nurses there presented me with pictures of my mother's backside, revealing the reason for the recurrent UTIs. To my horror, I realized that her catheter hadn’t been inserted properly, she was not being turned or repositioned in bed, and she was not being bathed or cleaned after toileting the way she should have been.
[Note: I have since learned that it is not normal procedure for pictures such as these to be given to family members. The nurses broke protocol because of the number of times my mother was being readmitted to the hospital.]
As you might imagine, I was both furious with the facility for mistreating her and racked with guilt for placing her in this awful situation. I had trusted this nursing home based upon our previous experience there and it turned out they were completely neglecting my mother and her needs.
I did confront the nursing home administrator with the pictures documenting Mom’s subpar care, and I contacted the state long-term care ombudsman's office to investigate the neglect. However, the new and urgent problem was that we needed to find another place for Mom to live once she was discharged from the hospital.
Steps to Take Before Placing a Loved One in a Nursing Home
This time around, I was determined not to make the same mistakes. These are the steps I took to ensure Mom would be safe in the next nursing home we chose.
- Ask for referrals. When you are thrust into caregiving (or conclude that it’s time for a loved one to move to a long-term care facility), look to others in your life who may have prior experience in this area. They have typically done their research and made their own mistakes already. As I was struggling to look for a new nursing home for Mom, two different coworkers approached me and independently recommended the same facility. These recommendations helped at least give me a starting point in my search. Keep in mind that referrals can come from anywhere—a doctor, a friend, a coworker, an elder law attorney, you name it. It can't hurt to ask.
- Browse reviews on the Medicare Nursing Home Compare website. I was not expecting everything in Mom's new home to be perfect, but I wanted to make sure this new facility had high ratings, clean inspection records, few complaints and minimal incident reports. Medicare’s rating system isn’t exactly perfect, but perusing penalty records and information about staffing ratios can be illuminating and help you draw your own conclusions about the quality of a particular facility. You can find the tool at Medicare.gov.
- Take tours. I arranged to meet with the nursing home administrator to tour the facility that my coworkers had recommended. I was completely tuned in the entire time. I asked questions, observed the staff, spoke with the residents and noted the activities that were going on. I wasn't taking anything for granted as I did the first time around. It can be a time-consuming aspect of one’s search for a nursing home, but in-person visits are really the only way to gauge overall ambience, cleanliness, friendliness of the staff and contentment of the residents.
- Conduct a parking lot test. I also went to this new facility and waited in the parking lot for family members to show up for visits with their loved ones. I approached a few visitors and explained that I was considering moving my mother into this home. I asked them how they truly felt about the quality of the facility and the level of care it provided. I was able to speak with five or six different people and get a candid assessment of the nursing home. As I spoke to these people, I felt better about the decision to move Mom in there.
Steps to Take After Placing a Loved One in a Nursing Home
After thoroughly vetting this new nursing home, we made the decision that this was the place for Mom, but our diligence did not end there. My brother and I resolved to watch the staff more closely and remained involved in her care. This is a vital lesson for family caregivers who think their responsibilities end completely after a loved one is placed in residential long-term care.
- Visit at different times and on different days. If you visit on a regimented or obvious schedule, it makes it easy for employees to prepare for your arrival and put on a good show. Try to switch your routine up a little bit to ensure that your loved one is consistently receiving the care and attention they deserve, even during “off” hours.
- Get to know the nursing home staff members. Make a point of learning their names and interacting with them. Ideally, they will strive to get to know your loved one in order to better care for them, so it only makes sense to reciprocate. Establishing a rapport with the nurses and other employees comes in handy if your loved one is ever having a difficult day or you need some questions answered about their condition.
- Attend care plan meetings with the staff. Devising a care plan is a fundamental step in coordinating and providing care for an elder. This is often one of the first things that is done upon a senior’s placement in long-term care. Family caregivers must participate in this process, even if they aren’t the ones providing the hands-on care.
And this isn't something that you can set and forget either. A plan of care evolves along with a senior’s condition, and keeping up with these changes shows that you are taking an active role in their care. My presence at regular care meetings enabled the staff to better understand my mom's needs and my concerns, and helped them become more comfortable with calling me if they had any questions or updates.
Lessons Learned About Nursing Home Care
The new facility that we chose has had a dramatic impact on my mom. Since she moved in, she hasn’t had any more UTIs, she is much more coherent and aware, and she has avoided the hospital for over a year. Not only has Mom been happier and healthier, but having her in a safer place has also significantly decreased stress levels for all of us.
I hope what I learned from my harrowing experience will help other families avoid some of the same mistakes I made. In addition to the tips above, here are a few more of my key takeaways:
- I hadn't realized that Mom's changing care needs required careful research. I simply assumed that since the first facility was a good fit for a short-term rehab stay, it would also be an excellent place for Mom to reside permanently. Sadly, this was not the case. Different care types and levels, even within the same building or campus can vary widely. Learn about what kind of care your loved one needs and don’t skimp on the research.
- I focused so much on the notoriously difficult process of applying for Medicaid and other financial aspects of caregiving that I failed to see the other warning signs that were right in front of me. Yes, figuring out how your loved one is going to pay for long-term care is very important, but try your best not to get distracted from what matters most: your loved one’s basic health and safety.
- I should have started to ask questions after the second trip to the hospital instead of waiting for those pictures from the ER staff to surface and spur me to action. If you ever suspect neglect or abuse in a long-term care facility, make sure you know what steps to take and act quickly. Don’t hesitate to speak with the director of nursing or contact your state long-term care ombudsman program for assistance advocating for quality care for your loved one.
The time you spend conducting research and monitoring your loved one's care will be well worth their wellbeing as well as your added peace of mind.