Caregiving can be extremely difficult, particularly for those who are thrust into the situation abruptly and in a state of complete unpreparedness. That was the situation that my brother and I found ourselves in when my mother suffered a heart attack. We had to not only start filing for Medicaid on my mother's behalf, but also find her a quality nursing home at the same time. In order to fully appreciate how this story unfolded, we need to go back about a number of months before the actual heart attack.
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 a rehabilitation center, which also served as a nursing home for long-term residents. Mom was happy while she was there, and everything seemed fine with the staff.
Now, as Mom was recovering from her cardiac problems, we suddenly realized we needed to find a nursing home for her as a permanent resident. Naturally, the first place we thought of was the rehab facility that she was already familiar with. The added convenience that the facility was only a few minutes' drive from the hospital made it seem like a win-win situation for all of us.
Because we had previous experience with this nursing facility, we did not check online for reviews, stop in to speak to the administrator or take a tour. They had a bed available and accepted patients on a Medicaid pending basis, so we filled out the application, began Medicaid application process and we moved Mom in.
This was the beginning of a downhill spiral. Shortly thereafter, it began to seem like Mom could not stay healthy in the facility for more than 72 hours without having to go back to the hospital.
The first time it happened was because of a urinary tract infection and an irregular heartbeat. When I went to the emergency room, I was shocked when I saw her. I had visited her the day before and she seemed fine and alert, but she did not even respond to me or other stimuli. She was readmitted to the intensive care unit (ICU) where she began to recover and was eventually discharged back to the nursing home after about ten days.
Then, virtually the same thing happened again. Mom looked good one day and then horrible the next. Not only were my brother and I worried, the constant trips to the hospital and the phone calls from the doctors, many times in the middle of the night, were killing us. We still had our own families to attend to as well as our jobs and the meetings with social workers, bankers, and insurance agents regarding Mom's Medicaid application.
This time, however, we talked with the doctors and voiced our concerns about the constant shuffling back and forth between hospital and nursing home. They kept Mom in the hospital for an extra day and we thought we had "licked it." They cleared her a second time and she went back to her room in the facility. The next day, my brother visited her and reported that all was fine.
Two days later, we got another phone call in the middle of the night telling us the UTI was back, this time accompanied by an even lower blood pressure diagnosis. However, when I arrived at the ER, the nurses there presented me with pictures of my mother's backside showing that the reason for the recurrent UTIs was that her catheter was not inserted properly, she was not being turned or adjusted in bed, and she was not being or cleaned 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 coming back to the ER.]
As you might imagine, I was furious with the facilty 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 and contacted the state Ombudsman's office to investigate the neglect. However, the immediate problem was that we needed to find another place for Mom to live, as quickly as possible.
This time, however, I was determined not to make the same mistakes. These are the steps I took to ensure Mom would be safe in the nursing home.
Steps to Take Before Placing a Loved One
- Ask for referrals. When you are going through something like this, others in your life tend to know what is going on. This is a good thing, because as I was struggling to look for a new place, two different people at work came to me and independently recommended the same nursing home. That helped at least give me a starting point for my research. Keep in mind that referrals can from from anywhere; a doctor, a friend, a coworker, you name it. It can't hurt to ask.
- Check the Medicare Nursing Home Compare tool for reviews. 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 and minimal incident reports.
- Take tours. I made arrangements to meet with the nursing home administrator to tour the home 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. This time I wasn't taking anything for granted as I did the first time around. (Editor's note: Use this checklist to help you find the right facility for your loved one.)
- Conduct a parking lot test. I also went to this new facility and waited for visitors to show up to see their loved ones. I approached a few residents' family members and told them I was considering this new facility for my mother. I asked them how they truly felt about the quality of the home and level of care provided. I was able to speak to five or six different people and get a candid assessment and real feedback about the facility. 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
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 earnestly and remained involved in her 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 and put on a good show for your arrival. Try to switch your routine up a little bit to ensure that your loved one is receiveing 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 make an effort 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 having a difficult day or you need some questions answered about their condition.
- Set care plan meetings with the staff. Aside from a care plan being an necessary part of elder care, participating in this process and its ongoing evolution shows that you are taking an active role in your loved one's care. This helped the staff better understand my mom's needs and they became comfortable with calling me if they had any questions, concerns or updates.
The new facility has had a dramatic impact on my mom. She has had no more UTIs, she is much more cognitively aware than she was before and she has avoided the hospital for over a year. Not only has Mom been happier and healthier, having her in a safer place has significantly decreased the stress level for all of us.
I hope what I learned from my experience will help you to avoid some of the same mistakes I made.
- I hadn't realized that Mom's changing care needs required some much-needed research. I had assumed that since the facility was a good fit for rehab, the same would be true as a nursing home facility. Sadly, this was not the case.
- I focused so much on the Medicaid application and financial aspect of caregiving that I failed to see the other warning signs that were in front of me.
- 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 prompt me to take action. If you suspect neglect or abuse in a long-term care facility, make sure you know what steps to take.
The time you spend conducting research will be well worth your loved one's health and wellbeing as well as your added peace of mind.
Tony Rovere became involved with seniors and caregiving after his mother's heart attack forced him to navigate the government bureaucracy that comes with caregiving. His website, StuffSeniorsNeed.com, is a resource for seniors and caregivers seeking free cell phone for seniors and other forms of assistance to live more rewarding lives.