The Alzheimer's Digest: 7 Tips to Avoid This Caregiver’s Biggest Nursing Home Mistakes

Caregiving can be extremely difficult, particularly for those who are thrust into the situation in a state of complete unpreparedness. That was the situation that my brother and I faced when my mother's heart attack required us 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 appreciate how this story unfolded, we need to go back about eighteen months before the heart attack. Mom fell and ended up in the hospital for several days. After the hospital stay, she spent about two weeks at a rehabilitation center which also served as a nursing home for the long term residents. Mom was happy while she was there and everything seemed fine with the staff.

Now, as Mom was recovering from her heart attack, we realized the need 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 it, we did not check online for reviews, stop in to speak to the nursing home administrator or take a tour of the facility. They had a bed available and took patients on a Medicaid pending basis. So we filled out the nursing home application, started on the Medicaid application and we moved Mom in.

This was the beginning of a downhill spiral, which soon began to seem like Mom could not stay healthy in the nursing home 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, because I had visited her the day before and she seemed fine and alert. She did not respond to me or other stimuli. She was readmitted to ICU where she began to recover and was eventually released from the hospital 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 as 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 the Medicaid application.

This time, however, we talked with the doctors and voiced our concerns about the constant 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 the second time and she went back to the nursing home. The next day my brother visited her (as we were platooning trips so that we could spend as much time with her as possible) 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 a lower blood pressure diagnosis. This time, 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 UTI's was that her catheter was not inserted properly, as well as the fact that she was not being turned 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, not only was I furious at the situation but the level of guilt that accompanied it was incredible. 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, but my real problem was that we needed to find another place for Mom, as quickly as possible.

This time, however, I was determined not to make the same mistakes. Here are the steps I took to ensure Mom would be safe:

Got referrals. When you are going through something like this, others in your life tend to know what is going on. And this is a good thing, because as I was looking for a new place, two different people at work came to me and independently recommended the same nursing home to me. That was a good place to start.
Checked the Medicare Nursing Home finder for reviews on this facility. I wasn't expecting everything to be perfect, but I wanted to know that this new facility was in the upper tier of nursing homes in the area.
Took the tour. I made arrangements to meet with the nursing home administrator to take the tour of this facility. I was inquisitive, asked questions, observed the staff, the residents and the activities that were going on. This time I wasn't taking anything for granted as I did in picking the first nursing home. (Editors note: Here's a checklist to help you find the right nursing home)
Conducted the parking lot test. I went to this new facility and waited for visitors to show up to visit their loved ones. I then told them I was considering this new facility for Mom and asked them how they felt about it. I was able to speak to 5-6 different people and get a very candid assessment and real feedback about this facility. As I spoke to the relatives of the residents, I felt better about the decision to move Mom to the new facility.

After thoroughly checking out 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 by:

Visiting at different times and on different days. This is easier for me because I work nights so I have some added flexibility to my schedule.
Knowing the nursing home staff members on a first-name basis and becoming comfortable interacting with them.
Working with the staff through care plan meetings and other visits so that they realized I took an active involvement in Mom's care as well as the staff being comfortable with calling me if they had any concerns.

The new facility has had a dramatic impact on Mom. She has remained free of UTI infections, she is much more cognitively aware than she was before and she has not had to leave this new nursing home for the hospital in over one 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 that the lessons learned from my experience will help you to avoid some of the same mistakes:

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. But this was not the case.
I focused so much on the Medicaid application and financial end of caregiving that I failed to see the 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 into action after the third hospital admission. It was only then that I was able to take action and get Mom into a safer place. (Know what to do if you suspect neglect or abuse at the nursing home.)

The time you spend doing your research will be well worth it for the health and well-being of your loved one.