When the Care Manager Needs a Care Manager (part 1)

I’ve had two kids and various same-day surgeries, but last month was the first time I was a fully dependent, admitted hospital patient. I’m in my 50’s so I guess that makes me pretty lucky. While it was elective foot surgery, I had been in excruciating pain for over a year. I felt as if I had no choice but to go through with it. Trust me, I looked for every excuse and reason to cancel the surgery but I just kept coming back to the fact that the pain was not going away—only getting worse.

I had no less than five opinions. Over the course of the past year I saw three podiatrists and two orthopedic surgeons. And five opinions really are five opinions. How can that be if they were all looking at the same x-rays? One doctor made me orthotics. They were no help. Another offered surgery on my “good” bad foot. When I told him I did not want to be off my feet for 6 weeks he said he could reduce that to 4 weeks. When I said that was too long, he reduced it to two weeks. Are we on Let’s Make a Deal? Needless to say I lost confidence in this doctor.

Doctor # 3 taped my foot and arranged for a handicapped placard so I could make it to the Bruce Springsteen concert. He also admitted that the surgery that I needed was way too complicated and outside of his area of specialization. I appreciated and respected his honesty. Three doctors and still no consensus or plan of action.

In between doctor appointments, I had been to physical therapy, massage therapy and a chiropractor (maybe it was my back causing me to walk improperly). Nothing was working and I was still in pain 24 hours a day. I have a high tolerance for pain but it was getting to be too much. My daily activities were affected. I could not walk even short distances. I was losing sleep because I was awoken several times during the night with shooting pain just from changing positions.

In addition to physical pain, it was starting to affect me emotionally. I was using a cane when I wasn’t around people I knew. I was not sleeping well. I had to say “no” to plans with friends and family. Things like my daughter’s college graduation, which should have been all “happy thoughts,” caused me anxiety because I did not know how I was going to negotiate the walking, waiting on lines and being on my feet for long periods of time. I actually worried about this for months if you imagine.

If you saw me, I looked totally fine. As I already mentioned, I have a high tolerance for pain. I rarely complained. If I looked and dressed “normal” and made the right excuses for not doing things like walking around NYC, then there was nothing wrong because no one could see what I was feeling.

After all, it was “only a foot.” But I needed to figure out a plan. So I did my research (this is my professional “wheel house” after all) and found two highly recommended orthopedic surgeons who specialize in foot and ankles and were affiliated with different New York teaching hospitals. I needed to “go big.” Doctor #4 examined my foot and knew immediately what the problem was. He explained that my ligament had torn. The combination of the torn ligament and the resulting deformity necessitated five different procedures. My foot needed to be reconstructed. It was a huge surgery with a long recovery and he did not want me to make any decisions lightly. He told me to come back in two months so that we could talk again.

When I explained to my husband what was going on, he encouraged me to make an appointment for a second opinion so I went to see Doctor #5. I had to point out twice where the pain was mostly coming from. He talked about bunion surgery. That was the least of my problems. Finally, after me leading him down the path (I did not share that I had already seen someone else) he thought maybe I should get an MRI in case I had a ligament problem. Needless to say, I did not have confidence in Doctor #5 either.

So, back I went to Dr. #4. My husband could not physically attend the appointment but we brought him in remotely. We talked again about surgery. It was an involved procedure with a long recovery so my doctor really REALLY wanted me to think it through. When I went back 8 weeks later I was no better. I brought my husband this time. I wanted to see what he thought of my doctor. He asked thoughtful questions that I had not thought about (I was singularly focused on the recovery time) such as the risk of RSD. I scheduled my surgery before I left.

Even though I am a professional care manager here I was the patient. I needed someone else to think of the questions and to share their opinion. My husband insisted on the second surgical opinion and he was right. If nothing else, it solidified my confidence in my doctor.

As a care manager, I always encourage my clients to ask questions and, if appropriate, to get multiple opinions. I also insist that they have an advocate with them at their doctor appointments. We all need someone who will ask the right questions and take notes. This is even more important when someone has memory issues such as Alzheimer’s disease, is hard of hearing or seeing, or is facing a serious illness. Sometimes it is not the surgery or treatment itself but the side effects and after care. For example, any hospital stay or use of anesthesia can cause their own long-term effects for persons with dementia.

LMR Elder Care can help and be “your person” when you are scared and vulnerable. We know the important questions to ask so that you can make informed decisions regarding small or large medical matters. We also make sure that the information is shared among medical providers and family caregivers. This is especially important when you have multiple providers who do not share the same network. In my case, I knew the questions to ask and how to get the information I needed. But I was the patient this time and I still needed my husband to be MY advocate.

Going an ER Visit Alone…

 

Have you ever been a patient in an emergency room? Did you go by yourself or did you have someone with you? Were you seen right away or forced to sit in the waiting room for hours? Did you have your own “room” or was your bed parked in a crowded hallway? Were you scared? Anxious? Frustrated? Confused? Uncomfortable?

Having accompanied family members and clients to the emergency room on multiple occasions I can attest first hand that they have felt all of the emotions and feelings described above at one time or another. Fortunately for them they all had me by their side to advocate on their behalf.

But, what about the patients that have no one to ask questions and speak up for them? I remember one visit to the ER when my husband had a kidney stone and there, in a bed next to the medical station, was an older woman who was brought in by a local assisted living facility. She repeatedly called out for help but no one responded. She said she needed to use the bathroom but no one helped her. She kept asking where she was and begged to go home but the staff ignored her–except every so often to tell her to “sit still” (evidently she was also a fall risk). And, while the staff did nothing to help her they had no problem speaking about her as if she wasn’t there. It was clear that she had some level of dementia but she still had enough presence of mind to know that she was in a strange place and needed help.

I know I was out of turn but I couldn’t help but speak up for her. I asked her nurse to please have someone take her to the rest room. I also asked that they call her family so that someone could come be with her. The nurse said that she had no family nearby and that someone from the facility dropped her off and left her there all by herself. That they would pick her up at some point–whenever the driver had the chance. And, that other than trying to address her medical issues, she was not their responsibility.  I was furious with the assisted living for being so irresponsible and uncaring (please don’t ask me which one because I will not say).

I’ll never know what happened to her because, after several hours, my husband passed his kidney stone and we were able to go home. Yet, the poor lady was still in the same place as when we arrived. She was still calling for help and asking to go home. No one had come by to explain what was going on and comfort her.

Bottom line. Whether you are 24 or 104 you should always try to have someone with you to advocate if you have the unfortunate experience of having to go to an emergency room. Someone to ask questions and to press for explanations. And, when you are ready to go home (or be admitted), to make sure that you receive the attention and care that you need and that you deserve.

 

 

 

Warning Signs That Your Elderly Loved One Needs Help

The holidays are often a time that family members who have not seen one another get together to celebrate. Whether you are traveling or hosting there are several “warning signs” that your elderly loved one needs extra attention.

You notice that your mom’s clothes are not fitting well. In fact, they seem to be falling off of her. Or, you see it in her face. This could be a sign of illness (causing loss of appetite) or even dementia (forgetting to eat meals). If your mom cannot provide a satisfactory reason for the loss of weight it would be prudent to make an appointment to see her doctor.

You visit your dad and you notice a pile of unopened mail on the dining room table. The dates on the envelopes go back several months. You ask him about it and he tells you not to worry. You cannot help but be concerned. If your dad agrees it may be a good idea to go through the mail together and set up a bill payment plan going forward. If you suspect something else is going on, such as difficulty seeing or even depression, you can help him address these concerns.

Your favorite aunt comes to visit. At first things seem totally fine. She’s happy to see you and the kids. You fill her in on what is going on in your lives and ask her how how she is doing. And then she asks the same question she just asked again. And again. This could be a warning that she is experiencing the start of dementia. The sooner she gets diagnosed and treated the better.

While it may be difficult to see your family members getting older and you may wish that you could ignore the warning signs it helps to look at this opportunity to help as a good thing.Without your intervention things could continue to get worse. Now, you have the opportunity to make a difference; to help your loved ones improve their health and quality of life. This is perhaps the best gift you can give to your loved one–and yourself.

For more information about LMR Elder Care please visit http://www.LMReldercare.com