When a Loved One is in a Rehab Hospital: Part 1

This post is about a rehab hospital for physical rehab, not drug addiction.

I spent the last several weeks in Virginia caring for my father, who had a brain injury after surgery. He remains in a rehab hospital, which is like a skilled nursing facility (SNF, also called a "snif") except that patients must participate in about 3 hours of therapy a day.

The types of therapy are Physical Therapy, Occupational Therapy, and Speech Therapy. Not everyone needs all three, but my father does. Physical Therapy (PT) concentrates on basic physical skills like walking, balance, getting in and out of a car, climbing stairs, etc. Occupational Therapy (OT) often works with PT and concentrates on activities that a person needs to take care of themselves, such as combing hair, brushing teeth, shaving (men), etc. Speech therapy (ST) concentrates on talking, swallowing, coughing, and some cognitive skills.

In the case of my Dad, he lost the ability to swallow safely and is currently being fed by a feeding tube in his belly. We didn't want to him to get the tube, but it came to the point where he had no other way to get adequate nutrition. The problem with his swallow is that the muscles in his throat and soft palate aren't completely closing off his trachea when he swallows. That means he inhales whatever he is trying to eat. Then he coughs - but he may not cough out everything and wind up with pneumonia. Not good.

I learned a lot while I supervised Dad's care and visited the rehab hospital. I thought I'd share some of my knowledge with the blogosphere. When this happens in your family, you may not know where to start, and you may be afraid that you won't know what to do.  My tips may not answer all of your questions, but maybe you can find a few gems that work for you.

Communication Among the Team

Our healthcare system cannot communicate within itself well. As your loved one's advocate and spokesperson, it is in your best interest to make sure communication happens correctly. Here are things you should know:

• Do not assume that team members talk to each other. If you tell the physical therapist something, don't expect the nurse, the occupational therapist, the care coordinators, or anyone else to have been told. 
• Expect to communicate with each team member the same thing individually.
• Remember that nurses and aides work in shifts and every day your loved one may have someone new assigned. So, you'll have to tell them, too. 
• Confirm and reconfirm. If they schedule a test for your family member, verify the date, time, and location. If it's an outside location, call them yourself and verify they are expecting your family member. 
• Expect to have to ask twice or more for something for your loved one.
• You don't have to be mean or rude about it. Your care team is very busy and has a hundred things on their minds. They forget. They get pulled aside. They get involved in the latest emergency.
• When they do follow through, thank them. Tell them whatever they did really helped (example: "Thanks for giving Dad a shave! He looks great!"). 
• Coordination of Care:
• Don't expect anyone to know the "big picture" for your loved one. Most team members are focused on a certain aspect of their care. There usually is a care coordinator assigned to your loved one who is supposed to do that, but they usually are responsible for an unrealistically large number of patients. They would like to develop and carry out a personalized care plan, but it just doesn't happen the way we would like. 
• As your loved one's advocate, you have the best view of the big picture. Use this perspective to establish goals in your mind about what should be accomplished, then direct the therapy to meet those goals.  
• Example: you will probably be driving your loved one somewhere in the future. Make sure Physical Therapy enables your family member to get in and out of a car - increases strength, teaches them the steps to get in a car safely, and practices it with them.
• Not everyone at the facility knows up-to-date information about your loved one. If something changes, you might have to prompt for changes in care. 
• Example: When my Dad first came to the facility, he really couldn't get out of bed on his own. Upon arrival, his dietary needs were assessed by a dietitian who set the number of calories he needed to maintain his weight and support his bodily functions. That established how much nutrition he received by his tube feedings.
• Four weeks later, Dad had improved significantly and was much more mobile. As a result, he was burning more calories walking around the facility and working harder in physical therapy. However, no one reevaluated his dietary needs given his increased activity, and the calorie intake remained the same. He lost weight - not a good thing for Dad, as he's pretty thin.  I had to request an updated assessment by the dietitian given his improved mobility. 
• A few days later, I asked to make sure it had been done and he was getting more nutrition. Just covering my bases. 

The facility where my Dad is located is actually pretty good. They have the right goals, the maintain the place well, and the employees are generally caring, conscientious people trying to do the best for their patients. However, the system interferes with providing the kind of care we think happens. If you want the best for your loved one, you will need to watch for potential oversights and act accordingly.