The very nature of catastrophic events is that they are not predictable. They happen suddenly. Such is the predicament we found ourselves in after my husband’s motorcycle accident in 2015. He severed his spine and we were thrust into a world of hospitals and doctors and rehabs; a world in which we had no experience. Yet with a few days’ notice, we were expected to choose a spinal rehabilitation center for my husband to transfer into.  We didn’t even know the extent of his injury when he was released from the hospital.

If you find yourself in an extended medical situation, the advice below may help either the patient or the caregiver, even if the situation isn’t as dire as my husband’s was.

Please note: I use gender “he” because my husband was in the accident. Substitute pronoun as needed.

• A hospital social worker should be assigned to you or your loved one to help you through the process from injury to recovery. My husband’s social worker didn’t contact us until a few days before he was released. We had very little time to decide anything or research places. We didn’t even know the questions to ask! When I had spinal surgery in 2017, I had to hunt down my social worker so I could be transferred to rehab.  

Be the squeaky wheel. Kindly but firmly ask for your social worker. Get a name and phone number. Continue to call until your social worker contacts you. Go to their manager or ask another family member to call if you cannot get in contact with one. Stay on top of this because the social worker is the one who will grease the wheels for you to be transferred to another hospital or a rehab. The social worker is supposed to make sure your paperwork, including any insurance, is correct. They will also make the calls to see if a bed is available. This is their job. Use them.

• Do your own rehab search.  Being short on time and new to the situation, I did some cursory searches for Best Spinal Rehabs. It was intimidating. What is the criteria to look for? Someone recommended a rehab in Colorado. We live in Maryland. I called and found out that we would have to pay for his flight out there for an evaluation.

So make the calls, ask the questions.  What is your rate of acceptance? How long will he be in rehab? What will he learn? In the end, we went with the facility that the hospital recommended and we were sorry that we did.

• Know the scope of the injuries. When my husband was released to rehab, we knew he had a level T10 injury that left him a paraplegic. What we didn’t know was that he also had cracked ribs and a torn rotator cuff. He may have had a concussion.  In rehab, he was expected to do 3 hours of combined physical therapy and occupational therapy. This was impossible with his injuries. He was in excruciating pain.

ASK the doctor what the injuries are. READ the patient’s paperwork and chart. Ask questions about the injuries. What is the recovery time? This would have been valuable information in choosing the right facility.

By the way, hospitals and rehabs are insurance driven. That means that if my husband did not show progress in his PT/OT reports, Medicare could stop paying and he would be kicked out of the rehab unless he paid out of pocket. The bar they use is PROGRESS. How much progress is he making? There are step-down rehabs, which is where my husband ended up, with a slower pace of PT/OT.

• BE aware that the pain medication may be addictive. Just BE AWARE of the addictive quality of opiates and talk to your doctor about it. You may need them, as me and my husband did, but you need to have a plan to get off of them. Your doctor may have suggestions.

• Know that the medication may change your loved one’s personality. My husband began doing crazy things – ordering odd things from Amazon, cancelling his credit cards, removing my name from his bank accounts. He became paranoid and his behavior was erratic. There wasn’t anything I could do about it, but it helps to be aware and have a backup plan. Maybe someone else can get through to the patient when you can’t.

• NOTICE changes in the body. I was constantly on the lookout for bedsores on my husband. When I visited him, I made sure he was turned at intervals and made sure to remind the staff to turn him. Stay on top of this because bedsores can go deep to the bone and may ultimately affect the patient’s release to either home or a rehab.

• Keep notes of the names of doctors, nurses, rehab specialists.  I saw a bulge in my husband’s back that seemed abnormal and I couldn’t get any answers from staff about it. We were told to contact the doctor who did his initial surgery, but we didn’t know who it was!  After some research, his daughter found the name and we called and made an appointment. Turns out his hardware had come lose.

• Ask questions, ask questions, ask questions. Take notes of everything that is said. If you don’t understand something, ask. And ask again. Ask for further clarification.

I hope you never have to go through what we did, but if you do, I hope this will help you be better prepared than we were.

Angela DiCicco

The Italian Grandmama

Theitaliangrandmama.com

theitaliangrandmama@gmail.com