Almost a year ago to the day, our lives were forever changed when a relapse of my husband’s Multiple Sclerosis (MS) snuck up on us over the course of a few months. We struggled to understand why everyday tasks seemed more difficult for him and why an uncharacteristic fatigue had washed over him and wouldn’t abate.
Life was hard, and when a checkup with his primary care doctor identified a sinus infection as the cause of his difficulties, we accepted that diagnosis and waited for the medication to bring him back. And for a time, he improved, but things got progressively worse soon after. Naively, I thought the sinus infection had come back – but the antibiotics didn’t work the second time.
MS is a sometimes a squirrely disease, disguising a relapse as anything but. Caregivers see first-hand how a simple UTI or infection of any kind can turn their loved ones into incoherent, clumsy, and sometimes even indignant strangers. But distinguishing an infection, or dehydration, or fatigue, or a bad day, from a relapse can be difficult – mainly because an MS relapse can only really be diagnosed with an MRI of the brain and spine – an ordeal that can sometimes last for hours.
When the symptoms began to threaten his everyday independence and safety, I called his incredibly supportive parents and asked them for help. Two hours later, we were waiting in an ER exam room after answering what seemed like an endless number of questions, multiple times, and the decision was made to perform the MRI. With the MRI completed, he was admitted as a patient to the hospital’s 5th floor acute care neurology ward and we waited for results.
The MRI confirmed what we had all hoped it wouldn’t. A relapse. The first noted relapse in years.
What we didn’t know then was that this was the beginning of a 37-day in-patient hospital and rehab stay. And that a year later, he would still be working hard every day to regain what was lost in this relapse. I hope that the lessons I learned throughout this journey may help someone else wearing these similar, worn down, and scuffed-up shoes.
Find Doctors Who Care
A doctor who cares about your loved one, but also cares about you – the caregiver – is essential when walking through the valley of a relapse – or any long hospital stay. I have always liked my husband’s doctors – both his primary care physician and his neurologist – and knew that they wanted to do the right things for him, to help maintain his stability in the disease process. But it wasn’t until his hospitalization that I really knew they cared about him – and us.
Despite being on maternity leave, his neurologist at the time checked in with us daily and made sure that the hospital team was keeping her updated regarding test results and progress. We didn’t ask her to do this – she genuinely cares about him and did what she could to help.
His primary care physician coordinated all the care he would need upon his return home, placed orders for durable medical equipment (DME), approved all of the things that required a pre-authorization and welcomes working with his neurologist, even though they work for different, and competing, medical groups.
How did we get so lucky? We live in a big city, which helps, because there are many physicians to choose from. But we have found that pre-screening doctors helps connect us to the ones who are a right fit for us. Some physician groups offer “new patient visits” where a patient can meet with a doctor before selecting them as their primary care physician. And since we are all so different from each other, and since needs can vary so much from one patient to another, a visit to determine the chemistry is helpful. Word of mouth is also helpful and when someone recommends a “good” physician to us, we listen. Online reviews are also helpful in identifying potential candidates for an ongoing care team.
Having these physicians on our team was crucial to surviving the weeks of in-patient care my husband received – and equally important now, as we continue the recovery process at home.
Save All of the Phone Numbers
Something as silly as not being able to find the right number to reach the person you need in a crucial moment can send anyone under stress into a tizzy. My iPhone 6S is quite literally my handheld lifeline to every clinician that helps care for my husband – even more so when he was hospitalized. Some of the numbers we saved:
- Nurse and PCA assigned to your person – so that if something urgent needs to be addressed, we could reach the staff quickly, instead of (and sometimes in conjunction with) using the call button.
- Nurse’s Station – we kept this number saved so that if I had to leave the hospital to shower or care for our children, I could reach the nurse’s desk for an update on his condition without disturbing him if he was asleep.
- Doctor’s office – we kept this number handy to ensure that if there were questions about what the hospital specialist was saying or doing, we could reach my husband’s PCP and specialist to discuss.
- Pharmacy where we regularly fill prescriptions – we gave this number to the nurses at the hospital and rehabilitation center to confirm dosing of medications.
- Hospital Social Worker – the social worker helped coordinate much of the assistance we would need after leaving the hospital.
The rule of thumb we followed was that if someone connected to his care gave us a card, the information was saved immediately into my iPhone. It saved us a lot of time and energy and helped us speed up connecting with the people we needed in a pinch.
Another piece of advice – label the names you enter into your phone by facility and include the person’s title – this is helpful when you know where the person works, but can’t remember their name because you literally saw 300 people come in and out of the hospital room in four days.
Ask About & Access the Resources Available
When you spend all day, every day for days on end at a hospital or in-patient rehabilitation facility with your loved one, you become acquainted with the staff and services that the facility offers patients. Most of these services require a physician referral – like onsite physical therapy, occupational therapy, speech therapy – most things with the word “therapy” will require a referral.
However, there are other services that may only require a request from the patient or caregiver, like consultations with a social worker, onsite/mobile barber services, visits with a chaplain, and support group meetings.
A social worker worth their salt will have lists of organizations – public and private – that may be able to help you and your loved one transition back to home safely.
And don’t discount the value of the facility bulletin board with information from patients and former patients selling equipment that may be useful to someone transitioning back to the home – and hoping to save some money by purchasing used (but still good!) equipment that isn’t covered by insurance.
Listen to Your Gut
My greatest regret and the source of most of my guilt in this months-long ordeal is that I didn’t listen to my gut. I knew something was wrong. I knew that things continued to be wrong even after my husband improved with the first course of antibiotics for the sinus infection.
By not listening to my gut, I ignored the obvious signs that he was experiencing a relapse that required treatment with high-dose steroids. It also delayed the recovery process which, for many MS patients, includes physical therapy, occupational therapy, and speech therapy. Sometimes, what is lost in a relapse cannot be regained – and while we may never know the full extent of this loss, I am deeply regretful to not have listened to my gut in this situation.
Caregivers – we often know when things just aren’t right. Communicate with your loved one’s PCP and specialists and plan to see them for an evaluation. It may inconvenience you for a day, but may save your loved one from an extended hospital stay.