Six Catholic girls born into a family of 9, raised in Nova Scotia. All but two of the girls remained in the Maritimes. Mary Catherine, aka Kay: adventurous and independent, ventured off to Toronto to embrace city life. There, she lived in a high-rise apartment, worked for banks and investment firms, traveled by subway, and enjoyed the diversity and opportunity living in a large city could offer. Our sister Kay made annual visits to NS for weddings, funerals, graduations, baby showers, or summer visits. Seldom did we venture to Toronto.
September 16, 2013 all that changed.
A mysterious, sudden and serious case of GBS had turned her world upside down and ours too. A call from her good friend Edna, who had provided care in the previous days, informed us she had been admitted to Toronto East General Hospital. Needing family consent for treatment, our oldest sister Ann flew to be with her. Little did we know how scary the months ahead would prove to be. Daily communications with all family members was crucial, and we promised to keep it off social media sites, using email instead.
With Ann at her side, Kay’s condition continued to worsen. Within days she was placed in the ICU, trached, ventilated and helpless. Collectively we read articles on GBS, cried and prayed for God to help her through this. As the days turned into weeks without any improvement it was obvious Kay would need one of us there continuously. It was as much for us as it was for her. We soon developed a plan for a rotation of ‘sister visits’. Some of us, still working, had to secure time off. Others were able to go for longer periods. During the most critical stage we overlapped visits. Kim arrived from Alberta, later Betty then Dorothy from Nova Scotia.
Kay remained totally paralyzed and ventilated in ICU for 3 long months. We anxiously watched and talked to staff while they cared for her. Our eyes were glued to the monitors as her blood pressure and heart rate fluctuated for months. Numerous infections and a heart attack complicated any progress. The TEGH staff did their very best to keep Kay alive and comfortable, for which we are grateful. They too, had to endure 5 different sisters, with various personalities, viewing and questioning every procedure, sometimes even disagreeing on the plan of care. Some staff, neurology, respiratory and physio, who had GBS experience, were wonderful in caring for her and us. Others required constant reminders of her needs.
Coping with Kay’s illness was difficult. But being so far from our home and adapting to the city life she had embraced for years was yet another challenge. We were ill prepared to travel unfamiliar locations using public transit, often in the dark. The extreme winter weather added more difficulty. Coming home to her empty apartment exhausted and emotionally drained often involved crying with each other via Skype.
Our saviors were Kay’s good friends and neighbors. They provided drives, meals, advice, and much needed comfort in a big unfamiliar city. These were folks we heard stories of for more than 20 years, but had never met. Suddenly we became deeply connected in our effort to see Kay through this. One friend in particular, Wendy secured our contact with the GBS Foundation.
Without seeing any improvement in Kay for months, we challenged the staff to consider another IVIG treatment. Shortly after the second treatment we saw what we considered a miracle. Kay had very slight movement in both arms. Everyone in ICU celebrated the good news.
Throughout November and December Kay continued to show signs of healing. She gained more upper body movement and some ability to breathe. Kay had a visit from two women from the GBS Foundation who offered support and encouragement. The best Christmas gift we received was a video sent by Eunice of Kay’s visit to the hospital lobby to see the Christmas tree. There she was sitting up in the wheelchair with the trachea tube closed off! It was only then we began to believe the GBS was finally leaving her body. Eunice spent 5 weeks with Kay over the holiday season, away from her husband, coping with terrible weather and a bad cold. We are grateful for her commitment.
Early in the New Year Kay transferred to the respiratory unit to be weaned from the ventilator and various other apparatus attached to her body. Betty had the pleasure of being with her while the catheter, pic line, trach, and feeding tubes were removed, all in one week! She was thrilled to be eating real food and having her voice again. Soon afterward Kay asked to visit the ICU to thank the staff that took such good care of her. Although it was an emotional visit, the staff was overjoyed to see the new Kay.
Plans then began to secure a suitable rehabilitation facility, hopefully one with other GBS folks. Leaving TEGH was both exciting and frightening for all of us. We were familiar with the staff, location, and they knew our sister Kay so well. But starting over someplace else meant her physical rehabilitation could begin. We all wanted that badly. Word of the move came to us on a week when none of us were with her. She transferred to Baycrest Hospital with the support of a devoted neighbor and friend Terry. Only after Ann arrived did we realize it was primarily a geriatric centre with little or no GBS experience. A quick call to Donna Hartlen of the GBS Foundation, assured us that Kay was in good hands. After some initial bumps, it has turned out to be a perfect location with good physio/occupation therapies. While there Kay has resumed more control of decisions and choices in her own care and rehabilitation planning. We are relieved and happy for her. Kay now owns an iPad Air; a family Valentine Day gift. With this tool she skypes us daily, emails friends, reads the paper, listens to radio, watches movies, reads books, etc. Having time on her hands has allowed her to maximize its use to stay connected with the world beyond Baycrest.
Kay is an inspiration to us in her determination to regain mobility, starting with the most basic things as using a fork or pulling on her shirt. At times it is overwhelming and she needs to let the tears run. Being with her then is important not because we can say anything to help, but just to hold her hand to get through that moment.
We sisters are on our third rotation of ‘sister visits’ and appreciate everything that’s been done for Kay; from us and the medical system. We will continue to support her as much as needed until she regains her former life.
As a family we are now closer than ever. Our one and only living brother Bob in Florida, has been in constant communication, providing a sounding board and gentle advice. Each of us has brought their own perspective and attributes to the situation; all of these helpful at different times. We did truly rely on each other’s strengths and are forever grateful for having each other.
In reflecting on what we’ve been through we have some advice for caregivers in similar situations:
- Establish Power of Attorney for medical and financial needs. Frequent communication was needed with Kay’s physicians, employer, bank, insurance company, etc. All required proper documentation along with photo identification before allowing us to act on her behalf.
- Please talk to and reassure your family member. Let them know you are there even when they appear unaware. Our Kay has few clear memories of her early weeks in ICU, but she remembers us speaking to her and letting her know we were taking care of her.
- Appreciate the fact you won’t always agree with medical staff decisions. Don’t be afraid to question it, but accept that some decisions are made for the right reason even if you don’t fully understand.
- Let the little things go. Not all staff performed procedures the same way. Nurses had different dispositions, as did we. In the end every one of them aided Kay’s recovery in some way.
- Accept the support offered by friends and neighbours. It is important for them to do something constructive to show their love and concern for us and for Kay.
- Be an advocate for your family member, but do it elsewhere. Assume they can hear every conversation you have in the room. If you are questioning procedures, step out of the room and/or ask to speak to the nurse manager. Our best results came from putting our concerns in writing and having the right email addresses.
- Remember the recovery of your family member is not only physical, but also emotional and spiritual. It takes endurance unlike anything before in their life. Some days you have to share that load to help them get through to the next day. Prayer may not be a part of your daily life, but it will bring comfort.
Proud siblings of Kay, Ann, Eunice, Dorothy, Betty, Bob, Kim