Caring for loved ones with type 1 diabetes
As the mother of three children, Caroline knows first-hand that balancing a full-time job while caring for loved ones with health needs can be very taxing for a parent. Especially when it involves managing a disease that requires constant monitoring and support, and has no cure. Caroline’s 12-year-old son, Owen, was diagnosed with type 1 diabetes (T1D) at the age of five, followed by her youngest daughter, Charlotte, at the age of eight.
“My son was a shock – we were very worried,” she recalls. “My daughter had a very different diagnosis; she was being followed after participating in a trial study and because of her results, we knew it was coming, but we weren’t sure when. It didn’t make it any easier – just less shocking.”
Type 1 diabetes doesn’t run on either side of the family, but Caroline is no stranger to the disease; her husband, Grant, learned he had it when he was 32-years-old. Yet when a child receives a diagnosis, it can not only be devastating for parents, but also impact their life tremendously.
“Returning to work was a huge challenge for my husband and me,” Caroline recalls. “You are trusting the school to ensure your child is safe, healthy and happy. Yet there are no policies in place to make certain that their diabetes care is consistent. Some teachers are very willing to help and learn, while others are not.”
Owen and Charlotte both started with insulin injections, but now rely on pumps. While time has seen Owen become well-versed in the management of his condition, he still requires assistance on occasion; Charlotte, on the other hand, relies a lot on Caroline for support.
“Sometimes the greatest learning as a caregiver is from trying and just doing,” says Caroline. “In certain situations there is no straightforward answer because every child is different and every child’s diabetes is different. You have to trust your gut and make a judgement call.”
Despite the many stresses associated with T1D, Caroline and her husband work hard to ensure that her children’s primary focus is on enjoying their childhood, while simultaneously teaching them how to care and advocate for themselves.
“The day-to-day burden can be hard because it revolves around managing a disease that is never going away and doesn’t always play nice,” she confides. “As a parent, you want to protect your children from everything, but since T1D is something you can’t prevent, you can only support your children, arm them with knowledge and teach them the best habits.”
Michelle Sorensen, a clinical psychologist based in Ottawa who has lived with T1D for the past 18 years, says it is important to remember that the burden of managing T1D falls on the person with T1D eventually, but the stress of worrying about that loved one never really goes away.
Are you struggling with self-criticism? Has your loved one’s diabetes taken on a toll on your relationship? Do you often feel overwhelmed by caregiver stress and haven’t a family member or close friend with whom you can share your feelings? If so, you do not have to face it alone.
For information on family and/or couples counselling and support groups, please contact your health care provider for a referral in your area.
“Parents have a hard balance to find in terms of how involved to be and how much autonomy to give to their developing adolescent or adult child,” she says. “Those who have managed T1D for their children at some point know that the demands on the person with diabetes are so much greater than most people would ever realize. When you have the potential for fatal errors, it is extremely hard to let go. However, ultimately they need their child to learn how to manage themselves, and much of that learning is experiential.”
As national coordinator of Donor Relations at JDRF and an active participant in the annual Walk, Caroline has found unwavering support among other mothers of children living with T1D.
“Getting involved allowed me to meet families who are living with similar challenges and who speak the same language (i.e. T1D),” she says.
According to Michelle, “self-compassion” and carving some alone time out of a hectic schedule can help ease the burden when caring for a loved one with T1D.
“The issues for caregivers are often how to stay motivated to help their children with diabetes without burning out, the fear of not doing enough and the difficulty focusing on self-care,” she relates.
Today Caroline is more confident and comfortable in her caregiving role. She has also started a Registered Disability Savings Plan (RDSP) for Owen and Charlotte – “just in case.” While thoughts of the future can be daunting some days, she remains upbeat for the most part.
“As a family we will face any challenges together,” says Caroline. “The improvements in care, technology and research are so promising and that is what we focus on.”
Carlo and Isabelle have been together for almost 20 years. On their first date, Isabelle – who was 18 years old at the time and very candid – divulged she had T1D.
“She made it clear that if her condition was an issue for me, she understood,” Carlo recalls. “At 23, I already had an understanding of what diabetes was, and was impressed that she was open and willing to share that information.”
When they first moved in together, Isabelle taught him about the importance of good nutrition, blood sugar readings and how to administer an injection.
“She has been a great teacher,” Carlo says, “and that has helped me to help her.”
Carlo admits that achieving balance is probably the hardest thing in a relationship with a partner who has a chronic illness.
“You have to learn to trust your partner’s ability to live with diabetes and not live against it,” he says. “You also have to find a way to be helpful, mindful and attentive to their condition without being controlling, over-bearing and obsessive. It is a partnership; each has his or her role and responsibilities. You can lean on each other, but you have to maintain a balance.”
Carlo adds that being prepared for emergencies on a routine basis and taking extra precautions when traveling have allowed him to better cope with Isabelle’s condition.
“A little extra planning makes all the difference,” he explains. “I focus a lot on food because it is easier to maintain stable sugar levels when you eat well-balanced meals at regular hours. I also ensure we always have snacks, juice, extra insulin and a glucagon kit in our car or luggage. When on a trip, we also take note of the nearest hospital.”
“For spouses of those with T1D, there are so many caregiver stresses, which can be taxing on the relationship or family life,” says Michelle. “Everything in one’s life impacts diabetes and diabetes impacts everything in one’s life.”
And when the unexpected does happen, it can be scary, says Carlo.
“Over the years, I have helped Isabelle out of some serious hypoglycemic episodes and have always admired her strength,” he confides.
While Carlo and Isabelle’s greatest concern to date has been the health of their two daughters (who fortunately do not have T1D), they have grown stronger as a couple because of the challenges they have faced.
“I have learnt that living with someone with T1D is like being a co-pilot,” relates Carlo. “You try to help your partner maintain a certain altitude since you can’t let them get too high – or they can get light-headed and lose consciousness – and you can’t let them get too low, or they could crash. You need to read the signs, know the plane, maintain proper fuel levels and altitude, adjust when necessary and enjoy the ride.”