At some point in their lives, nearly half of Canadians aged 15 and older have provided care to a family member or friend with a long-term health condition, disability, or aging need. Libby and Grant Sanderson have been married for 36 years and are no exception. When Libby was diagnosed with multiple sclerosis (MS) in 1990, their world turned upside down. Grant is now Libby’s caregiver and helps her with everyday activities as well as runs a support group at the MS Society of Canada. Today, Libby and Grant are stronger than ever and have agreed to share with us their story and how they have persevered through it all.
What was your initial reaction when you found out about your MS diagnosis?
Libby: I had been experiencing numbness for a while, so when I first received my diagnosis of relapsing-remitting MS (RRMS), I can’t say I was surprised. The worst part had always been not knowing what was wrong with me, so it was a relief when I was finally diagnosed. At least they had a name for this thing going on with me.
When I told my friends and family, they were understanding and supportive. I experienced the same thing with my mother when she was diagnosed with lupus. Nobody sat me down to explain what my mom’s medical situation was and I wish they had, so I wanted to handle the situation differently.
Grant: When I first found out that my wife was diagnosed with MS, I broke out into tears. I remembered all the horror stories I heard in the past, and it terrified me. Although I was afraid, I knew it was better to know what we were facing. It’s easier knowing what it is so we can deal with it and hope to conquer it. For the first four or five years, Libby didn’t have many symptoms. She would get flare-ups, which would have major impacts on her lifestyle. She couldn’t walk or talk at times.
How did your family take the news?
G: We have two children. Our son Dana is 31 and our daughter Kerrie is 29. I think our daughter took the diagnosis very hard. Growing up, teenage girls fight with their mothers about the smallest things. This was more amplified with Libby’s MS because she couldn’t do everything on her own. She couldn’t walk or talk at times, and sometimes, I would have to remind her that she can’t do everything by herself. I think Kerrie resented that her mom has MS. This was tough for a young girl, but now her thoughts are changed. I think we are all learning to let go of our expectations.
What have been some of the largest obstacles you have faced as a result of your MS?
L: MS has cut down on our ability to travel anywhere we want, even in the city. Not everywhere is wheelchair accessible.
G: The past eight years have been the most challenging. Libby has experienced a decline in cognition, as well as physical capabilities, which increased her dependence on others. Her short-term memory has significantly faded and her ability to follow cooking recipes has declined. Libby used to have excellent cooking skills, but MS has taken that away. Additionally, some of the people she used to socialize with have stopped communicating with her. Due to a decrease in her cognitive abilities, she does not use a computer or a smart phone, and her lack of access to social media makes socializing more challenging.
How did you first come to be involved with the MS Society?
L: We initially became involved with the MS Society through participating in support groups.
G: The meetings provide a social outing for people impacted by MS. Libby developed friends through this group. We have now been doing the MS Walk for 25 years! I recently began leading one of the local volunteer support groups as a facilitator. I think it is important you get involved with what your family is doing. If it helps support Libby and others, it is an added bonus. I know first-hand what it is like to live with someone living with MS. It can be hard to explain the idiosyncrasies that the illness goes through, so I feel that I can help others experiencing the same thing. These support groups are also continuing to provide a social outing for people impacted by MS. For Libby, this was her group of friends she developed.
How has MS affected you as a caregiver?
G: MS affects more than just the person living with MS. As a caregiver you also take on a level of responsibility. People often ask, “How is your wife doing?” but rarely ask, “How are you doing?” It can be hard and depressing and people don’t always think about asking the caregiver.
If you could tell other supportive spouses one thing, what would you say?
G: Learn about MS. If
Libby starts doing something or loses ability to do something you realize it is
the MS doing it. It’s not her being silly; it is the MS that impacts her. Sometimes
Libby will ask the same question repeatedly – you have to find the patience.
She’s not doing it to annoy me, but because she doesn’t remember. You have to
answer it as though it is the first time and not the thirty-first time.
Patience is a big thing! Find someone to lean on and speak with to discuss the challenges you are facing.
We hope that Grant and Libby’s story has provided some comfort to others who may be facing similar experiences. The bond between a person with a chronic disease such as MS and the person, who provides care, can be very strong and positive. At the same time, caregiving can also be physically and emotionally demanding and exhausting. If you’re looking for additional information and support, the 1:1 Caregiver Peer Support Program offers support and comfort for caregivers of those living with MS. Contact the 1:1 Peer Support Program at email@example.com or call and leave a voicemail at 1-800-268-7582 x3149 to request more information.