Lisa has been living with Multiple Sclerosis (MS) for over five years. She and her partner, Michael, just celebrated 20 years together. Each have children from their previous relationships, and both are still working part-time. As Lisa’s symptoms worsen, she requires more assistance. Michael is struggling to balance the demands of being a partner and caregiver to Lisa.
Michael is finding himself feeling sad about the debilitating effect MS is having on Lisa. It’s hard to watch the person he loves no longer able to be the person she once was, and he feels guilty for feeling like he’s losing the partner he once had. Michael is also physically more tired. He’s not sleeping well and his morning exercise routine is being impacted. Both Michael and Lisa are finding themselves socially isolated. They were involved in several community programs and had a healthy social network. Now, they are struggling to figure out a new “normal” for themselves.
Here are a few strategies from spousal caregivers:
Nurture the Bond
Nancy, who cares for her husband, Bruce, suggests, “It can be hard to maintain a healthy relationship amidst doctor’s appointments, fatigue, changes in physical abilities that can impact sexual intimacy and a range of emotions. Find small but important ways to stay physically and emotionally connected. For us, we both realized our relationship was changing and we had to adapt. We like to snuggle and watch movies and shows together. I also read a novel out loud to Bruce in bed and it’s been one of best ways for us to stay engaged with each other emotionally.”
One thing they are both working on: showing appreciation for each other and avoiding making assumptions. Both Bruce and Nancy agree communication is essential (even when it gets sticky and tricky!)
Lighten the Load
Sam, who is caring for his wife, Sarah, with early onset dementia, speaks about the importance of allowing his wife to do as much as she can. “It might be easier for me to do everything, but she wants to help as much as she can because it keeps her feeling purposeful. I want her to stay as independent as possible, so we lighten the load for each other.” Sam also prioritizes having someone clean their home to free up time for other activities. He and Sarah have already discussed Sam’s need for respite down the road.
Find Your Tribe
In Sam’s case, it turned out that a work colleague was going through a similar situation. They’ve created a regular system of support in a safe way to express and process the wide range of emotions that are surfacing. For Nancy, her primary support is her siblings with whom she is very close. They stay in touch regularly by phone and text and once a month she meets with her sister to connect in person. Some spousal caregivers
seek out support groups to connect with other spousal caregivers. It provides a place to find comfort and understanding, as well as inspiration and tips from others’ experiences.
Create Opportunities for Well-Being
Prioritize your well-being through physical exercise and emotional and spiritual support – one of the keys to cleansing your mind of stress and maintaining stamina. Research shows feelings of overall well-being are linked to better mood, improved cognition, better self-regulation of emotional responses and improved immunity. Staying well might feel like “just one more thing” when you’re faced with caregiving. Try seeing it as a welcome reprieve and a way to keep yourself a priority.