Written by Janie Martin, ForgeWorks dementia educator and consultant
February is often filled with thoughts of romance as we celebrate Valentine’s Day. But what does love look like for those living with brain change and their care partners walking this journey with them? The need for love and connection does not fade — in fact, it often deepens.
A woman attending a dementia education session shared a beautiful testimony. Before she left for the class, her husband said to her, “Go learn how to control me.” As she drove to the training, something about that conversation didn’t sit well with her. She cared too deeply to let it rest. So, she called him and said, “I am going to learn not to control you, but to understand you, to love you, and to communicate well.”
His response was simple and full of emotion: “Thank you.”
What a beautiful love story — rooted not in fairy tales, but in the real, familiar journey this couple is navigating together, even though it is a path they did not choose.
This couple is still at the beginning of their brain change journey. As time passes, the wife will need to work through her own boundaries and understand her own limitations. Fatigue and feelings of being overwhelmed or angry may be a very real experience for her. As I work with care partners and their loved ones, I often remind them of the following:
1. Frustration and anger are normal. From time to time, everyone gets frustrated with their partner or family members. Frustration isn’t limited to couples walking a dementia journey. If you do find you are frustrated or angry, make sure your loved one is safe and simply leave the room to give yourself time to calm down and evaluate the situation.
2. Accept help! Accepting help does not mean you are admitting defeat. Instead, accepting help allows you to be an even better care partner, longer. Caring for someone with brain changes can be physically and emotionally exhausting. Allow others to support you and your loved one on this journey.
3. Be realistic. Realistic expectations for what you can do on your own and what you can do with support are critical to your success. It is not realistic to think you can manage 24/7 care indefinitely.
4. Care for yourself. Although taking time for yourself may feel selfish, it’s critical to your emotional, physical and spiritual well-being. Take time to do things you enjoy, such as reading, enjoying the outdoors, going for a walk or cooking. Taking a physical break will allow you to care more effectively when you return.
5. Practice self-compassion. What would you tell a friend or family member who is walking the journey you are currently walking? You would tell them things like: You are amazing! You show so much commitment and dedication. Of course, you have tired and frustrating days! Use these phrases to encourage yourself, as you would encourage a friend.
If you are walking a dementia journey, know this: love still matters. Your needs and limits matter. Caring for yourself is not a detour from love; it is a part of it.
Love in the face of brain change is not about perfection. It’s about presence. It is about presence, learning, adapting and choosing grace on the days when patience feels thin. And sometimes, it is simply about pausing long enough to remember this journey belongs to both of you — and that love, even now, is still very much alive.
Janie brings hands-on experience in providing quality, compassionate nursing care in multiple environments. A licensed practical nurse, Janie is deeply passionate about excellence in person-centered care with a priority focus on the physical, emotional, and spiritual advocacy for people with dementia. Janie was a care partner in her own mother’s journey through dementia, and as a young wife, Janie cared for her husband who suffered cognitive decline due to a brain tumor. These experiences add up to her ability to support from several perspectives. Her certifications include Dementia Practitioner, Alzheimer’s Disease and Dementia Care Trainer, Medication Administration Trainer and Certified Montessori Dementia Care Professional. Through ForgeWorks, Janie offers CDP training to professionals and families serving loved ones living with dementia.