Lindsay was at home with their young children and Matt was working when within a span of six months, each became a caregiver to a parent with dementia; Lindsay to her father, Steve, and Matt to his mother, Rosemary.
Life changed as they took on ever-increasing responsibility for the day-to-day life of their parents. For a period, Rosemary and Steve were able to live on their own with support. But, as for most caregivers, the demands on Lindsay and Matt’s time grew even as they were trying not to lose their own life and be present for their children.
Matt admits that much of being able to keep his marriage intact and healthy has something to do with luck. “I got really lucky in terms of who my partner is and that manifests itself in countless ways including, but not limited to, our joint caregiving experience. We tried not to ignore our marriage, so we used a team approach. Because our marriage was important to us, we brought in help. The additional underpinning, the additional adhesive, was our children. Of course, there was tension and plenty of arguments, but both of us were committed to acknowledging what happened. We would walk away and not let it fester. Sorry is a powerful word when you mean it.”
Steve was diagnosed with Lewy Body Dementia about a year into Matt and Lindsay’s caregiving journey. His condition made it a challenge and risky for him to live on his own. The decision was made to have Steve live with them. Moving someone with a dementia into your home can be a difficult transition and yet can also be filled with day-to-day joy. Young children in the home can complicate the transition even more. One thing that Lindsay and Matt were very clear on were that kids can act out and be loud. It is a natural part of childhood and they made it a focal point not to discipline their children because of Steve.
“There were such day-to-day joys with Steve. Little moments of life like having lunch or dinner with him. Having coffee while he ate his breakfast. Because he lived with us, we got to see every smile and laugh and as time went on, they became much fewer and farther in between. Our goal, our priority was to see that smile, laugh, giggle or smirk in a sustained moment of eye contact which showed us he was engaged. The trick for Lindsay and I was to help Steve find joy, purpose and dignity. To help him retain that sense of self. If that is a priority, then you need to be present to share in those little moments of time. The time might be small, but the impact is not.”
Rosemary was also invited to live with them, but she did not want to leave her life on Cape Cod. In addition, it was important to her not to be a life altering presence and she saw moving in with them as being a burden. Matt felt it was important to honor his mother’s wishes, but it was difficult on Matt who lived three hours away from his mother. After two years, it became clear that Rosemary could not continue to live on her own safely, even with support.
The move into assisted living was a long process and at no point was it easy. Matt held family meetings, brought in outside influences to support the idea and tried to help her see it was necessary. No amount of reassuring her that this move did not mean life was ending helped. No amount of telling and showing Rosemary the positives, like how nice the place was, how it was centrally located and close to friends helped. Not even the allure of the potential social life could convince her.
“Nothing worked. I wish I could say it did. Thinking about it now makes me nauseous. It was one of our lowest points. We were fighting and angry, and mom looked so defeated walking into that place for the first time. I guess the silver lining is that a week later it was like nothing had ever happened. The defeat and guttural sadness was gone. It was great to see just because it confirmed this was the right move. I have horrible memories of the days and weeks leading up to the move, but seeing her adjustment was joyous and fulfilling. We don’t have any certainties as caregivers. We are always operating in probabilities, so getting a win in this new phase of the care journey was great.”
Matt’s advice to anyone starting out on a dementia caregiving journey:
- Realize that the priority needs to be helping your loved one find joy and keep a sense of purpose. They need to keep feeling like a person, not a host for the disease.
- Ask for and accept help. It is not easy to do, I still struggle with it. Be proactive about asking for help – before you even need it. Accept the help that is offered. You need to be as good at accepting help as you are in asking for it.
- Don’t correct your loved one. If you feel like they are not in harm’s way, lean into their reality. Correcting will only add friction to conversation – it took me so long to learn this, so many things they say are disconnected from reality.
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: Free 30 minute consulting call
Deb is the author of “Your Caregiver Relationship Contract.” Available in both English and Spanish, this book explains how to have an intentional conversation and the how unspoken expectations can cause problems during caregiving. Click here to learn more about Your Caregiver Relationship Contract or here for the Spanish version: Su Contrato de relación como cuidador de un ser querido.