The Helm is for dementia caregivers. It's a place to come when you're finding your way.
Think of us as your good friend who just went through this. We got the flat tire. We got stuck in traffic. We've cried. A lot. We want you to benefit from our hard-learned lessons.
We also want you to experience the joy we have. We've sung and danced. We've fallen to the floor laughing (often over the mess we've made). We've had real happiness. Real connection. We want that for you.
This is new. We are still building it. If you have a story or idea to share, let us know here.
The Helm is designed to help you navigate caregiving, but we realize you might not know how to navigate The Helm. This section is designed to orient you to The Helm and what you can do here.
The core of The Helm is lived caregiver experiences. We designed the site for you to be able to see how other caregivers navigated care decisions. (note: if you are wondering if you are a caregiver you can look over here)
Each care decision has its own page that highlights issues related to that decision area and then how three caregivers worked through that decision. You can click to read the rest of a particular caregiver’s story. Or, at the bottom of the page, you can link to all the caregiver stories that deal with that decision. (Note: one day we hope to make this function a bit easier to use, right now you need to open the whole story and then search for the part you are interested in.)
You can explore caregiver stories in a lot of different ways. Every story has a panel at the top that explains a little bit about who the caregiver is and who they are caring for. Stories are organized in sections that align with care decisions. Stories also have tags that highlight other themes in the story (e.g. alcohol, anxiety, ambiguous loss). If you click on a tag, you can find all the other stories that also have that tag. The stories reflect what the caregiver told us about their experience. To enable caregivers to share openly about their lived experience, caregivers appear under a pseudonym and identifying details about the caregiver and their Loved One have been omitted.
The Helm is building out tools to help you in your caregiving journey. These tools are based on lessons from real caregivers about what worked for them. Currently, these include:
Scratchpads: A scratchpad is part guide, part notebook. It is designed to help you develop your own strategy for a given care decision, like documenting early signs or getting a diagnosis. Enter your information to have a Scratchpad emailed to you.
Peer Coaching: Peer caregiver coaching is currently available for free to a limited number of dementia caregivers. Fill out some basic information about yourself and your Loved One to join the waitlist and, when a peer coach is available, we will open a dedicated line between you and the coach. You can text them any time you like and they will do their best to get back in touch within a few hours.
What's in a name? At The Helm, a lot.
The Helm is the part of the ship used to steer. It is where you set direction. Sometimes you set out for a destination, position the wheel and sit back. Other times, unexpected waves set you off course and demand that your full attention be focused on getting you to your destination. We often hear caregivers use the word "navigate" as you move through big and small waves, to new and common destinations. We hear caregivers describe “navigating” decisions, often with limited knowledge of the path ahead.
We chose the name The Helm to honor the role caregivers are put in — making decisions on behalf of another adult — and to try to offer caregivers a central place to turn as they navigate their role.
Your job is hard. We want it to be a little easier. We aim to give you digestible, trustworthy, actionable information that simplifies your decision-making and eases your burden.
MAKE YOUR LIFE EASIER
Even in tough times - and we know there are tough times - there are moments of laughter, love, and maybe even silliness. We want to help create more of those bright moments.
We won't tell you what to do. These are your decisions. But we will stand with - or sit with you on the bathroom floor. We are amazed by the care you give and hope to be a trusted friend, a friend that's been there before, who you can turn to. We also hope you'll tell this friend when she could do a little better.
STAND WITH YOU
I am an Alzheimer's caregiver. While my family is fortunate to work with excellent doctors, I often find that I am on a scavenger hunt, searching for clues of what families a step ahead of us have learned. I believe we can make it a little easier.
When I met Caitlin ten years ago, she told me "Murder She Wrote" is her favorite TV show. Her love of Angela Lansbury might have something to do with why I thought she would be a great partner for The Helm. That and she cares deeply about -- and does an amazing job of -- finding caring, rigorous ways to improve people's lives.
I want to make it easier for people to live happy, healthy lives. I've spent my career learning about "what works" and getting those lessons into the hands of those whose lives would be improved by that information.
Rebecca and I met when we worked together to expand health and social services that have been demonstrated to improve people's lives. She has been an incredible advocate for the people we serve, her family, and her friends -- and I was thrilled when she decided to share that superpower with the world via The Helm.