The first in a series for dementia family caregivers.
Amy Matthews is someone I deeply respect. She is the person I collaborate with on dementia articles for the website. She is the person I went to for guidance on my new book for dementia family caregivers. When I first heard her say, “You are the most important person in this caregiving scenario, not the person living with dementia”, I recoiled like she had told me a nasty secret.
An instinctive recoil to what can seem selfish is a reaction you may have as well. And yet, Amy is absolutely right. The problem as I see it is that the healthcare system, family and friends are focused on the person with the memory impairment. Conversations center around behaviors, around solutions for everything from wandering to outbursts and the question that is asked most often is “How is he/she doing?”
I get it, I do, but the only way to shift some of the focus to us is to claim the fact that we must be the most important person in this caregiving scenario. When you claim that statement and give yourself permission to BE the most important person, you can operate from a position of strength, without guilt.
The dilemma is we fall into the trap of being so focused on our person, on the day-to-day tasks, caught up in worry and grief and sheer lack of headspace that we don’t put ourselves first. We know the statistics of family caregivers who fall ill or die before the person they are caring for dies. We know how important self-care is and there are articles after articles that talk about self-care as journaling, doing something creative or taking a nap.
All of those self-care suggestions are part of putting yourself first, but it goes beyond that. Putting yourself first means we create a care plan for ourselves. That care plan must include a support network. That care plan is realistic about the family member who upsets the person living with a progressive brain disease. That care plan gives us permission to set boundaries with the family about the time and place for interaction, including the holidays. After all, if they insist on telling mom that she is wrong about her birthday or that her beloved husband is dead, YOU deal with the outcome after they leave.
A care plan for yourself defines self-care as what brings you back to YOU and allows you to keep parts of your life before you became a caregiver. A care plan for yourself will have a profound impact on your life during caregiving and after it ends.
As I say in the book:
“The truth is, as the memory impairment progresses, your caree’s world gets smaller and smaller. From the very beginning of this journey, you need to guard against your life getting smaller and smaller along with theirs. Keeping healthy connections is the foundation of your self-care and a profound reason to be intentional about creating a care plan for yourself that you adapt as you go along.”
Remember, YOU are the most important person in this caregiving scenario.
To book Deb as a guest speaker for a dementia support group, please contact her at deb@advocateformomanddad.com.
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 the author of “Your Caregiver Relationship Contract and “A Relationship Contract for Dementia Caregivers.” Your Caregiver Relationship Contract is available in both English and Spanish. It explains how to have an intentional conversation and the how unspoken expectations can cause problems during caregiving. A Relationship Contract for Dementia Caregivers explains how important it is to learn how your person wants to live their life out and how you, the caregiver are the most important person in this relationship, giving you tips and tricks for this journey.
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. Click here to learn more about A Relationship Contract for Dementia Caregivers.
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
