You may have seen my social media posts last week about the death of my mother. Her passing was swift, peaceful and completely unexpected. I am grateful that during the month leading up to her death we celebrated two baby showers, my birthday and Thanksgiving, being with family we had not seen since before the pandemic.
What I did not share until now, is that she died the day I was going to announce the publication of my new book: “A Relationship Contract for Dementia Caregivers.”
If this does not illustrate our life as family caregivers, I don’t know what does. The balancing act between joy and sorrow seems never ending. We plan for and anticipate a new baby or family wedding. Excitement builds and then there is a fall, hospital stay and even the difficult decision to begin hospice. Mixed into the joy of new life in all its forms, is the sadness that someone we care about will not be able to attend the celebration or the fear or realization we may lose them before it even happens.
Mom and I were both excited about this new book coming out but I struggled with how and when to announce it after she died. Then a colleague said, “Do it at the same time, in a blog post. After all, sorrow mixed with joy is what so much of caregiving is about.”
That felt right in the same way continuing to share our story feels right. Mom may be gone, but there are still important lessons I’ve learned as her caregiver that I want to share with you. And it will be her legacy not only to me, but to all the wonderful people who have reached out to extend their sympathy and thank us for sharing our story.
So here goes the announcement, with thanks to my mother who started me down this path when she said to me, “You’ve learned so much, you should find some way to share it.”
“But how do you set a boundary with someone who has dementia?”
Being a dementia caregiver is one of the hardest things you will ever do. And yet, it can also be incredibly satisfying, filled with moments of connection and joy.
Dementia caregivers face many of the same issues other caregivers face. How do you deal with the emotions that surface? What do you do with all the expectations other people have of you? How do you create a support system just for yourself and how do you ask for and say yes to help?
What is completely different is that you cannot set a boundary with someone in the middle to late stage of a progressive brain disease. However, you can (and should) have intentional conversations in the early stage that lets you both plan and decide on how to put their financial, legal, physical, social and emotional house in order. In addition, getting insight into early years is so important for dementia caregivers. Knowing your caree’s history will help you to meet them where they are as their memory impairment progresses and can help you understand where their emotions and behaviors come from.
The dilemma is that too often we don’t realize our person has a memory impairment. We notice differences but chalk it up to getting old, or even worse, bury our head in the sand because it is such a frightening thought.
Getting a dementia diagnosis IS frightening and life changing. But the changes your person will undergo won’t be stopped by ignoring what is happening. A diagnosis lets you plan and prepare to the best of your ability. A diagnosis can help you come to terms with how your person may look the same and may even sound the same, but they are not, and your life is about to change in big and small ways.
Your entire way of communicating is about to change. You will need to take your cues from your caree and learn how to shift from word to action communications. A doing “with” someone is action communication. A doing “to” is word-based communication. Learning to live in moments is another important lesson for a caregiver of someone living with memory impairment. When we treat our caree with compassion and dignity and learn to live in the moment with them, to refrain from correcting them, we can find those moments of laughter and joy.
Becoming a dementia caregiver changes all your relationships, your “contract,” if you will. You will not be able to change the relationship contract with the person living with dementia once they have gotten past the early stage. But you must change the relationship contract with everyone else in your life. Protecting yourself and your caree is paramount to keeping a routine and a calm environment. Without that, your caree’s stress will come out through their behaviors.
In my new book “A Relationship Contract for Dementia Caregivers”, I take you through strategies, tips and worksheets on how best to form a new relationship with the person living with a progressive brain disease and others in your life. I hope you find it helpful and that reading it gives you much needed insight, along with a healing path forward.
Thanks mom, love you. Rest In Peace. I’m so glad you’re with daddy again.
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.