A letter from Deb, founder of Monarch Care Partners

 

You have fully emerged into the world of care giving. But I have a call of action for you.  I want you to enter into a world of care partnering. The idea is that you are your loved ones partner and on their journey through illness and dementia.  It is different in that you are not doing actions for the person but with them. I am writing all of this to help prepare you and to protect you from some of the pain that I endured.

 Care Partnering involves all parties of the family. It means you are honest, aware, and willing to accept each other's limitations.   I believed that my role as daughter was to take care of everything for my mom. Society teaches women to expect that they will be the one in the family to shoulder the burden of care.  That expectation alone sets families up for failure to thrive during the hard times. One family member can not and should not handle the journey of dementia alone. During the early stages of my mom's dementia I would visit her and try to fix all the mess. I noticed all that was wrong and I would clean the house or go out and buy systems to help keep her in line. A few years ago I found out that my step father referred to me as Hurricane Debbie because I came down like a force of nature and when I left they had to learn to adapt to changes or clean up and resume their life.

   What I learned is that they were not going to make changes that I thought were important just because I was the daughter.  They always would listen to my reasons but never really changed. Your parents love you and will always appreciate what you offer. But if you think they will change their ways based on your research it won't happen at your level of expectation.  

  So I guess my best advice is to gently try and understand what and how your mom wants to age. Does she want to live at home? Is she willing to receive help from outsiders?What brings her the most joy? Does she have the ability to recognize her weakness as much as her strengths? How did she care for her parents?  Does she value the instant gratification of a vice over the longevity of her life?

 But the most important question that has to be answered is from you.  Are you willing to meet your loved one where she set her expectations? Will you be able to honor the parts of her that don’t align with your expectations? Can you live with shared compromises?

As the journey of dementia progresses you will find that you will be making decisions on her behalf. I promise that the hard work of understanding the boundaries of the future will pay off .

I am asking you to do a little soul searching and investigating. I am sorry if this is too heavy, but I promise when you do the hard work first you will be able to create joyful moments with your family in the future.

Take good care, 

Deb


Truly the journey of care partnering  with a loved one begins with your inner intention and your ability to let go of your expectations. 

 

Deb Kroner is a dementia care specialist serving patients and their families. If you’re interested in talking with Deb about your loved one, please get in touch.