Courtesy of Deadly Prose Magazine.

 Carol D. O’Dell, author of Mothering Mother, is now a regular feature on CNN and FOX TV. Her live events are hugely popular as she speaks on living with Alzheimer’s and Parkinson’s Disease and elder care.  In an interview with Carol O’Dell (no substitute for watching the CNN interview of course!), this heartwarmingly honest author reveals all.

What was the hardest part of writing Mothering Mother?
 
Writing Mothering Mother was challenging and cathartic. My situation as daughter and caregiver on top of other responsibilities was at times unbelievably stressful and bringing that physical and emotional pain to the page was an act of discipline and healing. Writing is a type of meditation, I suppose. It was tough to relive certain aspects of caregiving—both the sweet and bittersweet memories. I find that writing is emotionally exhausting but necessary if the work is to be of any worth. 

What made you decide that your mother should live with you?
 
From an early age, I had made a promise to my mother and father that I would care for them. My mother always had a fear of being put in “one of those homes.” I’m a big proponent of family. I think we should stay close to our loved ones at least for as long as it’s possible. I chose to rearrange my life, and had the family support to create this.  Realistically, I understand that some diseases take a toll and it may become impossible to offer home care. You’re still caregiving when you’re overseeing a loved one’s care—and there are stresses and challenges that accompany that situation as well.
 
Did you ever regret that decision?
 
Only once, when our youngest daughter became ill and had to be hospitalized. I felt I had not caught the symptoms in time because I had been so focused on my caregiving responsibilities.  Now I realize that I could have employed more help, but it was also about the mental climate of my home and how Alzheimer’s had pervaded the atmosphere. It’s very, very hard to stay above the emotional pull of this horrific disease. At that point, I began to seek more help and to consider a care facility, and it was also at that time that my mother took a turn for the worse.

Would you consider you and your mother close?
 
My mother and I and my family in general are like anyone else’s—with a tangled history, hurts and complications mixed in with love and compassion. Close is really a non-issue when it comes to caregiving. Caregiving is about integrity. It’s about the person who chooses to step up, take responsibility (and there are many ways to do that—financially, medically, emotionally, being the primary caregiver, one of many caregivers, or overseeing their care).
 
I did not take care of my mother because we were close. I did so because it was the right thing to do. Because we’re family. Because of the example I needed to set for my own children, and primarily because I have to get up and look in the mirror each morning.
 
What would you suggest to mothers and daughters who say, have unresolved issues?
 
Like many family members and caregivers, and thought I would have opportunities in those last years, weeks, months to “make things right.” I thought we’d have those heart-to-heart talks, forgive, get all cozy and feel at peace with each other. Did we? Yes, though not in the traditional sense, but in small, quiet ways.
I’d suggest that the best thing for mothers and daughters, fathers and sons, etc. to do is to simply accept each other just as you are. Illness, aging, and dying is not the time to try to fix things. It’s the time to love and simply be loved.
 
Was this experience somehow different because you were adopted?
 
No, I don’t think so. We were a family in every sense of the word.  I did and do feel a deep sense of gratitude for being adopted, but not in an obligatory way.
 
In your situation, there were no other siblings involved, but do you have any advice for those who are facing similar situations but have siblings to consider in the various decisions of caregiving?
 
 
I speak to Parkinson’s, Alzheimer’s, bereavement, and professional groups around the country, and I talk to many caregivers who are at odds with their siblings over issues of care. I know this can be a very hurtful situation. My advice is to accept the role you’re in—if you’re the primary caregiver because of your nurturing personality, or medical experience, or proximity to your loved one, or simply because no one else wants this responsibility, then accept this. Let go of your expectations of others. Offer mercy instead of demands. Most people recoil from caregiving not because of selfishness, even though it may appear that way. It’s usually fear: fear of intimacy, fear of not doing a good job, and the biggie—fear of death.
 
There’s nothing wrong in communicating and stating clearly what you need, ways that even long distance siblings or family members can still participate, but if they choose not to, then let it go. The inevitable fact is that most caregiving will eventually end in the passing of our loved one. There’s no reason to lose two family members.
 
What have you done/how have you felt about your relationship with your mother and the writing of this book since her passing?
 
Each day, and every time I give a presentation or speak to people at booksignings, I learn something new. I learn something about myself and our relationship. I’m more appreciative of my caregiving experience as time goes on, and even though I haven’t forgotten how very difficult it was at times, I’m grateful for the experience.
 
There are many personal aspects to your book, places where you and your mother are vulnerable in your thoughts and actions, were you ever concerned how people would react to this?

I wrote Mothering Mother as an act of survival. I wrote it because most of the caregiving related books I found were medically based and rarely touched on the personal ramifications as we come back together as family. I was a healthy, active vibrant 39 year-old when I chose to care for my mother full time. I still had (and have) a mind, body, heart, intellect and creative spirit that needed challenging.

I needed someone to be honest with me about the nitty-gritty side of caregiving, not the physical side per se, but the terrible, awful thoughts you have in moments of sheer desperation, well as those life-altering/decisions you are sometimes required/demanded to make in the course of caregiving that define you as a person. That’s why I wrote the book, to work through these head and heart issues, and to hopefully offer insight and comfort to those in similar situations. Aspects of Mothering Mother are for everyone. It’s about our relationships and how they define us.  Many of my readers are not caregivers, they’re simply readers who enjoy a good story and they understand how to apply these life lessons to their own situations.

I had to come to grips with “what will my mother/family/neighbors think of me.: After deciding that Mothering Mother could do more good than harm, and could help other caregivers feel less alone, I was able to be less concerned about what  people thought of me. I wanted others to laugh and cry and accept their lives, and risking my own vulnerabilities in order to relieve the stress and struggles of others seems like a good reason.

In writer terms, I decided to offer my emotions in real time—and wrote in vignette style (since caregivers are exhausted and are constantly interrupted). I created brief stories that would still fit into an overall story arc that would be a satisfying read as well as helpful. Writing engaged my intellect and creativity while I was in the thick of caregiving. I needed that. I needed to be able to think, analyze, observe and reflects.

Appendix Information

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In a landmark study by Persona Corp, the inventors of CogniMATRIX^TM and Persona Plan^TM, respondents from all across North America overwhelmingly chose the Internet as their favorite “can’t live without” entertainment activity, with books as a close second. Films were not a top choice with these 10,800 respondents, considered representative of North America and accurate to within plus or minus 2%:

• 36.4% “Can’t Live Without Internet”
• 30.6% “Can’t Live Without Books”
• 28.6% “Can’t Live Without Music At Home”
  
• 9.7% “Can’t Live Without Theatrical Films”
• 18.4% “Can’t Live Without TV Movies”
  
• Reality TV you say? Only 13.8% “Can’t Live Without Reality TV”

Equaling eye-opening are the numbers for “I don’t indulge at all”:

• Only 6% “don’t indulge in Internet surfing”
• Only 6.1% “don’t indulge in reading books”
• Only  4.5% “don’t indulge in music in the home”
• But 14.5% “don’t indulge in Movies in the theatre”
• While only 5.3% “don’t indulge in TV movies”
• And a whopping 25.8% “don’t indulge in Reality TV”