Carol's interview at "Up Close with Cathy Unruh"

To watch ATLANTA (FOX 5) interview

or Click Here to goto FOX 5 web site

To watch Miami CBS 4 interview

or Click Here to goto CBS channel 4 web site

Selected Publications (underline texts are linked)

Mothering Mother Interview

Click here to lisen to Carol's Radio Interview
on the "Coping with Caregiving Program" on WSRadio--with host and bestselling Jacqueline Marcell, author of Elder Rage.
Visit Ms. Marcell's site at http://www.wsradio.com/internet-talk-radio.cfm/shows/Coping-with-Caregiving/archives/date/selected/07-14-2007.html

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Intrerview with Author Carol D. O'Dell

and Journalist Belinda Hulin

1. Given your adoptive family’s religious background as well as your mother’s battle with Parkinson’s, how do you feel about stem cell research? And how would you think your mother have felt about it?

In response to the first question, let me say that I’m excited about cellular research and the medical advances it offers. I feel cellular research should continue, and while there is  much controversy about stem cells, we must not close this door completely but continue to debate and explore this highly complicated and volatile issue where so much is at stake. Cellular research is in its infancy. Are we going to make mistakes? Absolutely, but that does not mean that we halt in this very promising field that can impact millions of lives? No, we cannot turn our backs on it simply because it’s controversial.

Personally do not feel that the research should include fetuses. This is not the only option researchers have. Sometimes boundaries have a way of spurring us into a new direction, and instead of being a damper, it can become a catalyst.

2. In your opinion, given your mother’s religious views, how would she feel about stem cell research if it meant a possible cure for Parkinson’s—a disease she suffered from?

If my mother were still alive, I believe her religious convictions would have overshadowed anything else. She would have chosen to live with Parkinson’s rather than take the chance of harming a life. That would be her perception, and as limiting as that might seem, I always admired her for her convictions. She would perceive her cure as killing a life, and she would not choose that.
 
I learned a long time ago to love and accept my mother, and in the few areas that I could not accept her viewpoints as my own, I learned to tolerate her blind-sidedness knowing that I’m sure I have my own narrow-mindedness (my daughters will be glad to verify that) and I hope to be loved just as I have loved my mother —in spite of myself.  I also learned to speak my mind to her, and simply allow those differences to exist between us and not threaten to tear us apart. It took a long time to get there.

3. How do you feel about assisted suicide?

I’m grateful my mother never asked, and I feel great sympathy for those caregivers and loved ones who find themselves in this very difficult situation. There is nothing more excruciating than to watch your loved one suffer, and for many families, this can go on for years. I don’t know what I would have done.

I think that for the most extreme cases of prolonged pain and suffering and where there is no hope for recovery, that their decision is no one’s business. The decision should be made by the loved one, the caregiver, their physician, clergy, and mental health provider or whoever they consider in their counsel.

4. Carol, you chose in-home care for your mother, but this option is not afforded to everyone. How do you feel about elder-care facilities?

At the end of my mother’s life, I had come to the conclusion that my mother needed to be placed in a care facility. The factors that led to this decision were my mother’s increasing level of care, her increasing anxiety and violence and my inability to reason with her, but the primary factor was the mental “climate” of our home. Mother was basically uncontrollable and my family life was suffering. I was beyond exhausted and my daughter, Cherish (our fourteen year old daughter who developed a kidney condition during this time) was suffering both physically and emotionally. It was time to let go. That’s why I have great empathy for what families go through. This is not easy, and I’m not about to spout off judgments. Do the best you can. 

While I chose in-home care, I certainly understand this might not be an option for someone else. I’m very glad that I had arranged my life to be able to offer this for my mother.  Just as young children thrive with the consistent and loving care of their parents, so do our elderly. I found that just as with my children, I was able to offer my mother patience, consistent care, a sense of home and family—everything from home-cooked meals to observing her moods and idiosyncrasies. This was taxing, but I loved her enough and my family enough to try and do it right. My family witnessed my frustrations, but they also saw how very hard I tried, how I grappled with each decision and truly cared about my mother’s welfare on every level. Not many care facilities can offer the intimacies, tenderness, and thoughtfulness of home life. If they did, we’d all want to live there.  

I realize it simply might not be possible—for a variety of reasons. There are times and circumstances where homecare would be a very bad decision. I ask people to consider it—not only for your loved one, but for yourself. It’s an amazing journey. I won’t kid you, it’s tough, but no matter what care you choose, this is going to be hard. It’s hard to grapple with disease and dying. It’s hard to make the difficult decisions you’ll be required to make for your loved one. A care facility is just one of those decisions.

Care facilities can run the gambit from desirable to deplorable. Money is oftentimes the deciding factor, but not always. You need to be very involved not only in choosing of the facility, but in the weekly monitoring. I say weekly (with “surprise visits at varying times of day and night) because too much that can happen in a month. There are so many issues here: sanitary conditions, medication and medical issues, depression, anxiety, Alzheimer’s issues and violence (whether it’s your loved one or someone else), theft and other forms of violence against your loved one, privacy, feelings of abandoned, loss of personal control of their lives and finances, and being removed from their network of family and friends. Many of these issues must be addressed by the caregiver in home-care but are exasperated in a care facility. All that I can say is, do your homework and stay involved.

5. You chose not to opt for a feeding tube for your mother, why? Was this in her living will?

My mother was 92 years old when she died, and she had suffered for over a decade with Parkinson’s and to the best of my knowledge, Alzheimer’s or some other dementia related disease the last two years of her life. I chose not to opt for a feeding tube because I didn’t see how her life would improve if we were to prolong life. Mother had forgotten how to swallow—food pooled in her mouth. She was incoherent and after much deliberation, I saw her inability to take in food as nature’s way of allowing her to leave this world naturally. I discussed this with hospice, her doctor, and the clergy and I did not feel that I was starving my mother. Her body was shutting down. She was not in pain—to my knowledge. Did I make the right decision? I hope so. I did the best I could.

I remember thinking of Nancy Reagan and how long her Ronnie had suffered. I knew that she did not have this option—that as former President of the United States his life had to be preserved. Whether this was her decision or a decision that was made for her, I can’t say, I only know that sometimes love doesn’t look like love. I let my mother let go. I followed her body’s cue. If this were my forty year old husband, or my eighteen-year-old daughter, I might have made a different decision.

6. In light of the Schiavo case, how do you feel about who should make the final decision of life or death?

The Terri Schiavo case is exactly why living wills and talking to your family members is so very important. Our loved ones need to know what we want—and they need it in writing. Don’t put your loved ones through the agony this family suffered.
The only thing I can say is that legally, when we marry, we transfer the rights of those types of decisions to our spouses. Whether they manage that properly is another case. But I’m also a parent. I cannot fathom the agony that family has experienced. We need to fill out a living will and encourage our loved ones to do the same.