Hope Loves Company

QuestionForLiving interview with Jodi O'Donnell-Ames, October 27, 2011 regarding Hope Loves Company. 

QuestionsForLiving: What, if any questions, were you asking yourself that led to the creation of Hope Loves Company?

O'Donnell-Ames: There is one question which I ask myself constantly, especially after a life- altering event and that is:

  • Why have I suffered and survived through this difficulty?
  • How can I use this knowledge and experience to make a difference in the lives of others? 
  • How can my experience grant another person much needed help?

QFL: What are your primary questions for building and growing Hope Loves Company?

O'Donnell-Ames: I have evaluated the current situation for patients living with ALS and then I bring myself back to the painful year of 1995, when my young husband Kevin, then thirty years old, was diagnosed with the terminal illness and our world as we knew it fell apart. Our daughter Alina was only two years old.

I wish that I had asked :

Who will help support our daughter through this difficult journey?

Even though I tried to be available to Alina’s needs, my immediate concerns were for Kevin and his declining health. I knew that I would have time to devote to Alina at another time in my life, so I spent all of my energy on keeping Kevin positive while he battled ALS. However, my maternal self continuously battled with my decision to put Kevin’s needs first, and I always felt guilty for doing so. 

It was two years after Kevin had passed that the ultimate guilt hit. There were two obvious events which led me to the eventual formation of Hope Loves Company. 

The first occurred when Alina was ten years old and started to talk about her life.  There were so many things that she mentioned- when she lost her teeth, her first trip to Great Adventure, a class trip, which I had no memory of whatsoever.

It was also her honesty that was a wakeup call. I was crying and grieving through my pain of losing Kevin and Alina was angry. She was eleven and told me that I needed to move on and stop crying all the time. While she was angry, I was depressed. I confronted her about her anger.“Why don’t you admit your sadness, stop being so angry with me and just grieve!” At eleven years old, Alina stood, looked at me and said, “And what do you think I am doing?”

Wow.  It was such a strange concept to me that her anger was her grief!  We were grieving in two very different ways and I had failed to recognize that!

It was very clear to me then that children need their own support system in the battle against ALS. 

Add to that knowledge, the incredible story of my new family.  In 2002, I was working as Director of Communications for the ALS Hope Foundation in Philadelphia and was working with the grandchildren of ALS patients.  I ordered a book called, What Did You Learn Today? by Tina Singer Ames.  She wrote the book to explain her disease, ALS, to her young children, Nora and Adam. Mrs. Ames died six months after her diagnosis with ALS.  Her widow, Warren Ames, along with Nora (then 9) and Adam, (then 7) delivered the books to me at my seminar.  We became friends and later, a family united in loss, love and hope.  I love Nora and Adam enough for Tina and me! and have watched painfully how losing a mother at a very young age has affected them.

QFL: How will HLC help a child who has a parent with ALS?

O'Donnell-Ames: Hope Loves Company will provide hope and respite for these children. We have a Kid's Day scheduled in the Spring, where the children and their ALS families can come have fun at no expense to them to forget about ALS for a day.  We are providing educational resources such as books and seminars to help build coping skills and we plan on offering a three day retreat this summer. That's just the beginning!

QFL: What question could family members ask themselves when facing ALS?

O'Donnell-Ames: My slogan for Hope Loves Company is: “Because if you have ALS, so does your family.”

A great question to ask yourself is: Who is my ALS family? Who can help us maintain a quality of life while battling ALS?

It takes a village to battle ALS so find out who wants to help and how he or she is most comfortable helping.

Some people are not comfortable in the presence of sickness. Perhaps those people want to be on the peripheral of care- running errands or making dinners and phone calls.

Others might want to be involved in the daily tasks of patient care. Those people might include the patient’s parents and siblings or close friends. Family or friends who are nurses are also good choices to provide hands-on care.

Be sure to involve your help in ways which are comfortable to them. Otherwise, their committment will be short lived.

There is an excellent book called, Share the Care, written by Cappy Capossela and Sheila Warnock which was designed to create an effective  network of volunteers for terminally-ill patients. The book is a must as a resource and the website is also priceless. http://www.sharethecare.org/  

QFL: What questions should a parent ask to best support their children, spouse and loved ones when someone in the family has ALS?

O'Donnell-Ames: This is such an important question. As a caregiver of anyone, I ask myself:

  • How would I want to be treated in this scenario?
  • How would I want the person for whom I love deeply to be treated?

The answer is always, “With great compassion, love and respect!”

When it comes to the ALS patient, regardless of his or her place in the illness, ask what he or she wants and keep asking that question periodically. Give the patient a voice in his or her care! Allow a patient to maintain self-worth by involving his or her skills and opinions. No one wants to be excluded in decision making or conversation-even if that person has no voice! Use others mean, such as a computer, sign board or even eye blinking to maintain dialogue.

Regarding children, parents are key in providing support and guidance. Your approach will vary greatly depending on the age of your child. If your time is utilized with patient care, ask yourself:

  • Who can I trust to fill my role as parent when I cannot?
  • Will my child feel comfortable with this person and feel free to express emotions?
  • Who else can provide fun and respite for my child when I cannot?

Be sure to consider your child’s emotional and chronological age when addressing these issues.

And never underestimate your child’s need to be supportive and helpful.  If a child expresses interest in helping his parent with ALS, involve him!  This act of compassion is so important to EVERYONE involved.

If a child seems to be struggling, find out if your school system offers emotional support or counseling.

Be vigilant in maintaining open communications with your child and let your love be constant, regardless of physical presence. When I stayed in the hospital for eight days straight with Kevin after he was vented (he had no voice, so I had to read his lips to communicate for him), I left notes, books and little hearts at home for Alina. I also called her to wish her good night and “tucked” her in.

QFL: Independent of your work with Hope Loves Company, what questions do you believe that people should/could ask themselves to make our world a happier and healthier place?

There is a reason for which you are here at this time and this place, in your life.  For guidance, ask yourself:

  • What is my purpose in this world? 
  • Why am I here now with the skills and characteristics only I possess? 
  • How can I use them to benefit others?

Trust me, if you follow your heart and your journey, your purpose will be clear.

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