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A Tale of Two Caregivers: An Interview on Experiences, Sacrifice, Wellness, Clinical Trials, Pharma Support and More

Mar 5, 2021 10:41:36 AM

 

On Thursday, February 13, 2021, PAC members Jennifer McNary and Paul Kidwell sat down with Medable's Content Marketing Manager to discuss their lives and experiences as caregivers. 

As anyone who's dealt with a serious illness among their loved ones knows, the emotions that are experienced can be intense, intimate, and difficult to process. Thus, Medable would like to thank both Jenn and Paul for sharing some early and intimate details about the early hours of their caregiver experience in the preamble below, as well as their thoughts throughout the interview. 

You can find their stories in written form and video below.

Preamble

 

Words to Live by – from Jennifer McNary

When I learned at 21 years old that I was parenting two children with a terminal illness, I fought hard against the tragedy of the diagnosis. I struggled to maintain my own identity and not simply the mother of dying children.


Identities are fluid throughout our lives. We are children of our parents, brothers, sisters, wives, employees. Thus, no one role defines us and I do not want the role of caregiver to define me either. I have definitely at times been simply the “mom” in fact I still have to push back when teachers and doctors don’t bother to learn my name at all - and simply refer to me as “Mom”.

Self-preservation means that I also spend what I would consider a great deal of time on myself.

Whether its riding the Peloton, practicing yoga, reading or even binging on Netflix, I take great pride in caring for me, daily. I fly a lot- so in the words of every great flight attendant, put your own mask on first and then secure the masks of those who need assistance.

Words to live by

 

Difficult Conversations: A Parent Tells a Young Child About A Mother’s Serious Illness - by Paul Kidwell

All who have been diagnosed with a serious illness will tell you that the diagnosis, treatment, and patient journey is universally felt throughout an entire family and not just with the patient.

Part of this experience is the need to distill very complex medical information with each family member, no matter their level of understanding; a role often relegated to the care partner; or in my case the husband and father.

The idea of telling our son – who was 13 at the time - that his Mom had a progressive neurological condition stunk. We knew that he should know and it was up to us – actually up to me – to ensure that what and when I told him was understandable for such a young person. No time is perfect for this type of conversation so about a year after my wife’s diagnosis she and I decided that the timing was right. In particular, with a progressive disease there are too many medical appointments, medicines and necessary family conversations that begin to crop up that you just cannot hide or explain away. Even at a tender age, knowledge is KING and the lack thereof can cause uncertainty and fear. The content and the direction of these conversations is unique to each circumstance, but I have identified a few “rules of the road” to consider.

Think Before You Speak.
Plan this conversation in advance. Timing, location and content are all important. Maybe even talk to a mental health professional before.

Keep it Simple. The Simpler the Better
Tell them about the illness, its affect on the individual and what we are doing to make sure Mom gets better. Tell them to come to you with questions not Dr. Google.

Quality Time
Even though a patient at home takes precedent, a parent still needs to show love and affection towards the children. I have found that scheduled “kid-time” is important. Also, involve them in the care when possible.

All Feelings are Right
This time in a child’s life represents an emotional juggernaut and they will exhibit a myriad of emotions; including, anger, sadness, jealousy, worry, guilt. The usual suspects. All are real and nothing is out of bounds. If you cannot help them navigate these, seek the help of an outside mental health professional who specializes in child issues.

The Interview

 

Question 1: What Has Been Your Experience as a Caregiver?

 

Question 2: What is a zone of wellness, how do you establish one?

 

Question 3: What sacrifices have each of you had to make?

 

Question 4: What has been your experience with Pharma? What level of support is there for caregivers?

 

Question 5: What is your final advice for anyone in Pharma starting trials today?

 

Jennifer McNary

Written by Jennifer McNary

Jenn McNary is a trusted voice in the rare disease community, as a mother, public speaker and fierce advocate. Jenn has unique experience in the drug development field, as a parent of children enrolled in the clinical trials, an advocate engaging with the regulators and as a consultant helping to develop programing for patients. Currently, Jenn is consulting in the biotechnology space with an expertise in caregiver/patient engagement, including bringing the patient voice to drug development and solving barriers to access. Her other activities include serving as the Founder of One Rare, a non-profit formed to meet the needs of young adults with rare and chronic conditions and raising her four children in Massachusetts.

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