ONE TOUGH MOTHER

PERPETUAL CHANGE

Lately, every time I open Facebook, another family in the Duchenne Community is saying goodbye to their child. Parents dealing with chronic illness, not just Duchenne, shouldn’t outlive their children. It’s not how the universe should work. My son Jonathan is 28 and considered an elder in the Duchenne community. As he gets older, I see his life ticking away.

We all experience grief and loss at some point in life. I have said goodbye to my parents and my in-laws. I’ve also realized that everyone deals with grief and loss differently. Grief does become less prominent, but it is always with you. However, I think I’m in a perpetual state of saying goodbye in dealing with Duchenne. It’s not the acute grief; you feel when someone has passed away. It’s a nagging feeling. As the disease progresses, we are saying goodbye to my son’s abilities, Saying goodbye to the activities, muscles, function, and movement, as he loses the ability to do things he once could.

As parents of chronically ill children, we tend to become very good at focusing on medical needs and becoming caregivers. We become adept at making constant adjustments and dealing with continuous change due to chronic illness. As a result of this resilience, our focus on mental health gets pushed to the background. Our mental health becomes front and center when grieving the loss of a loved one, totally overwhelmed with caregiving, or in a complete crisis.

My preparation to attend Parent Project Muscular Dystrophy’s (PPMD) Power of Us Caregivers Summit has brought my mental health to the forefront. I hope to come away from this summit with tools to make me a better caregiver and cope better with my life’s dynamics.

BY CHRISTINE PIACENTINO

I also have had conversations recently about “what’s next,” couples learning to be a couple again after losing their child, and how a sibling reacts to the passing of their sibling. We tend to think that these events would occur well into adulthood and not when someone is in their 20s, 30s, or younger.

As I thought about these conversations and my mental health, I reached out to my good friend and fellow Duchenne Mom, Lauren McVicker Fritz. She is a licensed therapist in Pennsylvania. Lauren provided some professional insights into what I was thinking. I hope our readers will find our conversation helpful.

Tell us about yourself and your background?

I am a therapist in private practice who specializes in significant life changes, including grief and loss, trauma and anxiety, and depression-based challenges. I am a licensed professional counselor and a board-certified art therapist. I’ve been practicing for twenty-seven years. I live in nearby Pennsylvania with my husband and our two teenage boys, who, like Jon, also have Duchenne. Other family members include two cats, a service dog, and a spiny-tailed lizard.

What made you decide to go into therapy?

I always knew that I would be a therapist. I wanted to help others from a pretty young age. I’m a pretty calm and practical person by nature.

What’s the difference between a therapist, a psychiatrist, and a psychologist?

medicine. A therapist is typically someone with a master’s degree, like myself, who focuses on the one-to-one counseling or therapy aspect of treatment with a client. A psychologist can be a master’s or doctorate level and may also focus on psychological testing.

Do you have any advice on looking for a therapist? Are they specialized?

Therapists are specialized. You can often find a synopsis of their specialties through your insurance company or on sites like Psychology Today. Many will provide descriptions of their areas of specialized practice. Some offer the option to have a consult before beginning therapy with them. I encourage people not to be afraid to try out the ‘fit’ of a new relationship with a therapist. It is crucial that you both feel comfortable and that you can imagine working well together. It is perfectly acceptable to try a couple of different therapists if you are not sure if you are satisfied with the first one you meet.

When should someone seek out therapy?

There are no absolutes about when to seek therapy. It has become something much more widely accepted. My personal view is that it is something that everyone could benefit from at times. Most people can ‘make it through’ without therapy, but having a supportive presence to talk to and offer a resourceful perspective may make it easier to get through challenging times. There are more severe or crucial mental health emergencies when a therapist is imperative. Some people may need a higher level of care than outpatient care can provide. A good rule of thumb is that when a person notices that their support system of family and friends does not seem adequate to support their emotional and

“As parents of chronically ill children, we tend to become very good at focusing on medical needs an.becoming caregivers.”

mental health needs, it may be the time to seek therapy as an extra layer of help.

What is the best approach to get help if one is in a crisis and needs to keep things from totally spirally out of control?

Feeling in crisis is one of the main reasons many people seek help. The level of the situation is essential to discern. If someone is suicidal, they need to go to their local emergency room or talk to a suicide hotline if they are not in therapy. If the crisis is uncomfortable but not life-threatening, a search for a therapist is likely appropriate. Many people also have access to EAP benefits through their work, which can be helpful options.

How has social media helped people stay connected in dealing with chronic illness, and how has it hurt?

Social media has been a valuable tool in providing online support networks and relationships for otherwise geographically separated and isolated people. We learned how incredibly powerful this was during the most intense times of the pandemic. Social media can be an excellent source of information-sharing and support. But, social media can also be the source of gossip, misinformation, and bullying, so it does have its downside.

As a family member dealing with a chronic illness, I feel a constant loss and a change in routine. I feel like I’m constantly adjusting to a new normal. Is this normal for people dealing with other chronic illnesses?

Yes, chronic illness inherently involves decline means constant change for the person with the disease, the caregiver, and the whole family. There may be plateau times when things feel calmer, but the sense of upheaval returns when there is a sense of decline.

Families may get more used to this routine but never be comfortable with each new loss. It is something new and unwelcome, requiring further energy and adjustment. The adjustments are both emotionally and physically to the new routine. Once a recent change becomes more familiar, a sense of calm may return for a while as that phase might become a new plateau. It almost becomes a dance of this constant adjustment.

What is the impact of chronic illness on other family members? Each person deals with the diagnosis and each stage of the disease differently. What are some coping tips that may help in this situation?

Living in a family coping with the constant changes brought about by chronic illness brings about both challenges and strengths. When there is constant change and stress, one’s nervous system tries to stay in a place of hypervigilance to the changes that may occur. Family members providing care are susceptible to burnout and exhaustion over long periods. Family members are also dealing with other dynamics, such as how the non-disabled siblings are affected when so much attention is often necessarily focused on a family member with a chronic condition. Guilt, jealousy, deep love and bonding, and resentment. are common responses. Ongoing communication about the reality of the situation and opportunities for people in the family to have time together and as separate relationships is significant. Each individual in the family needs to feel that they can be part of the unit and know who they are as an individual.

How do animals help the families of the chronically ill in therapy sessions?

Animals are wonderful companions. They often fill memorable roles when human companionship may be in short supply. Animals have their specific language and gentle nuance that works differently than humans to bring comfort and presence to human beings. It has been enlightening in our own family. Saki, our service dog, initially intended for our younger son with Duchenne, has made it her purpose to comfort a much larger circle of humans. My clients adore her. Since the pandemic, my therapy practice has mainly been virtual. Our service dog, Saki, will often be drawn to the screen when working with clients, insisting that she greet them and say hello before settling down next to me and letting me proceed with the therapy session.

How helpful is journaling?

Journaling is very effective, and I encourage it for many clients. It provides an excellent means of reflection and self-expression. It can be an enjoyable daily practice and a way of looking back later to see where they have been. Some of my clients prefer to buy journals that have structured prompts that guide them in what to write. Others prefer to write free-form. Some of my clients use their journals to check back to see what they want to focus on with me when they have their sessions.

What are some helpful resources?

If you have health insurance, inquire with your HR department to see if you have an EAP benefit. The EAP benefit team can help find therapists specializing in the kind of therapy you seek.

“Animals have their specific language and gentle nuance that works differently than humans to bring comfort and presence to human beings.”

You can search for Therapists, Teletherapy, Psychiatrists, Treatment Centers, or Support Groups by zip code or city via this link: https://www.psychologytoday.com/us/ therapists/.

The National Suicide Prevention Hotline is: 1-800-273-8255

New York State Crisis Prevention: https://omh.ny.gov/omhweb/bootstrap/ crisis.html Directory: https://my.omh.ny.gov/bi/pd/

Compassion Net https://www.rochesterregional.org/services/ home-health-care/our-services/maternaland-pediatric/compassionnet

CompassionNet is a community-based pediatric and perinatal palliative care program that provides support and care to families caring for a child with a potentially life-threatening illness or families expecting the birth of a child with a serious medical condition.

Journaling App list Day One for Mac and iOS users. Diarium for Windows users. Penzu for secure journaling. Momento for social media power users. Grid Diary for templated journaling. Five Minute Journal for journaling beginners. Dabble Me for journaling over email. Daylio for non-writers