What I Wish I’d Known About Caregiving: 7 Tips To Navigate Mental Health Challenges in Your Family

I am the parent of an adult child with serious mental health challenges. Over the last decade, since the onset of symptoms and multiple failed attempts at an accurate “diagnosis,” our family has learned a lot about teamwork, self-care, support and acceptance — none of which we knew at the outset of our journey.

This is what I’ve learned about family involvement in a loved one’s healing and recovery.

1. Know Your Involvement Can Improve Outcomes

As a family member, you can be a reliable source to provide accurate family and clinical history to your loved one’s clinical team. Your hands-on experience is key to offering timely relevant clinical updates — you know your child, parent or sibling better than anyone else. In addition, you can play a vital role as an advocate within the applicable health and legal systems. Your loved one will benefit if you are able to “quarterback” the team, selecting and coordinating the labyrinth of available resources.

2. Prepare for a Marathon, Not a Sprint

I was reminded early on by one of our clinicians to “prepare for a marathon; not a sprint.”Whenever things got tough, I would repeat the mantra “take the long view.” This has been invaluable because mental health recovery is not linear; it’s a roller coaster ride. But it has gotten easier with time. Learning to manage your energy levels around this emotionally and physically draining work requires a lot of self-care, especially given the fact that you are not in control of the timing of symptoms.

I leaned into rituals and practices for my own well-being and aimed to nourish myself and replenish my own needs. I focused on gratitude, especially when things were going well. I have found it helpful to celebrate every victory along the way, skipping over nothing, no matter how small.

Finally, it’s important to manage your financial resources accordingly by preserving as much capital as possible with each choice, as your expenses will likely be lifelong.

3. Build a Village of Support

At the outset, it’s important to begin building an “A” team of outpatient professionals who will be your “village.” These are people who will support you as well as your family member. You will benefit from multiple layers of support in more ways than you can imagine.

As you build your team, note that not all care is equal. There is tremendous variability among quality and types of care depending on your personal resources, access to providers and the state and community where you live. Beware of internet marketing for treatment programs that claim they will solve all your problems. It’s not that simple. To pay for all this, you will need to become an expert at navigating the complex and frustrating maze of health insurance.

Here’s a list of providers you will want to know about:

• Psychiatrist (traditional and/or holistic, and possibly with specialty license in addiction medicine)
• Therapist/s, including family therapy, individual therapy, couple’s therapy(this may be the same person if their skill level is appropriate)
• Psychiatric social worker to assist with resourcing
• Disability benefits advocate
• Attorneys (estate and potentially guardianship)
• Personal coach/life coach for child
• Assertive Community Treatment (ACT) team, which consists of a community-based group of medical, behavioral health and rehabilitation professionals who use a team approach to meet the needs of an individual with severe and persistent mental health challenges. These are usually government funded with the intention of keeping clients out of hospitals. Their quality varies by local community and by organizational leadership.  
• Educational consultant to assist with placement in residential treatment programs
  • Be sure to interview them to determine how much experience they have in the mental health arena and to determine necessity for residential vs. outpatient treatment.
  • Good consultants can be invaluable as they visit the programs, usually annually, to determine who is doing what they say they are going to do. In some cases, their credentials are enough to help you get into a program or even to select the best therapist.

4. Practice Radical Acceptance

One of the most emotionally challenging, yet important, pieces is learning to reframe your expectations of what your child may have been to who your child is. You may witness your child going from a near-death experience to showing their unique and special purpose on the planet, and sometimes more than once.

You may experience stages of grief as you navigate your loved one’s mental health journey, as you will likely experience what is known as an “ambiguous loss.” This occurs when the person is still alive in physical form, but not the person they used to be (this is also common with conditions like Alzheimer’s and dementia, among others).

When you can meet them where they are, not where you had hoped they would be, it helps with both connection and hopefulness. I’ve learned that my own acceptance of “what is” is one of the most important parts of my happiness and of my relationship with my loved one. When I am in the present moment, focusing on where they are right now, not where I had perhaps hoped they would be, I am grateful.Enjoying my connection with them and appreciating their gifts and insights brings me hope.

5. Surround Yourself with Supportive and Empathetic Friends

Your life experiences may be radically different from those of most of your friends. As such, you may notice that friendships change; some old ones will go, and new ones will enter. It’s helpful appreciate how difficult it may be for your old friends to understand how different your experience is from theirs.

My own experience is that some people become so uncomfortable that they stop asking about your family member, so as not to “upset you,” not understanding that it’s actually they who are upset, and you who would appreciate the listening ear!

It's important to set healthy boundaries to preserve your capacity around friends. Become masterful at saying “no.” Avoid over-committing, even if it felt good at one point in your life, as things are different now. Finally, I recommend reducing social media exposure as it can feel triggering to see what others are posting when you and your loved ones are struggling.

6. Remain person-centric

Your loved one needs to learn through trial and error how to manage their own mental health as this is the only thing that will be sustainable in the long run. To assist, it’s important for you to use recovery-oriented language, such as “mental or behavioral health” challenge vs. “mental illness.” Practice reframing your thinking from the model of “illness” to “different or non-neurotypical thinking,” so as to remove judgement, help decrease stigma and to expand possibilities for you and for them.

7. Be Open to Exploring Outside the Standard Medical Model

My own bias was that the model of “medication first” was the only approach to stabilize severe symptoms. And medication is important. However, in the longer term, people with mental health challenges will benefit immensely from a comprehensive system of well-being, including: trusting relationships with family and a close circle of friends; an experienced therapist and psychiatrist; proper nutrition for their physical constitution; regular exercise; and meditation, breathing exercises and other calming, restorative practices.

Finally, I invite you to trust the process of life — the right people and possibilities will show up when needed. What is possible may be different and greater than anything you imagined.

 

Susan S. Freeman, MBA, PCC, NCC is an ICF and EMCC accredited Executive and Team Coach, leadership development consultant, speaker and author of "Step Up Now: 21 Powerful Principles for People Who Influence Others." Her passion is working with senior entrepreneurial leaders and teams by helping them lay the critical foundations required for scale. She writes on humanistic leadership based on her unique system blending Western strategy and Eastern wisdom. Her new book, “Inner Switch: How Ancient Wisdom can Transform Modern Leaders” will be released by Entrepreneur Press in May, 2023. Visit her at www.susansfreeman.com.