A long, difficult caregiving journey with great rewards

by Janet Rico, Ph.D., M.S.N., M.B.A.

Our daughter was born more than 30 years ago with microcephaly (a smaller than expected head) and global developmental delays. We quickly learned that Lauren would never walk or talk, and we had to adjust our expectations for the future. Her developmental age would never advance beyond four months.

Unexpected joys of caregiving

Lauren became more compromised as she grew older, developing worsening seizures, respiratory issues and a myriad of other medical issues. Yet, despite many hospitalizations, often in intensive care, she has rallied. Lauren continues to offer us her joyous presence and unwavering love with simple head touches, deep and loving eye contact and enormous smiles.

My husband and I are so grateful to have her in our lives and have reaped so many rewards from being her parents. She has brought incredibly special people into our lives and has strengthened our resilience, patience, faith and appreciation for every single day. My compassion for others has deepened, as has my understanding of living through adversity.

Is it selfish to need time to yourself?

The many rewards I’ve described didn’t—and don’t—prevent the situation from taking a toll on me. At times, I am exhausted and question how I’ll be able to continue in this role. It is difficult to acknowledge those feelings, and I feel guilty and selfish when I admit that I have them.

I want to share what I’ve learned in the hope that others providing care for long periods of time will know they are not alone. Feeling isolated and stressed is quite common, and so is guilt for thinking of yourself. It can make you feel depressed and hopeless.

My salvation from this cascade into the abyss has been to try my hardest to put myself first. Now that is not something a caregiver can admit to without feeling that others will question their level of commitment, right? It’s selfish to need or want time to yourself, right?

If you’re providing long-term care, you know what I mean. It seems like self-care should never be the first thing we consider—there are so many of your loved one’s needs to attend to. Then there are work and other family responsibilities to consider.

But frankly, it is exactly what we need to do. The saying is true: we cannot care for others without caring for ourselves first.

Asking for help

I believe that we need to acknowledge that long-term caregiving is extremely hard and takes a significant physical, social and emotional toll on caregivers. That was difficult for me. So was acknowledging that I needed help. Making those connections for help was not easy—it’s not my nature to reach out to others for support. I didn’t want to go to a group for support, but I did reach out to others individually who were on a similar journey. I no longer felt alone and was able to gain strength from others who understood what I was going through.

Early on, I reached out to Lauren’s pediatrician, early intervention and state agencies for assistance. Later, I asked to be connected to other parents who were a bit farther along than us for advice. I became very active in The Arc of Massachusetts to garner support for caregivers and those being cared for. It gave me a sense of hope that I could help make things better for those living with similar disabilities.

My feelings of isolation and hopelessness began to abate, as I increasingly felt I could make things better. As Lauren turned 22 and aged out of the special education services we depended on throughout her youth, I had to advocate for her needs and had to, once again, acknowledge that I needed help to transition her to adult services.

Take care of yourself first

I’m no longer hesitant to say when I’m exhausted and to admit that my husband and I aren’t super humans who can provide care 24/7 for 27 years without difficulty! But it’s still not easy to take care of myself first.

I recently told my primary care physician that my biggest concern about my health is that I neglect it to take care of my daughter. I should have been investing in my own care right along, but I had not. Years of lifting and positioning Lauren had taken a physical toll, and as I entered middle age, I was forced to find the time to take care of myself. I was the only one who could strengthen my back and my overall physical self. I was the only one who could feed my body with a well-balanced diet. I was the only one who could care for my emotional and spiritual self.

Recognize the good things

About six years ago, I had an epiphany about self-care, which led me to enroll in a mind-body mindfulness course offered through the UMass Memorial Health Center for Mindfulness (formerly with UMass Chan Medical School). Through the program, I recognized that I had never taken time to just be with me—and that, through the years, Lauren had tried, in her own way, to help me learn how to appreciate each moment. I just was too frazzled to take it in. Despite needing a wheelchair and being legally blind, she appreciates every moment, laughing loudly as she hears a brook flowing along our path or the trees’ branches blowing when we go for our walks. She relishes these moments, taking full advantage of her super-sonic hearing!

Now I understand.

I am hoping you can find some time to take care of you as you provide ongoing care to your loved one. It is vital that we take care of ourselves and acknowledge the burden along with the rewards. It will help you appreciate every moment.

Guest blogger Janet Sweeney Rico, Ph.D., M.S.N., M.B.A., is a nurse practitioner in the Division of Palliative and Geriatric Medicine at Mass General Brigham and president of The Arc of Massachusetts Board of Directors. As a nurse practitioner with specialties in family and in geriatrics, Dr. Rico advocates for increased support and access to health care for people with disabilities and for the elderly. She has been a member of Fallon Health's Board of Directors since October 2017.