Caregiving changes with time and age, and the need for support grows even stronger

This weekend marks 26 years since my youngest daughter had her first brain surgery. In the past four months, she’s had four emergency brain surgeries, bringing the total to well over a hundred. 

But who’s counting? 

I try not to, but my body reminds me how long and involved this journey has been. 

And yet, heart and soul remind me of the joy we have experienced along this journey of hope. 

When we started, I was a young mom in my early 30s with four children under 9 years old. My husband and I had just celebrated our 10th anniversary. My large, pregnant belly extended like a table between us as we clasped our hands together, renewing our marriage vows in front of our family and friends. To this day, I tell Jo that she was the best anniversary present we’ve ever given to each other. 

At some point in the last 26 years, I started to identify myself as a caregiver. I’m not sure exactly when, but I’m pretty sure it coincided with my daughter’s adolescence — when the gap between her and typical kids’ development began to widen. It was no longer appropriate to think Jo would be a “late bloomer,” especially because the frequency of brain hemorrhages was characterized by a “two steps forward; three steps back”  in her recovery from these frequent strokes. 

Although neuroplasticity — the brain’s ability to recover from trauma — truly does exist, it’s been my experience that continued injuries, like seizures and hemorrhages, at some point begin to take their toll on the brain and impact day-to-day cognitive and motor functions. However, even as recently as this past summer, when Jo had two brain surgeries in two months, we witnessed a return to a baseline we thought she had lost. As Jo’s neurosurgeon remarked, “All the lights are back on.”  

Parents of children with special needs have a herculean task ahead of them — usually with no end in sight. Before diagnosis, we believe the professionals who tell us that our children will probably outgrow whatever the problem is or we will find the support we need for them to be included into the mainstream of education and society. But that is not always the case.

As Jo aged out of the educational system, we receive support through the Office of People With Developmental Disabilities (OPWDD). It’s another complex organization that strives to advocate for the needs and protection of adults and children with developmental (cognitive) disabilities. While I am grateful that our taxes help to pay for the programs that assist us to care for my daughter in our home, it is an uphill and constant battle for us to advocate for the assistance she needs. 

Anyone who thinks families caring for adults with special needs and disabilities are receiving “free money” from the government has never seen the amount of work we put into advocating for our loved ones to be sure they get what they need to live their best lives with the dignity and respect they deserve.

Most parents would agree that they will always be a parent to their children whatever their age.  Parents raising adults with disabilities live amidst the juxtaposition of caring for loved ones with childlike behaviors and abilities with the need to encourage independence.

Parents are always parents and our children will always be our children. But when children have to assume parental roles for their aging and infirm parents and/or our children require care into adulthood, these roles go beyond typical family relationships into the vocation of caregiving.

This week, I attended our local caregivers’ conference sponsored by PBMC Caregiver Center. It was a beautiful day to connect with other caregivers and be inspired by the stories that were shared. It reminded me of my value and purpose as a caregiver.

The keynote speaker gave an inspiring talk that affirmed the role and importance of caregiving. Most caregivers don’t identify as caregivers, either because they think the care they provide is simply an extension of their family relationship or because there is a stigma attached to a negative perception of what it means to be a caregiver. 

For me, I have found beauty and purpose in caring for my daughter and in advocating for her needs and the needs of other people with disabilities.

I discovered gifts and aptitudes in myself to understand the way the human body and the brain works, by advocating for my daughter’s care. I came to realize my potential in written and spoken communication as an advocate for her needs and the needs of other people with disabilities. 

Twenty-six years later, I am still learning profound life lessons through this vocation of caregiving that greatly enhance my life and the the lives of others whom I am blessed to serve,  

In my daily prayer and journaling, a recurrent theme and inspiration to “let go” of things that cling to me — anxieties, concerns, perceptions and even clutter in our personal space — to make room for more joy and peace and beauty in this life.

One simple thing that has been weighing on my mind was Jo’s medical file that I keep on my computer and print out for my husband, our aides and emergency personnel. It’s a history and a current list of all Jo’s medications and special needs. 

I can pretty much recite these things in my sleep (and sometimes do.) But it was nagging at my brain that the list hanging in the kitchen cabinet needed to be updated. If anything happened to me, even my husband wouldn’t know all he needed to adequately care for my daughter. 

The day after the caregivers’ retreat, these needs and concerns literally came crashing down in front of me as I lost my balance and fell on my hand while doing chores on Jo’s Farm. I put my right hand out to break my fall and when I heard the bone crack, I knew it was broken. I fractured my wrist.  

As I walked back to the house, my thoughts were not of the pain I was in but of what were the next steps I needed to do to secure support for my daughter in my absence. The first thing I did after sitting down to put ice on the injury was open up my computer and make the changes to Jo’s medical history and medication list. It took only minutes to complete a task — even with one hand — that had been weighing on my mind for months.

I also asked Jo’s aide to get her dressed for bed and went over the nighttime meds and routines with my husband before I left to get my wrist examined at an urgent care facility. Thankfully over the past few weeks, my husband has taken over the physical task of settling my daughter into bed. 

Wound recovery and neurological issues have made it harder for my daughter to get in and out of bed and chairs. Even though she’s a small person, it’s difficult to shift her weight. I had to let go and ask for my husband to take over. I am especially glad that I did that now since I only have the use of my left hand and arm.

The next morning I woke with a sense of joy. 

Despite her needs, my daughter and I still have a sense of the peer relationship that I have with my other young adult children. We joke and banter in similar ways that I do with my other kids. Jo has a wonderful sense of humor.

So when Jo woke up, I greeted her with my bandaged wrist and arm as we both laughed out loud.

Jo and I talked through each step of our morning routines. My injury allowed us to rethink what she could do and we worked together beautifully. Our morning routines were slower and more planned out, but we did these little tasks together, with laughter and great love. 

Caregiving is more than a role we assume to take care of our family members; it’s a calling to embrace compassion and grow in discovering a future full of hope.

If you are a caregiver, you are not alone. 

It’s an exciting time to be a caregiver with more recognition and resources being developed on the local, state and federal levels. Visit https://www.caregiving.org/  for updates and information. Locally we have excellent support at Peconic Bay Medical Center. 

For more information, visit https://www.pbmchealth.org/caregivers-center.

Especially during this month dedicated to family caregivers, find support to make it easier to care.