Friday, November 3, 2017

What a Caregiver Really Needs

Copyright: vilhelmbcn / 123RF Stock Photo
She reaches out to the poor
    and extends mercy to those in need.
Proverbs 31:20, VOICE

Given an assignment a person would rarely, if ever, have chosen on their own — A child has autism, Down syndrome, cerebral palsy, hemophilia, or some other complex diagnosis — A parent suddenly becomes a caregiver. And this is the month to recognize it. 

November 1994 marked the birth of "National Family Caregivers Month." Every president since 1997 has issued a proclamation designating this month as such. In some ways, the timing of this special month seems so appropriate to me as the extra duties of parenting a less-than-typical kid bump up against the demands of holidays. In other ways,  it seems so minimal in practical usefulness. While acknowledgement is really nice, parents caring for kids with disabilities, chronic illnesses, and rare disorders need so much more than platitudes for 30 days.

When I became a first time parent over 20 years ago, the rigor of raising a beloved daughter could be challenging. But when I became a caregiver to a child with a weighty lifetime diagnosis less than 3 years later, the impact was non-stop. My basic needs, dreams, and well-being all suffered right along with my son's. There was no part of my life untouched by it. One of the most difficult parts was that people's concern and compassion were all largely focused on this beautiful boy's challenges, while it felt as if I was slowly fractured and shriveling away without a second glance from anyone. If people even cared enough to notice us at all, their questions were all directed at how he was doing and not how my husband or I were managing. Small acts of kindness were centered around him. And while that was wonderful, it was mostly forgotten that the ones caring for him had gaping, painful craters in their lives caused by our son's diagnosis.

Defend weak people and orphans.
Protect the rights of the oppressed and the poor.
~ Psalm 82:3, GW ~

How fitting then that the 2017 theme for National Family Caregivers Month is "Caregiving Around the Clock." Finally, someone is giving voice to the relentless requirements that come with caring for a much beloved family member. 

This theme helps me to peel back the curtain on so much of what gets ignored in the every day life of a parent like me. And while I can't list every need and how it can be met here, perhaps it will foster a bit of empathy and get you thinking of creative ways to make a difference in the life of a caregiver. Here are just a few things that a caregiver really needs:

  1. Someone to listen — It doesn't take very long for the average person to develop "compassion fatigue" after a child is diagnosed. This causes people to tune out a mom like me when what I really need is to talk. Great healing takes place when I tell our stories over and over again. I feel validated when someone listens to my challenges and concerns. People don't need to solve our problems. Often those issues can be solved merely by discussing them out loud with someone. And parents like me are too often dismissed by educators, medical personnel, and insurance companies. We just need someone to hear us. At the same time, it is so easy to lose our own identity in care-giving. It would be nice if people asked us about our own interests, feelings, or opinions and really listened with interest.
  2. Mercy — People expect parents like me to return to "normal" quickly after an initial diagnosis or periodic crisis. The fact is life will never be the same kind of normal for us again. Since my son was born I am almost never on time for anything. I used to be a person who was always 15 minutes early for everything. The fact is that I always have too much to do and too little time to do it, so my life is perpetually running behind. I frequently have to cancel on people or reschedule. It's just the nature of our life now. We've also had people give up on us because they want to do things that we have no money for. With the subsequent diagnoses both of our daughters have received, we literally have nothing left after all of the medical bills. Furthermore, if we did have any money, child care for kids like ours is next to impossible to find. That leaves us continually shut out. It would be such a treat if people brought the party to us instead of being disgusted with us for not making it to the party.
  3. Sleep — I haven't had a good night's sleep in nearly 2 decades. Never mind getting up early to get to school and doctor's appointments. It's the staying up through the wee hours of the next morning because of a dysregulated child night after night that wears a parent down. Those medical crises and runs to the emergency room in the middle of the night aren't exactly helpful to recuperative rest either. It is nothing short of stunning that parents like me can make cohesive, informed, critical decisions given that our cognition is so fractured from lack of sleep. We need someone that will put us to bed, make sure our children don't burn the house down, and allow us to at least take a nap from time to time.
  4. Random acts of kindness — It gets hard to continually ask for help. Parents like us are constantly filling out paperwork for aid and calling to request special arrangements. What a blessing it would be if someone could put themselves in our shoes and anticipate any small thing that might comfort our hearts. Chances are, if you are taking something for granted, it is something that would likely really bless a care-giving parent. Vacuuming or doing a load of laundry for a parent caregiver would be huge. Mani-pedi? What is THAT? I'm lucky if I can find an emery board to file my jagged nails. A car wash? Doesn't the rain take care of that? Besides, we have too many doctors waiting for us to pay their bills for us to afford a car wash. Seriously, everything from help mowing the lawn to a gift card to put a few gallons in the gas tank can help a parent like me take a deep breath for just a moment. I recall one of our gatherings years ago where a mom we serve expressed that she was out of shampoo, but she just swished water around in the bottle one more day because it would mean so much back-breaking work getting her severely disabled daughter lifted into the van to just pick up a bottle of shampoo. It broke my heart. 
  5. Someone in it for the long haul — Families like mine often make people uncomfortable. We are living what others fear. And it is made so much worse because we become marginalized by and isolated from others. Those who we used to hang out with fade away as our lives become more complicated. We develop friends within our own community of fellow caregivers, but even those people come and go. People stop asking how our child is doing and expect an improvement that will never come. Oh, how encouraging it would be to have someone hold our hand over the long journey and walk this trail with us! Maybe people expect that to be our extended family, but more often than not, our families aren't there for us over time either. We deeply crave that validation that says, "You are worth it. I love you enough to stay," when everyone else is walking away.
It is often an exhausting responsibility being a caregiver. Yet, when people make the statement, "I don't know how you do it!" we respond by saying, "You would do it if it were your child too." Our commitment is born out of deep love. But given the relentless demands of that commitment, we sure could use a little love, mercy, and TLC ourselves.

Pray with me...

El Roi, You are "The God Who Sees Me." Thank You for seeing every caregiver in their weariness. Open the eyes of those around us to see that we have needs as well as our children. Send Your mercy and compassion through others to help us persevere. Bless every caregiver of every kind in a special way in this particular month. Build awareness and make the world more reflective of how You see those caring for others with additional needs.

For futher information on National Family Caregivers Month visit the Caregiver Action Network.
Click HERE for the 2017 Presidential Proclamation on National Family Caregivers Month.


  1. Barb, thank you for accurately articulating what my caregiver heart wanted to say. Hugs and blessings my friend.

    1. You are so welcome, my precious friend and fellow warrior mama.

  2. Wow, Barb...this is truly astounding. I hear people say, "They will ask when they need help...". No they won't. They're too busy DOING to even consider ASKING. But when Evie had cancer and it would snow and I'd dread Jeff having to go out to shovel...I'd look outside and someone would have already shoveled our driveway and sidewalk. I still don't know who...12 years later. THAT is how you help. You think to yourself, "What would I DREAD doing if my kid were sick?" "What would I NEED if I were in that person's shoes?" And then you do it!

    1. Thanks for those GREAT insights, Tammie! It's true... Asking for help is usually just more work on top of all the heavy lifting we're already doing as caregivers.