caregiving support

"You're my mom, now" she said, looking up at me with joyous, blue eyes, smiling softly. 

I was tucking her into bed, a nightly blessing of grace during our caregiving time.  I stopped for a moment, as did she, and together we remembered.  Years before, we'd heard those same words.  My  Grandma Dennehy, my mom's mom, said "You're my mom, now" to my mom too, also in the sunset of her life, while being cared for.  It was, then and now, a passing of the torch, from mother to daughter, a relay of timeless wisdom, accepting "being cared-for" rather than "care-giving." 

But I couldn't take the torch: it was too hard.  How could I be my mom's mom?  I wasn't ready.  And I didn't want to be.  So instead, I held her gnarled hand, looked into those marvelous, light-filled eyes, and said, "Nope, you'll always be my mom.  I'm just happy to be your nurse."   

Caregiving is the best, hardest job you will ever do, especially when love is strong and the relationship well.  I have never, ever regretted the time mom lived with us, or any part of her caregiving. It was a joy, never a burden, even when it was hard and I was exhausted. I am so grateful for my mom, for a lifetime of her love, friendship, delight, and curiosity.  I couldn't have been luckier in the mom lottery. Now that she's gone, even a decade later, I still miss her, every day.  Ten or twelve years after my grandma died, I remember asking my mom if she missed her mom.  Her response? "I miss her every day."  Me too.

What happens when caregiving is tough and the relationship, or the person, is broken? Well, I've experienced that, too, and it's a whole lot harder.  Let's just say, my dad was not my mom.  Our family provided in home care for him too, and, as the kids said, "It was hecka hard."  In most ways, it was the opposite game. With him, it was a tough, rough go, every single day.  Sometimes I lost my patience and always I wondered how to keep going.  I was bugged and irritable: even little things "scratched on my psychic blackboard." Big things tore at it.  Even then, Dad was not a burden.  Situations are burdensome, people are not, even people who challenge us profoundly, even people who are sometimes not nice.

But for my sweet long-suffering husband, our four wonderful kids, and six siblings helping out, I wouldn't have made it.  And I needed help for far longer than I allowed it.  

Every person who experiences a serious illness or injury needs help. And everyone who provides care for a loved one needs help too: Everyone. The biggest mistake anyone makes is to tough it out, wait too long to get help, and end up with a crisis.  I've been there and done that, and I don't recommend it.  

In over 30 years of hospice nursing, I've seen this happen much more often than not. And it doesn’t need to. Broken hips, hurt backs, and unnecessary hospitalizations lead to decreased choices and unfortunate outcomes for people who are ill and for their caregivers. Be proactive. Assess your needs realistically, BEFORE the Crisis. Take preventative action. Get the help you need: You’ll be glad you did. 

I tried to be wonderwoman, working outside the home, caring for kids and parents in home, coordinating parent care and medical care, and so much more.  For over ten years, we cared for between one and three seriously ill or dying loved ones in home, and several seriously and critically ill other family members not in the home.  I started out with a fair share of energy, but progressively, over time, became more and more (and MORE!) tired.  Thanks be to God, my husband, children, and siblings were right there with me, pitching in, working as a team to provide and coordinate care.  Without them, I would have become horizontal much sooner than I did.  

Still, the weight of being in charge and of providing much of the hands-on care and coordination for so long took it's toll.  At one point, I developed chest pain, which, as a nurse, I knew to be a broken heart vs a cardiac condition. I did what I should have though: reported it to my attending MD and to a cardiologist.  Even though the pain-in-my-heart was acute grief and sorrow from having a child with a traumatic brain injury, I needed to get medical and practical help.  (It turned out not to be a cardiac condition after all--and I sure knew how run down I was.  Even being in the hospital for a few days felt like a vacation!)  And, thankfully, our son is fully recovered now, working as a mechanical engineer.

So, don't be me.  Get help before you end up in a hospital with chest pain, hooked up to beeping monitors and ringing a bell to go to the restroom.  Stop. Take a breath. Hop off the busy caregiving tread mill.  Look up and out.  Discern what is obvious, if only you slow down. You. Can't. Do This. Alone.  You just can't.  

Phew.  Once you realize you need help, it get's easier.  The next step, also excruciatingly difficult, is asking for help or saying yes of proffered help.  Both are tough, but necessary.  

The key is to sleuth what kind of help you need, and craft a “care quilt” of friends, neighbors, church, community, organizational, or agency assist. You'll likely need to pay for some of the help.  Sadly, neither Medicare nor most insurances pay for hourly caregiving help and respite. Talk to a social worker or social services: Chore Services, Meals on Wheals, or even becoming a paid caregiver for your loved one is possible. Medicaid nursing homes can have less than great care, but can be the only option in some circumstances. If so, be an adjunct to that care. And, as always, advocate fiercely.  

No matter whether your loved one is at home, in assisted living, or in a care facility, patch together care at the times you need it. A friend coming to the house for an hour for you to get to the grocery store is super-important, as is someone to help with house-cleaning, laundry, or food prep or cooking. Sometimes, getting a good night's sleep is the highest priority.  That might mean asking for, or paying for, someone to stay at night, at least on occasion.  

In my case, having 6 siblings and four children helped immensely. Each of them signed up for bringing lunch to our parents. Several pitched in to take Mom and Dad to doctors appointments and social events.  (Mom and Dad had quite a few aging friends and needed to attend a plethora of funerals to celebrate the lives of their friends.) When I went to work as a hospice nurse (not generally thought to be an easy job), I felt like it was a break.  The good news?  The patchwork of care helped, right up to the last moments of life, when mom died, surrounded by Jef and the kids, my sister and me.  She breathed her last on December 21st, "going to the light" on the shortest day of the year, while listening to the Irish Tenors singing Christmas hymns.  

Dad spent his last months in assisted living, receiving great care from staff and family.  I was there many days for at least a while, coordinating care, providing meds, or simply sitting with him. For him, for me, and for our family, that's what needed to happen.  It worked out, and even though my caregiving continued, being able to sleep at night and have a life outside of caregiving was necessary.  He, too, died peacefully and comfortably, "gone fishing" as the note we put on his door said.   

There is no one way or right way to provide care to a loved one.  Discerning the kind or amount of care needed depends on the person, their needs, distance, mutual finances, work and family responsibilities, and more. You can try one plan and graduate to another. If one care plan doesn't work, switch it up.  Each of us can only do our best.  And that is good enough.  It has to be.  

Discerning how to provide care, what care to provide, and the schedule for such care can feel overwhelming: it’s true. And most people immersed in caregiving don't have the time or energy to find alternate help, fill out a mountain of paperwork, or hammer out a detailed plan of who will do what, when. Even sleep is hard to come by, and showers hit or miss. And most people don't have a bevy of siblings, at the ready.

But, unless you prioritize the time you need to get caregiving assistance (or ask someone to do this for you), rough days and exhaustion are sure to occur. Injuries or incapacity will follow, and the loved one you're caring will be worse off.  

The problem with being chronically fatigued and operating at the top of your function for so long, is that the "one more thing" factor can make you immobilized.  You feel you can't add one more thing. Checking out caregiving organizations or setting up a care-quilt, can feel like it's the straw that'll break your camel's back.  You're between a rock and a hard spot.  

Ask a family member or friend to do this research for you: it can take much longer for an exhausted brain to put together a list of resources than it would for someone not doing 24/7 care and experiencing anticipatory grief.  

Make time to take time. Walk, garden, see a friend.  Do something beyond caregiving.  Choose "want to's" instead of "should-do's" for your off time.  Jef, the kids, and I went to the Oregon Coast, while a sibling cared for Mom and Dad.  We can back rejuvenated, and it lasted....not too long.  Still, it helped replenish the energy reservoir, which had been parched.  

Make at least a bit of time, every day, when you can breathe, when you aren't going from task to task, giving care.  It really is a marathon, and to go the distance, you need to be a steward of you.  

As I used to remind caregivers during my hospice years, "Does the bible say something about, "Love your neighbor?"  What comes next, a period?  Or something else?  Perhaps we forget to implement an essential  part of the greatest commandment.  "Love your neighbor AS yourself."  

Have at it.  

Check out Helpful Resources for Caregivers