Is Caregiving a Burden?

Is Caregiving a Burden?

When people who need care say, “I don’t want to be a burden,” they mean it, and most caregivers respond, “You’re not a burden.” But what they don’t say is that caregiving is a burden. It’s a heavy burden, physically, mentally, and emotionally, especially when you are carrying the bulk of it for years and decades.

Caregiving is an enormous responsibility that comes with a long and hard to-do list on top of the to-do list of daily living. It’s not a burden because anyone did anything wrong or because of the person in your care. It’s a burden because caregiving duties pile up on top of pre-existing life stressors like work, paying bills, and fragile family relations. (If they weren’t fragile before, they might be now). Caregiving takes time when you are already stretched for time. After all, there are only twenty-four hours in a day, and some of them should be spent sleeping.

Fifteen years ago, after my husband’s brain injury, there were four people living in our household: two adults and two children. One adult had a severe traumatic brain injury and could not drive a car (or read the word car, or draw a car). The other two family members were young teenagers. So I was the caregiver and family driver. This was all well and good until the car broke down.

The day I had planned broke apart. I had planned to drive Hugh to rehab, run to the bank, buy groceries, stop by the pharmacy, return to rehab, get home in time for the kids to return from school, cook dinner and drive the kids to dance class. But this was not going to happen the way I had planned.

Insecurity set in. Did I remember to renew my AAA membership or is that another $100 down the drain for a tow? Who were the last three friends I called to help me? Rotating SOS calls can save friendships.

I kicked the car’s tire for its bad timing. This is not something I would have done in my former life as a mom, wife, and professional woman, but it’s as if an ill-tempered avatar had taken over my body, and I didn’t know what I’d be capable of if one more thing went wrong.

I remember what my mother used to say about the Kennedy family: “How can one family survive so much bad luck? It’s like a hex over them, a dark cloud….” And standing in my driveway, I realized that bad luck seems to attract more bad luck.

We get thrown down when trauma strikes, and we are paralyzed for a time. Then, when we get back up, things that needed to be done while we were paralyzed didn’t get done, so there’s a backlog, and there are a million new things to be done like look in the mailbox and listen to the dozens of phone messages clogging your phone. It turns out that one of those messages is from the phone company threatening to cut off your service because you missed paying a bill. While you scramble to iron that out, you’re put on hold once again, neglecting something else, and so forth and so on.

So, yes, caregiving is a burden. It’s a burden to both the caregiver and the caregivee.

It was a burden for me because I was pulled in so many directions at once while trying to keep my cool and function like a normal human being. And it was a burden for my husband who sometimes felt that all of the stress and every problem had been caused by him, even though he did nothing wrong—and to top it off, he was living with a neurotic, hyper-vigilant stranger he used to call his wife.

The truth is, all family members are both a source of joy and a burden at one time or another. That’s what family life is: the art of weaving webs of joy between strands of pain is what creates the intricate fabric of family love.

It’s not the people in our care who burden us; it’s our anger over circumstances; it’s our inability to detach from expectations; it’s our resistance to accepting the things we cannot change; it’s the feeling that we are being swirled down a drain and can’t stop the momentum; it’s watching our loved one suffer; it’s feeling guilty for wanting to escape the reality of our life; it’s the gaping hole of loss, the inability to find the words to speak about what hurts, and our own sense of how unfair all of this is that burdens us.

Yes, caregiving is a burden, but you dear, are not.

P.S.
Six months later, you move the couch away from the end table to vacuum and find the phone bill that went missing. It had slid down off the table, and you smile an evil smile as you ram it into the shredder.

Comments (17)

"It’s not the people in our care who burden us; it’s our anger over circumstances; it’s our inability to detach from expectations; it’s our resistance to accepting the things we cannot change; it’s the feeling that we are being swirled down a drain and can’t stop the momentum; it’s watching our loved one suffer; it’s feeling guilty for wanting to escape the reality of our life; it’s the gaping hole of loss, the inability to find the words to speak about what hurts, and our own sense of how unfair all of this is that burdens us." -

Very wise words from a wise woman. Thanks for being a voice that helps those of us who are not as far in our journey figure out some of the messy stuff. I so appreciate you.

My apologizes if I am posting inappropriately on this blog. I fell onto it by happenstance. After reading the posts, I was compelled to comment.

Each of you speak of lives and the challenges you face providing care to your
loved ones, who suffered tbi's. You see I can only imagine how you are
affected because I am on the other side being a tbi survivor. Speaking from
that perspective I can say how blessed your loved ones are.

After I suffered my tbi, friends came for a time, but then, I was left on my own with no support. Family involvement just did not happen. My journey has been years. Like most with tbi's, the path has been and continues to be one I take a day at a time.

As you end each day, I would hope you appreciate the gift you have blessed your loved one with. Let a smile warm your heart and know your child...your
spouse...your loved one may not speak the words, but without your care and
support their limitations and impairments could be worse...their journeys so much more challenging and their tears more frequent.

Thank you for reading.

I am so sorry you are going through this alone. My husband (4+ years post-tbi) is so appreciative for me being in his life. He cannot imagine how difficult his life would be if he had to handle this on his own. We have grown even closer over these years but saying that, we had a pretty awesome relationship prior to his TBI. We both work hard to protect each other, which is imperative. I wish you ongoing strength as you make it through each day. You are a warrior!

Thank you Pat...that really does help!!

Be well!!

P :)

You are so right, and your words are well received.
You sound like a strong and caring individual and I wish you
peace and continued healing.

Rosemary - Always 100% on point - obvious that you have been there and done that and the fact that 15 years later you are still in the fight gives those of us just 2 years in the hope and courage to trudge on!! Thank you for that.

Thank you!

Rosemary, your articles are always so timely and always make me feel better...this one may actually have saved me from packing it in...forver grateful!!

P :)

That's nice to hear. Thank you for reading and commenting! Hugs to you.

I don’t like to use the word burden especially to my loved one with tbi. He is my son. He was a loving son before tbi My days are filled with responsibilities primarily explaining to people what a tbi is. It has been 5 years and I’m growing weary. My tbi does not want to accept his injury He is in denial and I’m to blame for everything. If only I had a family to stand by me and my son. If only the Drs cared. If only the state would assist me instead of depleting me of all my retirement money. So a burden ? No not a burden a challenge and I only have God nobody cares in the physical. I am the mother father care giver advocate that nobody likes. At the end of the day I lay down and ask God to help me rest to face another day. Hoping and praying that I may get a glimpse of the son I had preinjury who loved and respected me .

It's all so much harder when the TBI takes over all too frequently.
I just feel horrible but grateful I still have my family member, it's constant mixed emotion a thumping headache mixed with heartache & resentment because the whole situation has even happened.
The "nasty" words, the blaming etc some days are just heart breaking, I try to brush it off as its the TBI talking but it's e, trembly hard to imagine a parent could have such harbored harsh feelings.
I wish I could understand it.

I hope you see the changes you wish for, too.

Thank you!

Thank you!

Good points all around. Of course, it's really hard for a spouse because you lost your help mate.

I know it's tough for my wife when she asks me my advice or opinion. I feel, and she must feel like she's really just thinking out loud.

I also spent the last 3 years as primary caregiver for my grandfather, who recently past away just a few weeks shy of his 101st birthday. I wouldn't call it a burden so much, it seemed to be more accurately described as my reason for me being. Work, play, whatever else, is really just a sideshow to the main object of being human; caring for each other.

You really are a beautiful human, Mike.

Thank you for writing this article. I can totally relate.