Caregiving and Grief

Since I became a widow three years and five months ago (isn’t it amazing how widows always know how many days and months it has been, while at the same time suffering from the “Widow Brain.” How does that even work?)  I’ve talked to many types of widows – suicide widows, cancer widows, accident widows, massive heart attack widows, don’t-know-what-happened widows, widows who lost their husbands to advanced age – many kinds of widows.  I can sympathize with each kind because we have all lost our loves.  All of our journeys are different, I know.  I’d like to add one to the list-the caregiver widow. Caregiver widows can also be cancer widows, etc., but there is a piece of a caregiver’s grief that is difficult, at least it has been for me, to work through.

My husband was a disgustingly healthy and health-conscious man. Strong, athletic and for the most part, a very healthy eater. In fact, I always thought I’d be the one who left first because I was the less health conscious one between the two of us. Instead, my Tony was diagnosed with end-stage renal failure, with less than 5% kidney function remaining, due to lupus. He immediately stopped working and I immediately stepped up and began taking care of him. At first, this consisted of cooking healthier meals for him, monitoring his symptoms and making sure he took his meds on time and in the proper dosages.

As his symptoms progressed, he needed more and more attention and help from me, until ultimately he needed me to handle his every need. I bathed him, clothed him, fed him, made sure he received all of his meds on time every single day. I fought with his doctors to make sure they tried everything possible to at first cure him, then I fought them to keep him alive and comfortable.

Then he died. After all of that, he died.

That wasn’t fair, I thought. I stepped completely out of myself to take care of my love. I had to become a totally different person as he got sicker.  I had to get stronger, more knowledgeable, more patient with him, more impatient with doctors. I had to learn how to do i.vs. I had to learn to dress and treat wounds.  I had to learn to use a lift to put Tony in his wheelchair. I had to learn to administer dialysis at home. I had to learn how to hug my husband in his hospital bed and not hurt him. I had to learn to hide my fear and devastation at what was happening under a blanket of confidence and fearlessness.

What an act that was.

These are the tasks of a caregiver. Caregivers do not attend school. They do not get paid. They get very little support and they get all of the grief. They feel all of the pain and fear their loved one feels. That pain, on top of the caregiver’s pain, all has to be hidden and stuffed way down deep to allow her to carry on with her tasks.

Otherwise, she breaks and cannot be what her love needs her to be. Breaking is not allowed in this caregiving thing.

People who have never been caregivers don’t quite understand what it is to cope when her love passes away. There is a moment that goes through the caregiver’s head that goes something like this: “I worked so hard to keep him safe-alive-strong and nothing worked. He still died. What did I do wrong? What didn’t I do? What did I miss? Is it my fault?”

Guilt rules the caregiver’s mind and heart. Caregivers work extra hard to learn all they can about the disease the loved one has. So that they feel they should have cured their love.  Should have saved him.

It does not help at all when well-meaning people tell the caregiver not to feel guilty and that it wasn’t her fault. We already know that. Knowing that does not help the pain. Having to hear it over and over doesn’t help either and forces the hurt back to the surface. Caregivers, after all, have learned to hide their pain from everyone and we certainly don’t want people to know how we really feel about everything that happened.

Caregiver grief is a strange grief: the caregiver grieves not only the losses associated with the death of the loved one, but also grieves the loss of feeling useful and needed. I found myself completely confused about my role in life after Tony died. I had not only been his wife and his Queen, the mother of his boys, but also the person he looked to for care, support and to help him fight his battles when that was necessary. I was absolutely the most important person in his life and after he died, I felt like nothing.

So you’ve got grief, feelings of guilt, anger, bitterness, and most of all, uselessness.

What in the world do I do now?

The question of the hour.

After my husband died, I had a lot to process. After years of getting up early, spending weekends in hospital and rehab room, I was at a loss. No more standing over nurses, supervising their work. No more hours of sitting at a bedside, hoping and praying.  No more scaring doctors into doing their job. No more measuring out meds. No more anything to do with him.

It is difficult, letting all of that go.  Being forced to try and move mountains for my husband built up muscles I didn’t know I had. I was constantly ready to spring into action. What happens to all of that when he dies? You use those muscles to beat yourself up, and that is precisely what I did. For months and months, I felt angry and guilty. I also felt bruised and broken.

I had to realize that I built those muscles for a reason and that they weren’t ever going to go away. I also had to realize I had to stop using them to beat myself up. 

Ultimately, the realization that you, the caregiver did everything she could needs to come from within.

I know I was always there for him. I know I was everything – a good support, a good caregiver, a good wife should be. I know all of that. I have to tell myself every day these things to keep my mind from circling back onto itself and taking full blame for failing to keep him alive. That’s how I felt for months.

The muscles I developed have new tasks now – to care for and support myself.  I work my mental muscles daily to keep from falling into that “I’m a failure” trap. I didn’t fail. He didn’t fail. His body is the only thing that failed and none of that is anyone’s fault. If love could have saved him, it would have.

I now focus on my boys and any friends who may need me. A good use of all of my skills. I feel that since I’ve been in the worst situations imaginable, I can beat anything…including the negative mindset I’ve carried since he died. Sure, the feelings of failure still arise, but I am more able to manage them and listen to the voice inside that says, “You did not fail him. Because you loved him you never failed him.”

With those thoughts, I flex my muscles and keep it moving.

About Cheryl Barnes

Cheryl Barnes was born in Atlanta, Georgia and after several moves with her family, settled in Indianapolis, Indiana. She attended college at Indiana University Bloomington, majoring in Public and Environmental Affairs Management. While she attended college, she laid eyes on Martin “Tony” Barnes and was completely lost. They became inseparable and were married on December 24th, 1991. After five years of marriage, their first son, Malcolm, was born on New Year’s Eve, 1991. After Tony obtained his Master’s Degree in Social Work, the family moved to Orlando, Florida. Tony worked as a counselor, while Cheryl got her dream job working at Walt Disney World. Two years later, their second son, Miles, was born in July 2004. Cheryl left Disney and took a job in accounting at a property management company. Everything seemed to be going well for the family and Cheryl made plans to attend nursing school. However, in July 2011, Tony was diagnosed with end stage renal failure caused by lupus. For the next three years, Cheryl cared for her husband while taking care of the boys and working. Tony’s health deteriorated as a result of several complications until he passed away on August 29, 2014. Thus began her new journey as a widow and solo parent.
Cheryl was devastated at the loss of her beloved Tony, but continued to work and care for their sons as she had before. As a way to work through her grief, she started writing, at first, only for herself. But, being encouraged by others, she began publishing her blog, “Widowness and Light.” Along with writing and being involved with several widows groups on Facebook while raising her boys, she works as a training bookkeeper at an association management company.
She plans to go back to school and obtain a Master’s in Social Work so that she can help other widowed persons cope with their losses. She is also working on a book about her grief journey.
Her hobbies are reading, attending Orlando Magic games, yoga, going to the beach, and just chilling with her boys.
Additionally, she is also the founder of Black and Widowed: A Unique Journey, a Private Facebook group and a contributing author of the book, Widowed But Not Wounded: The Hustle and Flow of 13 Resilient Black Widowed Women.
You can also reach Cheryl through her public Facebook page, Widowness and Light, which is based on her widowed journey.