Why Is It So Difficult to Ask for and/or Accept Help as Caregivers?
signposts: assistance, guidance, support, question, help

Once in the throes of caregiving, it is easy to get lost in the mire of all the moving parts. It is a “job” that often requires a caregiver’s attention 24/7. Not all caregiving is created equally, nor the same; however, one thing we all have in common is that as caregivers we will need help for ourselves. The question is, will or can we accept it when it’s offered and/or will we reach out for help for ourselves?

I vividly remember the feelings of being completely overwhelmed when my caregiving began with a phone call home in, 1999. My husband helped me get on a plane in less than twenty-four hours to fly from Florida to Michigan, to respond to my dad’s unexpected and undiagnosed stroke. This ended up being my first of five family caregiving experiences. My professional background as a clinical and school social worker was all about helping others get help. Intellectually, I knew what to do, but when I was the caregiver for my own family members, my emotions took over. 

When we begin our first job or role in life, there is a lot to process and learn. When we step into the unexpected role of being a caregiver for a family member, we most likely will not be fully prepared emotionally, but also with the knowledge base needed for what lies ahead when the crisis call comes, including end of life concerns and everything in between. From my own caregiving experiences from 1999-2014, one of the things that I wasn’t prepared for, was the importance of being able to ask for help for myself. I knew that I had to help my family members, suffering from cancer, illness, dementia or the inability to speak for or advocate for themselves due to strokes.

Like many caregivers, I had a very difficult time reaching out to family and friends to help me when I needed a break. Making the decision to leave a loved one when I needed to go home for personal obligations was agonizing for me. When I experienced burnout from sitting in hospitals day in and day out, I grappled with the internal tug of war of should I stay, or should I go? Sometimes it feels harder to get things in order to pass the responsibility onto someone else, than to keep doing it ourselves. The decisions in and of themselves take their toll. 

The first example of my asking for help for myself, was after my first crisis call involving my father. After five weeks away from home, I did tell my sister I needed to go home and asked if she could please spell me. Fortunately, she had a holiday break that afforded her the chance to come home and stay with our mother. Following my father’s stroke, he stayed five weeks in the hospital for rehabilitation. I had helped with the decision-making process of his being moved to the next level of care-a skilled nursing center/assisted living. This was a grueling decision, as he was insistent that he could go home. This was a short-term plan that would lead to many life changes ahead, requiring that I ask for help with everything that would come to be.

My two siblings, like me, were in other states than our parents, but their lives at the time were not conducive to being able to drop everything and fly in to visit or give me a break. They offered support as best they could and as time went on, they were able to help more when I needed it most. 

The mix of emotions, relationship history, being away from home and feeling overwhelmed by taking care of so many details and issues for my family, left me feeling exhausted, overwhelmed, and helpless and powerless at times. Such feelings all impacted my ability to ask for or accept help. If you are or have been a caregiver, I am sure this sounds familiar.

Although I could certainly have used help and support from others, it took me quite some time to even realize that it was a very important piece of the caregiving puzzle. The pieces that were missing for me in the beginning of my caregiving was being able to: 

  • ASK for help
  • ACCEPT help offered 
  • TRUST someone else to do what I was doing. 

  The most significant impediments to asking for and accepting help were:

  1. Difficulty trusting someone else to do the “job” right.
  2. An inability to let go of control due my worry about the person in need.
  3. Guilt over leaving the person for whom I cared. 
  4. Worry over the quality of care without someone there to oversee things day to day

In retrospect one of the most important lessons I learned, came out of my own difficulty with simply asking for help from relatives or friends, so that I could go home and see my husband and take care of my life. I knew intellectually that I needed a break, but emotionally, I couldn’t let go of my responsibility.  In short, I was determined not to abandon my family in need. 

The flipside of the caregiver feeling overwhelmed and unable to ask for help, is that friends and family don’t want to intrude or interfere with families and/or don’t know what to say. They may think that unless we as caregivers ask for assistance, that no help is needed or wanted. Or, they don’t want to “bother” us.

In the case of family members, such as siblings, if possible, I know it isn’t easy, but when asking for help, try not to start with “YOU”, such as: 

  • “You never…….” fill in the blank. 
  • “You always…….” 
  • “Why don’t you?”

Instead, start with the word, “I”. A few examples are:

  • “I need a break to take care of some personal concerns”
  • “I would love to take a break but find myself afraid to leave. Do you have any suggestions?”
  • “I am wondering if you would like to sit with……. each day for an hour or so, whatever works best for you?
  • “I am exhausted and really need a break. Can you help me or find someone to help? 

As a caregiver, who had a very hard time accepting my need to take breaks, I learned many times over of the importance of taking care of ourselves, so that we can best take care of others. The best example of my acceptance that it was okay for me to go home and find someone else who could cover for me, was when I reached out to a friend, who had asked if he could visit my brother, who was fighting cancer at Christmas time. He was in end-stage and under hospice/ palliative care. 

This friend not only visited but brought others from his family to visit. During the visit, my brother called me to tell me how happy he was to have his friends visit and I was, too! He thought that I didn’t know that they were coming, and I left it that way.

I didn’t abandon my brother, but I did facilitate making sure someone that loved him was there with him during the holiday. It was a special day and it turned out to be my brother’s last Christmas before passing one month later. I was thankfully able to visit shortly after Christmas and I was with my brother at his bedside when he passed. 

Something that I did as a new and overwhelmed caregiver, was to respond to offers to help with a, “Yes but!” reply. I learned the hard way to ask for breaks and found that friends and family members stepped up and did a great job. I also came to realize that asking for help was not a sign of weakness or failure, but a sign of strength and caring. My being able to ask, accept and trust someone’s help resulted in a win/win for those in need, those visiting and the caregiver. Everyone benefitted from either being the helper or the recipient of help. 

Caroline Sheppard, MSW, recently published a book focusing on her long distance caregiving experiences with five family members spanning a fourteen-year period. She hopes her stories and experiences can help others facing caregiving from both far and near, by sharing difficult yet rewarding lessons learned. She became a caregiver while on a leave of absence. She soon found her life and priorities so changed that she never went back to work. Caroline has been a social worker for her adult working life, with a specialty in families, children and schools and has been certified as a trauma and loss specialist. She has written three children’s books: “Brave Bart,” a story for grieving and traumatized children (which is still in print), “Shadow Moves,” a story for difficult and traumatic moves and “Brave Bart and The Bully.” Two of these were illustrated by her brother who sadly passed away before the third book was completed. She was also his long distance caregiver.

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