Because of the care support crisis in our country right now, family members are stepping up to give care that government programs once provided more generously. But sometimes feelings of remorse can come with knowing that our loved ones have to care for us, often at the expense of their well-being.
United Spinal Association’s Care Support Working Group members share how they cope with these difficult feelings.
Meet Ranae from Washington
Ranae has a form of muscular dystrophy, which has limited her ability to care for herself. Her full-time and unpaid caregiver is her 37-year-old son, who has put his career and personal life on hold to take care of Ranae and their home.
“I feel blessed that he is willing and able to care for me. However, my gut-mother-instinct worries that I have swallowed up his life,” she says.
Ranae’s son is happy to help and share his capabilities for good. With his help, she is very involved in advocacy. She hopes this experience feeds him intellectually, but she expresses doubt.
“One big fear I have every day is that at some point in his life, he will regret that he didn’t get a chance to do this or that, because he was living with and helping his mom,” she says. “That is painful.”
She does her best to put his needs ahead of hers. “He generally vetoes my suggestions, but has shared that he is grateful for my consideration,” she says. “He shares frequently that being here to help me is his decision and that he is truly happy to be here.”
Ranae makes sure that her son knows that he is able to leave whenever he has the desire to, and that she will figure out how to provide for her own needs. “I count my blessings and continue to pay close attention to his verbal and non-verbal needs, desires, and wants.”
Meet Shanta from Michigan
Shanta Favors sustained a spinal cord injury after a fall at work and requires daily care from her husband. “In a world where love can sometimes become intertwined with life’s challenges, my husband has shown me the beauty of balancing two essential roles,” she says.
Shanta knows that as a wife who is disabled, her needs for assistance with activities of daily living can sometimes unintentionally overshadow the more profound bond they share.
“It’s important to remember that while he undertakes the responsibilities of my caregiver, he is also my husband, someone who deserves love, affection and companionship,” she says.
They have open and effective communication to gauge when they need a break to reassess and ensure that love remains at the forefront of their journey together. “It’s vital that we aren’t just cohabitants functioning with a caregiving dynamic, but instead, we nurture a marriage rooted in connection and shared experiences.”
There are days when the weight of daily responsibilities feels heavy, and on those days, they have learned to reach out for outside support. “We have a plan and understanding that it’s OK for my husband, my caregiver, to seek help when needed. This collaborative approach not only helps us but also strengthens our marriage.”
“My husband embodies the idea that caregiving is not just a duty; it is an expression of love that must be balanced with the warmth of companionship.”
Meet Ron from Texas
Ron Hull had a C4-6 incomplete SCI caused by hemorrhaging during an exploratory surgery in December 1963. Initially, only his hands and arms were paralyzed, so early on, Ron had the ability to do many tasks on his own.
“I became totally independent and even owned and lived alone, taking care of cooking, cleaning and the yardwork,” says Ron. He hired help for what little was left. His family helped during his recovery and were happy when he was able to get out on his own. “My four siblings live over 1,000 miles away and haven’t helped me in years and rarely visit.”
As the years went on, Ron’s condition progressed, and he was advised to get care support. “I hired my primary caregiver in 1992. She grew fond of me, and I increased her hours as I needed more help around the house, started using a wheelchair, and was less able to take care of myself.” When Ron began having trouble sleeping, his caregiver-turned-partner helped turn him to prevent aches and pains and pressure sores.
Ron’s partner/caregiver is currently paid for 75.5 hours a week, 30 hours by Ron and the rest by a state agency. She also has an alteration and dry-cleaning shop, so she has limited time for herself.
They are having trouble hiring additional assistants, and she hates to train people who then quit.
Ron adds, “At 82, I’m the oldest paralyzed person I know with the longest time of paralysis in my condition.” His partner tells him that without him, she will have trouble living in this world with all its complexity.
Ron planned ahead, and before he retired, he saved money to provide her with adequate retirement and half of his assets when he dies. Ron ends by saying that he does not feel guilty.
“My partner/caregiver is a real saint, and there is nothing to feel guilty about for all the care she’s given me and others unselfishly throughout her life.”
How to Deal with Guilt
Guilt is a powerful feeling, and it can have a negative impact on a person’s mental and physical well-being. Painscale.com offers ways to deal with feeling guilty due to needing care because of a disability:
- Practice recognition and reflection. Find out the cause of the guilt, and reflect on your thoughts or actions that result from the guilt.
- Remember that being disabled is not your fault. You need to see your disability not as a choice but rather as a circumstance. It is essential to focus on self-kindness instead of self-blame.
- Use positive thinking when possible. Try to reframe statements that are guilt-driven. For example, instead of thinking “I should do more around the house,” try thinking “I appreciate what my partner does around the house, and I help when I can.”
- Put yourself in the other person’s shoes. Try thinking about the scenario if your roles were reversed. You would most likely want to help, and you would not want the person to feel guilty.
- Remind yourself that you are doing the best you can. It can be helpful to remind yourself that you are doing the best you can with your specific situation and do not compare what you can or cannot do to others.
- Seek help when necessary. Seek help from a counselor or psychologist. Guilt that does not go away can negatively impact your well-being, and mental health professionals can help you find strategies to cope with those feelings.
How About Our Caregivers?
Caring for others, including family members, can be rewarding but can also be challenging and overwhelming. Caregivers may feel like they are being pulled in way too many directions. This can lead them to feel guilty that they are not doing a good job.
Caregiver guilt is often triggered by impossible expectations or feeling guilty about taking time to do important self-care. According to United Healthcare, caregivers at risk of feeling guilty have been working in this role for years and take care of someone with high needs. Two out of three caregivers in the United States are women, who may also be caring for their children or aging parents while also holding another job.
Here are signs of caregiver guilt and suggestions for managing and letting go of that guilt.
Caregiver Guilt Signs
- Feeling angry or resentful toward the person you are caring for
- Feeling fear and anxiety
- Feeling like the whole caregiving process is on you
- Feeling unappreciated
- Feeling like caregiving has taken over your life
Letting Go of Caregiver Guilt
- Set realistic expectations. Do not compare yourself to other caregivers, and remember that no caregiver can do it all.
- Accept your experience. All of the emotions you feel are valid, and it is important to let yourself feel those emotions.
- Don’t forget self-care. You cannot be a good caregiver if you don’t practice self-care. Take a break and do things that you enjoy.
- Find support. Find people that you can talk to who understand your situation and support you. This could be a support group, a therapist, or a friend who has experienced something similar.
- Check into training options. At times, a caregiver may have to do something they are unfamiliar with. Local programs may offer training, guidance, or assistance.
It is important for both caregivers and those receiving care to remember that asking for help does not mean that you are weak or incapable. It simply means that you recognize that you need assistance.
Your needs matter just as much as anyone else’s. Surround yourself with people who uplift and support you, and do not ever be afraid to communicate your needs and feelings.
Resources
Online:
Dealing With the Guilt of Being Disabled
The Emotional Side of Caregiving
Taking Care of YOU: Self-Care for Family Caregivers
Caregiver Health
The Family Caregiver Alliance (FCA)
United Spinal Association:
Processing Caregiver’s Guilt
A Caregiver’s Identity
New Mobility:
Collaborate with advocates from across the United States to improve care support services for people with disabilities. The disability community and our caregivers need your help to find solutions for this national crisis.
