“I feel I’m drowning, but nobody can see that,” whispered Linda, 58, daughter of a mother with Parkinson’s Disease. “We all say I’m doing such a wonderful job, but I’m so tired inside. I’m afraid I’m not doing enough.”
Over 53 million people provide unpaid care to aging parents, spouses and other loved ones in America. Many people are full-time employees and manage medicines of their family members, schedules of appointments, household responsibilities, and personal care activities often without any training or support.
At First Choice Personal Care and Living Solutions, we have spoken to hundreds of family caregivers. While every journey is different, we do hear common challenges. The first step in addressing the challenges is appreciating the difficulty.
1. Emotional and Physical Exhaustion
Taking care of someone needs strength and patience.
- Physical demands: When assisting in mobilization, transfer, and personal care tasks, it can lead to back injuries and chronic pain.
- Sleep disruption: Nighttime care requirements often cause chronic sleep disruption.
- Emotional labor: Providing emotional support while ignoring your feelings.
- Compassion fatigue: The gradual lessening of compassion due to constant demands of caring.
James is the husband of a wife suffering dementia. A caregiver who helps his wife, James said, “It’s not the tasks that are the hardest. It’s watching someone you love change. Watching them suffer. And having to be strong every day.”
Solution strategies: You may not have time for a week in the Bahamas, but small and regular self-care helps. Consider respite care options. Self-care includes stress-reduction strategies and get professional support for your physical and emotional well-being.
2. Isolation and Relationship Changes
There are many changes in social and relationships.
- Shrinking social circles: Friends might start withdrawing from you slowly.
- Changed relationship dynamics: When you become a caregiver to a parent or spouse, it alters relationship dynamics in a fundamental way.
- Misunderstanding from others: Others who are not caregivers may misunderstand the intensity of the commitment.
- Lost opportunities: Promotions, traveling, and personal likes are sacrificed mostly.
As Teresa, who looks after her father with heart failure, notes, “My friends stopped calling after some time. I had to decline invitations so many times not because they don’t care but because I could not.
Solution strategies: Find other caregivers with whom you can share your reality. Stay purposeful in trying to keep people in your life, even if in modified ways. Look for online social connections you can fit into your schedule. Have open conversations with family about who does what.
3. Financial Strain
Caregiving often has a bigger financial impact than people think.
- Reduced work hours: Caregivers decrease working hours or quit their job altogether.
- Out-of-pocket expenses: The typical caregiver spends well over $7000 out-of-pocket each year.
- Lost benefits: If you leave for a new job, you may stop receiving benefits.
- Future financial insecurity: Career interruptions can damage earning potential forever.
David, who stopped working and took on a managerial role to take care of his mom, said, “I never thought savings could deplete so fast when you are not earning and the expenses are rising.”
Solution strategies: Investigate what benefits your loved one may qualify for; check for tax deductions for caregivers; discuss financial responsibilities with family members; and consider professional financial counseling in connection with elder care.
4. Decision-Making Burden
Caregivers are frequently faced with tough choices that often hold substantial weight.
- Medical decisions: Understanding Medical Options and Making Decisions
- Financial and legal matters: Be in charge of someone else’s money and legal issues.
- Care transitions: Knowing when extra help is needed during a move.
- End-of-life planning: Talking about advance directives and wishes
Michael, whose father had advanced Alzheimer’s disease, said: “The most difficult part was making the decisions that would impact Dad’s quality of life if he couldn’t clearly voice his choice.”
Solution strategies: Encourage advance planning while your family member can take part. Seek help from elder law attorneys and financial advisors. Sign up for caregiver education programs focusing on decision-making. Include healthcare providers in complex medical decisions.
Most family caregivers must learn to navigate complex healthcare and social service systems.
- Healthcare coordination: Refers to the management of multiple providers who do not speak to each other.
- Insurance complexities: Coverage and Claim Submissions and Appeals
- Benefit programs: Eligibility and application for various benefit programs like Medicare, Medicaid, and Veteran’s Affairs.
- Finding resources: Locating the support or services in the community that you need.
“I felt like I needed a college degree to understand the system!” Elena shared with us while describing her mother’s care after a stroke. “After each appointment, there were three questions and tasks.”
Solution strategies: Work with a care manager who understands these systems. Contact your Area Agency on Aging for help. Use the hospital social worker and patient advocate. Document everything.
You Don’t Have to Do It Alone
Though these challenges are considerable, comprehension and amelioration can enhance the sustainability of care. Don’t think of it as a failure for you or your loved one to seek help. It is a tool for you both.
Take Action for Your Wellbeing Today
Your health matters as a family caregiver too. First Choice Personal Care and Living Solutions can offer you flexible respite care that allows you to take a break while your loved one is still in excellent hands.
Get our free guide to the caregiver support resources in Indianapolis at indysfirstchoice.com/caregiver-resources or call us at (317) 218-7722 to get a copy.
Contact us today for a complimentary care consultation to discuss how even a few hours of professional care each week could make a significant difference in your caregiving journey. The team at our facility would facilitate to create care plans that are sustainable for you and your loved one.
Your caregiving journey doesn’t have to be walked alone. Reach out today and let us help lighten your load.
