I wasn’t prepared to manage the responsibilities following Dad’s hospitalization. No one responsibility was too challenging, but when all the tasks and responsibilities were combined, the work was all-consuming. One minute I was floating along in the raft, and a minute later, I was out of the raft and in over my head. I felt submerged by conflicted emotions. I did not want this responsibility. I wanted to live my life as I had been accustomed, responsible for our small team of two. Guilt permeated the layers of emotion. A family member said, “Caring for someone is not a burden when it is family.” A burden is exactly how I described the experience in my journal. Never out loud until her words took my breath away. It sounded like justification for not showing up, leaving the responsibility to me. I challenged her statement, “It is a burden.”
Gut-wrenching guilt
Catholic upbringing instilled guilt deep into my fiber and the fibers were twisted and tangled into knots. I felt guilt for saying it out loud, guilt for feeling conflicted, guilt for wanting Dad to move from his home so that he was no longer our burden, and guilt for feeling that Dad was a burden. When I shared that I felt guilty, a therapist told me that I had done nothing wrong, and I should not and could not feel guilt for a thought or a feeling. In response, I felt guilty about feeling guilt. I did not want this responsibility, but I took it. I took it but did not accept it. The conflict that I felt between what I was doing and how I was feeling was torture until I gained a new perspective, and moved to, through, and beyond acceptance. I reached a new reality and I physically and metaphorically wanted to be in this caregiving space.
For some caregivers, it may be a disease diagnosis or simply a slippery slope of accumulated tasks and responsibilities that lead to an unsustainable situation. Mired in resistance, we resist the reality of our fate and resist the help that will move us to a more sustainable existence. When we accept our circumstances, we often see the value in accepting help. Receiving the right help is like grasping the life preserver.
Don’t rush the research
When Dad returned from rehab after the stroke, I took over more tasks and responsibilities than I could handle. With minimal research and a neighbor’s recommendation, I selected a home care agency. The reviews weren’t great, but they weren’t great for any of the options, and I decided that only the dissatisfied clients wrote reviews. The aide who would assist Dad was a poor fit, but we didn’t have time to “try out” more options. She was loud and abrasive and talked more than she listened. When I calculated the worst that could happen, it wasn’t that bad. But I calculated wrong. We lost our beloved cat and learned a painful lesson. Don’t rush the process, research and reviews matter.
I made a second attempt to locate and select an agency and spent more time reading websites and reviews, including reading between the lines. I chose one and met with the representative who happened to be the owner. The owner stayed for two hours and learned about Dad and our situation. He and his wife had a very personal care story and reason for starting the business. He shared information that helped me understand the dynamics at play when the person receiving the care was resistant to outside help. It was his advice that made the difference. The key was to find the right person who would click with Dad.
Altogether, we worked with this agency for five years. It wasn’t all calm waters, but each time we reached the rapids, the agency staff tossed us a lifesaving buoy. In the beginning, after a few attempts, we found the perfect aide match, and when they clicked, as predicted, Dad looked forward to her arrival. I called it “match dot com” for the care recipient, family caregiver, and paid caregiver. Having strangers in the home was not comfortable, but in the end, the benefits outweighed the discomfort.
Empowered by planning
When you find the proper assistance, you can begin setting up a framework that will support you through the duration of the experience. Lightening your caregiving load will free up some of your time to plan for the inevitable and unexpected events. These plans will empower you. You will have more time for self-care and can prioritize your well-being. Concerns about your family member can crest and feel like a raging torrent that sweeps you away from the present moment. While you may minimize worries in other areas of life, in caregiving, it is helpful to face them head-on. Awareness will prompt you to make plans for the “what ifs.”
Having a plan will enable you to focus on moving forward rather than ruminating on what might happen or dwelling on the past. For example, what would happen if you could no longer take care of your loved one? Who could step in, or how might the transition into a care facility transpire? You might meet with a care facility representative and talk through every detail of what might unfold. I had a plan in place in the event that a hospitalization led to a permanent move to a care facility. Once this plan was in place, I could more clearly focus on care at home.
Agency vs. private hire
If you choose to hire an agency, you will work with a representative from the agency to establish the scheduling and care provided. Working with an agency versus hiring a private aide may appeal to you considering the following benefits:
- The agency staff receives training and must stay current on certifications
- The home care agency has insurance to cover mishaps
- The caregivers have cleared background checks (Verify that the agency conducts national background checks as well as state investigations.)
- Taxes are paid by the agency rather than paid by the care recipient or family caregiver
- If an aide can’t fulfill the shift, another aide will fill the gap
- The agency can offer direction to the aide and handle performance concerns that may arise
- You do not need to locate paid caregiver candidates
But, sometimes, hiring a private aide is the best option. Many areas in the country are not supported by an agency, and it might be necessary to locate one or more individuals to help with care. You can turn the list of needed services into a reverse resumé. List the qualifications that are required and maybe a bit about your family member’s hobbies and interests. From here, you can begin to hand them out to a church, hospital, senior center, or other agencies that employ or are in contact with staff or volunteers who help older adults.
Resistance
Your care recipient might be resistant to having someone in the home, might not accept that help is needed, or disagree with how assistance is provided. Therefore, it is crucial to identify an aide or aides who will be a good match for your loved one. For example, a loved one who likes to chat might prefer a more talkative aide, and the reverse is true; a quieter experience may be preferred. Someone interested in the same hobbies could be a great match, e.g., painting, gardening, puzzles, etc. If your family member enjoys home-cooked meals, an aide who likes to cook may appreciate the opportunity to share their talents in the kitchen. You might begin by having the aide simply do light housekeeping and some meal prep.
Once a relationship is developed, your family member will likely be less resistant. When the right match has been made, your care recipient might even look forward to the visits. If your loved one’s resistance is still a challenge, you might appeal to your family member’s concern for your well-being. Share that you need help helping them.
Home Health vs. Home Care
A few steps will help you narrow down the care options and begin the research. First, identify the type of services you will need and what type of agencies provide these services. There are two types of care agencies with similar names, and it is important to know the difference. One is home health care which offers “skilled care” services, and the other, home care, which offers “non-medical care” services. Non-medical care does require skill and training, but not the same training as a nurse or therapist. Here is a breakdown of the fundamental differences between these two agencies.
Home health care services require a doctor’s orders and provide temporary assistance, usually following hospitalization or injury. The services are designed to help the patient regain independence and are provided by a nurse and possibly one or more therapists. Home care agencies provide personal care services including help with Activities of Daily Living known as ADLs. These are non-medical and considered foundational to independent living. They include: dressing, bathing, toileting, eating, and moving from one spot to another. Aides from these agencies may assist with light housekeeping. Homemaker aides help with Instrumental Activities of Daily Living known as IADLs. These are non-medical activities, important to independent living, but not critical, and include light housekeeping, preparing meals, grocery shopping, running errands, laundry, companionship, and medication reminders. Home care nurse services may include: administering medication and injections, monitoring vital signs, wound care, and other medical therapies.
Understand your needs
List the services that you need. Think about the conversation and possible questions as you begin to prepare for the meeting or phone conversation with an agency representative or private hire candidate. For example, consider whether you would like transportation to be included in the services and if so, whose vehicle would be used, the aide’s or your family member’s? Will your family member require help with ADLs or more companionship-type services? Will the agency work with you on matching an aide who is a good fit with your situation both for needs and personality?
What training is provided for the staff? What background checks are conducted prior to hiring? Will pet care be included? How does the communication process work so that you will be able to stay informed about care and concerns? Then, you are ready to do the research. Get referrals, recommendations, and read reviews. Understanding your needs and wishes will help you determine if the agency or individual is a good fit.
More to consider
Once you understand your parents’ wishes and have determined the care that is needed, you can consult with an elder law attorney to ensure that any financial steps you take are not in violation of Medicaid or Medicare guidelines. There are many specialty areas under the Elder Law umbrella, so it is crucial to find the attorney who best fits your requirements. Locate an Elder Law attorney at the National Academy of Elder Law Attorneys or get a referral. Meet for an initial consultation to determine if the attorney is a good fit for your family and your situation.
Whether you are working with an agency or have hired a private aide, it’s not easy having new folks in the home and good communication will help minimize the frustrations that might arise. If something is being done in a way that makes you uncomfortable, start with questions to better understand the reasons. Then ask yourself if the outcome is acceptable. The aide’s process may be a different way of accomplishing the same objective. Letting go of control doesn’t mean letting go of standards. While we might feel that we are the best caregivers, we can also acknowledge that others are very effective at providing care, and we do need their help.
To read more about how to navigate your caregiving journey with confidence check out Navigating the Caregiver River: A Journey to Sustainable Caregiving and the Self-Caregiving Strategies Podcast. Sign up and receive the free Prepare for Care at Home PDF eBook.
Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.
Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.