The Place Where Family Caregivers Are Born
And as caregivers, we need to ask ourselves some critical questions before taking action
In December 2022, Jane's mother-in-law had a medical event that resulted in a hospital stay. A week later, she was discharged to a rehabilitation facility. All was going well, or so they thought. During the second week of her stay, the family was informed by the doctor that Mom would not be able to live on her own any longer. All that could be done at the rehab facility had been done. They were stunned by this news.
Then, the discharge planner informed them Mom was scheduled to be discharged in three days. They needed to make and agree on a plan – and fast. It was a desperate, stressful time for their family. Jane experienced a definite before and after feeling. She equated this feeling with a few other times, like when you find out you're having a baby or you have cancer. Life-changing words.
Family caregivers often hear life-changing words without any real support. If we are lucky, we may be given a few sheets of paper with lists of phone numbers and websites for various services that may or may not be needed. Jane was given very little guidance. During that time, she did not know what she did not know. It is in this moment family caregivers are born.
Unfortunately, Jane's experience is not unique. Most of us, or someone we know, have been jolted by the news that a family member or friend now needs 24/7 care as a result of an accident or hospitalization.
In this moment, we need to get as much information as possible regarding the health and required care of our family member or loved one. In this moment, when a caregiver is born, we need to ask ourselves some critical questions before initiating a plan of action.
What are we willing to do? What are we able to do?
Some people are not willing to be involved with wound care, injections or issues related to incontinence. Understandably, a son might not be comfortable assisting his mother with a shower. There are also things we are not able to do. We might be physically unable to transfer a larger person from a bed to the toilet. We may live too far away or have our own health challenges.
Who is going to support us? Are we the right person? Do we need to say no?
Building a circle of care with family members, friends, church or club members and paid caregivers, with each providing their unique talents and abilities, prevents the burden of care from falling upon one person. We can't be afraid to ask for help; we have to start building that circle from the start. Maintaining support over the long run will impact our ability to continue to be a caregiver.
Relationships create other implications. If we had a volatile or toxic relationship with the person needing care, becoming their caregiver is not suddenly going to fix the broken relationship. A wife who divorced her husband years ago might not be the right person to care for her ex-spouse. Broken families have unrealistic expectations if they decide an estranged relative should be the caregiver. The impact on other important relationships in our lives can also be a factor in our decision. It can hinge on something as simple as not being able to give up our job to provide 24/7 care without jeopardizing our own families. "No" is a valid response and might be the right answer.
Do we know the resources available to us? Do we need a geriatric care manager?
A discharge planner at the hospital or a hospital social worker can assist in identifying available resources. Contacting the health plan of the person needing care can also help identify available services. Finally, the Eldercare Locator (www.eldercare.acl.gov, 800-677-1116) can connect us to the area agency on aging that serves our community and can identify available community resources.
We may want to get personalized assistance with setting up a plan of care. A private geriatric care manager is a professional, often a paid social worker or nurse, who can help create a plan of care. The impartial geriatric care manager can help navigate family dynamics and deliver uncomfortable news in a professional manner. They know of local resources, state and federal laws and key services such as elder law attorneys and financial/estate planners.
Do we agree the discharge plan is safe?
Sometimes, we do not agree with the discharge plan or feel it is safe. Caregivers have the right to appeal or ask for another review of the situation. Next Step in Care has an excellent guide to rehabilitation services at www.nextstepincare.org/uploads/File/Guides/Rehabilitation/Guide/Complete_Rehab.pdf
The publication states, by law, the rehab program must let us know how to appeal and explain what will happen. They recommend we request contact information for the Beneficiary and Family-Centered Care Quality Improvement Organization (BFC-QIO) that reviews appeals in our area. An appeal may only take one or two days. It's important to know that if the appeal is denied, the patient is responsible for paying for the additional days and will have to leave the facility immediately.
Have we considered palliative or hospice care?
Palliative and hospice care are not the same thing, but both might be good alternatives to tailor the care to the needs of the person. Palliative care is specialized care for persons with serious illness – such as cancer or heart failure. Treatments for a cure are still an option, but the patient decides their health goals and how they wish to spend their energy — which may mean less aggressive medical treatments or hospital stays. Hospice means the person needing care is not going to be cured and probably has six months or less to live. Pain and symptom management, along with emotional support, are the goals. Palliative and hospice care can impact the care and support received, which impacts the caregiving situation.
Caregivers are often born in that moment of a fall or accident, a diagnosis or a dramatic change in health status. We also can become caregivers over time — taking on more and more tasks to support the person needing care. It is worthwhile to pause and ask ourselves why we are willing to take on this challenge and meet this opportunity. If we move forward with this journey, we may need to pause along the way to see if the "why" is still valid and the "how" is still working. As a wise nonagenarian once said, "Now, things will be different."
The WellMed Charitable Foundation offers a variety of programs that directly serve older adults and their caregivers across Texas, New Mexico and Florida with a special emphasis on wellness, prevention and living with chronic illness. In addition, the foundation has contributed millions to non-profit partners who also serve this population.
