In Part 1 and Part 2 of this four-part series, you learned how to determine the issues you’ll need to address as a caregiver as well as how to take care of yourself to maintain your energy. In Part 3, you’ll learn about the professionals who can assist you in performing tasks that you can’t or may not wish to do entirely on your own.
If you can’t provide care all on your own, there’s plenty of support available to you.
You have been taking care of your loved one for a while, doing your best to be present, vigilant, and proactive in meeting his/her needs. But as time and sustained effort take its toll on your caregiving efforts, you may find yourself needing some assistance in order to maintain your care recipient’s health and quality of life. You’re not alone in finding yourself in such a situation.
Many caregivers reach this challenging step for a number of reasons. For example, a long-distance caregiver can find it extremely difficult and risky to manage important details in a timely way and needs someone on site or at least locally to help. In other cases, the loved one’s health has deteriorated and requires care that involves advanced medical training or relocation to a long-term-care setting. Or perhaps an increased number of hours of caregiving may start to affect the caregiver’s own employment or mental, emotional, and/or physical endurance.
If you find yourself in any of these situations, where do you go for that help? And more importantly, how do you ask for it?
The Right to Assistance
First of all, it’s important to understand that you have a right to ask for and get help from others. Although you may be your loved one’s primary caregiver, you don’t have to do everything yourself. Consider making specific requests of your siblings, adult children, and the care recipient’s friends and neighbors. And when it comes to your personal needs (collecting your mail, walking your dog, etc.), ask your own friends and neighbors, too. Don’t feel guilty about reaching out.
Secondly, know your own limitations regarding specific roles and find helpers who are better suited to assume them. For example, is there someone you know who would be better at handling financial matters, or dealing directly with health care providers? No matter where you live, you might want to get to know and exchange contact information with any neighbors, friends, and others who already engage regularly with the recipient in order to create a “care team” who will check up on him/her and contact you if there are any problems that need your attention. You might also consider using an online caregiving group portal for coordinating the efforts of each member of that care team.
In addition, prepare your loved one and yourself for a future time when a long-term care environment (e.g., independent or assisted living community, group home, skilled nursing facility, hospice) might be a better housing option.
Types of Caregiving Professionals
At some point, you and your loved one may find it necessary to hire one or more professional, or formal, caregivers. While the cost for such help can be expensive and isn’t covered by Medicare, their help might be well worth the cost. There are several different kinds of professionals ready to assist you and your care recipient.
Personal care assistants can provide for your loved one’s non-medical needs such as bathing and dressing. They may also do the laundry, grocery shop, prepare meals, and do light housekeeping tasks.
Home health aides are trained to do medical tasks, such as taking blood pressure, administering medications, and performing certain medical procedures under the supervision of a nurse practitioner or registered nurse.
If you have difficulty finding the best formal help, there are other kinds of professionals that can help you make informed decisions.
Certified senior advisors can direct you to resources, organizations, and agencies that can assist you with financial planning, in-home caregiving, aging-in-place renovations, long-term care housing, and other services.
Geriatric care managers go beyond advising and take on the actual management of your loved one’s case by assessing that person’s needs, helping form a caregiving plan, scheduling appointments, coordinating medical services, troubleshooting, choosing care personnel, and arranging long-term care housing.
Working with the Professionals
Of course, working closely with any of these professionals will require a mutual understanding of expectations—the care recipient’s, yours, and theirs—to avoid creating any tensions and problems that interfere with your loved one’s care. Here are a few tips to establish a good working relationship:
To the extent possible, involve the recipient in making all hiring decisions.
Set clear boundaries regarding which tasks are to be done by whom.
Agree upon a process for updating a schedule that includes not only when the professional is available to work or otherwise be contacted, but also when your loved one might want to be alone, have visitors, or go out.
Provide specific and timely feedback regarding any changes in your loved one’s medical status or social needs.
Discuss any problem as soon as they arise and arrive at a mutually acceptable solution.
Two More Things…
While many caregiving situations happily end with the improvement and total recovery of the recipient, others may result in his/her deterioration due to a serious chronic illness. When this happens, engaging the services of a palliative care medical team can be a very wise decision.
Too often, people confuse palliative care with hospice care. The two are not identical. Hospice care is provided for people who have been diagnosed with a terminal illness and have been given a prognosis of less than six months to live. Palliative care, on the other hand, can be provided to anyone with one or more chronic illnesses that require medical intervention to control pain, reduce symptoms, and improve the patient’s quality of life.
Sometimes a patient’s primary care physician may not think of offering the option of palliative care. If you or your loved encounter this situation, consider bringing up the subject and getting a referral.
Another circumstance requiring additional professional help arises when someone is in the hospital, and neither a caregiver nor anyone else is able to be on hand to offer support. In that case, it’s important to know that most hospitals have patient representatives or patient advocates who can serve as liaisons with the medical staff to see that a patient’s rights are maintained, and needs are best served. Or caregivers may choose to hire a private patient advocate from an outside company or organization to help their hospitalized loved one.
Hopefully you will find that being a committed caregiver is emotionally rewarding, knowing that you’re maintaining the health, autonomy, and dignity of someone you love. It’s important to remember that doing your best involves having the ability—and giving yourself permission—to create as smooth a road as possible in the journey you’re taking together. Finding and getting the help you need will not only be a gift to you, but also to the person whose care is uppermost in your mind.
Want to Know More?
Check out these resources for more tips, strategies, and support:
Aging Life Care Association: https://www.aginglifecare.org/ (To search for a geriatric/life care manager, type in only your state.)
Certified Senior Advisor Locator: https://portal.csa.us/csa-locator/
Eldercare Locator: https://eldercare.acl.gov
Family Caregiver Alliance: https://www.caregiver.org/
Get Palliative Care: https://getpalliativecare.org/
Lotsa Helping Hands (online care team portal): https://lotsahelpinghands.com/
National Adult Day Services Administration: https://www.nadsa.org/for-caregivers/consumers/
National Council on Aging: https://www.ncoa.org/caregivers
National Hospice and Palliative Care Organization: https://www.nhpco.org/
Patient Advocate Foundation: https://www.patientadvocate.org/
Washington State Aging & Disability Resource Center: https://www.dshs.wa.gov/altsa/stakeholders/aging-disability-resource-centers-adrcs
Jeanette Leardi is a Portland-based social gerontologist, writer, editor, and community educator who has a passion for older adult empowerment. A former caregiver to her late parents for more than a decade, she now gives popular presentations and workshops in journaling, memoir writing, ethical will creation, brain fitness, creativity, ageism, intergenerational communication, and caregiver support to people of all ages. Learn more about her work at jeanetteleardi.com.