Advice for developing a caregiving plan
Approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last year, according to the National Alliance for Caregiving and AARP.
Caregiving means assuming a great many unfamiliar responsibilities, such as taking care of a parent’s finances, supervising employees, and acting the part of ombudsman with medical personnel.
Long-distance caregiving is both easier and harder; it presents challenges that caregiving up close or in one’s own home does not.
Good communication among all the significant parties is the best means to develop a successful caregiving plan. However, communication skills are developed over a lifetime. They don’t suddenly become “good,” especially when family members are dealing with the problems and stresses that arise from caregiving needs.
Of primary importance is the individual who needs the assistance and care. If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict.
Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity — it is, after all, that person’s right to make choices and decisions.
A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you — autonomy or safety — or whether you place equal weight on both. Establish common goals.
Divide responsibility based on the strengths and abilities each of you brings to the family. It is important to be specific.
Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.
If the expectations coming into the caregiving relationship are not fulfilled, the seed for conflict is planted. Expectations are born out of a sense of fairness.
Imbalances of responsibility lead to bad feelings among siblings and to caregiver burnout. Some of the common imbalances tend to be that the geographically closest child often shoulders the greatest burden. Daughters often provide more caregiving than sons, and sons may provide more financial support.
Truths about caregiving
- You rarely get what you expect with caregiving. Even a senior healthcare professional can be unprepared for the challenges.
- Be patient with yourself; you’re probably doing the best you can.
- Encourage open but tactful communication with everyone involved in the care; strive to work together toward a common purpose.
- Be aware of the magnitude of the responsibility; be realistic about what you can and cannot handle. Seek support, whether through formal groups, friends, family members, or anyone who’s “been there” and understands. Don’t be afraid to ask questions or to ask for help.
- Breathe deeply, and make time for yourself.
- Be prepared for the surprise, even shock, of how expensive providing care can be.
- Expect to feel anger, sadness, depression, even bitterness, not just over the care receiver’s condition but also the difficulties and exhaustion of caregiving. (On the other hand, there can be many positives and a deep sense of satisfaction.)
- You can also expect your roles and responsibilities to expand constantly, especially with elderly care receivers.
- It is likely your family relationships will change through caregiving — negatively, positively, or both.
- Don’t be surprised if the end of caregiving brings a sadness of its own — not just for the passing of your loved one, but also for the end of a special sense of purpose.
Most caregivers would do it differently, maybe, but would still do it again.
Caregiving leaves its imprint; it is a deeply life-changing experience.
This is an excerpt from What to Do about Mama: Expectations and Realities of Caregiving, by Barbara G. Matthews and Barbara Trainin Blank.