The reality is that there are only 3 roles when it comes to family caregiving: Lead, support or stay away. And, the sooner you learn and accept this truth, the easier your life will be and the greater peace you will have in your caregiving journey.
It’s only in fairy tales that siblings harmoniously and equally share caregiving responsibilities. In reality, its usually one sibling is the primary caregiver, others may help to some degree and others go totally AWOL.
If you’re reading this article you’ve likely already decided what role you are willing and able to play based on your circumstances and capabilities but here’s a refresher.
The Lead (Primary caregiver): This role can start as casual help and eventually progress into providing or arranging 24/7 care. The goal is to help manage the overall day-to-day needs and wants of your parent. Your responsibilities are varied and based on your parent’s health and ability to do things independently but it can involve dressing, bathing, meal prep, mobility transfers and walking supports. Arranging for attending medical appointments, shopping, home maintenance and being a social director is also in the “job description, as is being legally responsible for their legal and financial affairs (as named in the Power of Attorney documents).
Supporting role: Although you are not the day-to-day caregiver, you can help to keep their household running smoothly and offer emotional support to the primary caregiver. Your support can often be the key to making the “Caregiving Ship” stay its course and not sink. In this role, you could take over a single task like financial management. This would involve managing cash flow and helping with financial decision making, along with paying bills and organizing materials for tax filings. This doesn’t mean that you wouldn’t help when you can with staying in touch and visiting, repairs and home maintenance and running errands when you can. And, ideally given the needs level, you would provide some respite time so the principal caregiver can take a break.
Staying away: If you are truly unable or unwilling to help, then walk away. Family dynamics are often challenging between siblings and/or parents. Rather than disappoint, stir up past issues or add to the stress of the others, sit this one out.
A word to the wise
Setting up clear roles and responsibilities that take advantage of your various skill sets is the best way to go. But, here are a few suggestions that make your journey smoother:
Assess your parent’s needs regularly: Notice and document things when your parent’s situation is changing. Not only will this help to better inform medical professionals but provide proof to doubting siblings. This could include a loved one starting to live with discomfort or pain, skin care challenges, having difficulty sleeping, displaying different or difficult behaviors, absent mindedness, demonstrating a recent lack of personal hygiene, or unwillingness to go out or participate in previously enjoyed social activities.
Prepare for and expect push back: Siblings won’t always agree. Often getting an accurate, updated medical prognosis on a regular basis and professional advice will make things easier. It also provides an opportunity to plan, research and learn more about treatment, side effects of medications and community resources. Often a health professional or another expert can act as a mediator to assist with the guilt, conflict or lack of situational awareness that can get in the way.
Develop a care plan: Try and work with your siblings to develop a care plan that everyone (including your parents) can try to agree on and share as a roadmap. A sound care plan also includes a log of health issues, tasks, meds past and present, personal and professional contact information, legal documents, who will fund the care and additional services required.
Develop a Plan B…stay flexible:
The plan may not be perfect and will likely need to be modified over time as needs change. If siblings cannot agree or a loved one’s needs change quickly or dramatically, you may need to arrange things differently. This could involve difficult situations, additional caregivers, new living arrangements or additional costs.
Talk about living options: If possible, have the difficult conversations with your parents about their future living options before an emergency fall or illness forces hasty decisions.
Anticipate: Perhaps start with safety renovations that will help keep them at home longer, meet a care agency for back-up support and tours of living options such as assisted living facilities or long-term care facilities. Is moving-in with a family member or friend a possibility when the time comes?
Listen and learn: Ideally your parents will be part of the decision-making process and have a say in what happens. While a parent may be reluctant to act on your advice, it’s important to listen to their preferences, work within their wishes and be patient.
Talk about things: Be polite, respectful, transparent and kind to each other in conversations. Keeping siblings in the loop with regular calls or meetings to update them. They deserve to be told about new issues or potential problems that may arise. This will help you reduce surprises, set expectations and prepare for when caregiving becomes more intense. Remember, in the heat of the battle, words can not only shut down all communications but will likely be remembered long after the war is over.
Say thank you: Remember to show gratitude and say thank you to each other. No harm in sending a thank you note, a gift card for a coffee shop or a massage.
Stay calm and carry on: Your parent’s wishes, values and beliefs should be top of mind. This may mean uncomfortable conversations and tough decisions in the middle of a crisis when emotions are running wild.
Ask for help: Be specific, direct, clear and ask for something that is doable. Think about your siblings’ skills and what they can contribute. Don’t be bitter or expect the impossible.
Don’t expect or throw guilt: Avoid letting yourselves bully each other or revert back to your childhood roles. Be sure others don’t define how you act today. Assuming that the closest will be the best or the most available to provide care or that the female siblings are natural caregivers and males are better at managing the legal and financial affairs. Your siblings may see things differently. So even if your parents are not giving you whole story, it’s best not to disagree openly. Work on showing a united front and having civil conversations.
At the end of the day, caregiving for a parent can make or break sibling relationships. Even when emotions and disagreements arise, keep in mind that you should be sharing a common goal—the health and wellness of your parents and yourselves.
Mary Bart is the chair of Caregiving Matters, an internet-based charity that offers education and support to family caregivers.
