Throughout the course of a person’s experience with Alzheimer’s, those closest to them will experience complicated emotions. Denial, anger, sadness, guilt, despair, and resentment are all par for the course. The members of a care team or family unit may be processing their grief at different rates and in different ways, meanwhile, important decisions about the person’s care need to be made. When these strong emotions collide with existing family dynamics under the stress of caregiving, it is common for conflict among family members to arise. Even among the closest families, the stresses of caregiving can create tension. While you can’t change the way someone feels about their loved one’s illness, you can strengthen your care team through open and honest communication.
Ask for help
It is often the case that the responsibility of caring for a person with Alzheimer’s falls primarily on the shoulders of one family member. The decline of the person’s functional ability will be slow and gradual, and as those losses occur, the primary caregiver will likely step in to fill the need because it’s the most expedient option at the time. Meanwhile, relatives living in another city may not be aware of how much their loved one’s condition has progressed, and how much time the primary caregiver is devoting to the person with Alzheimer’s. If this dynamic isn’t addressed, it can lead to resentment on all sides.
The best way to avoid this kind of tension is for the primary caregiver to reach out for help. Other care team members may not be familiar with the daily challenges of Alzheimer’s, and may not be able to intuit your needs as a caregiver. People who are busy with their own lives can get distracted if they aren’t charged with a specific responsibility. If you feel you need support, reach out to your friends and family with a specific task they can help you accomplish, rather than expressing a general need for help. Clear expectations on both sides help to prevent misunderstandings, which can lead to resentment. Consider each member of your care team, and what skills and resources they bring to the table. One family member may not have the patience to provide hands-on care, but may have the organizational skills to coordinate the calendar of shared responsibilities for the whole team. Don’t underestimate friends and community members as sources of support – many would be happy to pick up groceries, provide transportation, or visit with your loved one while the caregiver takes some time for themselves.
Keep everyone in the loop
Tension within a family care team can also result from a simple lack of communication. It’s much easier for members of the care team to remain in denial if they only get periodic glimpses of the person with Alzheimer’s condition, or if they don’t understand the disease. When it comes time to make major decisions about money or medical care, those close to the person with Alzheimer’s may be offended if they don’t feel their input is valued. Care teams operate best when all the members are on the same page from the beginning. After the diagnosis is made, or during a major turning point in the person’s condition, like when the person can no longer drive, getting into the habit of scheduling regular family meetings or sending out once-monthly emails to update everyone on the person’s condition ensures that everyone has the same information on which to base their decisions. Family members living in a different city likely have busy lives, and can lose focus on their role in the care team if they don’t have consistent reminders. Regular emails, tools like the Alzheimer’s Association’s Care Team calendar, and apps like CareZone can make sharing information much easier.
It may also fall on the primary caregiver to provide information about the disease to their family members. People may not seek this information out on their own, and misunderstandings about the nature of the disease may lead to unrealistic expectations about the person’s level of function and independence. Connect them with educational resources early on, rather than in response to a disagreement about the person’s care. Referring them to an Alzheimer’s Association Chapter in their area, or simply to the Alzheimer’s Association’s comprehensive website (www.alz.org) may be a great place to start.
Remain focused on shared goal – well being of the person with Alzheimer’s
Even when the primary caregiver reaches out with information and requests for assistance, sometimes family members may not rise to the occasion. If another member of the care team doesn’t meet the expectations set for them, or if a conflict of opinion arises, try to practice good communication techniques. Though strong emotions are likely during this time, try to remain calm, and respect the other person’s point of view. Try to recognize when your feelings about a caregiving issue are being fueled by unhealthy aspects of your relationship with the person that aren’t relevant to the task at hand. Avoid blame and defensiveness, try to focus on communicating your feelings and priorities and understanding the other person’s. Use “I statements” to help shift the adversarial tone of these conversations. For example, rather than saying “You are so unreliable, why do I have to do everything myself?” try to focus on communicating your position rather than making accusations. Something like “I feel really overwhelmed right now, and it would really help me take better care of Mom if you could come visit with her once a week,” might be more effective. Try and frame conversations about care around your shared goal of ensuring the health and comfort of your loved one with Alzheimer’s.
Seek a neutral third party to mediate disputes
If your family simply cannot reach a compromise on priorities for your loved one’s care, a neutral third party may help cut through existing family dynamics to forge a plan for moving forward. You may seek the help of a mediator, a geriatric care manager, a spiritual leader, or a counselor.
For more information or questions about creating a strong care team, visit www.alz.org/care or call 1-800-272-3900.