A major frustration for caregivers is trying to do what is in the best interest of your charge only to have them challenge and/or resist you every step of the way. Nothing is more frustrating than hearing, “It’s my life and I can do what I want.”
Yes, they do get to make that choice, but the caregiver also has the right and responsibility to determine how much and how long they can serve in that capacity.
The demands of being a caregiver are enormous and can easily lead to burnout and high anxiety. I worked with a caregivers group, where almost all of them either died or became seriously ill before the “patient” succumbed to their illness.
Entry into caregiving comes in different ways. The person has an emergent situation, such as a heart attack or accident. At the beginning it’s addressing the immediate needs but over time, the situation changes from acute to chronic care. Other situations evolve over time, such as caring for an elderly parent or someone whose chronic condition progresses.
Regardless of how you enter into the caregiving partnership, the sooner you put boundaries in place, both with your charge, family and significant others, the more likely you can reduce stress and burnout.
Consider the following:
• Understand that the only thing you can control is your relationship to your own thoughts, feelings, and behavior. We can’t control others, including close family members and the person you are caring for. Investing in things we have no direct control over leads to misery.
• Identify the reasons you are a caregiver: Are you doing this because you want to or because you think you should? Are you afraid that not doing all that is being asked will cause people to be angry with you or reject you? Do you identify as a caregiver and are more willing to take care of others and not yourself?
• As much as possible, know exactly what you are dealing with. What is their diagnosis? What stage of progression are they in? What kind of care do they need now? What symptoms indicate a changing disease status? What kind of care will they need as the disease progresses? Talk to other caregivers who are caring for someone with a similar diagnosis. Talk to the treating physician. If the person does not want you to talk to their care provider, why? The answer to this question may help you better understand whether you should be in the caregiving role with this individual.
• Know your limits and capabilities. Be realistic about what you can do and when.
• Inform family, the person being cared for, as well as medical providers about what you can and cannot provide. If you are caring for a spouse, parent or adult child you may think you have to do it all. Not only is that unrealistic, it’s unhealthy for you and the person. Further, in today’s medical climate, where more and more responsibility is being deferred to the patient and those caring for them, be very clear about what you will and will not do. For example, many home health nurses think the family can handle certain types of treatment, wound care etc. If this is going to be a problem for you, let them know it right up front so other arrangements can be made.
• Put it in writing: Spell it out, via e-mail or writing, about what you are willing to do and limitations you might have.
• Just because they ask doesn’t mean you have to do it. Learn to say no.
• You are not responsible for making everyone happy and comfortable all the time.
• Recognize the need for physical and emotional boundaries: It’s easier to determine physical boundaries, such as having the person live with you or vice versa. This can also extend to how much personal care you feel comfortable giving, which can be impacted by your relationship to the individual, culture, gender etc. Emotional boundaries are more complex and require that you are aware of your own wants and needs and can separate these from the wants and needs of others.
• Take time to respond to requests: For example, Family and friends will often want frequent updates about how the person is doing. Make it easy on yourself by providing a group update once a day, week, month or whatever time period make sense for you.
• Identify the help you need and seek it: If people ask how they can help, don’t just brush it aside. Give them ways they can help. Join a caregivers group and by all means, contact local organizations that can help you. Use the How to Get What You Need; Check List for Those Living with a Chronic Condition & Those that care for them.
• Know when it is time to change your caregiving role: The longer you are a caregiver, the more likely it will be that you reach a point where you just say, “I can’t do it anymore.” Does that mean you’ll just walk away? Could it be modified if others pitched in and helped? Do you just need a vacation or more time off during the week?
The following are signs you need to make a change: avoiding the person, anger, anxiety, fatigue, depression, impaired sleep, poor health, irritability or believing there is “no light at the end of the tunnel.”
This is the time to sit down with your charge and/or family and be clear. This is not about making people feel guilty but it’s about your ability to set clear boundaries and work with others to problem solve.
Using the three prong approach can help:
• Outline what you are no longer able to do and why
• Recognize it will have consequences for the person being cared for
• Provide a suggested solution
Some examples include:
“ Due to my work schedule, I will no longer be able to clean your house and shop for you during the week. I know you don’t like other people in the house, but other members of the family will be taking my place.”
“ Winter is coming and the combination of high heating bills and difficulties of getting to you during snow storms means we need to make a change. While it’s not easy to leave your home, we need for all of us to be safe. There are several options we can consider but remaining here is not one of them.”
Caregiving is a dynamic relationship that evolves over time. As caregiving tasks increase, so will stress on the caregiver. A caregiver and his or her loved one will manage this challenge successfully if each person is able to express directly what he or she needs, wants or can do. A relationship that allows for and respects boundaries and individual limitations can expand to include other caregivers without the risk of lessening the importance of the primary relationship that sustains the elder in the aging process. When and How to Say “no” to Caregiving.