The Default Caregiver—
Do You Really Have to Be?
by Sheryl Karas M.A.
One of the saddest and most frustrating situations I come across in my work as a Family Consultant is when a client says she didn't "choose" to be a caregiver—she's a caregiver by default. The story usually goes something like "My brother says his career keeps him too busy. My sister says she's too busy with her three kids. I just got divorced and I don't have kids or a career I care about. Mom insists on living at home and refuses to let a "stranger" into the house despite how much help she needs, so the job of taking care of her fell to me." If I press I might hear that she cares about her mom and would feel guilty to say no in this situation... but the truth is that this caregiver doesn't believe she had any choice but to say "yes."
The anger and resentment this caregiver feels is palpable. She can't talk about her brother and sister without spitting out the words. Later I find out that her relationship with her family is miserable because she keeps trying to guilt-trip them into doing things they don't choose to be doing. Family dynamics are a disaster and she wants someone (me) to come in with my magic wand and fix it... but I can't.
The caregiver, however, IS capable of making a change. Nobody can force a person to be a caregiver against their will. Our beliefs shape our experience and we always—even if we're in jail—have the ability to change our experience by examining our beliefs and the choices that stem from them.
Let's examine the beliefs that might be running the show in the scenario above.
I don't have anything going on in my life compared to everyone else in my family, so I'm the one who needs to be the caregiver.
If this was a healthy motivation for caregiving I wouldn't have a job! And I certainly wouldn't be hearing so much resentment. Usually, what happens here is that the caregiver who believes this statement wakes up one day and realizes that her caregiving responsibilities keep her trapped in a life of pain and anguish. At a time in her life (her divorce) when she most needed to be taking stock of her needs, her desires, and her ability to create a new life she put her life down and took on caring for someone else's. Her brother and sister are busy living the lives they wanted while she's losing precious time doing something that's really not healthy for her over the long haul.
The best thing a caregiver in this situation can do is choose a time when she will get time away from caregiving to get help figuring out what she most wants for herself and let the family know that she's not available at that time. This is different than saying "I need help" and then having to deal with her siblings' resistance to giving away their precious time to someone who's not as busy as they are. By saying "I'm not available" she is making two statements: "I'm doing something important that I need to be doing" and "Mom needs help I can't provide at a particular time. What can we do?" If no one is available a new choice about how to handle mom's care (paid help, church volunteers, elder day care or social programs, or community service support) could be made.
My brother and sister ought to be doing more! I'm only doing so much because they're not!
Consider these possibilities instead:
My brother and sister do less because I'm doing more. You can test this by choosing NOT to be so available. Call a family meeting to determine how mom will be cared for when you're not there.
My brother and sister do not understand the level of care required. An independent assessment from a doctor, social service agency or care management agency might be helpful to get everyone on the same page.
My brother and sister do not agree with me about how best to provide the care mom needs. They would put her in a facility and I won't let that happen! They would leave her alone more often and I won't do that! They would...and I won't.... Under these circumstances you may need to accept that you have different beliefs about what's needed and that you choose to act on your beliefs despite your family's lack of agreement on the subject. Unless something happens to change their belief systems, you cannot expect them to cheerfully shoulder more responsibility. As I said earlier, you cannot force someone to caregive against their will — at least not without major repercussions. Accept any help they choose to do as a gift. Do what you can to gently and respectfully provide information about your mother's condition and know, that if nothing changes, you may need to make a different choice about how YOU approach caregiving.
Mom is not capable of taking responsibility for her choice to live at home so I have to take care of her.
Is this really true? It is sad to lose your independence and ability to live as you choose later in life and many, if not most, elderly people resist those changes by refusing to accept help outside the family or change where they live. They adapt; they make do; they do without—just as they did in the Great Depression and during other times in their lives when they were faced with difficult challenges.
Of course, we feel bad when we see our parents choose to allow the quality of their lives to suffer while they desperately try to hold on to how things used to be and, of course, we want to help when we can. But do you really want to do everything possible to keep mom at home with the highest standard of living possible without outside help and adequate family involvement? If not, either your mother's wishes or your own desires may be unrealistic. A more loving response would be to get support to accept the changes both of you would prefer not to face. Are you willing to deal with her feelings about allowing a stranger into her house to fill in where you can't? Are you willing to face your own distress about the quality of life her choices would create if you set firmer limits on your involvement? This is a difficult situation but if you cannot healthily take on providing the care she needs under these circumstances, it may be the only way for better choices to be made.
I thought I would benefit by doing family caregiving but it didn't work out that way and now I'm stuck!
Many people get a free place to live by taking care of an ailing parent or other relative. It looks like an easy way to take a break from ongoing financial struggles and it provides a service to someone else at the same time. Everyone wins! ... at first. But when dementia is involved—and often when it isn't—the dependency that care receivers tend to develop for their primary caregivers gradually takes its toll. The caregiver gladly does what appears to be needed. It's wonderful to know you are needed and to know exactly what needs to be done and just do it. Far easier, at first, than tackling the issues in one's own life! But then, slowly but surely, the care receiver starts to need more help. Whether this situation is caused by continued physical and mental deterioration or by unconscious emotional dynamics between the care receiver and caregiver doesn't matter. Eventually, unless this possibility is anticipated and circumvented from the beginning, the caregiver's ability to focus on her own life can become consumed by the care receiver's increasing needs.
A caregiver in this situation usually feels like she doesn't have the energy to deal with her own life and be a caregiver at the same time. But by putting off addressing her own problems she's undermining her self-confidence and increasing her anxiety and feelings of dependency. When I talk about giving up being the primary caregiver this kind of caregiver always balks because they believe they need to continue caregiving in order to have their own needs for housing, etc. met (as well as to ensure that the care receiver continues to get the level of care they appear to be depending on). The caregiver needs to make a change because this situation is intolerable but they're too afraid to relinquish the role. She isn't necessarily stuck in this situation—the family might make new choices if she bowed out—but she too afraid to do that.
A caregiver in this situation needs to consciously choose to separate her financial concerns from caregiving responsibilities by scheduling time specifically for getting help for this issue. Depending on what the situation is, a financial planner, credit card counselor, career counselor or professional coach would be worth their weight in gold. It might be expensive but it's well worth the investment!
At least one day a week would be ideal but some caregivers get so exhausted by caregiving that they find it hard to muster the energy for even this much attention to their outside needs. That's a sure sign that a new arrangement must be made and fast! Take a respite vacation designed to recharge your battery, use part of the time to find the help you deserve, and make the decision to put what used to be your caregiving energy into your own life. Once you have determined how much time you need each week to get your own life in order (a full or part-time job, more training or a higher degree, for example) you will know how much time you can realistically allocate to caregiving.
Or, you might decide that being there for your mom is actually the very best thing you could be doing—that it is your greatest heart's desire to do exactly what you are doing—if you could relieve your anxiety by having a plan that will help you pick up the pieces of your life after your caregiving responsibilities are over. If so, that's the conversation to start having with your friends and family: planning ahead to the time when the care receiver will no longer be living or when they will no longer be living at home AND asking for the support (temporary housing, assistance with basic needs, schooling or counseling) you will need at that time.
Caregiving Articles
© Copyright 2007 Sheryl Karas & Paul Hood
A new version of this article can be found in Sheryl’s latest book The Spiritual Journey of Family Caregiving.
Caregiving Articles