Of the many challenges affecting today’s 65 million volunteer caregivers, one issue seems to loom over them all: boundaries. In a short-term event such as trauma, surgery, or recoverable illness, the immediate needs of the afflicted usually eclipse the needs of others—and boundaries often go out the window. With a chronic or permanent malady or disability, however, balance regarding the ongoing needs is required. Even with ample funds and support help, the caregiver/patient relationship must incorporate healthy boundaries that allow all parties to live as individuals.
Isolation, lost independence, and loss of identity (what I call the three “I’s”) affect virtually every caregiver. That loss of identity is where the boundary issues often grow to critical levels. Caregivers often struggle in speaking in first person singular. When asked how he/she is doing, the reply often sounds like “We just got home from the hospital. Our situation is not improving. We’re getting over an episode.”
As every new mother will tell you when she and her baby start to separate in their personal growth, the first step towards learning to detach from that kind of enmeshment is saying, “No.”
An illness or disability can debilitate more than one life if allowed to, and caregivers need to separate themselves from the loved one’s condition. It takes a while for some caregivers to realize that they didn’t cause it, can’t cure it, and can’t control the disease or circumstances their loved one faces. When someone we love suffers, we often throw good sense to the wind— and rush in to return normalcy to that which can no longer be normal. It is unsustainable, but our emotions are involved and that usually means we have yet to discover our own powerlessness—while also failing to see things as clearly as we would like. Throw in an ample supply of guilt, obligation, and resentment, and we have a swirling cauldron of dysfunction.
One simple word launches a path toward a healthy identity and boundaries: “NO.”
Saying “no” to the constant demands and often craziness involved in a caregiving scenario is hard work and unpleasant—and there will be blowback. Nevertheless, standing your ground as a caregiver and not capitulating to every request is necessary for the caregiver’s own survival. The neediness of the patient will drown out the cries of the caregiver—and dementia, personality issues, and/or pharmaceuticals exacerbate that neediness. It is unwise to expect a sick, elderly, or medicated individual to show leadership in this area, and so that burden falls on the part of the caregiver. The patient often only feels and sees immediate need—and cannot always recognize the fatigue, stress, and dangerous health patterns of the caregivers. Moreover, even if they do see them, patients may be unable to process how those warning signs can detrimentally affect their situation long term.
The caregiver is responsible for his/her own peace of mind and healthy lifestyle. In reference to my own Christian faith, I often tell stressed out caregivers (while also reminding myself) to “Look down at your hands. If you don’t see nail-prints, this is not yours to fix!”
Usually armed only with love and a sense of responsibility, caregivers recklessly deplete themselves in trying to care for a vulnerable loved one. The love and responsibility are admirable traits, but how long can the patient “feel better” at the caregiver’s expense? Caregivers must direct that love and responsibility to their own well-being first.
The entire crux of everything I offer caregivers is what I call the “Delta Doctrine.” While flying Delta Airlines to Atlanta one day, I discovered that flight attendants state the best advice for caregivers – all day long. “In the unlikely event of the loss of cabin pressure, oxygen masks will drop from the ceiling. Securely place your mask on first, before helping anyone next to you who may need assistance.”
That small directive contains applicable wisdom for so many life circumstances – but probably none as poignant as for those of us serving as a caregiver for a chronically ill/disabled loved one. Compassion and love often mistakenly lead us to hold our own breath—while trying to help someone else breathe, but once we make that decision, it is only a matter of time before we find ourselves gasping for air. If we are unable to breathe, how can we help anyone else?
In order to put the mask on yourself, you must often tell someone else who is struggling: “No.” Truly loving that person means you will look to your safety first, so that you can better care for them. They may not understand this, and may even castigate you for it—but it is the right thing to do.
If your loved one wants you to convince the doctor to increase painkillers, you can choose to say, “No,” and let them deal with their doctor directly. Negotiating painkillers with your loved one’s doctor can often be a no-win scenario. It is important and healthy for you to remain outside of that discussion. If the physician asks your opinion, it is certainly advisable to give it, but painkillers and chronically ill patients is a sticky wicket best avoided with good boundaries.
If your loved one wants you to stay at the hospital around the clock, you can choose to say, “No,” and go home and get some rest while allowing the hospital staff to care for them. Going without proper rest will only weaken your ability to care for your loved one. You are not abandoning them. You are caring for them better by strengthening their main support system—yourself. Again, this is a discussion about long-term issues, not isolated, short-term medical events.
If your loved one wants you to let them drive, and you know that they are not able to, you can choose to say, “No.” They may see that decision as limiting their freedom, but you can stand firm knowing you are protecting their safety (and the safety of others).
The list goes on, but the point stands.
Saying “no” isn’t cruel; rather it implements healthy boundaries. Although your loved one may not respond positively to those boundaries, living without enmeshment while maintaining your own identity —will most certainly allow you peace of mind, strength for today, and bright hope for tomorrow.
Contribution by volunteer and caregiver, Peter Rosenberger.
Peter W. Rosenberger is the president of Standing With Hope – a non-profit prosthetic limb outreach to amputees overseas. Standing With Hope recently launched an outreach to caregivers that draws upon Peter’s vast experience as a caregiver for his wife, Gracie, for 27 years through her now 78 operations, multiple amputations, 60 + Doctors, 12 Hospitals, and $9 million in medical costs. He hosts a weekly radio show on Nashville’s 1510 WLAC for caregivers. Peter and Jeff Foxworthy recently teamed up to do a hilarious video for AARP "You Might Be A Caregiver If ..."
Peter's newest book is Wear Comfortable Shoes-Surviving and Thriving As A Caregiver. For more information visit http://www.caregiverswithhope.com