Post written by Pam Reynolds of The Aging Authority

Being a caregiver for an aging adult is synonymous with being an advocate, and being an advocate is no simple task. In fact, this can be one of the most challenging aspects of caregiving. You will face many unfamiliar situations and obstacles. For example, the medical community (particularly concerning senior care) is a very complex web. Older adults can have difficulty retaining information, staying organized and making educated healthcare related decisions. This means you will need to help your care recipient stay on top of their medical care and records. Without advocacy, many seniors and disabled individuals fall through the cracks.

In addition, your care recipient will likely need assistance with legal, financial and other decisions. You are probably not an expert in all (if any!) of these fields. You will undoubtedly become frustrated and even feel hopeless at times. But take heart, as you will be their voice when they cannot speak for themselves. Your support can make all the difference in your care recipient’s aging experience and quality of life. You will be responsible for communicating their wishes, preferences and needs and ensuring that their values and beliefs are honored. Therefore, start preparing well in advance to empower yourself as their caregiver and advocate. This includes executing the legal documents such as Powers of Attorney and Advance Healthcare Directives. The saying an ounce of planning is worth a pound of cure is so applicable in the world of caregiving. The more you do ahead of time the easier the journey will be.

I once had a client named Vicky. Vicky lived with her granddaughter and grandson-in-law, Shelly and Rob. After Vicky suffered a debilitating stroke, they did not hesitate to take her into their home and had taken excellent care of her over the course of close to a decade. There was no doubt in my mind that Vicky trusted them wholeheartedly. They knew her intimately– not just medically but her personality and her innermost wishes and values. Unfortunately, while she made sure her wishes were known to her family, Vicky had not taken the important step of making any legal documentation. Therefore, Shelly and Rob did not have the legal authority to make financial and care decisions for Vicky, nor the ability to take control of managing her affairs if she was unable to do so herself.

Vicky contracted a severe case of pneumonia that caused her to be hospitalized. Her situation became dire as her infection led to sepsis. After a few days she wound up in the intensive care unit on a ventilator. Shelly and Rob were initially able to direct her care as the physicians recognized their relationship as her primary caregivers. However, when Shelly’s uncle Kevin (who was estranged from his mother and the family as a whole) caught wind of the situation he showed up at the hospital and started demanding information and inclusion in the decision making. Since he was her oldest son and legally next of kin, the doctors began to take his input over Shelly and Rob’s. Kevin insisted on every possible intervention and medical treatment possible. Shelly told me that she believed her uncle was trying to make up for his lack of participation in her care up until that point, and perhaps he was hopeful that she would recuperate and he would have the opportunity to make amends.

The doctors made several attempts to wean Vicky from the ventilator but each time they tried, she was unable to breathe on her own. Shelly and Rob knew that Vicky would not want to remain dependent on a ventilator for any extended period of time. They grew concerned that even if Vicky did come out of her comatose state that her quality of life would be drastically affected. Unfortunately, the physicians were not willing to listen to Shelly and Rob because Kevin would not back down. Kevin went so far as to restrict their access to visit Vicky because he was worried that they might influence an unsuspecting doctor’s action. A social worker got involved and consequently Vicky and Rob were allowed to visit, but it was under inflexible terms with a schedule that Kevin had to agree to. This went on for almost two months until Vicky ultimately suffered a pulmonary embolism and passed away in the hospital. Shelly and Rob were heartbroken that Vicky was unable to die on her own terms, and they were not able to say goodbye to their beloved grandmother when she passed.

As Vicky’s situation demonstrates, most of the time, it is not the medical intervention you want that is a concern. It is the medical intervention you don’t want. Vicky’s son Kevin was putting his needs and wishes above his mother’s. It seemed as if he was not ready to give up, hopeful for a deathbed reconciliation with his mother. Vicky’s medical care should not have been dictated by her son’s emotional struggles.

The medical community is trained to save and preserve lives. Which is a good thing, obviously. They are also afraid of lawsuits. Therefore, medical professionals often err on the side of preserving life even when a return to any good quality of life is unrealistic. They tend to shy away from encouraging family members to “pull the plug”. To advocate for your care recipient’s healthcare wishes, you will need the proper legal documents such as Powers of Attorney and Advance Healthcare Directives to give you the authority to effectively act on your care recipient’s behalf. If your care recipient is able, talk to them about setting these things up now to ensure that you have what you need to avoid the hassles Shelly and Rob had to face in advocating for Vicky.