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Comes a Time
By: Marjorie L. Faes

Our family was fortunate to be able to take care of my father at home following a stroke in 2003. My father had three seasoned caregivers in my mother, sister and myself. But the beginning of 2013 brought a change. At 88, his health was rapidly declining. His appetite was gone and he'd lost weight. He was constantly cold and exhausted. At the doctor's office, I stated that our "goal" was to keep him home as long as possible. No extensive tests or procedures. Surgery was out of the question. The doctor's assistant suggested we try a home health aide with a facility they frequently do business with. I silently disagreed with this because I felt his time was drawing near and we were in need of much more support than a home health aide. But, this was new territory, so my mother and I agreed to their advice.

From the get go, trying to deal with this facility was a nightmare. After numerous calls to try and set up an initial meeting, it was clear this wasn't going to work. No one knew what was going on, no one returned my calls, and one person even referred to my parents as "the twins" as the call was diverted to their maternity ward! They were incompetent and unprofessional. Frustrated and furious, I called my father's doctor and explained the situation. I insisted that they find us another facility to use as we were not going to deal with the incompetence we had just encountered. It was then that they referred us to hospice. This turned out to be exactly what we needed and should've had following our first visit.

I believe that many doctors are still apprehensive about suggesting hospice even when it is clearly an appropriate alternative. There is still the stigma that you or your doctors have given up and there's nothing left to do. But hospice isn't about giving up; it's about acceptance. And helping the family cope with nursing visits, phone calls, medication, medical equipment and support at home certainly isn't "doing nothing." It was a huge relief knowing that help was just a phone call away any time of day or night.

As it turned out, we only needed hospice for three weeks as my father passed away peacefully at home. On the evening he died, hospice was notified and quickly sent a representative to the house. We couldn't have asked for more than that.

Sometimes, it's hard to know when your role as a caregiver is nearing the end. But there comes a time when every caregiver needs extra help. If you trust yourself and your instincts, they will guide you with making the best decision possible. And, when something doesn't go right or feel right to you, speak up. Don't wait for the help you need; be proactive and insistent. You will never regret that you fought hard for your loved one and yourself.



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