Most people who take on the role of caregiver aren't prepared for how it quickly takes over your life and the challenges you face. But caregiving can be a meaningful, even somewhat pleasant journey. The key? Be fearless; be empowered. When you break free of your limiting beliefs and the overwhelming feelings of incompetence, frustration, anger, resentment, sadness and fear, you will become empowered. Let's look at the true meaning of empowered according to Webster's Dictionary: to give power or authority to. Just words, right? But when you break it down, it suddenly becomes huge. Power and authority, with a large dose of confidence – this is your role.
This is who you become if you plan accordingly; you are prepared; you are clear about your role; you are not intimidated by the medical system; you understand the person for whom you are caring; but most importantly, you honor yourself and you don't become lost in the process. How does one go about this?
I was inadvertently thrown into the caregiving world. I knew nothing and truthfully, if I had known what I was going to be doing, I probably would have said no to the offer of becoming a caregiver. I share my story with you so you can get a better understanding of whom I am.
My husband and I shared a close relationship with my ex-husband's father. Odd, I know. He was my daughter's grandfather and consequently over the years, we had become very close. We shared Sunday night dinners together and when my daughter left for college, the dinners continued with just three of us. We went to the same restaurant every Sunday night. One of these nights, he was very quiet and about halfway through a rather uncomfortable dinner, he asked me if I would pay his bills and check on his wife (who suffered from severe arthritis and dementia) when he had open-heart surgery at 83 years of age. (It is not uncommon for people in their 80s to undergo this very invasive, dangerous surgery.) I asked why he was doing this. He looked at me with soulful eyes and said, "Because I want to see ‘the butterfly' (his nickname for my daughter) graduate from college and I can't do it if I don't have this operation."
You can imagine the impact of such a statement. I agreed without giving it any further thought; never imagining that I would be sitting here today sharing information about caregiving. I was naive and thought this would be just a minor investment of my time.
The 14-hour operation was only the beginning of what would be the most fascinating education of my life. I knew nothing of the geriatric world or the needs of those living in it. I learned quickly about hospitals, doctors, nurses, protocol, bureaucracy, insurance forms, Medicare, prescription drugs and how to manage them. I learned how easy it is to get lost in this system and consequently, I spent a good portion of the first year learning how to avoid being abused by the system. My learning curve needed to be swift and precise. I was fortunate, in that I was dealing with wonderful doctors who truly cared about their patient, but they are still doctors with very little extra time and it was quickly evident that chitchat was not going to be a part of this process. I had to ask questions and be clear. Clarity is key to success.
My agreement to pay bills and check on his spouse turned very quickly into a full time obligation. His wife was suffering with severe dementia and her caregivers were not properly caring for her. The key to keeping her in a peaceful, unagitated state was the proper administration of her medications, which required special attention. The house was in disrepair. The help needed to be replaced. The new help needed training. The bills needed attention. Past due bills needed immediate attention. Visits to the hospital were daily; morning and early evening, with emergencies added to the mix. After a few weeks I managed to create a schedule that worked for everyone, with the exception of me.
Then, it happened. The doctors had warned that it might and it did. A stroke. Not a major, life-threatening stroke, but a debilitating stroke, nonetheless. Everything would change and his recovery would be even more difficult. Suddenly he was off to a new hospital where no one knew him, and everything was unfamiliar. He would have to rehabilitate in a new facility. Slowly depression set in as he worked to improve his functionality, while knowing that the activities he once participated in would no longer be a part of his life. After a month of rehabilitation he returned home.
It didn't stop here. There were numerous medical issues to deal with: insomnia, depression, seizures, weakness, incontinence, functionality, balance, and the overall day-to-day challenges that the elderly experience when life begins to take its toll on the body.
It was clear that my role was not going to be temporary. If someone had told me that I would be a caregiver for my ex-father-in-law, I would have thought you were crazy. But this became my life. I didn't have time to think about the consequences of this change for me. I had work to do and I wasn't letting him down. I was on call 24/7, 365 days a year. I would visit him daily. Sometimes we would have beautiful visits of laughter and remembrances and then there were those other days when he was just mad at the world (Does any of this ring true for you?), and I would take the brunt of his anger; or there were days when he would just sit and stare into space and I would read or chat (for what seemed like endless amounts of time) just to fill the air with sound. During those five and a half years, his wife and daughter both passed away; he had numerous setbacks, both emotionally and physically, and it was the great balancing act to keep him in a comfortable unagitated state. I cared for him for almost six years until his passing in July 2009.
My caregiving days were often wrought with anxiety, pain, sorrow, suffering, self-pity and frustration, until I learned how to become an Empowered Caregiver. This was no easy task, but today, it is my mission to share my knowledge, understanding and compassion for those who are providing care for another human being. We must accept the role as it comes to us; however, we do not have to fall victim to it and live a life in crisis. How we survive is up to us.