CareGiver360

In a previous posting I recounted my travel experiences in the mid-to-late 1980’s. One of those trips was to Honduras when I met with a Honduran relief and development agency that was assisting rural and very poor communities throughout the country. It was an enlightening experience for me as I was able to observe an agency committed to caring for its people in a manner uncommon to the approach used in the United States.

 The agency focused on four main areas of relief and development: medical, education, agricultural and livestock. If these four areas could be addressed then the community stood a much greater chance of improving their living conditions. With such a wonderful opportunity before it what did the agency do? It waited. It waited until the community could demonstrate it could sustain the improvements the service agency was going to provide them. The agency knew from experience that if the community was lacking the will and leadership to work through the tough times, they would give up and the project would not only fail, but leave the community feeling even more discouraged.

In order to help the community succeed in the tough times the agency required the community to select four leaders - one for each of the areas of the relief and development effort. The leaders were then required to spend a year preparing for their role. Part of the preparation involved meeting with the agency at a location outside of their community and part of the time was spent meeting with the members of the community to gain their confidence and understand their expectations. This approach, although often seen as tough love, resulted in an amazingly high rate of long-term success.

 The lesson for us is that effective caregiving cannot take place in isolation. We must prepare for the long-term challenges. We must engage a larger group of individuals, some of whom may be family and friends and other that may be paid professionals and service agencies. We must learn all we can about the tasks we will be undertaking, the experience and expectations of the support team, and the unique needs of the individual for whom we will be providing care. If we embrace this long-term perspective we will greatly increase the odds of success for a highly quality life for the people we love so dearly.

I once saw a touching Italian film called “The Keys to the House” that provided an intriguing story about how one deals with the challenges of caregiving. It is a story of a man who is reunited with a son he has never seen. A son he abandoned who has serious physical and psychological disabilities due to trauma at birth. The father, Gianni, now remarried with a new infant child, did not initiate this reunion. His son’s maternal family arranges for the two to meet after being told by doctors that meeting his biological father might help his condition.

Issues of responsibility aside, Gianni is nervous about this reunion. He echoes a commonly felt uncertainty about how to react in the face of serious disability. The film unfolds in Berlin, where the 15-year-old Paolo undergoes an injurious program of rehabilitation at a hospital. At this clinic, Gianni encounters Nicole. Nicole is the mother of a child with disabilities even more severe than Paolo’s and upon their meeting she warns him to “Prepare yourself for suffering.” Sizing up Gianni as a first-time hospital parent, she tells him she’s surprised to see him there: “It’s rough the first time. This is the mother’s dirty work. Fathers can’t take it.”

I recall this movie because it is a reminder that the demands of caregiving can be seen as overwhelming and for many families it certainly is. Friendships can disappear, extended family may feel uncertain as to how to help, and marriages can experience great stress. Nicole’s advice to “prepare yourself for suffering” is a common response. While some form of suffering may well be part of the experience, I believe we can overcome the suffering.

When we ask ourselves the all important question “Now what?” we need to know that we can only answer the question accurately after a time of quiet reflection and not hectic frustration. There are always solutions that can help alleviate our caregiving problems although they may not be ones that come to mind immediately.

As the film moves forward Gianni overcomes his uncertainty and begins to understand his son Paolo in a more complete way. He gains insight and compassion and ultimately seeks to gain a more intimate long-term relationship with his son. The process of quiet reflection, search for understanding and simply spending time in the presence of his son enabled Gianni to achieve what seemed impossible just a few weeks earlier.

I like to think that CareGiver360’s personalized care guides provide the insights necessary to achieve a more complete understanding of an individual’s care needs. With a more comprehensive view, the question of “Now what?” becomes far easier to answer.

A guiding principle behind my creating CareGiver360 was the notion that caregiving should not only manage the physical conditions of those receiving care but should also deliver tools to help those individuals enjoy and engage in life.

 My grandmother is about to reach an amazing milestone in life: in September she will be turning 100. She has been blessed with a very healthy mind and body for most of her life. Despite her recent health concerns she has lived a life of independence that many of us hope for.

 Over the past decade she has begun to experience more frequent medical conditions that have slowed her pace a bit. These obstacles continually frustrate her and cause her to ask God about His plan for her life.

 Her attitude differs greatly from that of my 19 year old son, Austin, who, for his whole life, has lived with severe developmental and physical disabilities. He has not experienced a life of independence and freedom from health concerns, but he certainly has experienced a great deal of joy in his life. Austin’s outlook on life is filled with wonder and curiosity. 

 When my family went to visit my grandmother during a recent stay at a rehab center, the difference in their two outlooks became very clear to me. It was apparent that she felt alone, frustrated and uncomfortable. Given the fact that the last time I saw her we ended up discussing Bon Jovi’s recent concert tour, her change in mental outlook was quite shocking to me. The staff did not seem to know what she needed or wanted in order to feel fulfilled and engaged in life. They simply treated her condition, but not her spirit.

 My son, by comparison, continues to enjoy life because his caregivers, my wife and I, can anticipate and provide him with all the things that nourish his spirit. It is our knowledge of his life and needs that enable us to allow Austin to bring joy and happiness to those around him.

 Although the difference in age between my grandmother and my son is 80 years, their fundamental needs are the same. Possessing an intimate understanding of what a person needs to engage in the world and feel fulfilled is critical to a successful caregiving experience and can result in joy that can be shared with the community.