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Caregiving means becoming a care partner with health care professionals – Don’t leave it to the professionals to make decisions. Establish a team.

May 26th, 2014

The below post is an excerpt from my upcoming book.

Sam always had a great relationship with his father. Despite living relatively far apart, they managed to communicate regularly and visit with each other a few times each year. Despite their close emotional connection, they never had conversations about aging in any detail. When it became time for Sam to get involved in his father’s health situation, he did not know where to begin, especially because he didn’t have any information related to his father’s health. In addition, Sam hadn’t picked up on any of the signs that his father had experienced cognitive losses for years prior to being formally diagnosed with Dementia, which is common among families. Sam believed what he observed were normal signs of aging and he did not discuss his concerns with his father. When Sam’s father seemed to be deteriorating at a rapid pace, Sam’s wife suggested that he contact his father’s physician to exchange information with him about his father’s functioning. Because his father was managing his own medical appointments autonomously, Sam knew that the “real story” was not being transmitted to the doctor and Sam wanted his father evaluated for memory loss.

“It was the summer of 2012. It was three months before he had his crisis…my wife suggested to me that I find out when my father had to go to his next medical appointment. My dad was pretty good about going to his medical so I tracked down the doctor and the office told me to fax a letter before his next appointment. I didn’t know the doctor at all but my last sentence, it was an amazing sentence, and it said, “Talk to him. Test his memory. Please. Because he will fool you if you’re just talking to him for twenty or thirty minutes you will not pick up that he’s lost a lot of his memory. Otherwise, it will likely be a crisis that will govern the next step.” Funny enough, it was the crisis that started everything.”

Unfortunately for Sam and his father, the doctor did not have the chance to conduct an evaluation before a crisis occurred. Sam’s father suffered an acute episode of confusion which led to a hospitalization and a subsequent relocation into a care facility. In hindsight, Sam wishes he had reached out to the doctor sooner; perhaps early treatment could have prevented a crisis or prolonged the emergence of symptoms. Although he had no relationship with the doctor, and despite not having detailed conversations with his father about aging, he learned later that the doctor was very open to receiving information.

“After my dad’s crisis, I tracked the doctor down since he was the G.P. He was good enough to meet with me for a good hour and a half. He explained that it was the end of the road for him – in terms of treating my dad – once he goes to the home. But he gave me a lot of closure on what might have happened to my dad and how he got into that state.”

In retrospect, this physician was clearly open to collaborating with family members as part of the care plan for his patients but the connection was made too late. If Sam had approached the doctor sooner, or if his father had told his doctor to include his son in his care, it is possible that Sam’s father could have avoided or postponed his relocation to a care facility.

Do not assume that health care professionals will not include you as part of the care planning process. If you don’t introduce yourself, they will not know they have a partner.

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