When Susan went back to Tennessee for her mom’s funeral a few years ago, she got some sad news about her father as well: She saw the first signs of Alzheimer’s disease. He didn’t recognize the furniture, he couldn’t find his pajamas, he couldn’t remember his late wife’s name. It was during that difficult trip home that she realized her father could no longer live alone.
So Susan brought him to Maryland and began the 24-7 job of caregiving. With information and support from the Alzheimer’s Association, she developed a plan to care for him in her home. Her new responsibility disrupted her life, cut into her family time, and caused stress in her marriage.
Susan was shocked to learn how much time it takes to negotiate a highly disjointed health care system — and how frustrating it can be. She says she "should have seen the writing on the wall" when her dad’s neurologist in Tennessee told her he was just suffering "memory loss." Her instincts told her otherwise. She did some online research and recognized in her dad the symptoms of Alzheimer’s. She went back to the doctor with her evidence, and he eventually admitted that she had the right diagnosis.
That was just the beginning. Like most people with Alzheimer’s, Susan’s dad has other medical problems. He has heart arrhythmia, prostate problems, low blood platelets, and is highly susceptible to urinary tract infections. He sees a primary care physician, a cardiologist, a urologist, a hematologist, and a neurologist, each of whom monitors and treats a separate problem. But none of her father’s doctors talk to each other.
"Nobody in the system coordinates Pop’s care. The burden falls to me, on top of my day-to-day responsibilities — my job and my family — to keep him safe, fed, clothed and clean."
Susan had to build her own spreadsheet to keep track of it all. She’s given copies to members of her family and leaves copies with each doctor she visits. Every time she goes to the doctor with her dad, she asks that his records be sent to his primary care physician and other specialists, but it’s rarely done. When she takes her dad for lab tests every two months, she’s the one who makes sure each doctor gets the results — or it doesn’t happen.
Medications are a real problem. Susan’s dad takes three prescription drugs, two over-the-counter drugs, and vitamins every day, as well as occasional antibiotics. These are different drugs, prescribed by different doctors. When doctors prescribe a drug, they tell Susan to check with his other doctors about potential drug interactions. She considers herself lucky that she has developed a relationship with a primary pharmacist whom she can call for advice.
When Susan’s dad went to the emergency room with a urinary tract infection, he was prescribed an antibiotic people with dementia should not take. It was a disaster. The drug stopped the infection, but exaggerated his confusion. His behavior was totally out of control. Susan thought she was going to have to move him to a nursing home. But when she realized it was the side effect of the antibiotic, she toughed it out until the drugs finally wore off.
Susan lives in dread of the day her dad has to be hospitalized. During his trip to the emergency room, she had to stand guard as a parade of doctors, nurses and specialists poked and prodded him. None understood dementia. She couldn’t leave his side for the five hours he was there. "What would it be like if he were hospitalized for an extended period?" she wonders.
"Care needs to be better coordinated," she says. "Doctors need to talk to each other and consider the whole picture, the right people need to get the right information to avoid mistakes and duplication, and people like me need to get connected to the support services we need."