Julie Smith from Michigan

A Daughter Says: "Sometimes the complications seem endless"

Julie SmithWhen Guadalupe and Ruth Guzman came to the United States from Mexico in the 1920s, they traveled the Midwest as migrant farmer workers until Guadalupe was hired by a foundry in Pontiac, Michigan. That’s where Pedro Guzman was born in 1934, the family’s 13th child, so premature and sickly that the midwife told his mother, “He’s never going to make it, throw him to the pigs.”

Pedro grew up, graduated high school with a coveted General Motors sponsorship to train as an engineer, and went to work at the Pontiac Motor Company. By the late 1980s, with 30 years in at Pontiac and his four children grown, Pedro took early retirement. It gave him more time with his family, especially his third child Julie: “My husband died when my daughter was two years old, and my dad stepped in to be a second dad to her,” says Julie Smith, now 53. “As a result, my dad and I are really close.”

As those born prematurely often do, “my dad had lung problems for much of his life,” says Julie. “In the mid-1970s he was diagnosed with diabetes, which his father had as well. Then in 1997 he wasn’t feeling well, went to the hospital on a Friday and on Saturday they did a quintuple heart bypass on him.” Six years ago, he was diagnosed with myasthenia gravis (MG), a degenerative muscle disease. Three years ago he was diagnosed with dementia, probably Alzheimer’s disease.

"My dad is pretty lucid most of the time," says Julie. "His issue is more with short-term memory, so he repeats stuff a lot. All the grandkids are trained — ‘We don’t care if Papa asked you this question five minutes ago, answer it like it’s the first time’ — and they all roll with it." But Pedro is less and less able to manage his own care, so that task falls to Pedro’s second wife Sandy and to Julie, her two sisters and her brother.

Julie’s job managing a church office is flexible enough that she often can be with Pedro during medical appointments or hospital stays. But at those times, Julie says, what she witnesses is sometimes more than she can bear.

"After his bypass, my dad healed very well and has been careful with his diet, so his heart is not a major issue," she says. Yet every time he comes to the hospital with another complaint, "if he says anything about any pain in his chest, they want to run 5,000 tests for the heart issue and say they can’t let another doctor look at him until the heart doctor signs off. Well, how many hours does he have to wait for the heart doctor to sign off before they can call the lung doctor, or the MG doctor? Or, the heart doctor comes in and looks at him and says, ‘Run another test’ and you don’t hear from him for four more hours. If my dad came to the hospital after eating breakfast at 8 a.m., and they’re running all these tests and not feeding him, by 7 p.m. we’re saying, ‘Do you not understand this man is diabetic and he has to eat?’" Because of kidney damage from the diabetes, Pedro gets dialysis three times a week; the vein in his arm that holds the dialysis port is so narrow that it must be cleaned out every 4-6 weeks for the dialysis to run smoothly.

In late January, Pedro tripped over one of his beloved dogs, fell and broke his right femur. Surgeons stabilized the bone with a rod and screws, and told Pedro’s family it could take weeks to heal. Julie remembers "sitting with Sandy the morning of the surgery, looking at the calendar and saying, ‘Oh, he has an appointment to get his vein cleaned out on such-and-such a day.’ But Dad went into the rehab facility and the vein cleaning got lost in the shuffle. Then one day in the rehab, Dad’s arm started to bleed, they couldn’t get the bleeding to stop, they had no idea what had happened, and Dad was too ill and confused to tell them. Julie Smith and her Dad.jpg

"So they put him in surgery and took out a foot and a half of vein to get that port back in place. To keep up the dialysis, they tried to put a temporary port in his neck, which failed, so they put one in his groin. He was in ICU overnight because he lost a lot of blood — and by the time he was settled in a room, we realized he hadn’t eaten anything since before the surgery the previous day. My sister was with him and I told her, ‘Tell them to get him a tray now!’ I know they’re dealing with the port in his arm and that’s their main concern, but if he goes into diabetic coma, you’re going to have a whole other issue."

Sometimes, Julie says, the complications seem endless. Until Pedro got used to the dementia medication, it made him vomit so much "that this man who had gone to church every Sunday couldn’t leave the house for two months." Every time Pedro is hospitalized, he is put on a different kind of insulin than he takes at home, "and then they wonder why his blood sugar fluctuates all over the place." After the surgery to reinstall the dialysis port, Pedro needed pain medications, "and he’s one of these people who’s sensitive to Vicodin — so he’s taking his comb and beating on ‘bugs’ that aren’t there, and he’s screaming at me that I’m lying when I say I don’t see them." As Sandy, Julie and Julie’s siblings all live in the area, "we can put together a pretty good schedule" for coordinating and monitoring Pedro’s care, Julie says. "And I don’t mind doing it because he’s my dad. But what if he had one kid that lived out of state, and that was it? And what about people like my younger sister, who has no children? When she’s older, who will do this for her?"