Contact Us | 800-240-9009 | 8am-6pm EST Mon-Sat
FREE shipping on orders over $95 (see details)
A Special Feature - Caring for Elderly Family Members and Personal Health Records.
Interview by Jean Henshaw (Nov 16 2008)
MyHealthMyWorld extends a special thanks to April for sharing her story of Caring for her Mother and Aunt through their illness.
April is an executive in the student services division of a Southern California university (we’re keeping her last name private). She recently spent the last two years taking care of her mother, Lauren, and her mother’s older sister, Bette, as the two elders became increasingly frail and ill.
Lauren died in June 2005 at age 81 from ovarian cancer complicated by dementia, while Bette passed away in April this year at age 84 after battling Amyotrophic Lateral Sclerosis (ALS) and other illnesses for several years.April was the lead caretaker of both women from the start. She had some help from her brothers for her mother and from her nephews for her aunt and even from her ex-husband, who remained good friends with April and who felt close to Bette – so close that he rented out his condo and moved into Bette’s home to be there for her as the ALS took its course. But April was the primary care giver and advocate, acting as something of a health care majordomo for her mother and aunt as she oversaw their finances, care regimens, took them to appointments and procedures and pretty much became their spokeswoman, guide and medical interpreter as they walked this final journey of their lives.
MyHealthMyWorld.com spoke with April about her experience as what she calls her mother’s and aunt’s “health care advocate.” We were particularly interested in whether her relatives had electronic medical records or online personal health records and April’s experience with them.
MHMW: How long were you taking care of your aunt and mother? Did you care for them at the same time?
I really was with them from the beginning of their illnesses. Diagnosis was difficult at first for Mom. It took four months of many tests until they arrived at the ovarian cancer diagnosis.
I’d had durable power of attorney for both for a while. Mom and I went together to an attorney and had the durable power of attorney, health care directive and living trusts put together.
For Aunt Bette, we were very close and it was just kind of understood. After she was diagnosed with ALS, she went to an attorney herself, actually, and just told me later, ‘By the way, I gave you durable power of attorney, etc.’
MHMW: Did you put together an online personal health record on either of them.
I had a red binder for Aunt Bette and a blue folder for Mom. Having an online record for them would have helped me quite a bit. When we had appointments and I had to take time off from work, I could have printed their records out at work and just taken them with me and when I got back I could quickly have typed in the information added from the appointment. That would have been quite handy.
MHMW: If you’d become aware of online PHRs in the middle of your mother’s or your aunt’s illnesses, would you have started one? Or would that have been ‘too much trouble’ since you already had the binders?
In fact, that’s what their HMO did, in a way. It started going with electronic records about a year ago. Doctors would come in with laptops when we had appointments and they’d type in notes from that meeting then. But previous notes, tests and so on, they weren’t there – they were still in the paper files.
And that became somewhat frustrating for my aunt. We’d have to tell a good part of the history all over again. ‘Don’t you have that?’ Aunt Bette would ask. ‘Not in the electronic records,’ they’d answer. They were beginning to go electronic, but the process was cumbersome.
But the upside was that it was forcing the physician to become computer savvy.
MHMW: So you’d have to repeat yourselves?
MHMW: Were you ever worried that information they had might be incomplete?
For example, I’d tell them ‘She had an MRI done in December.’ They’d look in her record: ‘Oh, yes, I see it there.’ Or, they’d say ‘She did? I don’t see it here; I guess they didn’t send it over.’
But I had it in the binder and could say, ‘Oh, believe me she had it. Here it is: December 13,' or whatever day it was.
This had me very concerned. And I would have been more concerned if I hadn’t been able to be with my aunt or my mother for their appointments. I knew what I knew because I’d been with them from the beginning. I knew they had a good advocate in me. If they ever had to go by themselves, I always worried that something would be missed, or something about their care not mentioned or reminded of.
One of the most loving things you can do for a loved one is be their health care advocate. If you can’t speak for yourself — say you’re stressed or overwhelmed with it all or are very fragile emotionally or physically – you need someone to ask the critical questions. Someone to watch out for you. I can’t think of a greater gift – it’s critical to the quality of care you receive.
MHMW: Now that you’ve heard of personal health records, especially online PHRs, what do you think of them?