A Special Feature - Caring for Elderly Family Members and Personal Health Records.

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?
April: I was involved with their care somewhat for a few years as they got older – the usual things as parents age. Extreme care and advocacy became necessary about a year before each of them died. Their illnesses overlapped somewhat. My mother died in June 2005 and her care took up considerable time in the weeks beforehand. So much so that I took some time off from work with family medical leave. Aunt Bette’s needs ramped up considerably just a few weeks after Mom’s death, so being primary advocate for both of them overlapped a bit.

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.
April: I didn’t know such things existed. I would take notebooks – with medicine lists and doctors we had spoken with, appointments met, test and procedures given – whenever we had an
appointment. I also had articles I’d found and printed out, research I’d done and questions either I or my mother or aunt had. Symptoms coming up. That sort of thing.

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?
April: I could see where it would be advantageous to go online to put it all there. But that could have been overwhelming to do – to start at the beginning. But I could start where I was and add to it as we went along. That would have augmented what I already had.

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?
April: It was frustrating. Since they were going electronic, I thought that if we had seen the doctor two weeks before, he could have accessed Aunt Bette’s records. But sometimes they’d say, ‘No, we’re still working out the kinks.’ Or the system would be down. So I would have to tell them what they’d done, or what we’d discussed before.

MHMW: Were you ever worried that information they had might be incomplete?
April: Yes, all the time. When we came to see them, we saw the medical record, the file. It was huge – two or three inches thick. There was no way they could read through it. They would take a cursory review and then ask ‘What can I do for you?’And then I’d say, ‘Well, let me simplify it,’ and give them an overview of diagnosis, treatments and so on. And tell them what was being done over again.

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?
April: If there is a tool that could make the life of the advocate easier, that can relieve the stress, that can simplify anything – that is a blessing.