The website for the Family Caregiver Alliance (http://www.caregiver.org/) has a plethora of information, tips and tools to help adult children take care of their parents, whether you live nearby or the children live across the country.

For example, an interesting “trivial pursuit” kind of fact that popped up immediately at the site’s home page was this little tidbit:

Caregiving Fact: The average caregiver is age 46, female, married and working outside the home earning an annual income of $35,000. Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.

Clicking on the hyperlink imbedded in the factoid takes you to a long article that talks about how women do most of the caregiving for elderly persons, whether that person is a parent or an in-law.

In fact, the article says:

Within our complex system of long-term care, women’s caregiving is essential in providing a backbone of support. In fact, the value of the informal care that women provide ranges from $148 billion to $188 billion annually. Women provide the majority of informal care to spouses, parents, parents-in-law, friends and neighbors, and they play many roles while caregiving—hands-on health provider, care manager, friend, companion, surrogate decision-maker and advocate.

Frankly, the article is something of an information packed downer, describing how much caring for a loved one negatively impacts a caregiver’s health, finances, relationships and emotions – depression, for example, is a huge side affect of being a caregiver.

Yet the article offers some hope:

Frequently, support services can make a real difference in the day-to-day lives of caregivers. Research has shown, for example, that counseling and support groups, in combination with respite and other services, have positive direct effects on health behavior practices and assist caregivers in remaining in their caregiving role longer, with less stress and greater satisfaction. In fact, women are more than twice as likely as men to say that they would benefit from talking to someone about their caregiving experience. Further, some studies have shown that actual linkages to services in lieu of information-only programs are more beneficial to caregivers. Because women’s labor force participation continues to grow, employer-sponsored programs will become an increasingly vital resource for women who both work and provide care to a loved one.

The above doesn’t surprise me, of course. I can see the toll taking care of my dad – even the minimal amount of care needed at this time – is taking on my mother.

What this tells me is that I must get my mother to take advantage of the support and counseling services available to her in her city. It’s a priority on my to-do list before I head out to Pennsylvania.

Wish me luck – my mother is of the opinion that only “weaklings” go to counselors or vent in support groups. Getting her to do what can help her is going to take some doing.

Jean,
I enjoyed perusing your PHR blog, since it’s a about topic that is very much on our minds here at Omnimedix Institute. I invite you to learn more about the independent nonprofit institute (Omnimedix Institute) that is developing, deploying and operating Dossia here, http://omnimedix.org/dossia.html and to read about our commitment to the same principles that you eloquently describe: http://omnimedix.org/phrbasics_article1.html

In addition some more specific answers to consumer concerns are provided at the Dossia web site here: http://dossia.org/overview.html and here: http://dossia.org/faq.html

I strongly agree with you on the importance of data being held by a neutral third party, and the entire Dossia effort is in fact founded on a separation between the employer funders and the ownership of the data. We at Omnimedix are totally committed to privacy as a consumer right and as the basic foundation for the successful adoption of Personal Health Records. In funding this project, the Dossia Founders group have endorsed these ideas as well. It is because we share your privacy concerns that we have designed the Dossia system in the manner described above, as a secure and independent infrastructure to support true personal health records, controlled by the individual, institutionally independent of the employer, protected by financial level security systems (for example, never stored entirely in a single location, but rather in a federated data base), a record that will follow the person for life. There are many important details to discuss in how this vision will be realized but I believe that we at Omnimedix share your perspective. I also would say that to my knowledge the Omnimedix Institute / Dossia project is the only PHR project now nearing deployment that meets the standards for institutional independence, data control, privacy and consumer rights that you describe.

We’re doing things differently, and we are optimistic that by doing the right thing we will bring the power of PHRs to many more people than have them today. Thanks for creating a blog about PHR issues. I look forward to reading your blog again.

Miles Hochstein Program Director Omnimedix Institute

Individuals will be able to maintain comprehensive and up-to-date health histories of themselves and their families, said J.D. Kleinke, CEO of the Omnimedix Institute, the nonprofit group in Portland Ore., that is developing the system.

Dossia gathers health information on behalf of the individual from various sources and stores it within secured databases. Dossia’s open architecture will support multiple personal health applications, which lets users organize and summarize their information in ways that are most useful to them.

Health records will be secure and private, accessible only by the individual or by others to whom they have granted permission. Records also will be portable, so individuals can use the records even if they change employers, health plans or doctors.

The Patient Privacy Rights Foundation in Austin, Texas, however, denounced the plan to store their employees’ records in a centralized data warehouse linking hospitals, doctors and pharmacies.

"This is a prescription for disaster. Will these companies guarantee that employees’ personal health information will never be used against them or disclosed without informed consent?" said Deborah Peel, founder and chairwoman of Patient Privacy Rights. . Wal-Mart Stores plans to apply market pressure and incentives to get hospitals and doctors on board and will insist that health care providers adopt electronic records and prescribing as a condition of future business, she said. . "Electronic health records are essentially a good idea. But American health consumers have said repeatedly that they do not want their employers or their insurers to have access to their records," Peel said.

While here, I’m putting together an online personal health record for both of them.

They both have appointments with my father’s neurologist a couple of days before I leave and I’ve already requested a copy of both their medical records from the doctor’s office. I will pick them up on the day of their appointments, when both of them will sign the form that gives the doc’s office permission to release the records to me.

Until then, I work with what I can find out from their medicine cupboards and from speaking with them.

My father is in the early stages of Alzheimer’s disease, so he has plenty of medications that he takes, including some he takes to manage other chronic conditions he has.

As does my mother.

In fact, they each take so many medications that a kitchen cupboard shelf takes in the overflow from their medicine cabinet.

The prescriptions give me a wealth of information. Not only do I get the drug name, its reason for use and its dosage, but I also get the name of the prescribing physician. They have so many – the neurologist, their general practitioner, their dermatologist, a “heart guy” (as my father calls him), I can get all names and numbers without having to ask.

I get a list together and ask my mother if I’ve missed anyone. She lets me know that one general practitioner no longer is hers – she didn’t like his “bedside manner” so now she’s going to another physician for her regular checkups.

I’ll be coming back with my daughter the week between Christmas and New Year’s so if they have any appointments with any of these other health care providers, I’ll tag along and ask to get copies of their medical records. And I’ll do so each time I visit next year until I’m able to hit all of their docs’ offices and get copies of their records. I’ll also meet each doctor and let him or her know I may be calling periodically when I have a question about my parents’ care.

I enter as much information as I can into the PHRs I create for both of them at the free service provided at ihealthrecord.com. I also fill out the page in their PHRs that allows my sister to access their records. Ihealthrecord.com allows others users “read only” access, so I give her the log-in codes and passwords for both records so that she can add info when she’s in town and goes to doctor’s appointments with them.

My sister’s not as keen on the efficacy of using this online PHR, but I know I’ll be able to show her the online health record light as time goes on.

Having an online record for my parents will be a great Christmas for myself. I can print their PHRs out each time before I visit and have the notes within them with me. All neat and tidy.

As I get ready to start my new life across the country, don’t be surprised if you hear me softly singing this holiday season: “All I want for Christmas is my dad’s PHR.”

In the interview April answers some of the questions Jean has about the care April provided to her Mother and Aunt as she nursed them through the last chapters of their lives. The interview can be read at Caring for Elderly for Relatives.

Today, I want to pay tribute to ladies such as Jean and April.

Geoff