As I’ve started looking into caring for my parents from afar, I’ve come across a few nifty sites to help me.

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.

As I write this, Thanksgiving has just passed and there are but four weeks until Christmas. I’m headed out to my new home in Pennsylvania next week and am staying with my parents in their home near San Diego until then.

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.”

I thought I would break the flow of posts that have mainly been contributed by Jean and add my thanks for her commitment. In addition Jean recently interview a lady, who we call April to preserve her identity.

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

I’ve mentioned in a previous post how having an online medical record would have helped my husband take care of our daughter’s school inoculations as we make the move from California to Pennsylvania. That is, IF her medical records had been online.

But we recently had a real-life experience with online medical records and, I have to say, I’m sold!

My 79-year-old mother-in-law recently had a minor stroke. Very minor. So minor that she shows no bad aftereffects of it. None. No muscle weakness. No slurring of words. No droopy mouth. No mental impairment. It’s as if she never had it.

She spent two nights in the hospital while the health care professionals there gave her several tests — an MRI, cholesterol, blood pressure, checked her carotid artery and several others, so many that I don’t remember all of them.

Her regular physician is a member of the hospital’s staff and as she entered the ER, both her physician and the emergency room staff were able to call up her records — her personal doc from his off-site clinic, and the ER workers at the ER itself.

They were able to write notes about her care, which her regular physician read a few minutes or hours later. He also made comments, which the nurses and staff at the hospital could access at their convenience.

No waiting on the phone for the doc to come so that he could be read the results. No phoning back and forth. No driving to the clinic or hospital to get notes. It was all there, online.

 What a convenience. What a help. What a Godsend.

I wrote recently about creating a personal health record (PHR) for my parents. My plan is to gather information – the names, addresses and numbers of their health care providers, the medications they now take, the treatments they’re undergoing and why – and place them in an online PHR. Since I’m using a free online PHR service provided by ihealthrecord.com for myself, I’ll create one for both parents there, as well.

Christmas IS coming. As I write this, it’s late September and I’m telling myself I should start a list of ideas for Christmas gifts for my family and friends.

Meanwhile, my parents are in their late 70s, their health is declining and my sister and I have stepped up our visits and questions and overall concern for them. We’re also getting more involved in their care and, as they tell me of their numerous visits to doctors and clinics (“Our new hobby,” my mother quips), I’ve come to the decision I need to get all the names of all their care providers, all the drugs they are taking and their dosing schedule. In other words, I should start a Personal Health Record for both of them.

Each time they visit a doctor, I can update the online PHR I create for them. I can then keep this for myself, of course, but I could also print it out regularly and mail it to my sister and to them. That way, everyone will be up to date. Everyone will know the last time my mother went to her dermatologist, my father’s last dental check up and his visits to his neurologist. And it will be in a form neat and tidy, legible and organized.

This truly would be a great gift for all of us. Yes, it’s not shiny nor is it cuddly. It doesn’t tell time, play a favorite movie on DVD or keep feet warm at night in slippers made of fleece.

But it would give all of us peace of mind. My parents live near San Diego, California . My sister lives in Arizona and while I now live two hours away from my parents via a crowded freeway, my husband and I are moving to Pennsylvania soon. It’s already hard to keep track of all their appointments and physicians, not to mention their drug therapies.

While I could print out a copy for my parents – neither of them is computer-savvy – I could give my sister access to the online personal health record I create and update. She also could update information. When my sister and I chat on the phone, we could access the records online as we speak to look them over and discuss as needed.

I’m going to start doing this very soon – creating personal health records for my mother and father – and will post here as I do so to let you know of the challenges and opportunities inherent in creating PHRs for elderly family members.