Caregiving

Welcome to our chat. We’ll be going live in just a few minutes. Hang on….

Our topic today is one that affects millions of people, many of whom feel desperately alone when it comes time to caring for a loved one who needs help. In fact, people across the country have similar problems.

Often, we turn to academics or doctors for advice on health-related issues. In this case, we turn to caregivers themselves, who have dealt with these problems first hand.

Yes. We are in good company, Judy. An estimated 36.5 million households have an unpaid family caregiver present acccording to a 2009 study by AARP and the National Alliance of Family Caregivers.

It’s time to begin. Thank you for joining our Web chat today on caregiving ? and how to prepare for the many demands that this activity involves. You’ll be talking with two caregivers who’ve given a lot of thought to this subject. They’re long-time friends as well as collaborators in developing a resource for caregivers.

Tell me a bit about your caregiving experiences so we have some context for this talk. Jody, why don’t you go first?

Thank you for inviting us to be here.

My elderly mother lives in her own apartment with part-time assistance from a home health aide. We live in the same city, so in times of need I can take charge. My responsibilities are increasing as she ages. My brother who lives a few hours away helps with a lot of the paperwork, financial information, and moral support. Three years ago my then 83-year-old mother was hit by a car while she was crossing the street. Her ankle was shattered and required weeks in the hospital, followed by rehabilitation in a nursing home. When she was finally able to go back to her own apartment, she was less mobile and independent than before. She needed a visiting nurse, physical and occupational therapy, and help with many of the tasks of daily living. Fortunately, she is organized and sharp-witted, but has had to cope with a sudden decline in her life physically and emotionally.

That’s a lot to deal with. Margaret, tell us about your experiences.

My parents live independently in an apartment. My sister and brother and I live elsewhere. A couple of years ago, my mother suddenly had a dramatic change in behavior, becoming quite disoriented and irrationally trying to leave home. It was a real crisis situation. My sister and brother and I were actively involved in helping my dad. We all took turns coming to be with them. Once she was stabilized, my parents hired a home health aide to help out a few hours a day during the week, and to take my mother to a local day program. My father is extremely competent and basically runs the household now. Despite all these changes my parents continue to have an active social life. And we continue to come visit them especially when needed and we are also in touch with the care manager when there are concerns, as the caregiving needs change over time.

As we get the ball rolling here, we’re prepared to answer questions from our participants. So, send them in when you’re ready.

A lot of things can go wrong when someone is a caregiver. Can you describe something significant that went wrong because you weren’t as prepared as you should have been?

Jody, why don’t you start?

We’re all busy and tend to focus on the immediate. Who wants to think about the possibility of a medical emergency and its aftermath? Planning ahead — especially for difficult situations — takes initiative and courage. When my mother was hit by the car, it was a wake-up call for me, that going forward I needed to keep on hand an up-to-date record of her important health-related information. I realized I’d had a false sense of being on top things.

For example I knew the types of medications she was on but not some of the exact names and dosages. I’d kept a mental list of friends whose parents had had home health aides they really liked. But I never researched the names, contact information, rates, availability, references etc. It would have been good to have done that before we found ourselves in an emergency.

We created The Care Organizer to help caregivers anticipate and gather information they’ll need.

Margaret, what about you?

I can’t think of something that went dramatically wrong, other than just not being prepared for anything to change with either of my parents. Looking back, my parents were and are in their 80s and it would have been a good idea to collect important emergency and medical information just in case, to have thought about the kinds of resources we might need, and to have started finding out what local services were available. Having a record of medical tests, and doctor’s appointments ? in hindsight, having that information on hand could have been very helpful.

Here’s a question that came in from a reader on Monday:

I had trouble tracking my mother’s medication ? she had been fairly reliably taking what she should and when she should, but then she started slipping up and not remembering. So I got a pill box that sectioned all the medications off with morning and night divided up, and that way I could check them to see if they were empty. But then I found two pills sitting by her nightstand, I guess from the night before. I don’t know what else to do short of administering her medication myself, which at this point would be difficult because of my schedule.

Best, Bill A.

Can you phone her and hold on while she takes her pills? That might work for the time being. Over time you may find that you do have to make alternative arrangements such as having someone stop in to “observe” her taking her medication, or to think about a different living arrangement.

Questions are starting to come in now…

My siblings and I have also been very fortunate in this respect because so far we are allied in supporting my father and allaying conflict. In general, there’s no question that such a deeply emotional situation can bring forth strong and seemingly irreconcilable points of view and all sorts of family dynamics can come into play. Maybe if the family group could make a chart presenting each option with pluses and minuses that could neutralize the conflict by presenting it in a more analytical format. Having conference calls if family members live in different cities to make sure everyone’s on the “same page” is another good strategy, rather than having lots of (slightly different) inter-conversations, ensuring that even if one person is taking leadership everyone gets a voice and feels they are in some way part of a family effort to deal with this. A really good leader would do that. In our family, each of the children has contributed to helping as per our strengths and availability. And, this might be the time to seek counseling, be it end-of-life or pastoral.

I have to admit that my mother was reluctant at first to go through the process. Relying on another person for care can be hard for many of us. Giving me all that information felt to her like a loss of control and privacy. You’ll want to be sensitive to that in talking with an elder, partner, or friend. In the end, compiling my mother’s basic information and keeping it handy and updated in one place: common sense things like insurance plans, allergies, and medical conditions is not rocket science and doesn’t take that long to do. It can be a time saver — and even a lifesaver in the days ahead. In the end, talking about all this with her was a positive experience for both of us. It meant she was doing what she needed to do to help me take care of her. She was taking charge.

Here’s another question that came in from a reader:

What is happening now in the ‘on-line world’ regarding tools to facilitate (a) communcations among seniors, caregivers, medical practioners, family members, and medicare/insurance companies; (b) record keeping; & (c) reminders?

Roger in Chicago

The headlines report efforts by hospitals and physicians to create electronic medical records. As the population ages and technology evolves, we’re also likely to see more online tools for caregivers. Insurance companies now offer subscribers online tools to help manage their medical information. Google Health is an evolving online resource to organize, track, and monitor personal health information. However, I expect that as Web solutions to maintaining and tracking healthcare information develop, so may related privacy and security issues.

There are websites that facilitate online communication and updates among those concerned during a medical emergency. CaringBridge (caringbridge.org), for example, creates free websites that connect people experiencing a significant health challenge to family and friends, saving time and emotional energy.

Lotsa Helping Hands (http://www.lotsahelpinghands.com/)
is a free website that enables people want to help someone create a private group, or community. They can set up a web-based calendar to organize, schedule and coordinate tasks such as preparing meals, visits and rides, and each group has a “message board” to communicate and share information and support.

At www.medactionplan.com/mymedschedule/ people can request reminders to take their medications by text or e-mail. An issue with this is that at present many elderly people may not text or e-mail.

AARP can be a good place to start your search. You can find a variety of online tools for caregivers at http://www.aarp.org/relationships/caregiving/
A number of disease-specific websites offer online tools for patients and caregivers.

I’m wondering: Did each of you accompany your (Loved one?) to doctors’ visits? How did you keep track of what the doctor told you? Did you have any special system at the time?

Yes, I did accompany my parents to doctors’ visits. I would always write up questions and get input from the rest of the family as well for anything else to bring up. But everything was written on loose pieces of paper or in some random notebook. I was really struggling because I was traveling back and forth between their city and New York a lot and also trying to manage my own household, so I could not keep up with organizing my notes. I ended up just stuffing them in a folder and going through the whole thing every time I was looking for some information.

Yes. I often accompany my mother to doctor visits. It’s invaluable to have another person hear firsthand what the doctor has to say, someone who can be objective, take detailed notes, and help review options and make decisions after. These notes also serve as a record in one place that we can refer back to. That can be a big help especially at doctor’s appointments if there are questions about a patient’s history and past diagnoses.

Bob, that’s a very good point. Any one caring for someone with a serious chronic illness, like MS, or a serious disability faces similar issues to what we’re talking about here. I know this well, having cared for my mom, who had MS for 64 years.

That’s great. There are so many resources available. It’s just a matter of uncovering them. Margaret’s family has also had positive experiences with a care manager.

The care manager we are working with has been a great resource in finding a day program and an exercise class for my mother. My brother, sister and I would not have found these programs on our own, even though we looked on the web many times using different search terms. She also keeps her eye on the home health aides, and makes sure they are up to date on what they should be doing, and screens and finds new ones when needed. She checks in with my parents and also with the people who run the day program my mother goes to. So these people know to contact her if they see any change in my mother. And people at the desk of my parents’ apartment building know to call the care manager if they see anything out of the ordinary.

Good point. There are new products out there worth investigating, definitely.

That’s a great idea, Roger.

Going back to a participant’s question at 12:05 pm about making sure his mother is taking her pills, a participant suggested setting up skype teleconferencing so he can be sure she follows through, and he can talk her though it. It might make her feel good to have that involvement also.

A geriatric care manager is someone who coordinates care for a senior or someone with a disability. Their job is to help families get organized and help refer them to services. A home health aide typically delivers care in the home, helping with bathing, dressing wounds, administering medications, and other kinds of direct caregiving.

Does this answer your question?

You could set up file folders for main categories of information: notes from doctor appointments,notes from social worker meetings, medical tests and results, current medications, etc.
Sort papers by category and then try to weed out things that have become outdated or redundant.
Keep all your vital emergency information in one place.

Here’s another question submitted in advance by a reader:

Once there is a living will and health care proxy in place, what should you do to make sure those are honored? A friend had difficulty talking to the doctor about her mother’s situation, even though her mother had made a living will and my friend was her health care proxy.

–Jill in Brooklyn

Yes, that’s a good point, Trevania. Some people will be comfortable and able to learn how to use it and others won’t. But it’s a good suggestion for those who can.

Jill in Brooklyn 12:31
Making sure that a living will and healthcare proxy are in the hands of the right people at the right time can be a challenge. You may want to choose as your healthcare agent someone who lives nearby.

Check with an attorney or on a reliable government website to be sure you’ve completed the right forms for your state and that they are notarized or witnessed as required. Also be sure that photocopies are acceptable. In New York, for example, these documents do not need to be notarized but they do need to be signed by two witnesses.

Then think about who should have copies of these documents, especially in the event of an emergency hospital admission. The person whose wishes they record should ideally have them on hand at all times, but that’s the ideal — it’s not really feasible for everyone to carry around these papers. It may be more realistic to keep them somewhere accessible to the primary emergency contacts in case of the unexpected. Of course, make sure the appointed health care proxies (including primary and any backups) and primary care physician have copies, as well perhaps as the attorney and clergy.

Let’s talk about medical tests. What were some of the issues that came up regarding keep track of tests results? What did you end up realizing was needed?

Setting up a log would have been a good idea when things changed so suddenly with my parents, with space to record medical tests with the date and the provider, but at the time with my parents I did not have the wherewithal to do that.

Margaret, about the medical tests: did you actually obtain copies of the results and put them in a binder so you could carry them around to different doctors?

Yes, we had copies of all the reports and paid for the hospital to put all the tests on a CD. If we were seeing a new doctor we would fax the reports in advance, hoping they would be read before the appointment. My father also had a set of everything to keep in his files. And we carried all the materials with us to appointments as well.

I’m sorry if I didn’t address Bob’s comment fully. Absolutely, support groups for people with chronic illness can be an essential resource. Friends in Deed sounds like a phenomenal organization.

While we’re talking about support groups. There are many websites devoted to caregiving, such as the National Alliance for Caregiving, the Family Caregiver Alliance, and the National Family Caregivers Association. Websites for AARP, specific diseases and conditions, and patient advocacy also have a lot of caregiver information.

I recommend looking for services offered by national disease support groups in your local area. For example, the Arthritis Foundation has excellent exercise classes in my mother’s neighborhood. The Alzheimer’s Association has caregiver support groups that have been very helpful to a friend. New York has good public transportation?and that even extends to a service called Access-a-ride for people like my mother who can’t use the bus or subway. Churches, synagogues, and other religious or community centers often have activities and support groups. I’m a former librarian and recommend checking out what your public library has to offer in special programs, recorded books, large print books, CDs, DVDs, and more.

Of course, helpful friends, siblings, and other family members are invaluable.

Going back to the issue of coordinating care, how did you relate what one doctor would tell you to another doctor? Did you have any system for that? Did you have any way of knowing what information doctors were sharing among themselves?

That’s a great question, because one thing I’ve learned is that you can never ASSUME that critical tests, observations or information is communicated to the right professionals at the right time ? sometimes you have to help connect the dots. As I said earlier, we had copies of all the reports and gave them to every physician we saw. Re: doctors sharing information ? from my experience you cannot rely on that happening. I recently asked one of my mother’s specialists if he had sent her internist her reports, and the answer was “No.” For some reason the internist’s name was not on her chart. Now he is sending reports to him. I realized it is always a good idea to check. In my mother’s case, this is especially critical because both doctors need to know what medication she is taking in case they prescribe another to avoid an adverse drug interaction.

Are there any additional questions before we wind down?

Here’s something of great interest. Insurance paperwork and bills from medical providers can be overwhelming. How did you deal with this? What kind of system works? Who did you turn to when you had issues with bills or insurance forms?

My mother handles most of her insurance paperwork and medical bills, with some help from my brother. In fact, the simple medical expenses and insurance log that we offer as a free download on our website is based on a system my mother designed for herself. In researching the types of contracts caregivers might want to include in their organizers, we learned about professional medical billing advocates who can advise and assist when difficult issues arise.

That’s such an important question. First off, see if you can connect with resources in your community that could be of assistance. For instance, adult day care centers can be an important resource, allowing you to take time off for yourself.

Ask for help! So many caregivers think they have to do it all themselves and consider themselves failures if they can’t. This isn’t so. You deserve help and should get it from friends and family, if they’re willing to assist.

As on an airplane, you’re advised to put on you oxygen mask first if you need to be responsible for another person. If you’re a caregiver, you need to keep yourself from burning out. Try to have a backup person you can call in if things become too much. And then make yourself take a total break even if it’s just for a day. Do something refreshing, refueling and distracting in a good way.

Yes, Judy that is great advice.

That’s a good idea.

Do you have any advice for long-distance caregivers before we close this chat?

Be sure that your contact information can be easily found in case of an emergency. Have it available in your loved one’s wallet, on their cell phone and on a list on the phone near the telephone. Keep the lines of communication open, keep in touch. Be creative in thinking about what you can do from a distance — especially something fun. Jody’s brother helps their mother do the Sunday crossword puzzle over the phone, tackling the questions that have stumped her. My brother does skype video conferencing with his young children. That’s really fun for my parents. If you know friends or neighbors or people who come into contact with whoever you are caring for, make sure they know how to reach you in case they are worried about something. A patient’s health care proxy forms and living wills should also be readily available in case of an emergency hospital admission. If you’re the proxy, of course you should also have copies of these documents.

The medical bill and insurance form, as well as a daily medication log, is available for free download on our website www.thecareorganizer.com on the Other Tools page.

Many thanks, Margaret and Jody, for sharing your thoughts and experiences with us. And thanks to all who have participated here. Join us next week, same time, same place, for our next Tribune Web chat on youth sports injuries. Have a good week, all!

Thank you for having us and we’ve answered as many questions as time will permit.

Thank you so much, Judy. And thanks to everyone who has participated and offered helpful ideas.