My father and father-in-law each had a leg amputated, quite some time ago. Months later, well after the amputations healed, both complained of severe pain in their foot. But neither had a foot. The pain was called “referred pain” and my wife and I dismissed it as being “in their head.” In fact, the pain was a result of the nerves that headed down that way being stimulated quite unpleasantly and was very, very real. Excruciatingly real. But I didn’t really know that then.
I know it now having just experienced it myself, thankfully not as a result of losing a leg. I had an injection in the facet of my cervical spine at level C2. The doc inserted the needle, fairly painlessly, and then administered the steroid. The pressure I felt at the injection area was expected and uncomfortable. But it was tolerable. What got me, and what freaked me out, was the real pain I felt about 6 inches higher than the injection site, at the side of my head above my ear. I was scared. I wondered if my brain was being affected. I called out to the doc, informing her of this pain. Informing might not express the fear I had. It felt as if she was pressing her thumb against the side of my head. But this doc was super. She immediately calmed me down, reminding me to breathe into the pain, and mostly easing my concern by stating emphatically that it was referred pain. I can’t tell you how weird it felt. Here I was lying on a table with a needle in my spine, with real, sharp pain coming from the side of my head. And then it went away, just like the doc told me it would.
A few minutes later she was injecting level C5, and this time I felt a sharp stabbing in the middle of my back and under my shoulder blade. Again I informed my doc, but this time with considerably less affect. I knew, and she assured me again that this was referred pain.
Many caregivers deal with people who either have lost legs or arms, often a result of diabetes, or have nerve-related disorders. Nerves are complicated things in many ways. You may have a sore leg or foot, but the root of the pain is in your back. Pressing strategic spots along the route of the nerve often has the feeling of easing the pain, even more than pressing the spot in your back where the nerve root exits the spine. Maybe that’s how acupuncture works. I don’t know. But I do know that I’ve pressed on places and the pain I felt elsewhere eased. So there’s something to this.
I hope you never have to experience it yourself. And the next time you are with someone complaining about pain you absolutely know is not coming from that spot, understand that it’s referred pain. And be sympathetic and empathetic. It’s very real, a very odd sensation, and very painful.
A colleague wrote to me recently apologizing for her delay in getting back to me and explained that she had a family emergency she had to take care of. Well of course that would be no problem, I said. I learned later that the emergency was about her mother and that she was thrust into having to care for her.
Isn’t that the way it so often happens? Rarely do we have the time we need to take care of all the things we need to do when our parent or spouse suddently takes a turn for the worse and needs immediate care. No, I’m not talking about emergency care – for that you call 911, try to stabilize the patient, and stay out of the way of the medical professionals.
I’m talking about the all too common experience of your loved one needing to be cared for immediately. I’m talking about the time your mother is taken to the hospital, will spend a few days there, and will get released with one or two days notice. It’s about the time your father falls (and can’t get up) and you or your mother find him on the floor. For neither of these is there a life-threatening issue. But you, as the likely primary caregiver, are faced with the immediacy of making sure nothing happens to him that would be life threatening.
As my colleague explained when dealing with her mother's situation, she felt overwhelmed. That’s exactly what happens. And that’s what I want to talk about in this blog.
How it comes about doesn’t matter that much. The point is that very often with aging parents you are faced with a reality you’ve not faced before. And you don't have a lot of time to make all the necessary arrangements.
Here are a few things you need to do right now, before you’re thrust into making major decisions, whether they’re about your parent, your spouse, or even yourself.
1. Have the talk. Know what you need to know before anything happens. That includes knowledge of the person’s business affairs (accounts, insurance, etc.) as well as his or her wishes regarding care.
2. Get your legal affairs in order. Make sure you or someone has access to bank accounts and such. Most important, be certain there is someone with the legal authority to make decisions on the caregivee’s behalf. That is especially critical if there are no blood relatives or a recognized spouse.
3. Know how you’ll share the burden. Have all the parties lined up who are the key players and be sure you have a way to communicate with each. And know how you’ll split up the work. Long distance caregiving has challenges, but can be done, especially if there is a caregiver who can handle the onsite responsibilities.
4. Talk with the person you’ll be caring for. Be totally transparent in everything you do. Do not make decisions for someone but rather, with someone (as long as there is no issue about compentence). If you disagree with the person’s wishes, you can say so. But do not attempt to overrule someone’s wishes. Remember, always, that you are dealing with an adult, not with a child. Adults have the right to make their own decisions even if you disagree with those decisions. You’ll want the same right when your times comes.
Plannning ahead for situations like these can be lifesavers – literally. In addition, it can save a mountain of angst for you and your family. Small steps you can take now will prevent the giant fall.
You can read more about these ideas in my book, How to Care for Your Aging Parent (formerly called Baby Boomer’s Guide to Caring for Your Aging Parents) available on Amazon.com and BN.com.
As the election draws nearer, I would be remiss if I didn’t blog about how the presidential candidates’ positions might affect elder care, health issues (including health care and health insurance), and quality of life concerns of older folks. Because of the magnitude of this issue, I will have separate installments on the topic.
I begin with Obamacare.
First let me say that while the President doesn’t mind that the Affordable Health Care Act is referred to as Obamacare, I mind. I think it’s a total misnomer. The Act does not have that much to do with health CARE. It has to do mostly with health INSURANCE. I think the President and the supporters of the Act did a great disservice to all of us by suggesting it was about healthcare. It riled people. It scared them. All of a sudden people were feeling that there would be something – in particular, government – between them and their doctors.
But when you look at the Act, it doesn’t have anything between them and their doctors. It does create a Board that can suggest, recommend, and maybe even ultimately insist (if legislation followed) that certain things be done to streamline healthcare or that costs of drugs and medical care be reduced. But there’s nothing that will prevent an individual doctor from recommending a particular procedure for a patient. In fact, it’s not any different than what exists now under most health insurance plans. Many plans require preauthorization for certain procedures – things like MRI’s, PET scans, etc.. That won’t change under the new law. And if it did, it would be universal, not specific to one plan. Right now individual companies contract with health insurance companies to provide coverage for their employees. The companies negotiate rates and terms and companies try to get as much coverage – and more important, as much flexibility in the plan – for the money. A lot of what we used to have has changed, mostly increased in cost. But not all. Here’s an example of a way that a company improved the options for employees.
A company I’m familiar with offered 2 health insurance plans: one for just an individual employee and another for an employee and his/her family. The rates reflected the difference. But the family plan was geared for families with children, who are notoriously more sick and injured than adults. The organization negotiated with the insurance company to provide a third plan: employee and spouse/partner. Because the plan covered only two people, the rates were far lower for this couple than for an entire family.
Since the new Affordable Healthcare Act has many good provisions (e.g. covering kids ‘til they’re 26, no elimination based on preexisting condition), what’s the downside? That now everyone has to be a part of it? Hello? Is there something wrong with that? It’s just good policy for a country. The only way it can be affordable is with healthy people participating. Ergo, the individual mandate. For me, the Act protects everyone, not just those who have employers that provide health insurance. I never saw the logic in tying insurance to employment. Insurance, in particular health insurance, is about individuals and families, not about employers.
So back to the political arena. Since I believe this is a good law, and since the only candidate agreeing with me, my support goes to President Obama. Seniors, juniors, and everyone in between should be for this new law. Now if Governor Romney changes his mind (again) and decides that he really is for this law, I’d gladly revisit this endorsement. The whole law, after all, is one that he endorsed when he was governor of Massachusetts. But it’s not likely Mr. Romney will agree to be labeled with “I was for it before I was against it.”
Bottom line regarding health insurance and whether i: Obama. Stay tuned for my next political blog.
Please excuse the absence of a new blog. I've been working on my latest book and just didn't have the time to write anything else.
The new book will be out in February and it's a joint project between my publisher, John Wiley & Sons, and AARP. I'm very excited to do this book because I think it addresses something that many of us face, particularly those of us in the sandwich generation. Although my parents and in-laws are all gone now, it wasn't that long ago that we were dealing with their crises. The new book's title is long so as to maximize search engine optimization – you try to hit as many key words as possible so Google searches bring up your book. The title is AARP Roadmap for the Rest of Your Life with a subtitle of Smart Choices about Money, Work, Insurance, Lifestyle... and Pursuing Your Dreams. Whew, quite a handle. About the only thing we missed was sex. So maybe we should have called it the AARP Fifty Shades of Gray.
Anyway, as it implies, it's about living the rest of your life. We have our families to deal with, our kids and parents. We have our careers, perhaps winding down. We face retirement concerns that include money, leisure time, and choices. We have our insurance issues with many of us on or about to be on Medicare. And we have the concerns about aging and health.
The whole project began when I participated in a panel discussion sponsored by AARP. The author Gail Sheehy talked about how she and her husband had faced serious health problems and, in fact, signed up for palliative care. The doctor came to them and asked her husband, who clearly had significant mobility limitations and other health problems, "What are your goals for this stage in life?" I thought, "Wow, what a great question." I didn't have an answer for that and I'm not facing end of life issues.
So the book also addresses goals, role models, and questions we are now or will be asking ourselves as we get older. It deals with the very practical areas we have to face as we age, including our finances and signing up for Social Security and Medicare. I guess the most important message I relate in the book is to not judge aging. We are who we are and getting older is not something to fight or shy away from. As the old joke says about getting older, "it sure beats the alternative."
In the book I create a Level of Activity scale, something that you can use to help guide you (or your aging parents). Where you are on the scale, much more than your chronological age, will likely have more influence on your choices than anything else.
So please watch for my new book and watch this space where I will continue to blog about important issues.
Thanks for reading and please post your comments and questions.
We all know of senior citizens who play ball, ski, run marathons, and work out religiously well into their 80’s. We tell them they don’t “act their age.” But of course, they do. They are 70 or 80 years of age but have managed to stay very active and are in great shape. They laugh – disdainfully actually – when you tell them “they don’t look 80.” That’s because they don’t have any sense of chronology. Through good genes, some luck, a lot of hard work, and great motivation they do what they love. Similarly, many of these people often continue to work in their chosen field well past what anyone would call a retirement age.
At the same time, there are many others who, for whatever reason, cannot play sports or do the same kinds of activity even if they wanted to do so. They may have health problems, injuries, or other limitations. They may be equally motivated and live a normal life despite these limitations. They also just may not enjoy physical exercise or exertion and prefer a more sedate life. Some may be disabled and have been for some time so they’ve chosen a different path for themselves, one that allows them to do the things they enjoy without physical restraints.
So when we are speaking with our aging parents one of the key factors to consider is the degree to which they want to and can be active. Then you can help them reach that level. Come to think of it, when we're thinking ourselves about how we plan to live the rest of our lives, this might be a pretty good way to view it.
A friend of mine, a polio victim, spends a lot of his time in a wheelchair. He’s comfortable with his situation now, but only after having gone through much depression and angst. He still walks short distances using crutches. Another friend has walked with canes for most of her adult life after suffering an auto accident in which she broke her back. She struggled and struggled and through grit and determination, stayed out of a wheelchair for as long as she could, some 40 years after the accident. She now spends a lot of her time in a chair in order to get around more easily and without severe pain.
It’s alarming what both have told me about some of the differences they experience when they’re in their chairs versus on crutches or canes. And while I am certainly not comparing my injury- and rehab-time to their situation, I can totally understand when they complain about the people around them. I’ve been there and, as a result of back injuries, find myself at times unsteady on my feet.
It’s astounding how unconscious people are. I’ve been with these friends in crowds, or even when we are just maneuvering down a street. When they are using their crutches or canes, they are terrified about being around other people. They don’t have much balance to begin with so the slightest bump can send them reeling. I know because I’ve been next to them. When we’re walking together, I often feel like a blocking back opening a hole in the defense. I’ve practically smashed into people walking briskly right at us who seem to have absolutely no regard for who’s in front of them. And I’m not just talking about people on their cell phones.
I have seen people crash into us; I’ve seen people almost knock my friends over; I’ve seen people stop short or crashing and then, almost incredulously, give them an evil stare as if to say, “How dare you impede my forward progress!”
There are so many times that there are people in need, those with clear signs of difficulty like people using canes, crutches, and wheelchairs. But there are also those with an infirmity that no one notices who may need a little assistance. Seniors especially are vulnerable. Many have mobility issues, others don’t see or hear well. And their balance, even if they’re not using a cane or walker, is less stable.
Really, folks, we all need to slow down, look around, and be much more aware of those who might need a little assistance or move a bit more gingerly. It’s not asking much – I’m not even asking that you stop doing what you’re doing to help. Often there’s no help needed. Maybe just a bit more patience. I’m just sayin’.
For several weeks I tested a new device called the Sonamba, a unique home monitoring system for caregivers. The system, built by Pomdevices, is designed to “keep seniors safe at home by keeping track of their daily activity, medication routines and appointments.” At first glance I would say that the system is everything it’s cracked up to be. As a boomer who went through the whole eldercare process with both my parents and inlaws, and as the author of the Baby Boomer’s Guide to Caring for Aging Parents, I can say that I wish this system was available years ago. I encourage those whose parents are living independently to investigate whether the Sonamba is right for you.
Pomdevices calls the Sonamba a “Wellbeing Monitoring System for seniors living independently.” Any unit claiming to be used for this purpose must be multi-purpose, and indeed, Sonamba is just that. At its basic level, it serves as a Personal Emergency Response system, complete with panic button that upon activation alerts caregivers and 911 via cellular connectivity. The button can be worn around the neck or on the wrist. It can also be mounted on a wall if appropriate. Multiple units that are all coordinated can be placed in different rooms for those seniors who have greater mobility and often move around their house.
But Sonamba is much more than an emergency response system and, in fact, is a device that many of our parents can use. It serves as a medication and appointment reminder that the senior or the caregiver can easily program directly on the unit or remotely by computer. These reminders can include the specifics about upcoming appointments and which medications need to be taken and when. As an electronic reminder it can replace all those notebooks, calendars, and lists so many of our parents have. In my testing I programmed a few appointments and different meds, some to be taken just once a day, others multiple times. And each med was to be taken at different hours. As each designated hour came, the unit alerted me with a “ding” that was sufficiently loud and distinct for me to hear it in another room. I was even able to hear it on another floor of my townhouse. The face of the unit showed the reminder on screen and listed which medication I needed to take, as well as how many pills if I chose to enter that information. The alert chimed every minute and if I did not take the medication (or rather, if I did not clear the alert), my caregiver would be notified, prompting a follow up. Since caregivers can check in on the unit remotely, my caregiver could also know when doctor appointments are scheduled and when medicine regimens change. One suggestion I had for the manufacturer was to provide a flashing light, not just a sound and a screen display. Many seniors are hard of hearing so a distinctive and highly visual cue is important. The manufacturer is looking at ways to include that functionality in their next version.
There are other excellent features of the Sonamba that are quite important, some of which are unique to this system. The system periodically sends status alerts to caregivers telling them whether all is well or that the built-in sensor noted unusual levels of activity in the coverage area. This level can be too much or too little, based on how much activity existed during a learning period of approximately one week. When I went out I simply pressed the “Away” button so the unit knew not to expect any activity. And when I returned I pressed the “Home” button to restart the monitoring.
The unit is extremely user-friendly and allowed me to type in brief messages to the caregivers I designated in the system. The unit has a touchscreen interface that works well using either my fingers or a separate stylus.
Physically, the unit looks very much like a desktop electronic photo frame and indeed, when the system is not operating as a monitor it shows a rotating photo album. I easily uploaded several of my personal pictures from my computer so having the unit on a table was a nice addition to the room.
As PomDevices says, the Sonamba is “designed to be a part of everyday living — empowering seniors as well as their caregivers to live life on their own terms.” I can easily see this device in our parents’ homes, allowing us as caregivers to know that meds are being taken correctly and that in an emergency we — and the paramedics — will be notified.