MedWorm.com provides a medical RSS filtering service. Over 5000 RSS medical sources are combined and output via different filters. This feed contains the latest items from the 'Caregiver Notes' source. Sat, 16 Aug 2008 14:40:23 +0100 http://blog.healthtalk.com/caregiver/jeff/farewell-caregivers/ I am sad to say, I am hanging up my blogger hat after 18 months to make way for some fresh perspective for another caregiver. I have really enjoyed sharing my views and experiences caring for Pops with the HealthTalk audience during these past months, but it’s time to relinquish the forum to some of the other caregiver voices out there. There is a near-infinite variety of caregiver situations and mine and Pops’s is just one, and frankly I have pretty much exhausted what I have to say. In fact, when I looked back on my 18 months of blog entries, I can’t help notice some of them are remarkably similar. I guess I shouldn’t be surprised. One of the singular aspects of caregiving is you find yourself doing a lot of the same stuff over and over again. From a personal standpoint, I think one of the positive things that came out of writing this blog was that it prodded me to be a better – or at least a more considered – caregiver. I thought about caregiving situations more because I knew I would be writing about them. There’s nothing like having to put things into words to clarify your thinking. You can still be wrong, but not by mistake, if you catch my meaning. Current status: I am happy to report that Pops remains in reasonably good health and in remarkably good spirits for 91. But then Pops has a strong will and a humorous nature and he has never let the externalities of life dictate his mood. As he told me many years ago, “you live your life inside your head.” It’s something to ponder when times are hard (or even when they are good for that matter). Anyhow, after today, I am going back to anonymous caregiving. I will be passing the blogging torch to Meridith Bjork, from Connecticut, and I will leave it to her to introduce herself and fill in the details of her caregiving situation. I will look forward to reading what she has to say (and maybe dropping a comment of my own from time to time). And I wish the very best to all the caregivers out there and, most of all, to the people they care for. Take care of yourself, all of you. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1635268 Fri, 18 Jul 2008 05:06:48 +0100 1635268 http://blog.healthtalk.com/caregiver/jeff/what-happens-when-a-caregiver-wants-to-retire/ In June, my wife Deb and I rented a cottage in Maine and enjoyed a short vacation. We took early morning walks on the beach with the dog, ate our fill of steamed clams and lobster, caught up on our reading under the beach umbrella and shopped at LL Bean. I also did a bit of kayaking in the estuaries and along the rocky coast. As always, we came away with faint suntans (thanks to SPF 30) and our familiar fantasy about moving up to Maine in retirement. Over dinner at the Oarweed restaurant, we even talked about it like it was a real prospect. But the vacation ended, and as always, reality set in, and we knew Maine would remain a fantasy for a while longer. One of the aspects of caring for an elderly parent, as I do for my father, is that when you consider a big life change, such as a move, you have to include them in the plan. Life spans being what they are, we had always assumed that by the time retirement was upon us, my father would be gone. Well, Pops turned 91 this year and despite two strokes, prostate cancer, diabetes and high blood pressure, he shows no sign of going anywhere. This retirement-life change dilemma is a common issue in caregiving, and in fact has occurred in our own family before. Some years ago, when my wife’s parents got to retirement age, they desperately wanted to escape the snows of New Hampshire for Florida. After anguishing over it for some time, they moved Deb’s 80-some-year-old maternal grandmother – who had lived in and hated Florida – into a New Hampshire senior residence and headed south. That worked okay for a year or two, but eventually we moved Deb’s grandmother to an apartment in our town, and Deb cared for her until she passed away – which turned out to be only six months or so later. Now retirement age is fast approaching for me and so is the realization that if we are ever going to live in Maine, we’d better get serious about it within the next few years. Either that, or recognize it for the idle fantasy that maybe it always has been. So, as I do every year after our Maine vacation, I am haunting the real estate Websites for coastal Maine. But now I am looking for the homes that have a mother-in-law apartment included. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1575677 Thu, 03 Jul 2008 18:52:01 +0100 1575677 http://blog.healthtalk.com/caregiver/jeff/an-early-fathers-day/ Because of a scheduled trip out of town next Sunday, we decided to celebrate Father’s Day a week early. So last Sunday my wife Deb and I took Pops down to Ulster Landing Park on the Hudson River where we barbecued spareribs and watched the boats go by. Pops always enjoys an afternoon at the river because that’s where he grew up, and it brings up a lot of old memories. For Father’s Day, I gave Pops the token gift of a couple of books I bought at a local library fair. One was a paperback of Master and Commander, a famous sea story by Patrick O’Brian, which I took Pops to see when it was in movie theaters a few years back. Pops likes sea stories, so I think he will like this. He also likes tales of 19th Century arctic exploration, and that’s what the other book is about. The title is, “The Terror,” by Dan Simmons, and it was an Amazon best seller. But it was kind of a risk, too, because it’s really a horror story that happens to be set against an 1845 arctic expedition. I am not aware that Pops likes the horror genre, but we’ll see. It wouldn’t be the first time a gift of mine has been a flop . Actually, Pops’ current reading tastes are a mystery to me. He reads a lot and his apartment is full of books, but they are just the popular titles that people read and then give to him. He reads many of them, but I can’t believe he would ever pick them out himself to read. The only books he has around that are actually books of his own include the works of Shakespeare, an old taped together book of poems by Rudyard Kipling and stuff like that. It was hot and breezy at the river. The cottonwoods were in seed and the white seed puffs drifted by us like fat snowflakes. You had to be watchful and wave them away from your plate. I served the sizzling ribs, and before we dug in, we all raised our paper cups of ice tea in a toast to fatherhood and family. Pops looked out at the river and began a story about when they built the Bear Mountain Bridge in the early 1920’s near where he lived in Tomkins Cove, and how it was the first Hudson River bridge south of Albany and the longest suspension bridge in the world at the time. I wonder if there’s a book out about the Bear Mountain Bridge? Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1516915 Fri, 13 Jun 2008 17:14:46 +0100 1516915 http://blog.healthtalk.com/caregiver/jeff/another-caregiver-role-recording-family-histories/ Over the years, my 91-year-old father has recounted quite a few interesting stories of family history and his life. I thought they were worth preserving, and I knew I wouldn’t be able to remember and recount them accurately – so about 10 years ago, with the help of my daughter Amanda, I set about recording them. I bought Pops a little cassette recorder, showed him how to use it, and then told him to just sit down and talk into the tape recorder whenever the mood struck him. With Pops, the best stories have always rolled off his tongue without prompting. An interviewer is extraneous, unnecessary and a positive hindrance. Every week or so, I would get the full cassette from him and give him another blank one. Amanda helped by transcribing the tapes on the computer. Eventually we had an accordion folder labeled “Pops Speaks” stuffed full of tape cassettes and transcribed stories. As with just about everything else, there’s now a Web site to complicate this process. It’s sponsored by a not-for-profit organization called Project StoryKeeper (storykeeper.org). The organization offers “storykeeper” training via downloadable video modules and one-year access to something called the Legacy Vault in the Treasury of Family Heritage (I assume it’s an online repository for family histories). There is a required $65 donation for individuals to access these resources, and you also can spend up to $29 to buy a “StoryKeeper Kit.” Each kit includes a list of sample interview questions, recording media (CD or cassette) and a 22-page instruction booklet. Hmm, seems a little pricey to me. I recommend you get a cheap tape recorder and improvise. If you’re lucky, you may be able to get a story like the one below, about Pops and some of the other boys at Congers School who ran trap lines and sold animal pelts to help their families make ends meet during the Depression: “When you went to school in the morning you could always tell who caught a skunk because if they caught a skunk they’d have to knock it over the head and take it home and skin it, and there was no way you could get rid of the stench. So you’d go to school and the teacher would come in, and she’d sniff the air and say, ‘Which one of you boys is going to be sitting by the window today?’ They didn’t get bent out of shape because you come in smelling like a skunk, they knew what the story was. So they’d put you by the window and they’d leave the window open a crack and let you blow the odor to the outside world.” It would be a shame if stories like this were lost to posterity. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1494643 Wed, 04 Jun 2008 01:14:27 +0100 1494643 http://blog.healthtalk.com/caregiver/jeff/not-another-inspirational-book-for-caregivers/ There’s quite a literature growing up around caregiving these days. One of the latest and best entries is a compilation of caregiving essays titled, for some obscure reason, An “Uncertain Inheritance: Writers on Caring for Family.” I picked it off the shelf at the local library, and I am not done reading it yet, but I’m going to go ahead and recommend it, particularly to caregivers who may be operating “in a vacuum.” By that I mean, they do not belong to a caregiver support group, or know other caregivers or even subscribe to a caregiver listserv, and therefore, they don’t have anyone with whom to share their caregiving experiences and emotions. For such people, An “Uncertain Inheritance” provides the welcome reassurance that they are not the only caregivers who have not been compassionate enough, who have not been informed enough, who have not been proactive enough and who are basically screw-ups. I have read quite a few articles but admittedly few books about caregiving. I have scanned the literature and it tends to be too “inspirational” for my tastes. Even when acknowledging the burdens of caregiving, the tone is one of strength and selflessness in adversity. This is distinctly different from the tone I see in, for example, in the caregiver listserv I belong to where everybody is fraught, overwhelmed, resentful and madly propping each other up. The essays in this book are more like the listserv. One of the authors complains at how sweet her husband was before he got ill and how rude he is now. In another essay, the caregiver frankly admits what a distracted and inconstant caregiver he was, and even more heart-breakingly, how he regrets that he was not “there” for his mother before she was ill. There is even comedy at the deathbed. A woman writes about witnessing her father’s last minutes when he is gasping horribly (“When are you going to die already?”). Then his breathing stops, his eyes roll back in his head and the room is still. The anguished family members hug each other in grief and relief that the ordeal is over: “There was a strange, weird energy in the room, like when you’ve finished a race or exams are over.” The woman reaches over and closes her father’s eyes. “Five minutes must have gone by and then out of nowhere, we heard him take a huge breath. My father not dead, my father breathing. . . I wanted to kill myself for closing his eyes.” An “Uncertain Inheritance” published by William Morrow Company, 2007. Definitely not inspiring. Oddly comforting. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1464296 Thu, 22 May 2008 22:10:39 +0100 1464296 http://blog.healthtalk.com/caregiver/jeff/caregivers-short-changed-around-the-world/ Recently, I rented Michael Moore’s film “Sicko” about the sad state of the U.S. healthcare system. The film was thought provoking, and I was particularly impressed by how some other countries handle healthcare for their people. Personally, I’ve always thought healthcare should fall into the same category as road building and electric power generation. These are things people cannot afford to do for themselves individually and so we provide these services communally through government and utilities. It should be the same with healthcare. If you have a serious illness, your expenses can quickly mount beyond your means. One recent study found that 55 percent of U.S. bankruptcies were related to medical illness or expenses, and these statistics included people with health insurance. I personally know several families brought to near financial ruin by healthcare expenses. Sicko featured segments on national healthcare systems in Canada, England and France, among others. And, even allowing for Moore’s soft focus on the imperfections of these nationalized systems, they looked a lot more enlightened than our devil-take-the-hindmost approach (the “hindmost” in the United States being the more than 45 million medically uninsured). Anyway, it got me wondering how the European countries support their caregivers – or “carers” as they are called over there. I did a little research expecting to find that European carers can call on all kinds of government programs and support. Guess what? Carers in Europe don’t seem to be much better off then caregivers in the United States. Here are some bullet points from a recent survey of 23 European countries conducted by The EUROFAMCARE consortium, a group studying the plight of people caring for their elderly and infirm family members: Among European carers, on average: •92 percent need help with domestic care services •89 percent need help with emotional, psychological and social needs, including respite •82 percent need help with mobility and transportation •79 percent need help with medications, medical treatment, rehabilitation and therapy •66 percent need help with their loved one’s physical/personal care needs: e.g. washing, dressing, eating or going to the toilet Other significant findings: •Carers spent an average 45.6 hours per week providing care •Only 4 percent of carers received government financial assistance, and 37 percent of the elderly they cared for got such assistance. There were large cross-national variations in coverage, with 60 percent receiving assistance in socialist Denmark and only 2 percent in Greece. (At least some countries offer financial assistance.) •Fifteen percent of working carers had reduced their work hours and had a decline in income. Five percent of carers stopped working altogether. Meanwhile, in the Unites States, the Lifespan Care Respite Act, which passed with great fanfare in 2006, has yet to be funded (maybe in 2009), and 24 bills introduced in Congress in 2007 to help caregivers have yet to be acted on. It’s a small world after all, and caregivers remain pretty much neglected wherever you go. Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1446540 Fri, 16 May 2008 03:29:58 +0100 1446540 http://blog.healthtalk.com/caregiver/jeff/caregivers-short-changed-around-the-world/ Recently, I rented Michael Moore’s film “Sicko” about the sad state of the U.S. healthcare system. The film was thought provoking, and I was particularly impressed by how some other countries handle healthcare for their people. Personally, I’ve always thought healthcare should fall into the same category as road building and electric power generation. These are things people cannot afford to do for themselves individually and so we provide these services communally through government and utilities. It should be the same with healthcare. If you have a serious illness, your expenses can quickly mount beyond your means. One recent study found that 55 percent of U.S. bankruptcies were related to medical illness or expenses, and these statistics included people with health insurance. I personally know several families brought to near financial ruin by healthcare expenses. Sicko featured segments on national healthcare systems in Canada, England and France, among others. And, even allowing for Moore’s soft focus on the imperfections of these nationalized systems, they looked a lot more enlightened than our devil-take-the-hindmost approach (the “hindmost” in the U.S. being the more than 45 million medically uninsured). Anyway, it got me wondering how the European countries support their caregivers – or “carers” as they are called over there. I did a little research expecting to find that European carers can call on all kinds of government programs and support. Guess what? Carers in Europe don’t seem to be much better off then caregivers in the U.S. Here are some bullet points from a recent survey of 23 European countries conducted by The EUROFAMCARE consortium, a group studying the plight of people caring for their elderly and infirm family members: Among European carers, on average: •92 percent need help with domestic care services. •89 percent need help with emotional, psychologic and social needs, including respite. •82 percent need help with mobility and transportation •79 percent need help with medications, medical treatment, rehabilitation, and therapy. •66 percent need help with their loved one’s physical/personal care needs: e.g. washing, dressing, eating or going to the toilet Other significant findings: •Carers spent an average 45.6 hours per week providing care •Only four percent of carers received government financial assistance, and 37 percent of the elderly they cared for got such assistance. There were large cross-national variations in coverage with 60 percent receiving assistance in socialist Denmark and only 2 percent in Greece. (At least some countries offer financial assistance.) •Fifteen percent of working carers had reduced their work hours and had a decline in income. Five percent of carers stopped working altogether. Meanwhile, in the U.S., the Lifespan Care Respite Act , which passed with great fanfare in 2006, has yet to be funded (maybe in 2009), and 24 bills introduced in Congress in 2007 to help caregivers have yet to be acted on. It’s a small world after all, and caregivers remain pretty much neglected wherever you go. Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1440095 Tue, 13 May 2008 23:15:48 +0100 1440095 http://blog.healthtalk.com/caregiver/jeff/pops-turns-91-and-we-go-golfing/ My father had his 91st birthday on Saturday, and I took him to the driving range as a kind of birthday outing. I was a little anxious about how he would do (he has a bad left knee), but he used to be an avid golfer, and it’s something he had mentioned that he wanted to, so if he was game, I was too. When I picked him up at The Mill, the senior residence where he lives, Pops had on a new pink T-shirt that his friends there had given him the night before at a small birthday party. “You’re only as old as you remember you are,” the T-shirt read. So in that spirit, Pops and I went to a nearby driving range and each got a bucket of balls. Unexpectedly, it had turned into a beautiful day despite predictions of rain, so we teed up under blue skies and began happily whaling away at the golf balls. Pops clearly enjoyed swinging the club, even though the ball sometimes shot off the tee at an odd angle or dribbled off and rolled to a stop 20 feet away. Afterwards, he admitted he was pretty rusty and that his weak left knee did hamper his swing. “I have to get back to back to basics and hit it easy,” Pops said. I should mention that I have never played golf. It showed. I drove the ball every which way but straight and once took a mighty swing and left the ball sitting unharmed on the tee. But a couple of times, by sheer luck, I really connected, and the ball took off in that rising trajectory that you see on TV and came down out past the 200 yard marker. It felt pretty good. Pops did a lot better with the chipping iron, and was arcing them into the vicinity of the practice flag pretty well. I seemed to have no control over the direction the ball would go. Eventually, we ran out of golf balls. After the golf, we picked up my wife, Deb, and we all went to lunch at a new ribs place near the Mill called “Sticky Fingers”. Ribs are Pops’s favorite food and he was pleased that he could get them so close to home. While we ate, we gave Pops our birthday present, which was a handsome wooden box of imported smoked salmon (next to ribs, his second favorite food – or maybe it’s the other way around). Pops and I both had fun, and I promised Pops we’d go out to the driving range again soon. He said he hopes to get his game back in shape so he can go out golfing with one of the other old duffers he knows at the Mill. He may be 91, but if it can be done, he’ll do it (his T-shirt is true). Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1416549 Fri, 02 May 2008 19:25:43 +0100 1416549 http://blog.healthtalk.com/caregiver/jeff/dropping-the-ball-on-glucose-testing/ I guess one of the things I haven’t been particularly good at in my caregiver duties for Pops is making sure he tests his blood glucose regularly. Whenever I ask if he’s testing, he says he tests “once a week or so”, and – because his blood sugar has been under control for so long – I’ve been letting it go at that. Pops was diagnosed with type 2 diabetes a number of years ago, long before 2005 when I became so involved in monitoring his healthcare. Back in the beginning, I know he was pretty diligent about checking his blood glucose daily (as recommended) and, with the help of medication and some diet changes, he quickly got his diabetes under control. In 2006, I know he was still testing because I bought him a new Ascensia Contour glucose meter and we went over the testing procedure a bunch of times and I watched him test himself and then followed up with him for weeks after. But sometime over the many months between then and now, he seems to have gotten out of the habit of testing, and I got out of the habit of asking if he tested. I finally figured this out at the last doctor appointment when Dr. H. asked Pops what his blood sugar is running. Pops was kind of vague about it, and I could tell he was faking. Afterwards, when I asked him if he was testing regularly he hemmed and hawed, and then he said he was out of test strips. So today, when I was at his apartment I got the glucose meter case down from the shelf and looked in it and there were test strips galore in there, and he admitted he has been letting it slide for a few months. Fortunately, I know Pops’s blood sugar is under control at the moment because he recently had a panel of blood tests at the lab ordered by Dr. H., including a glucose test, and that came out okay. And I know he takes his glyburide 1.25 mg tablet daily because the pills keep disappearing out of the pillbox. But now I guess I’ll have to make sure he really does test his blood sugar, too. I’ll resort to that tried and true caregiver technique of nagging. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1396458 Thu, 24 Apr 2008 18:47:39 +0100 1396458 http://blog.healthtalk.com/caregiver/jeff/living-to-100/ My father turns 91 later this month, which is really getting up there. And despite a couple of strokes in 2005 and 2006 and a handful of other asymptomatic chronic conditions, he is, to all appearances, doing pretty well. The only thing that gives him any real trouble is a bad knee that he has to favor. So I was wondering the other day just how far Pops might make it past 91. (After all, he still has an older brother, Bill , who’s 94 or so.) The question led me to a recent HealthTalk Live program on living long (“How to Live to 100 with a Chronic Disease“) . The program consisted of an interview with Dr. Thomas T. Perls, a geriatrician who is director of Boston University’s New England Centenarian Study, which for the past dozen years or so has been studying people who top 100 years of age. The interview taught me some interesting facts about reaching extreme old age – and touched on some stuff pretty close to home for my father! One of the things that surprised me was that you don’t have to be one of those “never-sick-a-day-in-my-life” supermen to live to be very old. Dr. Perls said that many of the centenarians they have studied had faced serious disease, including cancer and heart attack. Also, many (40 percent) had chronic diseases, like high blood pressure or diabetes. The factor that’s important, he said, is the resilience of these people – their ability to come back from an illness. This idea of resilience immediately made me think of my father who was so knocked back by that last stroke in 2006 he couldn’t even walk or talk. Now, he is largely recovered and you have to know him pretty well to recognize any after effects of that stroke. Dr. Perls said simply getting to very old age (upper 80s or so) seems to be about “30 percent genes” and the rest is environment and lifestyle (diet, personal habits, stress, etc.). He said fortuitous genes really emerge as they key factor as you push for triple digits. As an example, he cited certain populations that have a higher number of centenarians than normal, for example, the Acadians of Nova Scotia, the Canadian province that juts into the Atlantic north and east of Maine. Their exceptional longevity might be due, he said, to a “founder effect”, which in this case would be the preservation of a rare genetic tendency to longevity because of – to choose a word with a usually negative connotation – inbreeding. Well, as it happens, my father is from Acadian stock. His father, Herbert Muise, came to the U.S. from Nova Scotia in 1897. So I Googled “Nova Scotia centenarians” and soon came up with a 2003 article in Smithsonian magazine in which they interviewed a 103-year-old woman by the name of Delima D’Entremont from Yarmouth, NS. There is a particular cluster of centenarians in the Yarmouth area, the article said. Herbert Muise, indeed, came from the fishing and shipbuilding village of Tusket just outside Yarmouth. And it bears mentioning that all the Muises come from the same gene pool as the d’Entremonts. (I’ve done a bit of genealogical research on this, and there is an interesting story about how the Muis-d’Entremont family split their surname in 1699 after one sibling in the family took a Native American wife). My grandfather Herbert only lived into his 70’s, but that doesn’t mean there can’t be a gene for extreme longevity rattling around somewhere in my father’s genotype. He might have a few more birthdays to look forward to yet. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1361280 Wed, 09 Apr 2008 22:01:32 +0100 1361280 http://blog.healthtalk.com/caregiver/jeff/the-grim-numbers-around-alzheimers-disease-and-caregiving/ You may have noted the 2008 Alzheimer’s Disease Facts and Figures report that was released last week by the Alzheimer’s Association. Most of the news organizations that covered the report focused in on the shocking statistic on the cover: “10 million U.S. baby boomers will develop Alzheimer’s disease.” So, as usual, the Baby Boomers were the center of the story in the Boomer-dominated media, but I was more interested in some of the facts buried inside the report related to caregiving for someone with Alzheimer’s. I’ve always thought that in many ways Alzheimer’s disease is the worst-case scenario of caregiving. In severe cases, people with Alzheimer’s may need bathing, dressing, feeding and constant watching by their caregiver. They may have challenging behavioral problems, such as wandering or unpredictable emotional outbursts. For their caregivers, the burden can be completely overwhelming, taking up huge amounts of time and effort, frustrating career goals, reducing income, and sapping their health and spirit. Then there is the mounting grief as they watch their loved one’s personality gradually be effaced by the disease. Some of the report highlights (if that’s the word): • More than 40 percent of family and other unpaid caregivers of people with Alzheimer’s disease and other dementias rate the emotional stress of caregiving as high or very high. • About one-third of family caregivers of people with Alzheimer’s and other dementias have symptoms of depression. • Family and other unpaid caregivers of people with Alzheimer’s are more likely than non-caregivers to have high levels of stress hormones, reduced immune function, slow wound healing, new hypertension and new coronary heart disease. • Among AD caregivers who held jobs, two-thirds said they had to go in late, leave early or take time off because of caregiving, 18 percent had to take a leave of absence, 13 percent had reduced their hours and 8 percent had turned down promotions. Eight percent of caregivers in the study had to quit work entirely because of caregiving. • The slow progression of Alzheimer’s means most caregivers spend many years in the caregiving role. Some 32 percent of unpaid caregivers have been providing care for five years or longer, and 39 percent have been providing care for one to four years. These last two points struck me as particularly sad: • As Alzheimer’s nears the end stage (a year before death), caregivers in 2007 spent at least 46 hours a week assisting the person and 59 percent felt that they were “on duty” 24 hours a day. Not surprisingly, 72 percent said they experienced relief when their loved one died. • Caregivers of people hospitalized for Alzheimer’s were more likely than caregivers of people hospitalized for other diseases to die in the year following the death of their loved one with AD (even adjusting for age). If we are great country—and I think we are—we should move two problems to the top of our national list of priorities. First, we need a healthcare system that doesn’t leave a sixth of our population exposed and helpless in the face of illness, and right behind that, we need some kind of public support for our poor, beleaguered caregivers. Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1349932 Fri, 04 Apr 2008 17:01:17 +0100 1349932 http://blog.healthtalk.com/caregiver/jeff/an-easter-reminiscence-about-my-mother/ On Easter Sunday, I brought Pops over to our house for an Easter brunch. Both of the daughters were home (Amanda from Norwalk, CT, and Molly on spring break from college) so it was a good time for reunions and family reminiscences. I had been thinking of my mother, Dorothy, and while we were eating our French toast I reminded my father that the twentieth anniversary of her passing away is coming up March 29. My father doesn’t talk about my mother very often. It’s not because he has forgotten her, I am sure, but because he doesn’t like to dwell on loss. Of course there are plenty of fond memories to bring to mind, too, so I broke out an old photo album with pictures of Mom, Pops and their friends and family going back to the 1930’s. There was a photo of Mom as a teenage girl, one of her in jodhpurs (she used to horseback ride), one of her dressed for church with a stylish hat tipped rakishly and white gloves, and other scenes spanning the decades. I appear in some of them, first in black-and-white and later in color. I think the picture I have attached to this blog captures my mother the best, at least when you hear the story that goes with it. It dates back to 1956 when we built a summer cabin in a rural town called Sundown in the Catskill Mountains. We were building a fireplace on the cabin and, as the story goes, the guy who had delivered the cinderblocks unloaded them too far from where we needed them, so the cinderblocks all had to be carried the 50 feet or so to where the fireplace was going. My father remembers telling my mother that the cinderblocks were too heavy for her to carry and to leave them for him to move. Mom and Dad near the cabin in the Catskills Perhaps he is actually saying those words when this photo was snapped. It looks like he might have been. “All I had to tell your mother was that she couldn’t move the cinderblocks, and you can damn well bet that some cinderblocks were going to be moved,” Pops recalled. Indeed, Mom moved all the cinderblocks when my father was away fishing or something. By coincidence, the man in the distant background of the photo is Doc Williams, who was an osteopath who had a summer cabin up the road. I don’t recall that Mom needed his services that day, though I remember she was very, very sore from the strenuous job. She was a very hard-working woman, my mother, and she and my father and mother went on to restore and renovate many houses in the 1960’s and 1970’s. That cabin in Sundown was a big part of our family life throughout my childhood, and I recall it fondly to this day. The cabin is still there – sort of. Several years after my parents sold it (1964 or 1965, I’d guess) it came into the hands of the actor Judd Hirsch (of Taxi fame), and he built a huge contemporary-style addition that kind of wrapped around and engulfed the original modest 20- by 24-foot cabin. Pops didn’t say too much about the photos in the album, but he spent a good long time quietly looking at them Sunday, and I think I can guess what he was thinking. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1327636 Tue, 25 Mar 2008 21:57:20 +0100 1327636 http://blog.healthtalk.com/caregiver/jeff/pops-and-paperwork/ I don’t know when the last time Pops filed a tax return was – a dozen years ago or longer, but now he says he wants to file one for 2007 to get the $300 payment from the federal government under the recent stimulus package. The only problem is Pops didn’t keep any of his 1099 income statements when they came in the mail. In addition to Social Security, he receives small pensions from his old carpenter’s union and from the state from when he was superintendent of buildings and grounds for a local school system. He needs these forms to file his taxes. Pops blames the cleaning lady for losing his income statements, but this is an old excuse he has used when he loses stuff that comes in the mail (before it was the cleaning lady it was my mother losing stuff). The fact is he is not a “paperwork” person. He just never has been good at keeping track of papers, even when he was much younger. Honestly, I don’t know where this stuff goes because all of the rest of his mail seems to pile up on his desk – Publisher’s Clearing House mailings, political newsletters, charity solicitations. It’s only the important stuff that seems to get lost. I blogged about this back in September when Pops had to provide income information to his drug plan carrier and couldn’t find any of his 2006 income statements. At the time, I thought maybe his stroke had left him unable to keep track of these things and I considered taking over his mail. But, you know, he does fine paying his bills and stuff that requires him to take some immediate action: Write a check, stick it in an envelope and mail it. It’s only the stuff that has to be put aside and saved that falls into a black hole. So, I went with Plan B, which was to give him an accordion folder marked “Save for Jeff” in big black letters. And he has been pretty good about sticking the various medical insurance statements and correspondence in there. Somehow, the 1099s didn’t make it into the Jeff envelope though. So last Monday morning I called the people at the carpenter’s union and state pension agency and had them send him new copies of the 1099. They came a couple of days later and Pops said he put them in the Jeff envelope right away. Tomorrow I am supposed to go over there and we can fill out the tax form together. Unless the cleaning lady strikes first. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1312522 Tue, 18 Mar 2008 22:41:16 +0100 1312522 http://blog.healthtalk.com/caregiver/jeff/caregivers-need-to-see-the-doctor-too/ If you are a reader of this blog you may remember my New Year’s resolution to get myself a medical checkup in 2008 . It had been quite a few years since my last, and I am getting to the age when anyone’s health begins to fray a bit around the edges. I already know I have asthma (pretty well controlled) and sinusitis that causes my nasal passages and ears to clog up from time to time. I also suspected my cholesterol was high—it always has been—but then everybody’s is high, including my 90-year-old father’s. Other than that, I have been feeling pretty good, and I didn’t expect any surprises. I saw Dr. H a couple weeks back and got the usual kneading, probing, blood tests, traces and scans. Not surprisingly, I had all the maladies I knew I had, but then I learned I had some others stuff that I needed to check out too. So now I am making the round of specialists, taking a first time med for my cholesterol and another new med for my asthma, as well beginning a regimen for my sinusitis that has me squirting stuff up my nose practically all day long. I’ve also added some supplements to my diet and eliminated a bunch of stuff I like (bacon, butter and cream in my coffee – you get the picture). As a caregiver, I am used to taking Pops to the doctor all the time and picking up his prescriptions and discussing his various conditions with various doctors. Now, I have to do the same thing for myself, and it feels a bit deflating. Soon, I fear, I’ll just be another guy on the wrong side of 60 with a medicine chest full of pills. I thought Pops had an interesting reaction when I told him about my checkup and the new meds. “Well, take care of yourself,” he said. “You have to be healthy for the both of us.” I guess that goes for you too, caregivers. So take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1298828 Wed, 12 Mar 2008 21:23:59 +0100 1298828 http://blog.healthtalk.com/caregiver/jeff/its-a-small-world/ I got an unexpected call last week from a man named Bill Kimbark who I don’t know personally, but who was a little kid who knew my father when he was a young man. The Kimbarks were neighbors of my father in the village of Congers, N.Y., back in the 1930’s and 1940’s. Bill’s son – if I got this right – had stumbled across this blog via Yahoo and told his father about it, and he called me up. Bill, who was 18 years younger than my father, recalled how the Muises and Kimbarks used to be fast friends and were in out of each other’s houses all the time in those years, almost like they were the same family. Bill’s much older brother Harold was a close friend and my father’s best man in 1940 when he married Dorothy Eleanor Smith, my mother. Pops and Harold were on the same amateur baseball team in those days, the Liberty AC, and Bill was the team water boy. Pops still reminisces about that team and about his friend Harold, who died a long time ago. At 72, Bill is actually closer to my age than my father’s so we also had some memories in common about attending Congers Elementary School, a stately two-story wood frame 1879 schoolhouse that was demolished in 1958. I still remember all the kids lining the sidewalk that day to watch our school get torn down by a big clamshell. I seem to remember cheering then, but it’s sad to remember now. To digress, there was a little candy store next door to the school called “Pantol’s”. The kids had worn a hard-packed dirt path between the school and that candy store, which was stuffed with licorice, jellybeans, those sugar-dots-on-paper and those little wax bottles with some kind of colored sugar drink inside. That store must have been responsible for a lot of cavities among the kids at Congers Elementary School. Anyway, Bill said his son plays the guitar and entertains at nursing homes. At one nursing home he got talking to an elderly lady who turned out to be Mrs. Pantol, the proprietress of the candy store. I forget where he said this happened, but it was somewhere far from Congers Elementary School, in both space and time. “It’s a small world,” Bill said. “And the Internet is making it smaller.” Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1278445 Tue, 04 Mar 2008 14:00:04 +0100 1278445 http://blog.healthtalk.com/caregiver/jeff/movie-the-savages-portrays-caregiving-with-all-its-warts/ The trailer of “The Savages” makes the movie look a lot funnier than it is. Even calling this movie a black comedy – as some reviewers do – doesn’t seem quite accurate. Even though there are some funny scenes, I’d have to say this is a pretty straight-ahead serious movie about caregiving. The movie focuses on the Savage siblings, a brother, Jon (Philip Seymour Hoffman) and sister, Wendy (Laura Linney), who suddenly are thrust into caregiver roles when their estranged elderly father Lenny Philip Bosco) begins to slip into dementia. These are all imperfect people. Both of the middle-aged siblings, the story makes clear, suffer from frustrations and disappointments in their own present-day lives as well as the residue of unhappy childhoods. Neither is married nor has a family. Both have career frustrations. Both have manifest personal faults. There are ill-concealed sibling rivalries. And sadly, neither the brother nor sister likes their unloving and ill-tempered father very much. It is interesting to see how these flawed siblings reengage with their father after so many years, and also how they relate to each as they take on the challenge of caregiving. The story takes a bittersweet turn when Wendy finds a collection of childhood photos of her and Jon in their neglectful father’s former home. She is moved that he saved them and seems to warm to the old man, fussing over his new room at the nursing home, and even trying to promote a move to a nicer home with landscaped grounds. Jon is the more detached, practical one, worrying about the cost and the proximity, and he accuses Wendy of letting her ego and sense of status get wrapped up in the choice of a nursing home. In one poignant scene, the siblings bitterly argue these points in the car as they take Lenny to an interview. The old man casts a sad sidelong glance, then furtively turns off his hearing aid. The movie made me think of the infinite variety of caregiving situations involving elderly parents, each laden with its own accumulated baggage of long ago family life, sibling resentments and loyalties, parental failings, personal difficulties and misguided motives. Every caregiving situation is fodder for a play by Eugene O’Neill or a Virginia Woolf novel. Anyway, for an intimate portrait of one family’s courageous and flawed attempt at caregiving (as they all are), I recommend “The Savages.” Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1243562 Wed, 20 Feb 2008 00:16:35 +0100 1243562 http://blog.healthtalk.com/caregiver/jeff/a-doctor-makes-a-house-call/ Anybody hear of a doctor making a house call any time in the last, oh, 30 years? No, I haven’t either. That’s what makes my father’s most recent experience with his urologist so unusual. I take my father to see Dr. C every four months for a checkup and to get a shot of Lupron for the prostate cancer he was diagnosed with a decade or so ago. My father has never had any symptoms of this cancer, and his PSA (prostate specific antigen) test has been “undetectable” for it for some time now, but he keeps on getting the shot. I guess Dr. C is playing it safe. Or maybe the shot is what’s keeping it asymptomatic. Anyway, we showed up at the office and Dr. C came out to the waiting room looking sheepish. He said he was sorry, but the shipment of Lupron had not arrived and he could not give Pops the shot. He said the Lupron is too costly to stock so they order it as needed and the order was placed too late. “We screwed up,” he said. “Not again!” I said. This happened once before last summer, so it was a little annoying – and I guess I sounded annoyed. “Yeah, again,” he said. “Well, do the regular exam and I guess we’ll have to come back again for the shot,” I said. Dr. C went back in the exam room with my father, but then came back to the waiting room a moment later and apologized again, and said he didn’t want us to have to come back again and that he would go to my father’s apartment on the weekend and give him the shot there. “I’ll make a house call. It will save you some gas money,” he said. I was surprised and thanked Dr. C for his generous offer. Then while he was with my father, I wrote the directions to The Mill down on a sheet of paper for him. So on Saturday, Dr. C showed up at my father’s door in his weekend clothes (“He looked like he was dressed to dig bait,” my father said) and gave him the shot in the living room bent over his easy chair (yes, it’s one of those posterior injections). The other good news from the office visit was that my father’s urine test didn’t show any trace of the bladder infection that he has had the last couple of visits. That means no more Ciprol antibiotic causing drug interactions with Pops’s Coumadin [warfarin]. Also, there is no need to consider a cystoscopy, which Dr. C would have suggested if the infection came back again. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1226875 Tue, 12 Feb 2008 23:26:30 +0100 1226875 http://blog.healthtalk.com/caregiver/jeff/wantedcaregiver-bloggers-with-stories-to-tell/ A wife caring for her elderly husband with Alzheimer’s disease, a widowed woman caring for her wheelchair-bound mother-in-law, a pair of working parents caring for their child with Crohn’s disease, a family pitching in joyfully, or a lone beleaguered caregiver grimly bearing a heavy burden. Caregiving comes in many shapes and colors, each its own unique blend of hard work and compassion, sadness and hope. Caregivers have many different stories to tell and lesson to impart. During the past year blogging about caregiving for my 90-year-old father, I have had my own awareness raised and have thought a lot about the challenges of caregiving, not just in my own and my father’s situation, but also those of other caregivers I know, have heard from or read about. I have often wanted to get some of those other stories into Caregiver Notes, and now and then in, a second-hand way, I have tried. But I think these stories are better told first-hand. That’s why I am extending an invitation to anyone who wants to tell his or her own caregiving story to become an additional blogger on the subject of caregiving. I am not talking about a one-shot blog, but an ongoing one, perhaps for an open-ended time, or perhaps for a period of months. In this way, we would all get to hear a variety of caregiver voices. How many? How long? I suppose these questions will be decided based on how many would-be bloggers step forward and how much they have to say. Ideally, I suppose I would like to see Caregiver Notes feature two or three new bloggers over the next year, so it could speak to more varied caregiver concerns and become a richer resource for caregivers. There are benefits to the blogger too. I think blogging has made me a more informed and thoughtful caregiver – and it has given me a forum to vent my frustration or share a funny story from time to time. My blogs and the occasional comments they draw also have made me feel less alone as a caregiver and reminded me to give thanks that I do not have the situations that some other caregivers have. For all of these reasons, I plan to keep blogging. So anybody interested in joining me? If so, direct your query to blog@healthtalk.com and put caregiver blog as the subject line. Natalie, the able editor for all the HealthTalk blogs, will be picking from among the candidates we get (and I hope to be involved too). You don’t have to be a professional writer to blog, just a caregiver with a point of view who is not shy about telling your story and who has the time and energy to write a couple of blogs each week. So who’s up for it? Natalie and I hope to be hearing from you. Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1212341 Wed, 06 Feb 2008 17:59:52 +0100 1212341 http://blog.healthtalk.com/caregiver/jeff/wantedcaregiver-bloggers-with-stories-to-tell/ A wife caring for her elderly husband with Alzheimer’s disease, a widowed woman caring for her wheelchair-bound mother-in-law, a pair of working parents caring for their child with Crohn’s disease, a family pitching in joyfully, or a lone beleaguered caregiver grimly bearing a heavy burden. Caregiving comes in many shapes and colors, each its own unique blend of hard work and compassion, sadness and hope. Caregivers have many different stories to tell and lesson to impart. During the past year blogging about caregiving for my 90-year-old father, I have had my own awareness raised and have thought a lot about the challenges of caregiving, not just in my own and my father’s situation, but also those of other caregivers I know, have heard from or read about. I have often wanted to get some of those other stories into Caregiver Notes, and now and then in, a second-hand way, I have tried. But I think these stories are better told first-hand. That’s why I am extending an invitation to anyone who wants to tell his or her own caregiving story to become an additional blogger on the subject of caregiving. I am not talking about a one-shot blog, but an ongoing one, perhaps for an open-ended time, or perhaps for a period of months. In this way, we would all get to hear a variety of caregiver voices. How many? How long? I suppose these questions will be decided based on how many would-be bloggers step forward and how much they have to say. Ideally, I suppose I would like to see Caregiver Notes feature two or three new bloggers over the next year so it could speak to more varied caregiver concerns and become a richer resource for caregivers. There are benefits to the blogger too. I think blogging has made me a more informed and thoughtful caregiver – and it has given me a forum to vent my frustration or share a funny story from time to time. My blogs and the occasional comments they draw also have made me feel less alone as a caregiver and reminded me to give thanks that I do not have the situations that some other caregivers have. For all of these reasons, I plan to keep blogging. So, anybody interested in joining me? If so, direct your query to blog@healthtalk.com and put caregiver blog as the subject line. Natalie, the able editor for all the HealthTalk blogs, will be picking from among the candidates we get (and I hope to be involved too). You don’t have to be a professional writer to blog, just a caregiver with a point-of view who is not shy about telling your story and who has the time and energy to write a couple of blogs each week. So, who’s up for it? Natalie and I hope to be hearing from you. Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1208234 Wed, 06 Feb 2008 06:48:32 +0100 1208234 http://blog.healthtalk.com/caregiver/jeff/a-caregiver-is-saddened-by-a-death-at-the-mill/ There was a recent death at the Mill where my 90-year-old father lives. Because it is an apartment house for senior citizens, there are deaths there from time to time. But this latest death was one of my father’s friends, and someone who I knew too. I did not know Don well, but I often saw him when I visited my father, and I knew him well enough to like him. Don was disabled and his legs were shrunken. He rode around the Mill on a motorized scooter with a big smile on his face. He was always ready to swap stories and jokes with my father, and was pretty smart, too. He played online poker and was said to be a consistent winner On a personal note, Don met my dog Gulliver once when I brought him along to visit my father and made a big fuss over him. Whenever I saw him, Don would ask me when I was going to bring Gulliver around again. One of the particular things my father liked about Don was that – though he was disabled and had cancer – he never talked about his health, as many of the seniors living at the Mill tend to do. My father dislikes conversations in which people trade stories about their health problems. Anyhow, according to the word at the Mill, Don died of pneumonia, which he contracted in the hospital where he had gone for hernia surgery. My father actually telephoned me to tell me about Don’s passing, which he had never done before when a Mill resident died. “He was one of the good ones,” was my father’s reaction. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1187256 Tue, 29 Jan 2008 22:10:22 +0100 1187256 http://blog.healthtalk.com/caregiver/jeff/a-caregiver-rants-about-insurance-company-communication/ I’m an easy-going sort usually, so why do I find it so hard to keep my temper when I’m talking to customer service reps at insurance companies? Case in point: A week or so ago, out of the blue, Pops got a letter from Aetna welcoming him to the Aetna Medicare Rx Plan – except nobody had ever enrolled him in the Aetna Medicare Rx Plan. The letter was full of irrelevancies and was unhelpful in explaining why he was getting it. I told him I would call Aetna and find out what was going on. I did remember that last year the EPIC New York State Prescription Plan, in which Pops had been enrolled for years, required him to sign up for a Part D prescription plan and provided a list of alternative plans. At that time, I called and talked to the EPIC rep and picked a plan called RX1 administered by a company called Simply Prescriptions. That is the plan he has been using. So where the heck does Aetna come in? So I called Aetna and the rep said the computer showed that he was enrolled by “beneficiary selection.” I said no one had ever enrolled him in Aetna, and the rep said the record showed someone had, so the conversation had reached an impasse, and I felt that familiar first sign of my temper flaring up (my ears get warm – and maybe red too, but I can’t see them). So I called Simply Prescriptions and the customer service rep there said Pops was still enrolled and that if he was enrolled in Aetna too, and Medicare found out, they would cancel all his drug coverage until the problem could be sorted out. This sounded a little bit alarming. I decided to go to the top, so I called Medicare. The customer rep there said the record showed that Pops was being covered by Aetna, not Simply Prescriptions. Like the Aetna rep, he said somebody had enrolled Pops. No, I said no one enrolled him in Aetna. If someone did, it would have been me, and I didn’t. I suggested that maybe EPIC switched his drug coverage to Aetna without our knowledge. “It says here it was ‘beneficiary selection’,” the Medicare rep said. I sputtered something about how these letters from insurance companies come out of the blue, and never give you any background or context and can’t Medicare do something about it. The customer rep said he appreciated my frustration. He even sounded like he meant it. So I called EPIC, who I should have called first, I guess. The customer rep said that EPIC had indeed discontinued using Simply Prescriptions and moved the program to Aetna to save money. She said that a letter had gone out to members explaining this. (That letter must be under the pile of Publishers Clearing House mailings on Pops’ desk, I thought to myself.) So we had missed the letter, and it was “our fault”, and I had to recalibrate my anger level back to yellow from orange (I use the same color scale as Homeland Security). But I still don’t understand why insurance company letters to senior citizens can’t explain things in clear sentences and maybe include a little background and context to help people make sense of them. If Aetna had just said “Welcome to former Simply Prescription members” or something like that, it would have been enough. And why would the insurance company records say “beneficiary selection” instead of “transfer of contract” or some other more accurate statement? Arrghh! End of tirade. Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1143521 Fri, 11 Jan 2008 00:32:22 +0100 1143521 http://blog.healthtalk.com/caregiver/jeff/a-caregivers-new-years-resolutions/ It’s not too late for New Year’s resolutions yet, right? Today, I took a look around the Web, perused the caregiver e-mails in my listserv and asked around to see what kinds of New Year’s resolutions other caregivers were making. I thought some might apply to me and Pops, and I found some that did (or there would be no blog). Anyway, here, in no particular order, is a list of “caregiver resolutions for 2008” I compiled and have paraphrased. I’m not making them all personally, but a couple I have taken as my own. I bet some of these would work for you too: • I will give my own health needs more attention. (This is a resolution I’m going to embrace. In fact, I have gotten to know my father’s doctor, Dr. H, so well that I am making him my doctor too. Next month, I’ll get my first physical in a few years). • I will take one hour out of each day just for myself. During “my hour” I will read, listen to music, walk the dog or (fill in your preference). (I’d make this resolution but I already take and enjoy this hour). • I will make an effort to get someone (a relative, a friend, a neighbor, respite care worker) to fill in as caregiver at least once a month so I can have a break. (I bet this is a hard one to keep for people who can’t count on family backup). • I will attend a caregiver support group so I can appreciate that there are others like me and to learn from their experience. (A good idea, unless the group become another demand on your time). • I will eat a nutritious diet and get enough exercise to keep my own health good. (This is my perennial New Year’s resolution, and I bet a lot of other caregivers could benefit from this one). • I will look for the humor in my caregiving situation, even (or especially) when I am sad or discouraged. (My resolution is a little different: I resolve to try to bring humor to every situation in 2008. Can a person resolve to be humorous? Well, at least less uptight). • I will reach out to my family so that the weight of caregiver responsibility can be shared. (In situations where there is a family, this really should be their New Year’s resolution, shouldn’t it)? • I will seek spiritual support or counseling to gain peace and perspective on my life. (Amen). I’d love to hear what other caregiver resolutions are out there among the HealthTalk caregivers. Take care of yourself in 2008, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1137291 Tue, 08 Jan 2008 22:27:13 +0100 1137291 http://blog.healthtalk.com/caregiver/jeff/no-holiday-from-caregiving/ What with the holidays and a week of vacation, I have been absent from the blogosphere for a while. The last few weeks have reminded me that you can take a holiday from blogging, but the caregiving goes on. We had some weird weather. A good old fashioned Catskill Mountain snowstorm was followed by rising temperatures and days of rain (global warming?), but not all the snow got washed away, and so we managed an “off-white” Christmas. The daughters Amanda and Molly were both home, and I brought Pops over on Christmas Eve and we made up a bed for him in the den. On Christmas morning, we all took turns opening up the presents and enthusing about what everybody got everybody. I got Pops a calendar of Nova Scotia historical photos (we both are members of a genealogical and historical society up there) and a book about Joshua Slocum’s first ever singled-handed circumnavigation of the world in a 36-foot fishing boat (he took three years from 1895 to 1898). The family also gave Pops a rack of spare ribs, some smoked fish and other favorite foods. At 90, Pops has a shockingly hearty appetite. In a wacky climax to the gift exchange, we hung up a Santa Claus-shaped piñata and Amanda and Molly beat at it with a cardboard tube until it broke and candy showered down. It was hilarious and I think is destined to become a new family tradition. Meanwhile, in between all of the seasonal gift buying and holiday planning of the past few weeks, Pops and I and Dr. H had to keep finagling Pops’s dosage of Coumadin, the blood thinner he takes. If you have been following this blog, you know that getting the Coumadin dosage right has been an ongoing problem for Pops, especially when drug interactions occur, as happened recently when he took the antibiotic Ciprol for a bladder infection. First, his blood gets too thin, and then Dr. H lowers his dosage, and then the Ciprol gets metabolized and his blood isn’t thin enough, and then Dr. H increases the Coumadin dosage, and then it gets too thin again. Also, there was a bit of an alarm one day when Pops woke up with a nosebleed, which could have been caused by his blood being too thin, or his blood pressure spiking, or simply his nasal passages being dried out and cracked. Actually, Pops has gotten nosebleeds his whole life. When he was younger, it was never thought to be anything special. Anyhow, all of this all seems to have resolved now and, as of the last blood test on December 28, Pops was back in the Coumadin therapeutic zone. So it looks like we’ll enter 2008 with things on a more or less even-keel. I hope you will too. Happy New Year everyone and take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1128882 Thu, 03 Jan 2008 20:53:57 +0100 1128882 http://blog.healthtalk.com/caregiver/jeff/a-caregiver-shops-for-the-holidays/ I think it’s pretty well recognized that the holiday season is a time of stress and strain for many people, and I am sure there are many caregivers among them. My own holiday stresses are happily minor, but still vexing. For starters, it’s time to buy gifts for the family. When it comes to my 90-year-old father, it means my buying a gift for him as well as all the gifts he gives to the rest of us. Pops doesn’t drive anymore, and though theoretically I could take him shopping, he has always been helpless and overwhelmed in department stores and malls. Come to think of it, even when he was much younger and still got around he depended on me to think of gifts for the family and then procure and wrap them for him. You might call it a holiday tradition. My problem is that I have a hard time thinking of ideas for gifts for everybody myself, let alone another set for Pops. So I have been wracking my brain and talking to Pops and my wife Deb. I think we have come up with some ideas (which I won’t divulge here in case certain individuals are in my Web audience). Another holiday challenge is trying to plan a little celebration that can include Pops without overtaxing him. Last year, we went to a nearby resort hotel for a Christmas Eve buffet, but walking around the beautifully decked-out hotel and grounds was a bit much for Pops who wound up parked on a bench while the rest of us soaked up the Christmas spirit. Deb and I are still trying to come up with a plan for an outing that will be special but a bit more manageable. At least I don’t have to decorate Pops’s apartment. His door already is festooned with holiday decorations. Pops doesn’t know where they come from, but somebody (more likely several somebodies) always sees to it that he has holiday-appropriate decorations on his door: Easter bunnies at Easter, flags on the July 4; holly and mistletoe at Christmas. Problems aside, I’m looking forward to a happy holidays, and I hope you are too. Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1087745 Tue, 11 Dec 2007 19:31:52 +0100 1087745 http://blog.healthtalk.com/caregiver/jeff/now-where-did-i-put-that-memory/ My early morning walk (three miles, rain or shine) is supposed to clear my mind for the day ahead, but it had a different effect today. I was ambling along listening to some classical music on my iPod, when I recognized the opening notes of the playful and timid flute piece Syrinx, one of my favorites by the French composer . . . ? My mind was blank. Nothing. What was his name? I knew it yesterday, and I was sure I would know it tomorrow. It was odd that I didn’t know it now. I walked along madly flipping through the 3X5 cards of my memory. I found the cards that said he was the composer of “Clair de Lune” and the “Maid with the Flaxen Hair” and “Afternoon of a Faun.” But his actual name wouldn’t come up. Some of the 3X5s must have stuck together. I tried visualizing the CD at home in the rack, which I knew had his name in big letters. I was pretty sure it started with a D, but when I tried to fill in the rest, the name “DuBois” kept elbowing into my mind. No, that’s my neighbor’s name whose house is on my walk route. Dubonnet? No, that’s a wine. By this time, I was getting fixated on remembering the composer’s name. I had the palpable sense of the name flitting in the shadows just beyond my mind’s reach. This got me thinking about one of HealthTalk Live programs I listened to recently, and I recognized my present problem as a “subcortical memory problem,” that is, a problem retrieving a memory that was formerly accessible. The expert guest on the program had contrasted that problem with an “encoding memory problem,” which is a problem planting the memory in your brain in the first place. The latter problem is the kind my 90-year-old father has when he can’t remember something he just said and says it again, or as happened a couple of weeks ago, when he couldn’t remember where he had gotten the Egg McMuffin he was eating . In those cases, Pops’ memory never got planted in his brain in the first place. I had been unsuccessfully trying to think of the composer’s name for about three-quarters of a mile when I decided to put it out of my mind. I don’t know what I was thinking when I passed the DuBois’s house and heard myself say “Debussy.” I actually had the sensation of saying the name before I thought it. It was as though my memory was blocked by the name Dubois until I got past their house. I am 61 and well into the stage of life when I can expect these memory lapses (in fact they can happen at any age), but I am noticing them more. And they are too weird. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1079919 Fri, 07 Dec 2007 21:00:43 +0100 1079919 http://blog.healthtalk.com/caregiver/jeff/a-caregiver-sweats-the-medications-again/ It looked like Pops was going to get through his course of Ciprol (ciprofloxacin) treatment for a bladder infection without throwing his blood-clotting factor out of whack this time. It looked that way. No such luck. Last week – his last week on Ciprol – Pops’ blood test results came back too high. Just like the other time he took Ciprol last spring, the antibiotic interacted with his blood thinner, Coumadin, and made his blood too thin, posing the risk of a hemorrhagic stroke. It was high enough so that Pops’ doctor’s nurse Gina called to say he should skip the Coumadin for a couple of days. So I called Pops and told him to skip the “blue tablet and the half-pink tablet” (4.5 mg) for the next two days. The next day, Thanksgiving, I went and picked up Pops for Thanksgiving dinner, checked his pill organizer and confirmed that he had not taken the pills for the two days. “Now just go back to taking the pills like before,” I said. We had a nice Thanksgiving and over the next couple of days some family outings with my wife and daughters, and I did not see Pops for three days until I went back to pick him up for another blood test. To my surprise, I discovered he had carefully picked the Coumadin pills out of his pill organizer and had not taken them for the intervening days either. Predictably, the next day Gina called to say Pops’ new blood test showed his blood wasn’t thin enough. I told her what happened and the doctor said to leave the dose as it is now that Pops is taking the pills again. At least, I assume he is. Yes, he is. I just called to check. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1060164 Thu, 29 Nov 2007 21:23:05 +0100 1060164 http://blog.healthtalk.com/caregiver/jeff/memory-lapses-cause-concern/ You know, lots of times talking with my father, you would never know he is 90 –years- old. He is completely lucid, often sharp, getting off the clever one-liners that make him the toast of the Mill, where he lives. At other times, the after effect of his two strokes is starkly apparent. Case in point: I was having breakfast at McDonald’s with Pops the other day. He was halfway through an Egg McMuffin and was sipping his coffee. All of a sudden he looked down at the sandwich and asked, “Where did that come from?” This was way beyond Pops’ normal forgetfulness. He honestly did not remember that he had been eating the Egg McMuffin just a moment before. He thought I had just surreptitiously put the half-eaten Egg McMuffin there, and it took a minute to convince him I hadn’t. Then he looked a little sheepish. I see these mental lapses in Pops from time to time. Most of the time, he glosses over these missteps, and I pretend not to notice. This time with the Egg McMuffin, there was no hiding it. I was listening to a recent HealthTalk Live program on memory and the guest, a Dr. George Bartzokis from UCLA, threw some light on the episode. He said a stroke can lead to vascular dementia and memory problems by diminishing the blood supply to a part of the brain. I guess that what’s happening to Pops. So far, these episodes are pretty rare. If they were frequent, it seems like at some point they would threaten Pops’ ability to live independently. I will have to watch for them and hope they stay rare. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1044228 Wed, 21 Nov 2007 19:11:54 +0100 1044228 http://blog.healthtalk.com/caregiver/jeff/a-lighter-moment-in-caregiving/ The other day I went over to pick up my father for breakfast, and found his friend Lily there having coffee with him. Lily is in her late 70’s and has an apartment at the Mill, too. She makes a point to check in with Pops every morning, so I asked her to come to breakfast with us and she said OK. That’s when the hilarity began. I had the pickup truck, which technically has a little back seat, so Pops struggled into the back seat with me providing a little lift from behind. The problem started when we got to the diner and had to get Pops out. First, he tried a frontward approach, but couldn’t get his good leg to reach the ground, so he tried backing out. Lily and I clung to Pops’ elbows and armpits trying to ease him out in the narrow gap between the front seat and the doorframe. Maybe Pops is ticklish, but halfway out he got to laughing and then so did Lily and I. There was an uncertain moment or two, but we finally got Pop out, went into the diner and had a nice breakfast. Then, when it came time to go back to the Mill, I suggested that Lily get in the backseat this time, thinking she was younger and would have an easier time extracting herself from the truck. A big mistake. Back at the Mill, we had to repeat the whole awkward process, this time with Lily trying to get out of the truck. Lily compounded the problem by sliding down to the truck floor thinking she could ease out from there, but her hips were too wide to squeeze through the front seat doorframe gap. And then she couldn’t get back up on the seat to take a different approach. It looked hopeless. Lily was jammed in the door gap like Winnie the Pooh’s head in the honey jar. I was about to enter the truck from the driver’s side and try to drag her back up on the seat, but Lily got the idea of turning on her side and trying to slide out that way. By this time, we had begun laughing again. As Lily struggled to slide out, her dress snagged on the lip of the doorframe and began hiking up higher and higher. Our laughing escalated, but there was no turning back for Lily, and Pops and I averted our eyes as she threw modesty to the winds and squirmed free. Lily brushed her dress back down and the three of us stood on the sidewalk rocking on our heels until our laughter abated. Just one of caregiving’s lighter moments that I hope won’t be repeated. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1024445 Tue, 13 Nov 2007 23:28:19 +0100 1024445 http://blog.healthtalk.com/caregiver/jeff/pops-blood-test-looks-ok-this-time-around/ Pops had a blood test yesterday to see how his clotting factor was trending. As I’ve blogged before, I have been anxious about it because Pops is again taking Ciprol (ciprofloxacin) for a bladder infection, and the last time he took Ciprol it interacted with his blood thinner, Coumadin, and made his blood too thin. To make a long story short, the blood test came out okay this time. It was up a bit from the last test a couple of weeks ago, but it was in the therapeutic range (on the high end). Dr. H’s nurse, Gina, who called with the news, said Pops could wait two weeks for his next blood test. By then, he’ll be done with the Ciprol. As luck would have it, Dr. H was taking one of his monthly vacations this week when the lab results came in, and Gina said his stand-in, Dr. M, suggested a month before the next test. Gina, (rightly, I think) took it upon herself to suggest that the next test be in two weeks. “I don’t think Dr. M realizes your dad is taking Ciprol,” she said. I think double-checking his physicians is probably the most important assistance I provide my father. This time Gina caught the “error,” but there have been many prior instances where it has fallen to me to remind the physicians of something important about my father’s condition or medications. I am sure this is true for a lot of other caregivers too. The moral: Caregivers, don’t assume that your loved one’s physicians are on top of everything, because they’re probably not. Oh, and I got my flu shot yesterday. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1017957 Fri, 09 Nov 2007 17:35:42 +0100 1017957 http://blog.healthtalk.com/caregiver/jeff/pops-blood-test-looks-ok-this-time-around/ Pops had a blood test yesterday to see how his clotting factor was trending. As I’ve blogged before, I have been anxious about it because Pops is again taking Ciprol [ciprofloxacin] for a bladder infection, and the last time he took Ciprol it interacted with his blood thinner, Coumadin, and made his blood too thin. To make a long story short, the blood test came out OK this time. It was up a bit from the last test a couple of weeks ago, but it was in the therapeutic range (on the high end). Dr. H’s nurse Gina, who called with the news, said Pops could wait two weeks for his next blood test. By then, he’ll be done with the Ciprol. As luck would have it, Dr. H was taking one of his monthly vacations this week when the lab results came in, and Gina said his stand-in, Dr. M, suggested a month before the next test. Gina (rightly, I think) took it upon herself to suggest that the next test be in two weeks. “I don’t think Dr. M realizes your dad is taking Ciprol,” she said. I think double-checking his physicians is probably the most important assistance I provide my father. This time Gina caught the “error,” but there have been many prior instances where it has fallen to me to remind the physicians of something important about my father’s condition or medications. I am sure this is true for a lot of other caregivers too. The moral: Caregivers, don’t assume that your loved one’s physicians are on top of everything, because they’re probably not. Oh, and I got my flu shot yesterday. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1015937 Fri, 09 Nov 2007 04:48:37 +0100 1015937 http://blog.healthtalk.com/caregiver/jeff/share-the-care-group-offers-a-team-approach-to-caregiving/ The AARP magazine has an article on caring for the caregivers in the current November/December issue. It has the usual scary stuff abut how caregivers are at greater risk for depression, infectious diseases, inflammatory diseases, exhaustion, self-neglect and a bunch of other bad stuff all wrapped up in a new quasi-medical term: “caregiver syndrome.” I almost put the article down. Reading another article about caregiver depression was starting to make me depressed. But then my attention was drawn to a sidebar about setting up a “share the care” group, an approach to caregiving based on the experience of a group of women who got together in 1988 to help care for a mutual friend with cancer. The experience spawned a novel and creative model for caregiving, a book called Share the Care, and a not-for-profit organization called ShareTheCaregiving, Inc. They also have a website where you can get more information about this approach to caregiving. The basic idea is simple, really, just setting up a network of people to help the caregiver. What makes it different is that it is not a haphazard group of occasional helpers but an organized network of eight to ten people with a schedule and assigned responsibilities. The group can include family members, neighbors, friends, co-workers – anybody who is willing to help. The key to its success is that the caregiving load is spread over many people who can bring their best efforts to bear without risking “caregiver syndrome.” I can see that this is an idea that may come in handy one day caring for my 90-year-old father. As an only child without family to fall back on, I have often wondered how I could manage single-handedly caring for Pops if his condition were to worsen and he were to need more time and attention than I can spare from work and family obligations. Now I am realizing that his home at The Mill is a perfect setting for a “share the care group.” Pops already has a lot of friends there (many are my friends too) and it seems like it wouldn’t be difficult to organize the eight or ten people needed to make a share the care group work. It’s something I’ll keep in mind for the future. Anyway, I recommend the AARP article and, if you are interested, you can learn more about organizing a share the care group at the Share the Care website. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=1009646 Tue, 06 Nov 2007 22:34:12 +0100 1009646 http://blog.healthtalk.com/caregiver/jeff/a-way-to-observe-national-family-caregivers-month/ I may have sounded a bit dismissive a few blogs back when I wrote about National Family Caregivers Month (which starts today) being government’s way of recognizing caregivers without actually materially helping them. That doesn’t mean we can’t individually recognize the caregivers we know with individual acts of kindness and concern. Here are some ideas I thought of from the caregiver situations I know about, but other individual caregivers may have different and very specific needs. Please write in with your own suggestions: • Take over for your favorite caregiver for a week. For example, in most families, there is one sibling (it’s usually the oldest daughter, isn’t it?) who carries the bulk of the caregiving load for an elderly parent or parents. This is a good time for other siblings to step forward and take up the burden. Better yet, siblings, maybe it’s time to do the right thing and resolve to divvy up the caregiving chores more equitably from now on. • Treat you favorite caregiver to a dinner out, some tickets to a concert or a ball game. A couple of tickets or a gift card can be a good way to let your favorite caregiver know that you appreciate the efforts they make. • Paint your favorite caregiver’s house, or mow their lawn, or rake the leaves etc. So maybe there is a good reason that you can’t help with the actual caregiving, but you can free up your favorite caregiver’s time by helping them with the other stuff they need to do, it will demonstrate your appreciation. • Chip in to help cover the costs of caregiving. It’s a safe bet that your favorite caregiver is quietly picking up significant costs of caregiving, even if it is only the cost of gasoline driving the loved one to doctor appointments. Why not offer a monthly contribution to offset these costs. If none of these suggestions seems quite right for your situation, use your imagination to help ease the burden on your favorite caregiver for the next 30 days. Share you ideas with the rest of us on this blog. Think of it as a little caregiving for the caregiver. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=998860 Thu, 01 Nov 2007 21:01:08 +0100 998860 http://blog.healthtalk.com/caregiver/jeff/digging-up-67-year-old-memories-with-mexican-food/ I take my 90-year-old father to dinner or breakfast once or twice a week, so the novelty has pretty much worn off these outings. Last Saturday, for a change I suggested we go to a local Mexican restaurant instead of any of the same four or five diners and family restaurants we usually haunt. While Pops likes all kinds of food, including spicy Chinese and Cajun dishes, I had never heard him mention Mexican food, but when I suggested it, he was on board right away. At the restaurant, he looked less certain as he surveyed the menu of unfamiliar dishes like “chimichanga”, “tamale” and “guacamole”. I made some suggestions, but Pops seemed hesitant. Then he saw the words “arroz con pollo” (literally “rice with chicken”) and his choice was made. It turns out this traditional Spanish meal was what my then 23-year-old father ate nearly every day for supper when he was in Panama working at a shipyard in the U.S.-run canal zone just before and after the United States entered World War II (1940 to 1941). My father explained that since he didn’t speak Spanish, and most of the Panamanian locals didn’t speak English, he found it difficult to do things like order food. So he found out the name of this one Spanish dish he liked and stuck with it. “Every night I would go into the same restaurant and order from the same waitress the one dish I knew on the menu: arroz con pollo,” Pops said. “Finally, one night the waitress spoke up and said, ‘you know we have other things on the menu you might like.’ It turned out she spoke English better than I did.” Pops chuckled at this 67-year-old memory – then dug up another. “Another time, I was in the same restaurant and an American man at the next table was making a pitch at the waitress, and it was making her uncomfortable,“ Pops recalled. “After a few minutes of this, a man in a dirty apron came out of the kitchen, walked up to the table and hit the American across the head with a fish.” “Was it frozen?” I asked. “No, it was fresh,” Pops said, looking thoughtful. “As I remember, it was a mackerel.” Pops may be old and his memory flagging, but he never forgets the funny stuff. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=992153 Tue, 30 Oct 2007 21:30:30 +0100 992153 http://blog.healthtalk.com/caregiver/jeff/getting-the-clotting-factor-under-control/ With Pops again taking Ciprol (ciproflaxcin) for a bladder infection, I’ve been anxious about what his Prothrombin test (clotting factor) on Tuesday would show. But nobody from Dr. H’s office called me the day after the test, as they usually do. So on Thursday, I called Dr. H’s office and the office manager Linda said the doctor was away this week. (If I have one complaint with Dr. H it is that he takes a lot of time off: One week a month. And whenever Pops has a problem, guess what week it is.) However, Linda took the extra step and checked with the nurse Gina, then came back to the phone to say the blood test was “okay” and Gina would call me after Dr. H got a look at it on Friday. Sure enough, Gina called today and the test was right in the middle of the therapeutic range this time. I guess maybe it was a good idea to adjust Pops’ Coumadin dosage downward as he started the Ciprol rather than wait until his blood-clotting factor was all out of whack, as happened over the spring and summer when we struggled to keep the Ciprol-Coumadin interaction from thinning his blood too much. Of course, the Coumadin is supposed to prevent another ischemic stroke by keeping blood clots from forming in Pops’ brain (as happened in 2005 and 2006). But I was reminded by a recent HealthTalk Live program, How to Reduce Your Risk of Stroke (October 10), that when Coumadin thins the blood too much, it can result in internal bleeding in the brain and the other kind of stroke: hemorrhagic stroke. So this time we hit the bull’s eye. I hope we can keep it there. Dr. H said Pops wouldn’t need another blood test for two weeks. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=982775 Fri, 26 Oct 2007 22:01:04 +0100 982775 http://blog.healthtalk.com/caregiver/jeff/pops-gets-a-flu-shot-and-i-dont/ Today was a “twofer” for Pops. I took him to the lab to have his weekly Prothrombin blood test and, then to Dr. H’s office where the nurse Gina administered his flu shot. While I was there I tried to get a flu shot too, but Gina said I couldn’t because I am not Dr. H’s patient. Between the two medical procedures, Pops and I went to McDonald’s for breakfast, and I proceeded to dump a whole steaming cup of coffee in my lap. I may have uttered an off color epithet or two at that moment. “Here have some of my coffee,” Pops offered. “No thanks,” I muttered. “Just give me your pants.” For the next 10 minutes, I stood in the bathroom with the wall-mounted blow dryer aimed at the crotch of my pants. Yes, it has been shaping up as that kind of day. Last night, my asthma flared-up and I woke up at 5 a.m. coughing and hacking. Then, on the ride over to pick up Pops at The Mill, I noticed grinding in my pickup truck brakes. I am having trouble preserving my usual equanimity. But I was again impressed at how Pops takes all of this medical stuff in stride. He rolls his sleeve up. He rolls his sleeve down. He rolls his sleeve up. He rolls his sleeve down. No fuss. Afterwards, I drove home in my damp pants listening to the brakes grind. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=972869 Tue, 23 Oct 2007 20:21:30 +0100 972869 http://blog.healthtalk.com/caregiver/jeff/is-collaborative-caregiving-coming-for-people-with-dementia/ According to researchers at Indiana University Center for Aging, the U.S. needs a more integrated healthcare system for elderly people with dementia, a system that fosters collaboration among healthcare providers, community service organizations and caregivers. “Well, duh”, was my first response when I saw this new research from the November issue of the “Journal of General Internal Medicine.” Isn’t this obvious? But I guess it is important progress whenever an influential medical journal like the JGIM states the obvious. An expert stumbling over the obvious is the way we get problems articulated and a public conversation going in this country. Anyway, the crux of the journal article was that most people with dementia only get care from their primary care doctor, and, in the words of study co-author Malaz Boustani, M.D., M.P.H., “neither the primary care system nor primary physicians have the time or resources to meet the ‘biopsychosocial’ needs of individuals with dementia.” (Hint: For “resources” read “reimbursement.”) I initially tripped over the “biopsychosocial needs” terminology, but the article helpfully explained that these include daily living problems, behavioral and psychological problems, decision-making problems, and the lack of ability to plan. In an editorial in the journal, the researchers went a little further and suggested a solution to this problem – collaborative dementia care, which would extend the care beyond the doctor’s office into the homes and communities of patients and their caregivers. “This model . . . can be adjusted to enable the delivery of the right doses and the right combination of critical components of dementia care to the right patient and the right caregiver at the right time,” Dr. Boustani stated confidently, if a little vaguely. The article did not provide crucial detail, but I took this to mean some kind of formal collaboration among the primary care physician, local community services (such as the local Office for the Aging) and the caregiver. A good idea in theory, but in practice I wondered who would coordinate these different resources. The primary care doctor? I am having trouble picturing this. My father’s doctor never talks to my father’s urologist now much less coordinates care with multiple other professionals and agencies. It seems to me each primary care practice should have a dedicated professional caseworker to follow up patient needs that extend beyond the practice walls (like hospitals already have). I am sure many caregivers would welcome the help and counsel of someone familiar with the community services and an open line of communication to those service providers. (And by the way, experts, this integrated, collaborative approach is needed to address a wide variety of health issues, not just dementia.) It’s another glimmer of hope for caregivers, I guess. But for now and the foreseeable future, I think we can assume every caregiver will have to be their own caseworker for their own loved one’s biopsychosocial needs. Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=961845 Thu, 18 Oct 2007 23:37:56 +0100 961845 http://blog.healthtalk.com/caregiver/jeff/its-time-for-the-flu-shot/ I guess I have been preoccupied with Pops’ bladder infection because I never thought about the fact flu season is coming until Pops said the other day, “Shouldn’t I get a flu shot?” And, of course, he was right. For a 90-year-old man with chronic conditions, the flu can be a particularly dangerous disease. So I called Doctor H’s office and set up an appointment for next Tuesday for Pops to get a flu shot. For convnenience, I’ll probably get one at the same time (if it doesn’t cost too much. Dr. H is not my usual doctor, so I won’t be covered by insurance). Meanwhile, Pops started his new course of Ciprol for the bladder infection yesterday, but before he took the first pill, I made sure he had a PT blood test. I had the idea it would be a good baseline on which to base adjustments to his Coumadin doseage when the interaction with Ciprol kicks in. Today, the blood test came back a little on the low side, which is okay since the Ciprol will be amplifying the Coumadin efect within a few days, if past experience is any measure. But of course Pops will need a blood test next week to check and every week for the duration of his time on Ciprol, at least. The other day, I also asked Pops about the upcoming Congers High School reunion that (I thought) we were planning to go to and was surprised when he said he never sent back the registration material. He said he had thought it over and decided against going. I didn’t ask him why, but I know lately he’s been saying that he doesn’t have much energy. I didn’t know if I should try to coax him into going, but I know I hate to be coaxed, so I didn’t. These are the things that make me realize Pops is slowing down. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=959066 Wed, 17 Oct 2007 20:11:58 +0100 959066 http://blog.healthtalk.com/caregiver/jeff/no-not-another-bladder-infection/ Pops’ urologist Dr. C called a couple of days ago to tell me that Pops’ urine culture from last week confirmed another bladder infection, and he said he wants to give him a 30-day course of Ciprol (ciproflaxcin). It will be Pops’ second time on Ciprol for bladder infection since March (and he also had a course of sulfanomides). At least, he’s not suffering from any symptoms. Besides the fact of the persistent infection, this is upsetting because Ciprol is the same drug that Pops took this spring and that interacted with his blood-thinner Coumadin to screw up his blood-clotting factor. He had to get PT blood tests weekly all summer before the blood-clotting factor stabilized where it should be just a few weeks ago. When I reminded Dr. C of the difficulties over the summer with the Coumadin interaction, he insisted Ciprol was still the best choice. “They all interact with Coumadin except penicillin, and the infection doesn’t respond to penicillin,” Dr. C said. In the back of my mind, I know that if the infection isn’t cleared up, I know Dr. C will push for a cystoscopy, which I also know my father would prefer not to have. Today, I spoke to Pops’ regular physician Dr. H to see if he would want to adjust Pops’ Coumadin dosage now, before Pops begins the Ciprol. Dr. H thought it was a good idea, so he suggested cutting my father’s Coumadin dose to 4.5 mg a day. Not enough, I thought. It’s funny. I never used to have my own opinion about these medical matters, and I know my medical knowledge doesn’t run deep. But I’ve paid attention to my father’s medical signs and I know what has happened before. I guess we’ll see. And it’s back to weekly blood tests for Pops. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=944770 Fri, 12 Oct 2007 00:37:48 +0100 944770 http://blog.healthtalk.com/caregiver/jeff/national-family-caregivers-month-approaches/ In case you didn’t know, National Family Caregivers Month is coming up in November. This year, the official commemoration reportedly will focus on public policies addressing family caregiving issues. If you’re a caregiver, don’t expect cake and a party, much less any extra help with your caregiving responsibilities, but I suppose it can’t hurt that there’s a month set aside exclusively to help raise awareness of caregivers. Well, it’s not actually “set aside” for caregivers. November is also National Alzheimer’s Disease Month, National Healthy Skin Month, Foot Health Issues Related to Diabetes Month, TMJ Awareness Month and a 30-day promotional opportunity for a slew of other health-related issues. I don’t mean to sound jaundiced about National Family Caregivers Month, but it strikes me that setting aside a month for a health issue is what government does when it intends to do little else. I would be much more impressed if any of the dozen or so caregiver bills introduced in Congress this year seemed likely to be enacted. A few months ago, I was feeling optimistic, but so far nothing has been enacted with just three months to go in the year not to mention everybody in government is focused on Election Day 2008. I can’t help but notice that the recommended “activities” for National Caregivers Month (a local proclamation, a letter to the editor campaign, a local recognition event) all sound a bit irrelevant to the people whose stories I read in my caregiver list serv. Many of these people are heavily burdened, some are desperate; none of them will have their lives improved by a letter to the editor. I suggest that the members of Congress celebrate National Caregivers Month this year by planting their fannies in their respective chambers, bringing some of these caregiver bills to the floor and voting them into law - oh, and then funding them. Now that would put National Caregivers Month on my calendar! Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=939008 Tue, 09 Oct 2007 23:33:12 +0100 939008 http://blog.healthtalk.com/caregiver/jeff/some-old-health-problems-resurface/ When I called my father yesterday morning to check in, he said he awoke feeling lightheaded and had to hold onto the furniture as he made his way around the apartment. I told him it sounded like his blood pressure was too low and I said I would call Dr. H to see what we should do. Back in March, a similar thing happened. That time, Dr. R (who was standing in for Dr. H) said Pops’ blood pressure probably had dipped overnight. Dr. R lowered the dosage of Pops’ blood pressure medication Altace from 10 mg to 5 mg a day. That seemed to do the trick, and the lightheadedness went away. Then in April, on the next visit to Dr. H, Pops blood pressure had begun to creep back up on the lower dosage, so Dr. H increased the medication to alternating 5 mg and 10 mg doses daily. Pops had been fine on the split dosage until yesterday. Though come to think of it, I thought Pops blood pressure was on the low side at Pops’s last appointment two weeks ago, and I commented on it. Dr. H said that, in his opinion, the lower the blood pressure the better, as long as there are no symptoms of hypotension. Of course, lightheadedness is a symptom of low blood pressure, so when I got Dr. H on the phone yesterday, he suggested skipping the Altace for a day and then dropping back to the 5 mg daily dose. We did that and today, Pops said he felt okay – no lightheadedness. Today also happened to be Pops’s regular visit to his urologist Dr. C for the quarterly shot he gets for his prostate condition. Diagnosed with prostate cancer five or six years ago, today Pops has no symptoms (in fact he never had any) and an “undetectable” PSA count – but he still gets the shot. Dr. C also took a urine sample and said he detected traces of blood and white blood cells in Pops’ urine. He said he would do a culture to see if there was an infection. Pops said he had never seen blood in his urine nor had he experienced any symptoms, such as difficulty urinating. Like the blood pressure dip, this is also “déjà vu all over again.” Pops had two courses of antibiotic this spring for a symptom-less bladder infection. I wonder if there is some minor level of infection that might be expected (and tolerated) in the bladder of a 90-year-old man? A question for Dr. C. Just two weeks ago in this blog I was crowing about my father’s great check-up. Now this stuff has cropped up again. A person’s health sure can change fast at 90. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=928122 Thu, 04 Oct 2007 20:55:11 +0100 928122 http://blog.healthtalk.com/caregiver/jeff/a-little-inspiration-from-a-neighbor/ My wife Deb recently got a new job as public relations director in a regional rehabilitation center. It’s a facility for severely disabled people, many with brain injuries. Some of the residents (they call them “neighbors”) will succeed in their rehabilitation and “graduate” to the wider world. Others will spend their days at the center. The center has very active arts, music and creative writing programs for the neighbors, and my wife has been coming home with photos of their works of art and some of their poetry. We both loved this poem, an unexpected exultation written by a severely disabled man named Joe: To be a human, what a privilege I could have been a grasshopper on the ledge of a hill Or an elephant, or any kind of animal on the earth But to be a human being, what a great amazing thing To be the smartest, most civilized being on the planet What a great gift, how lucky can you get Talk about taking something for granted! It’s like we all won the lotto for a million dollars I was amazed that anyone in that situation could feel such gratitude and joy. “Joe must be a very special individual”, I said to my wife. “No, all of the neighbors feel like that,” she said. Joe’s poem reminds us what we have when we seem to have nothing. Its message should be remembered when we caregivers are drawing conclusions about someone else’s quality of life. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=908818 Fri, 28 Sep 2007 00:57:27 +0100 908818 http://blog.healthtalk.com/caregiver/jeff/caregivers-go-give-dr-taylor-a-listen/ I was browsing through some of the programs on HealthTalk the other day (always time well spent) and listened to the interview of Dr. Richard Taylor about what life with Alzheimer’s disease is like. Wow. Every caregiver needs to hear this interview. Go to the Alzheimer’s program page and click on the September 12 program “Alzheimer’s: Active, Involved and Alert .” Dr. Taylor, a former psychologist who suffers from dementia thought to be Alzheimer’s, is the author of the book, “Alzheimer’s from the Inside Out,” which he said he wrote to keep tabs on the progress of his disease. I haven’t read Dr. Taylor’s book yet, but judging from the interview, Dr. Taylor has ideas – some quite surprising – that any caregiver would benefit from hearing. By coincidence, I listened to this program right after I blogged about my 90-year-old father’s inability to keep track of important papers. I was wondering if I should just ask to him turn over all of his personal business to me so he wouldn’t have to deal with it. Dr. Taylor would say no - emphatically. Some excerpts from his interview are below: Dr. Taylor on “disabling” the people you care for: “Look for ways (to) enable people to do as much as they can do, rather than disable them. If they’re having trouble with some particular function or activity in their life, try to figure out a way you can help that person continue to do that activity with support from you, rather than immediately say, well, for your own safety and because I’m not going to spend the time standing next to you, you can’t do it any more.” Dr. Taylor on the popular notion that you should engage people with Alzheimer’s by reminiscing about their past: “Well, I think (reminiscing) conditions people to believe that my best shot at happiness is living in the past. But you don’t live in the past. You still have to figure out what’s going to happen tomorrow morning and why are they doing this and when am I doing that. So I think the best way you stay engaged with people is in the here and now. . . . And you tell them about the world, and you keep them updated about the family. And instead of bringing in pictures that are 50 years old bring in pictures that are five days old.” Dr. Taylor on caregiver responsibility: “I met another lady who was in a nursing home because she wandered. Now, here is a person who had a very vibrant mind, but she wandered. Boy, what a penalty to pay for wandering, to be put into a nursing home. I just wondered if her family had exhausted every single possibility they could think of before they did that. Because she was not ready to be in a nursing home. She didn’t need any of the other services of a nursing home other than a locked door.” Dr. Taylor on paranoia and Alzheimer’s: “If somebody says to you, you can’t drive, and you think you’ve been a pretty good driver, and they say, well the doctor says you can’t drive. The kids all said you can’t drive. They’re all coming over here for a meeting to tell you you can’t drive. Would you feel a little paranoid about how your family is acting?” Dr. Taylor on keeping a purpose in life: “I’ve discovered that it really isn’t a function of you have to have more activity, it’s a function of you have to have a purpose. You know, when you retire, your purpose is to act retired. When you teach, your purpose is to be a teacher. But when you have Alzheimer’s, and you can’t drive anymore, and you can’t get out of your house, and people don’t talk to you as much as they used to, and you’re losing your self-esteem, you begin to lose your purpose.” When you think about it, many of Dr. Taylor’s ideas could apply to caregiving for people with many diseases, not just Alzheimer’s. Give a listen, and see if your eyes aren’t opened to a new way of thinking about caregiving. Mine were. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=903918 Tue, 25 Sep 2007 19:49:13 +0100 903918 http://blog.healthtalk.com/caregiver/jeff/a-caregiver-worries-about-paperwork/ Right after my father had his stroke in 2006, I was taking care of his bills and writing the checks for him to sign. Then, as he recovered, he began to do this himself again with me looking over his shoulder, just as the rehabilitation people had recommended. A couple of months later, he was able to go back to doing it himself. And I have to say he’s been doing pretty good with the bills. But he’s not so good at keeping track of the important correspondence that comes in, which seems to get intermingled with junk mail and eventually disappears. I’m beginning to think I have to find a graceful way to take that chore over. Case in point is the form Pops just received from his drug plan carrier asking him to update his account information and provide income figures for 2006. There were no changes to report on the account information, but he could not find any of his 2006 income statements to fill in that part of the form. The carrier wasn’t asking for copies of the 2006 documents, so we finally just took his most recent bank statement and calculated his annual income from the monthly direct deposits from his two pensions and Social Security. It should be close to his income for 2006 too. I’ve suggested to Pops that he keep an accordion folder handy with my name on it and stick anything in it that seems important, then I will go through it whenever I see him. This weekend, I will take a “Jeff folder” with me and put it prominently on his desk. I don’t think he will object to this, but I am afraid he will still forget. I wonder what the readers of this blog do in a similar situation short of completely taking over all the bill paying and correspondence, which would further whittle away my father’s independence, which I don’t want to do. Any ideas out there? Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=888902 Thu, 20 Sep 2007 21:00:56 +0100 888902 http://blog.healthtalk.com/caregiver/jeff/another-good-checkup-for-pops/ We had another good checkup for Pops with Dr. H yesterday. His blood pressure is good, his blood sugar is under control, there is no swelling in his legs from the heart failure he suffers, and his lungs are clear. He’s still 90 and bears up under the usual infirmities of age, but his health is actually pretty good. These periodic exams are a three-way conversation with Dr. H often asking me what meds Pops is on (it’s in the medical records, but I guess it’s easier to ask me) and whether I’ve noticed anything of concern with Pops. Sometimes, maybe I get in the conversation too much. I had to laugh when Dr. H asked Pops if he had any chest pains, and Pops looked at me for the answer. Almost a year-and-a-half ago, after Pops’s stroke, Dr. H took me aside and said the upcoming year would be rough and my father would most likely go into decline. “I just went through this with my own father,” said Dr. H, who is about the same age as me. Now, Dr. H shakes his head in wonder at the state of my father’s health. Before the appointment, my father and I had gone to breakfast with his friend Lily, who is in her mid-seventies. She is a rip, always poking fun at Pops – but she does it with a smile. The topic of the day was that, with the first chilly night, the heat had come on at The Mill, but then wouldn’t go off. According to Lily, the place became a sweatbox! Now the furnace is turned off awaiting a service call and, according to Lily, “the place is freezing.” My father said his place was okay, and when I got back there later, I agreed that it seemed comfortable to me too. (As I have noted before, Pops’s apartment is on the ground floor and tucked away by the interior courtyard, and the temperature stays pretty stable.) I then helped my father go through some correspondence from his drug plan. When I left, I felt everything was in order. All in all, it was a morning a caregiver could feel good about. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=883022 Tue, 18 Sep 2007 22:03:50 +0100 883022 http://blog.healthtalk.com/caregiver/jeff/finally-pops-gets-the-right-coumadin-dosagemaybe/ Hallelujah! We may have reached the end of the four-month quest to find the right dosage of the blood thinner Coumadin to help protect Pops from a future stroke without putting him at risk of internal bleeding. Pops’ blood clotting factor was thrown off in late April by a drug interaction with an antibiotic given for a bladder infection. Since then, Dr. H has been adjusting and re-adjusting the Coumadin dosage, subjecting Pops to weekly Prothrombin (PT) blood tests to monitor his blood’s clotting factor. Early last week, Dr. H finally returned to what had been the optimal dosage before the drug interaction: 4.5 mg of Coumadin daily and a once-a-week double dose of 9 mg. So I was hoping for a good reading when I took Pops to his weekly Prothrombin (PT) blood test late last week. I was dismayed when the test came back. The clotting factor had overshot the therapeutic range and went from too low to too high! Then I realized that I had taken Pops for his blood test the same day as the double dose of Coumadin – in fact, just a couple of hours after taking the medication. Maybe it was just a spike. This week, I took him for his PT test earlier in the week, and, sure enough, the results came down right smack in the middle of the therapeutic range -a bull’s-eye! Pops will have to get one more weekly PT test to demonstrate stability but hopefully, Dr. H can space out the tests after that to once every three or four weeks - something to talk about when I take Pops to his next doctor appointment on Monday. Take care of yourself, Jeff (Source: Caregiver Notes) Caregiver Notes blogs http://www.medworm.com/rss/comments.php?id=869699 Fri, 14 Sep 2007 00:07:01 +0100 869699 http://blog.healthtalk.com/caregiver/jeff/a-caregiver-tries-to-loosen-up/ When I visit my father, I always start out all business, going down my mental check list of caregiver tasks: Is his pill box in order? Are there groceries in the house? Does he have any bills or correspondence that needs attending? Has he checked his blood sugar? Maybe it’s the still unfamiliar sense of responsibility as the caregiver for another person that makes me so serious and task-oriented. My father relies on me for a lot of the basics, so I am always alert to his material needs, but because of that, I sometimes feel that I am a bit of a bore to be with. Anyhow, I have vowed to try to loosen up a little, try to be a bit less serious in my caregiver role. Maybe talk less about Pops’s upcoming doctor appointments and blood tests and more about shared reminiscences or interests. Maybe crack more jokes. I wonder if the problem I am describing is real or imagined: Has caregiving really made me more serious? Or is this just another species of self-inflicted caregiver guilt, that nagging feeling that I’m not measuring up somehow? Has anyone else out there noticed that they have become more serious since they started caregiving? If it’s a widespread condition, I can declare it a syndrome and give it a name. How about “caregiver stodginess?” Take care of yourself. Jeff (Source: Caregiver Notes) Caregiver Notes