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Caregiving for people with dementia cuts across every demographic group you can think of. It is the job of the well-educated (more than 40 percent have at least a college degree), as well as those with modest incomes (41 percent have a household income of fifty thousand dollars or less).<\/p>\n
One-third of Alzheimer\u2019s caregivers are, like me, over the age of sixty-five. But some caregivers are young children. A 2005 study by the National Alliance for Caregiving found that 250,000 kids in this country between the ages of eight and eighteen provide help to persons with Alzheimer\u2019s or another form of dementia.<\/p>\n
As you become an Alzheimer\u2019s caregiver, you do so without the benefit of training. Those professional home health aides I mentioned a minute ago? Federal regulations require seventy-five hours of training to get a job with a Medicare-certifed home health agency, according to the Paraprofessional Healthcare Institute. (In my home state of Wisconsin, it\u2019s 120 hours). For family caregivers, though, it\u2019s learning on the job, a baptism by fire.<\/p>\n
Being an Alzheimer\u2019s caregiver takes a tremendous toll, but it happens in such a gradual way that you may not notice how harmful it is to you. Exercise? Eat healthy?<\/p>\n
Who has time for that? Managing your own health can be that \u201cone more thing\u201d you can\u2019t squeeze into a day that\u2019s already filled up with doctor appointments, newly inherited household chores, and possibly your own job responsibilities.<\/p>\n
Trudging up the Alzheimer\u2019s mountain can sap all your physical and emotional strength. But I am here to tell you that you must make it a priority to be healthy yourself in order to be an effective caregiver. This is not negotiable. How do you keep yourself healthy? You get help. You take classes. You talk to people who have been through this. You cannot do it alone, as I tried to do. The proof is in the numbers and illustrated by my own experience.<\/p>\n
Consider this: people with Alzheimer\u2019s who are sixty-five and older survive, on average, four to eight years afer their diagnosis. Some live with the disease as long as twenty years. When your caregiving burden means you give up a healthy lifestyle, you\u2019re stacking the odds against yourself, leaving you with the sickening possibility that your partner with Alzheimer\u2019s will outlive you. That\u2019s got to be one of the cruelest twists of this terrible disease.<\/p>\n
Maybe you\u2019ve read the \u201cTwelve Steps for Caregivers\u201d by Carol J. Farran and Eleanore Keane-Hagerty, who have studied and written about Alzheimer\u2019s and caregiving for years. It\u2019s based on the many twelve-step programs for people with addictions and has been around since 1989, when it was published in an Alzheimer\u2019s-related medical journal, and it still pops up on websites, blogs, and social media. Right there in black and white it says a caregiver should recognize this: \u201cI need to take care of myself.\u201d It was good advice twenty-five years ago, and it\u2019s good advice today.<\/p>\n
Think of the emergency instructions you get on an airplane\u2014you have to put on your own oxygen mask before you can help others with theirs. No matter how much you love your partner, you can\u2019t take good care of him or her if you don\u2019t first take good care of yourself. I didn\u2019t realize how important that was until it was almost too late. I don\u2019t want that to happen to you.<\/p>\n
When Elaine was well, and even after she first was diagnosed, I\u2019d work out many weekday mornings with my friends. But as her mental decline continued, her body clock was a affected, and that of course threw off my own sleep. If she was awake, I felt I should be awake too to make sure she wasn\u2019t wandering around or doing something unsafe. Sometimes, she\u2019d ask and re-ask me questions but not any old questions. Instead, her queries packed an emotional punch.\u201cAre we married?\u201d \u201cDo we have children?\u201d \u201cDo I have Alzheimer\u2019s?\u201d \u201cIs it bad?\u201d \u201cWhy do I have it?\u201d Just try getting back to sleep after that!
\nBy the time we got up for the day, many times, she\u2019d be confused and agitated . . . and I\u2019d be exhausted and cranky. I simply couldn\u2019t leave her home alone in the morning to go to the health club. One missed workout led to another and another and . . . The theme from Rocky, the William Tell Overture, and \u201cOn Wisconsin\u201d combined would not have been enough inspiration to push me out the door. Over the span of a year and a half, I put on twenty pounds.<\/p>\n
Elaine, meanwhile, also put on weight, probably eight or ten pounds. Sometimes, she couldn\u2019t remember whether she\u2019d eaten lunch. When in doubt, she\u2019d make herself a peanut butter and jelly sandwich.<\/p>\n
Carrying that extra weight\u2014and I don\u2019t just mean the pounds\u2014meant I couldn\u2019t even go up the stairs at home or my office without having to stop and catch my breath. Even when I was just walking, I often got short of breath. (My temper ran short, too . . . more on that in chapter 5.)<\/p>\n
I already was a cancer survivor, having been diagnosed in 2006 with non-Hodgkin\u2019s lymphoma. I went through six cycles of chemotherapy over a six-month period with side effects that included low energy, nausea, and hair loss. Still, I remained confident that the treatment would work. And it did. So while I hated the idea of more clinics and exams for myself, I had to get some answers. The doctors quickly focused on a variety of heart issues.<\/p>\n
Over a three-and-a-half-year span, from 2009 through late 2012, I underwent several procedures and also had a pacemaker installed. Still, I never felt quite right. I rang up more than $260,000 in medical bills as various doctors took their turns examining me, ordering tests and lab work, and even having me admitted. My wife was the one who was sick. Why was I the one in the hospital? My doctors blamed COPD (chronic obstructive pulmonary disease, a progressive lung disease), asthma, excess fluid in my upper chest, sleep apnea, and even a rare type of high blood pressure that a affects arteries in the lungs and in the heart. Or maybe it was a combination of sheer exhaustion, acute anxiety, depression, and grieving.<\/p>\n
No doubt about it, I was breaking down physically and emotionally. Would I ever learn to protect my own health? Yes, I wanted to take care of my wife, but I didn\u2019t want to be a dead hero. So, in December 2011, I finally contacted the Alzheimer\u2019s Association for help. Through the association, I met another Alzheimer\u2019s caregiver who became my mentor. He told me he\u2019d had a heart attack, despite having no history of heart disease. That was all the wake-up call I needed. At long last, I was open to using the association\u2019s resources and suggestions.<\/p>\n
Everyone is familiar with the concept of an adrenaline rush, a burst of energy that we associate with a fight-or-flight stress, cortisol just keeps flooding into our bodies. Without physical activity or other stress-busters, the levels just stay high and wreak all sorts of havoc. According to the Mayo Clinic, stress is linked to heart disease, mental illnesses, digestive problems, sleep problems, weight gain, and\u2014here\u2019s the ironic one for Alzheimer\u2019s caregivers\u2014memory and concentration impairment. I\u2019ve heard some health experts call chronic high stress a ticking time-bomb. At least now I know my enemy\u2019s name: cortisol.<\/p>\n
Here\u2019s some more science. A team at Ohio State University and the federal National Institute of Aging spent nearly three decades investigating the links between psychological stress and a weakened immune system. The study, released in 2007, was much more than a survey. It included a comparison of blood samples of Alzheimer\u2019s caregivers to those of non-caregivers that revealed a difference at the genetic and molecular level. The scientists concluded that the chronic stress of Alzheimer\u2019s caregiving may shorten spouses\u2019 and children\u2019s lives by as much as four to eight years. Think about that: that\u2019s four to eight years you won\u2019t see your grandkids grow up.<\/p>\n
The Mayo Clinic, Ohio State University, and the NIA aren\u2019t alone in looking at the possible links between Alzheimer\u2019s and caregiver health.
\nWhat I wish I\u2019d done<\/p>\n
I should have started earlier to search out adult daycare so that I could reclaim part of the day for myself, including time for exercise.
\nEveryone is familiar with the concept of an adrenalin rush, a burst of energy that we associate with a startling, fight-or-flight event. It turns out other hormones also are released into the body in stressful situations. One of these is cortisol. It was useful to cavemen who had to outrun an attacking animal. But in our modern world, we rarely need that extra spurt of energy and actually find it works against our survival. When we live with constant stress, cortisol just keeps flooding into our bodies. Without physical activity or other stress-busters, the levels just stay high and wreak all sorts of havoc. According to the Mayo Clinic, stress is linked to heart disease, mental illness, digestive problems, sleep problems, weight gain, and \u2014 here\u2019s the ironic one for Alzheimer\u2019s caregivers \u2014 memory and concentration impairment. I\u2019ve heard some health experts call chronic high stress a ticking time-bom. At least now I know my enemy\u2019s name: cortisol.<\/p>\n
Here\u2019s some more science. A team at Ohio State University and the federal National Institute of Aging spent nearly three decades investigating the links between psychological stress and a weakened immune system. The study, released in 2007, was much more than a survey. It included a comparison of blood samples of Alzheimer\u2019s caregivers to those of non-caregivers that revealed a difference at the genetic and molecular level. The scientists concluded that the chronic stress of Alzheimer\u2019s caregiving may shorten spouses\u2019 and children\u2019s lives by as much as four to eight years. Think about that: that\u2019s four to eight years you won\u2019t see your grandkids grow up.<\/p>\n
The Mayo Climic, Ohio State University, and the NIA aren\u2019t alone in looking at the possible links between Alzheimer\u2019s and caregiver health.
\nIt\u2019s certainly a hot topic for anyone interested in health care reform and holding down expenditures. Back in 2010, economist Brent Fulton from the University of California, Berkeley, determined that Alzheimer\u2019s caregivers spend 8 percent more on health care than non-caregivers. In a more recent estimate, the Alzheimer\u2019s Association calculated that in 2015 the physical and emotional impact of dementia caregiving in the United States resulted in an estimated $10.2 billion\u2014again, billion with a b\u2014in health care costs.<\/p>\n
As the research continues to reveal the unfortunate implications for the health of Alzheimer\u2019s caregivers, you continue to climb the Alzheimer\u2019s mountain.<\/p>\n
To me, being an Alzheimer\u2019s caregiver is like being the fictional boxer Rocky Balboa in a pitched battle against a much stronger opponent. The disease can back you into a corner. You have to maintain your footing as you swing away. You\u2019re trying your damnedest to fight back while also struggling to control your own emotions. At the same time, you\u2019re absorbing some awful body blows like depression, anxiety, and grief. Each time there is another indication that your partner\u2019s mind is being affected, it\u2019s another blow.<\/p>\n
Unlike Rocky, you\u2019ll never be able to defeat Alzheimer\u2019s, and if you\u2019re not careful, those blows, bit by bit, will defeat you in the trying. Work to understand the illness, and get the help and support you need to respond to it. That\u2019s the best path up the mountain.<\/p>\n
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*** Caregiving for people with dementia cuts across every demographic group you can think of. It is the job of the well-educated (more than 40 percent have at least a college degree), as well as those with modest incomes (41 percent have a household income of fifty thousand dollars or less). One-third of Alzheimer\u2019s caregivers […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"sfsi_plus_gutenberg_text_before_share":"","sfsi_plus_gutenberg_show_text_before_share":"","sfsi_plus_gutenberg_icon_type":"","sfsi_plus_gutenberg_icon_alignemt":"","sfsi_plus_gutenburg_max_per_row":"","_monsterinsights_skip_tracking":false,"_genesis_hide_title":false,"_genesis_hide_breadcrumbs":false,"_genesis_hide_singular_image":false,"_genesis_hide_footer_widgets":false,"_genesis_custom_body_class":"","_genesis_custom_post_class":"","_genesis_layout":"","footnotes":""},"class_list":["post-513","page","type-page","status-publish","entry"],"yoast_head":"\n