I didn’t make a New Year’s resolution this year. Instead, I made a New Year’s wish—and wrote a letter to Barack Obama urging him to take a hard look at the way we care for the elderly in this country. Because the system isn’t just broken, it sucks pickled, diseased alligator dick (yeah, that’s a pretty disgusting thought, but so is the state of the elder care system).
A lot of you will be tempted to skip this. After all you’re only in your 20s or 30s, so this doesn’t apply to you. Allow me to rain your parade. Every single one of us will be old some day (yes, even you). And even sooner, every single one of us will have to care for elderly parents. So this issue affects all of us. Work to get it fixed before it does apply to you.
Some of you have been kind enough to wonder why I’ve been absent from DKos so much lately. This diary should answer your questions. I simply haven’t had much time, for the reasons described below, and I sorely miss it.
I was like you once. But that changed three years ago when my mother died. My father was 85, and insisted on living alone in Florida after her death, despite having Parkinson’s and (I learned much later) early stage Alzheimer’s. By the time we finally persuaded him to move up here, the housing slump had begun and, two years later, is still up for sale, having lost over 25% of its value. We co-own a house here, and, like everyone else, are praying that the slump ends and people start buying homes again. We are living on two fixed incomes—Dad’s Social Security and my husband’s Navy pension. My husband took time off from nursing school to help get Dad stabilized .
My husband and I are Dad’s sole caretakers. I am an only child and his only living relative. There is no one else we can turn to for help (financial or emotional), and the stress levels are high and constant. If my husband weren’t here to help, I’d have had no choice but to tell him to go into assisted living because I have back problems and am unable to lift him if he falls, which he does frequently. Dad has some longterm care insurance but he doesn’t wish to discuss it with us.
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Dylan Thomas
Dad seems to have taken that quotation to heart. He is not going gently into that good night. In fact he’s fighting every step of the way—and that includes fighting us when we try to help him. He refused to take anti-depressants and claimed he had no issues, though it was plain to the doctor and us that he was in agitated depression (alternating between tear and fury at the world for continuing to turn after Mom died). The doctor finally prescribed some for him to help him sleep (Ambien made him sleepwalk and fall). Never an easy man to get along with, he has become an unholy blend of General Patton and Dubya. As his Alzheimer’s progresses, he is likely to become much more difficult to deal with, not less.
How difficult caring for an old person depends on two factors: the state of his health, both mental and physical, and his personality. Until very recently, Dad’s physical health wasn’t bad. Except for the Parkinson’s, he was in pretty good health with normal cholesterol and blood pressure. His Alzheimer’s wasn’t advanced. He mostly has trouble remembering minor things and would sometimes have to ask the same question repeatedly before the answer stuck. He can, however, still hold an intricate discussion of politics, and can tell you precisely why Wolf Blitzer is an idiot. Unfortunately, he is beginning to "sundown"—after 10 pm, he can become confused and difficult.
His personality is the major problem. Dad is, and always has been, a control freak. Like many WW II era men, woman have catered to him his entire life. His mother couldn’t give him much materially, but she lavished time and attention on him. Mom picked up where she left off. Since my maternal grandparents lived with us until they died, he now had two women in residence who made sure he was taken care of. Dad’s day began with breakfast waiting for him, prepared by my grandmother. He went to work, drove home, and had dinner with Mom (my grandparents and I ate earlier). Then he put on his pajamas and watched TV in his bedroom. Mom worked full-time, and she helped my grandmother with housework (I had chores, too), but I don’t recall Dad every doing anything around the house, not even yard work (my grandfather had a green thumb and enjoyed caring for the lawn and the plants). He did start doing lawn care after my grandfather died, and after he retired he did occasionally pitch in around the house, but his help was minimal.
Dad’s personality makes everything twice as difficult as it should be. He will refuse to do things—like asking for help when he stands up—he knows are needed for his safety simply because we are the ones asking him to do them. This is his way of asserting his control over us, his authority over me. The words "please" and "thank you" seem to be reserved for strangers or my mother-in-law. I get orders. He expects us to cater to him and allow him to boss us around. I know that some of this is based in fear f having no say in his life—but there’s also the fact that Dad has always been the Decider in the house, and that his behavior is completely consistent with the way he’s always been. He seems to need to make damned sure that I know my place. He did the same thing when, after losing my first husband, I moved in with him and Mom in Florida (only good thing that came out of that decision was my second marriage). Back then, he made it clear that he called the shots by refusing to give me a house key and requiring that I call home if I was gonna be out later than 11 o’clock( I was 35 at the time)! This is more of the same, Dad declaring that "you aren’t the boss of me". He flies off the handle at times. On one occasion when I was trying to either get him up or persuade him to move to the center of the bed to prevent a fall, I tapped his foot, and this little old man who could barely sit up without help was suddenly sitting bolt upright and shaking his fist at me. When he drew that fist back to slug me, I took a step out of range and told him that being old didn’t give him the right to strike me. It is a lot like dealing with a recalcitrant, moody, angry 13-year-old..
Throw in the fact that he’s deaf, and likes to listen to his TV at roughly the volume of a Marilyn Manson concert, and we ended up with screaming headaches from January to July (when I found someone to repair his malfunctioning hearing aid and told him he would shell out cash to get it fixed; did I mention he’s Scrooge’s evil twin when it some to spending money?). During his second trip to the hospital, the staff lost that hearing aid, so for the last two months we’ve been back to dealing with the noise level. We’ve asked him to keep the door closed, and to close it when he gets up to sue the bathroom and re-close it when he is back in his den—but he has informed us that "inhumane and unnatural" and mostly refuses to do it, so we’ve got one more issue to deal with again. Today he gets his new hearing aids, thank the Lord and the Lady.
While Dad’s personality makes it harder, we still face the same issues that everyone faces. We have no life outside caring for Dad. We can’t leave the house for more than a brief period of time out of concern that he will fall and hurt himself. Our days revolve around him. Getting him up and bathed and dressed takes an hour, even when can actually dress himself, because the Parkinson’s tremors and balance issues make it impossible for him to shower and shave himself without someone there as back-up. Using the toilet is a similar problem. He is continent, but has had several falls getting off the toilet. Getting him from his TV to the kitchen for a meal takes a good 5-7 minutes to walk the 30 or so feet.
Mealtime has its own challenges. Because of the Parkinson’s and also arthritis, eating takes a much longer time than it would for healthy person. He has tended not to talk at dinner, as if the notion of dinnertime conversation is something he’s given up. We actually got him back on track about that by telling him it was his turn to get the ball rolling, even if it’s only telling us what movie he watched or what CNN has been pushing. His manners seem to have disappeared—instead of asking us politely to pass him things, he prefers to bark commands at us. After one particularly trying lunch at which he glared at me and said, "Knife, irishwitch," I told him that until he could treat me with the respect due me as a human being—respect he was willing to show waitresses at restaurants—I wasn’t talking to him. It took 35 hours, but we got the point across.
The major source of contention is Dad getting out of bed in the middle of the night to use the bathroom. With only a nightlight on and still half asleep, he was a danger to himself. He refused to wear Depends or stay in bed. Instead he’d get up and fall, urinating all over himself, the bed and the carpet. On one particularly bad knight, he went through three pairs of pajamas and sheet changes, and he fell so hard he ended up with bruises all over his chest that looked like he’d gone ten rounds with Iron Mike Tyson on steroids. He ended up in the hospital with pneumonia as a result, and we ended up having to deal with Adult Protective Services (Bambi the Teenage Social Worker quickly realized that we weren’t beating him, and that he was receiving good care, so after a month the file was closed). The only way to keep him safe was for someone to sit with him while he slept, and that just wasn’t feasible because even if The Packhorse took the night shift, I’d still have to wake The Packhorse up if he fell because my back doesn’t permit me to lift him. After a few nights of that, we gave up, and talked to his doctor, who prescribed an anti-depressant which has gotten him back to sleeping through the night.
Even with some issues settled, the biggest problem is that we never get a break from this constant care. There is no such thing as couple time. The only reason I can write this today is The Packhorse has taken him to get his new hearing aids before taking him back to the facility where he’s getting physical and occupational therapy for the next three weeks after his third and most recent hospital stay (once again he spent the night on the floor and got pneumonia again). Essentially, there is no relief for caretakers unless you can afford to pay a sitter (not an aide, just an unskilled person to babysit)—and that costs around $50-75 for a day of freedom to run errands and maybe grab dinner alone. That means to have one day a week to ourselves, we have to spend $200 to300 a month. Since we live on a combined income of 30K a year, we don’t have that kind of money. We pay the bills up here, and Dad pays for all the stuff on his unsold house and his insurance and other bills. There isn’t much left over after the bills are paid. Medicare doesn’t help out, and he has too large an income to qualify for Medicaid. The state of Ga offers no help at all.
Let me repeat that. Medicare does snot pay for respite care, nor does my state. Probably your state is the same. If you are an average family, there is no help for caretakers.
Why is that?
Medicare is built on an outdated model of American lifestyle circa 1960. It assumes that there is more than one child to care for aging parents, and that all those siblings live nearby and are willing and capable of pitching in to help the primary caretakers. It assumes that women work for pin money, not to pay the bills, and that a wife leaving a job won’t cause serious financial harm for the family. It also assumes you have friends and church community who are willing to provide you with support. Increasingly, those assumptions are proving false. Even if you have several brothers and sisters, it’s unlikely that all or most of them live nearby. Today, people don’t stay in their hometown their entire lives, but go where the jobs are, so the chore of caring for parents tends to fall on the shoulders of one person. Even if you are lucky enough to have someone nearby, they may well be unwilling or unable to sacrifice their money and their time to help out because they can’t afford to. They may have young children or kids in college. They may need the money the wife ) or husband’s) job brings in just to keep afloat. Medicare needs to be revised and reformed to reflect the reality of the lives of caregivers.
First of all, respite care paid for by the government is a necessity. Even if it spent $400 a month for once a week respite care, that’s considerably cheaper than the cost of a nursing home—which run around $4 grand a month. And [ Medicaredoesn’t cover nursing homes without a large co-payment, paid out of the patient’s possessions and savings, until they qualify for Medicaid--in other words, forcing the elderly into poverty to get the help they need. People can be in nursing homes for several years. Often they are placed there not because they need skilled nursing care but because the caregivers are bloody exhausted and worn-out emotionally and to continue shouldering the burden alone. And Medicare doesn’t cover any non-custodial care, the kind my husband and I provide 24/7.
If I had my druthers, the government would pay caretakers $600 a month so they could afford to hire respite care themselves. People tend to get better care at home, are more comfortable among their own belongings and have more dignity in a home setting. It’s also a huge savings for all of us financially—and as the number of elderly increases, the amount spent on their care will likewise increase. Think about that, 20 and 30 something—because this burden will fall on you as well as on us, the Boomers.
Obama does mention on his website helping families who care for elderly relatives some help. It needs to happen now. Yes, Medicare and Medigap insurance are of some help ( Dad’s two weeks in the hospital for pneumonia would have cost us $50 thousand, and we’d be filing for bankruptcy without them), but they don’t go far enough. Caregivers need real help, not just words. I hope--no, I believe--that Obama will provide that help, though it will likely come too late for us.