A few weeks ago, a Kossack made a casual suggestion that we needed a law to force families to care for their elderly family members. In this diary, a few people were upset that anyone would have the gall to expect help from the government in paying for long-term care, and those who did were mooching off the rest of hard-working Americans, sounding remarkably as if they were quoting Republican talking points about any healthcare reform, actually. I’d like to take issue with those comments and also explain which a law "forcing" people to take care of their family members isn’t necessary and wouldn’t work.
First of all, I see little or no evidence that families dump their elderly relatives in a home and just walk away, leaving them to Medicare. I do have some experience with this. My father is 88 and is coming home Wednesday after 100 days in rehab at a long-term care facility after his second hospitalization for pneumonia since November (the elderly are very susceptible to infections of all sorts, but particularly pneumonia). I didn’t want to put him in the place, but he was virtually bedridden and I cannot lift him because of my own chronic back problems (born with a scoliosis , suffered an injury in high school that put me in a back brace for 4 months, am prone to facet joint syndrome which is hideously painful when it kicks in), and my husband can’t do it all. As a result of Dad living with us, I have a fair understanding of the law and some familiarity with nursing homes. My husband also worked at one as CNA for 18 months and has hands-on knowledge.
The law basically says you cannot just dump an elderly relative in a nursing home unless they need skilled nursing care. Only at that point, Medicaid will kick, and they must "spend down" their assets before the government pays for it all. Their definition of requirements for skilled nursing care are very stringent. Being bed-ridden or confined to a wheelchair, needing help with every basic task of everyday life—feeding, bathing dressing, changing diapers—are not enough to meet it, event though it requires someone with them 24/7. Neither does merely suffering severe dementia from Alzheimer’s Parkinson’s or vascular issues. All the things I described above aren’t covered. Nor are assisted living facilities for mainly healthy people who just need some help. The family (or the assets of the elderly person) must pay for it until the person has nothing and qualifies for Medicare. The spouse may have the right to live in the couple’s residence until they die, but that varies by state; it may be seized to pay for care. Family members who have moved in with that person and provided unpaid custodial care for them, often for years, are entitled to absolutely nothing. After a three day hospitalization, an elderly person is eligible for 100 days of rehab at a facility—but he or the family or Medigap insurance must pay 20% of the costs or $125 a day (that’s about $3800 a month). We were fortunate that Dad’s insurance picked up that 20%. So no one just mooches off the government. I went into detail in the diary I posted a link to.
Nor have I seen any sign that families are just dumping their families and walking away. The residents at these facilities are usually very old, very sick or require intense care and supervision from a nurse. Anyone who thinks otherwise, needs to visit a nursing home. Yes, there are some relatively healthy people with minds that are clear, often severe stroke victims who do require a great deal of physical care that senior citizen children can longer give. Most of the patients, however, suffer from some form of dementia or are completely bedridden. Almost all are incontinent, and many cannot feed themselves. Some cannot even swallow and are either given pureed meals and thickened liquids, or have feeding tubes. You hear people making involuntary noises (often loud shrieks or wails) which are disturbing. You see people who don’t know who they are or where they are and who are, essentially, lost because of the brain damage due to Alzheimer’s. It is heart-breaking for family members, who have cared for these people, often for years, and watched them decline until the spark of awareness which makes us truly human, leaves their eyes. If you have no idea how exhausting (emotionally and physically) caring for someone with moderate to severe dementia is, you really don’t know what you are talking about. I’ll cover that in a follow-up diary I’ll post another day.
Suffice it to say that it takes a toll on everyone involved. Most states don’t pay for respite care, which means a couple have no couple time, which puts a strain on the marriage. Respite care runs $22 an hour for a sitter with some minimal training in dealing with the elderly from a bonded company. A sitter without any bond costs about $10 an hour, but they likely have no training. Daycare for adults runs around 12 bucks an hour or $50-75 a day. Just getting out to do errands is expensive, forget going out to dinner and a movie. Usually there is one primary caregiver, who often has to quit a job, which means lost income as well as increased expense. There often isn’t a sibling to spell them, because these days people don’t stay within a short drive of their hometown; siblings could live several hours away or across the continent. The sibling who takes in that parent is usually on his or her own, as I, an only child, am. and that most people put their family member in a facility only after they have reached the point where the caregiving is wearing them to a breaking point.
Long-term care insurance is a suggestion someone came up with, asserting when he hit 40 (apparently quite a long time from now), he’d buy some. Problem is, what seems like a reasonable amount at age 40, is gonna be a tiny fraction of the cost by the time you need it. Dad pays $75 a month for coverage worth $50 a day, and covers little in the way of in-home care or respite care. My Dad was a brilliant man. When he worked, he was usually a controller of a company. I am certain that when he bought that policy 45 years ago, $50 a day seemed like a petty good deal. Bluntly, unless you are quite well-off, in which case you likely won’t need it, you can’t afford to buy a policy which will actually cover the expenses of long-term care when you finally need it. We’re lucky that his Medigap insurance paid for the $125 a day for his rehab—because we are on a fixed income ourselves while my husband is in school, and no way could we have afforded it. Oh, and his long-term care policy doesn’t cover it.
The second and more important point is that forcing family members to care for an elderly relative gives them a burden without the authority to fulfill it. Contrary to what some people think, the elderly don’t lost their rights just because they’re old. They have the same rights to make decisions about their finances, their healthcare, and their safety as any other adult, unless or until they are deemed incompetent. The family may think they need supervision but they don’t have to agree. You cannot move them into your home without their agreement. You cannot force them to go a doctor. You cannot force them to go a hospital if they are sick. We ran into that last one in January when Dad had pneumonia and his breathing was terrible. He refused to get dressed and get in the car to go to the ER. In fact, he became physically violent—shoving my husband away—and accused of us of abusing him. We had to call an ambulance. The EMTs told us if he refused to go, they couldn’t force him, even though he suffers from Alzheimer’s. They have the right to refuse help and to refuse medical attention.
The only way around this is to gain guardianship (which covers medical care and living conditions) and conservatorship (primarily financial. And that is a time-consuming and expensive process requiring a lawyer and experts for which the family member must pay.
Here’s what my state requires to do this:
In Georgia the Court requires that a petition be brought by either one petitioner and a physician, psychologist, or licensed clinical social worker, who will submit an evaluation of the proposed ward based upon an examination within fifteen days prior to the filing of the petition; or two petitioners.
If the Court accepts the petition, it will assign a physician, psychologist, or licensed clinical social worker to evaluate the proposed ward and file their report with the Court and a hearing will be set.
Many times at the hearing, if the Court learns that the proposed ward has already put in place advanced directives and upon their review the Court rules that these directives can accomplish basically the same needs of the proposed ward as a guardian would be able to; then the Court will dismiss the guardianship proceedings because the need for a guardian will not be met.
http://www.atlantaestateplanninglawy...
Just having moderate to severe Alzheimer’s isn’t enough. After Dad’s first hospitalization for pneumonia in November, I sat down with a social worker who explained how hard to get it was, no matter how unsafe the living condition or peculiar the behavior. He mentioned one man who lived in his mother’s home to which he’d retired. He had no indoor plumbing or running water (he used a pump outside), although he did have a phone and electricity. He cooked on a wood burning stove. Not exactly the best living conditions for an 85-year-old man who lived alone. But he showed no signs of dementia and was physically pretty healthy, so she had to tell his family that they likely couldn’t gain guardianship over him if they filed a petition. She ha another client who showed some definite signs of impaired reasoning (he greeted her at the door stark naked, and apparently made a habit of it, to the point where neighbors had complained to the family), but not enough to make him a good candidate for guardianship. Another problem is that Georgia permits the subject of the petition to speak for himself or engage a lawyer to fight the petition. If he’s having a good day, s/he can sound coherent and in control of his/her faculties, long enough to convince the judge (Dad has days when he’s sharp and knows what’s going on, and other days when he confabulates and regales us with stories of things which never happened). The elderly relative really has to be severely impaired or a danger to his or her self or others before the court will grant guardianship.
One other thing of note. One f the first things I learned when Dad moved up here is that if that relative lives with you and has Alzheimer’s (Dad had had three fender benders in 18 months, and FL was requiring letters from his doctors stating he was fit to drive; those letters were how I learned he had Alzheimer’s because he hadn’t told us, and his doctor couldn’t) and insists on driving—you’re screwed if he has an accident. In GA, the family can also be sued if he physically harms or kills someone. The first thing we did was take away his keys. We had to hide them. Life was sheer hell for a couple of weeks as he accused us of keeping him prisoner and taking away his independence and his freedom and hating him. MiL (we were living with her till we got a suitable place to live for all 3 of us) was on his side and told us how horrible we were to "a sweet old man"—until I told her what they Alzheimer’s group had told me, and that, since he was under her roof, she too could be sued. Only then did she back us. Eventually Dad got used to it, and now rather likes having chauffeurs, although he does expect us to drop everything and do whatever he wants instantly (well, Mom behaved that way, so he’s spoiled). He’s having to learn patience.
That’s the basics of elder law and who pays for what. My personal opinion is that the law needs to be changed so that the elderly don’t have to impoverish themselves to get the care they need. The government also needs to provide some recompense for the care family members give because it’s one hell of a lot cheaper to pay them a couple of hundred a week (less than half the cost of a day in a facility) than to place them in a long-term care facility, and they usually get better care in a familiar and far more pleasant living situation. The law also needs to recognize that a family member can’t do it alone and that respite care ( at least 12 hours a week) is a necessity because people can’t give terrific care 24/7 without a break. Hell, they can’t even do basic errands like shopping which take them out of the home, let alone time for themselves. This reform must be included in any healthcare reform, because the eldercare system is modeled after situations (several siblings sharing care of a relative, most of whom—usually daughters-- don’t work) which are no longer typical of how we live. Eldercare needs a reality check, because the system as it stands is broken, badly.