Our actual client is not usually the person who first calls us. More often, we hear first from a family member who is overwhelmed by the burden of caring for a loved one who is mentally or physically declining. The cause of that diminished capacity varies widely—from dementia, Alzheimer’s, or Parkinson’s to an unending list of physical concerns such as arthritis and osteoporosis. Many of the calls concern a loved one who is already deep into crisis and at the end of their options.

Our typical client has a chronic problem that requires custodial care. In other words, our client is never going to get well. The governmental benefit known as Medicare limits coverage to skilled medical attention under a plan of care as authorized by a medical doctor. Medicare does not cover chronic problems; chronic problems that cause an individual to need a nursing home or an assisted living facility were never anticipated to be a benefit provided by Medicare.

In fact, the current societal crisis posed by the increasing need for long term care is a relatively new one. Not very long ago, seniors who were fortunate enough to live into old age were cared for in the homes of their children. Life expectancy was such that most died before the advent of chronic diseases like Alzheimer’s. Healthier lifestyles and advances in modern medicine means that Americans are living longer. Unfortunately, they are often out-living their ability to care for themselves.

The only governmental program that provides benefits for chronic/custodial care is Medicaid. When Medicaid was initiated, it was targeted solely for the poor. But as mentioned above, when Medicaid was born, very few individuals needed chronic/custodial care. As a result, our current benefit system provides Medicaid only when someone has a chronic problem and they have impoverished themselves to meet strict asset and income limitations.

A recent survey revealed that over 50 percent of the baby boomers (Americans born 1946 to 1964) falsely believe that Medicare will provide chronic/custodial care for themselves and their parents. They are shocked when they learn the truth—that Medicaid, with its impoverishment limitations, is the only governmental benefit available.

“Don’t worry — we are getting along okay.”

Recently I an elderly man visited my office to discuss his family situation. He is 82 and he is eight inches shorter than when I met him 30 years ago. He is bent over with scoliosis and arthritis of the spine. I wondered why his breathing was labored and realized that his curved spine is slowly crushing him. He lives in Montgomery, Illinois in a simple home that is paid for. He and his wife have what they perceive to be a comfortable retirement. Like many elderly citizens, their combined pension/Social Security income is approximately $2,200 a month; they have no mortgage; their real estate taxes are limited by the senior citizen freeze on real estate tax bills; they have Medicare health benefits; and their spending habits are modest. They own a home worth $150,000, they have accumulated $170,000 in CDs and roughly $20,000 in checking and savings accounts, and they have a little life insurance.

If they feel they have a comfortable retirement, then why is this man in my office? The answer is that he and his wife, like so many others of their age, can afford their retirement until a fall, a stroke, or a debilitating illness puts them into a situation where they need assisted living or a nursing home. His wife, age 81, is declining—yet when I ask him how he is doing, he tells me, “I’m okay. We’ve been handling things at home. But I am a little worried that I may not be able to help my wife live at home when she gets released from the hospital.” He goes on to tell me that she has arthritis in her back, shoulders, and hands. He adds that she is currently in the rehab center of a local nursing home recuperating from a fall at home that resulted in compression fractures of her vertebrae.

Several times he declares, “I don’t want to use Medicaid. I am afraid of Medicaid.” It is obvious that he doesn’t understand that Medicaid is his only governmental assistance option in the event that his wife must go into an assisted living facility or nursing home.

I explain to him that since Medicaid has rules to financially protect the non-nursing home spouse (the “community spouse”), he can keep the entire pension and Social Security benefit of $2,200 per month. In fact, if they had a monthly income of up to $2,378, he could still use all of it for his needs. However, since he has “countable assets” of about $190,000, he must spend down at least $95,000 of those assets before his wife can receive Medicaid for her custodial care. He responds to that information with confusion and anger — “Why would I have to do that? That is our retirement money. We need that!”

During the balance of our time together, he tells me that they have three grown children who will want to know what information I have shared with him. One daughter is a legal secretary. I invite him to ask her to call me. It is my experience that the children often know that the parents have needed assistance for a long time. In fact, many times the children have been pleading with a parent to seek professional help, but the parent responds with, “Don’t worry — we are getting along okay.”

For many of these older couples, a long-term care crisis is often as close as a fall or an illness that removes the caregiver spouse from his/her role. As soon as the aged and frail caregiver fails, one or both of these individuals will need assistance from somewhere. The modern American extended family is not well equipped to provide that kind of care.

Near the end of the interview, the husband caregiver finally volunteers in a low voice, “Well, she [the wife] is also having problems with her short-term memory. You know, she really can’t remember anything any more. I have to tell her things over and over.” Because this revelation is so painful, he shifts the conversation into a description about how much she loves to sit on their enclosed back porch and watch the birds. He describes the back yard as having had a lot of flowers and bird feeders, but adds, “Really, these days, I can no longer take care of the plants or keep the bird feeders filled.” This is the same man who is probably telling his children, “Don’t worry — we’re getting along okay.” Despite this denial, he no longer has enough strength, energy, or mobility to keep the bird feeders filled in the back yard. He is the hero of this story, as he lovingly serves as the caregiver for his increasingly arthritic, dementia-afflicted wife.

He leaves our office with general information. I don’t press him to make any sort of decision. He is not ready to face the reality that life as he has known it will never be the same. He or his children will call us again—when the plane crashes.

The role of the “kids”

“The kids” are from 30 to 80 years old. Another common scenario begins with a phone call from the second generation—the kids. In our work, “the kids” vary in age from 30 to 80. If Mom or Dad are in their 90s or over 100, it is possible to have children aged 60 to 80. The phone call begins like this: “My mom or dad is ___ years of age and it looks like we [the children] need advice on how to help them. Our folks have [$___ of monthly income] and [$____ assets], but the nursing home costs are [two times, three times, four times] their monthly income. Nobody made any plans for this. My parents never expected to live this long. I don’t know what to do. I can’t have them live with me, as I have my own [job/life/family/limitations]. Help me to help them.”

The call from the kids has several possible motives and underlying emotions, and it is seldom that only one motive or emotion is involved. Some of the possibilities:

• Love and responsibility — to provide the best care for Mom/Dad with the least destruction of their assets during their lives
• Love and responsibility — the need to lift the care/cost burden off the caregiver, who may be the caller him/herself or another loved one
• Fear of loss — the desire to conserve the benefits of the parental assets, either during the parents’ lives or at the time of their deaths
• Greed — the desire to get access to the parents’ assets so that they will not be “lost”
• Education — a prudent desire to discover what long-term care options are available
• Fear and confusion — a desire to discover a source of care and comfort at a time of great emotional and financial stress.

Some of the emotional issues:

• Guilt — for not being able to do more for a needy parent, spouse, or other loved one
• Shame — one man recently said to us, “I just can’t believe that I have to put the love of my life in a nursing home.”
• Anger —
  • “Why did my parents not plan better?”
  • “Why me? My siblings never help me take care of Dad.”
  • “I wish he/she would just die.”
• Fear — of loss of control, loss of assets, or facing the unknown
• Confusion — over conflict with declining parents. To provide care for a parent with diminished capacity, the child must often take over the parental role. This is a reversal of a lifetime of relationship—the child must become the parent, and the parent assumes the role of the child. This transition is fraught with conflict, confusion, and pain.
• Self-preservation — The children are worried about how much of their own limited resources must be used to provide parental care.

Recently I met four times in the home of some clients—a 92-year-old woman and her 86-year-old husband. I have known this couple for over 30 years. Their daily life is now reduced to their living room, kitchen, and half bath on the first floor. Their beds have been moved from the second-floor master bedroom into the living room. The slightly-built, frail-looking 86-year-old man assists his 92-year-old wife with her daily necessities. He really does not have the physical strength to lift her in and out of bed or to help her with bathing and dressing. Nonetheless, he does the best he can at great physical risk to both of them. They have hired in-home caregivers on a limited basis, but like many senior citizens, they cannot adjust to the idea that the minimum cost per hour of such assistance is $18 and up. So they try to get by and do whatever they can without outside assistance. They really should move to some sort of assisted living facility. They have the financial means to do so.

There is a hidden cost, although the cost is not to them: they are only able to live at home because their youngest daughter is sacrificially working to assist her parents in their home. She has tried to get them to hire more care or to move, but they refuse.

The daughter called me and demanded to know what plan I had for forcing her parents to take her prudent advice and move to an assisted care facility.

“I have met with your father and mother on four occasions in their home,” I told her. “Your father has been a fiercely independent businessman all his life and he refuses to give up any control of his finances or his health care unless and until he is totally unable to make decisions. Your parents could not live at home without your assistance, but your father will not move until he is in complete crisis. Neither you nor I can force a legally competent adult to take a ‘right action.’ I agree with you about the need, but I do not have the plan that you seek.”

She has not spoken to me since. Although she is the enabler, how can she stop?

The women carry the weight

As you can see, the long-term care burden often falls upon the women of the family. In their youth men may be physically stronger than women, but as they age, they are often the first to decline and the first to die. Compounding the problem, men also cling to a false machismo that causes them to deny their own mortality and to under-appreciate the catastrophic burden that their old age frailty will place on their wives or children. It is not uncommon, when talking to a man about the possibility of old age decline, to have him say things like:

“My dad died at sixty of a heart attack—I’m sure I’m not going to live any longer than that.”

“I won’t rust out, I’ll burn out.”

“Before I’ll go to a nursing home, I’ll put the muzzle of a gun in my mouth.”

“I’m gonna keep going until one day I just drop in the harness.”

It is a natural part of being male to assume, when presented with statistical data regarding the probability of a long-term care need, to think, “Bad things happen to other people, but that won’t happen to me.” The result of this attitude is that the women of the family are faced with caring for more and more frail men who have refused to purchase long-term care insurance or to modify their lifestyles to minimize the possibility of chronic illness. Women exhaust their own financial and physical resources caring for the men. By the time the first spouse dies, the caregiver spouse is often so depleted physically and financially that he/she needs long-term care.

We serve the client and more

The needs of our client are and must be paramount. If we serve well, we help rescue the embattled caregiver when hope seems lost. At LawElderLaw, we serve as allies to the heroic caregiver understanding their burdens, confusion, anger, hopelessness, sense of injustice, fear, and loneliness. Every day we work with families and individuals who are in crisis, so it is no exaggeration to say that we feel their pain. We work alongside them, so that they can find a measure of peace of mind, a caring and listening counselor, and possible financial and long-term care assistance. That is how we earn our living, but it is also our mission and our privilege.

Rick Law