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Have you ever had the experience of hearing a brilliant speaker share a truth with you that wrings your gut? The kind of feeling you get when you find out that the car you bought has the worst service record in automobile history, or the company whose stock you bought will be declaring bankruptcy? You double up inside, like you just got punched in the gut. It’s a sick kind of “AH HA! moment.” Well, this is what happened to me while listening to University of Pennsylvania neurologist Dr. Jason Karlawish speak to a group of lawyers about clients who may have Alzheimer’s disease or some other type of dementia. During the last eight years as an attorney I have specialized in long-term illness.  Every day I learn more about the subtleties and surprises within the elder care journey. At Law Elder Law we often work with families who have a loved one affected by some type of dementia. As we non-medical people observe folks with memory loss, we assume that the individual is losing his or her memory on a constant downward sliding path.  According to Karlawish, however, that is not the right way to think about memory loss. Dr. Karlawish taught us that we need to change the way we look at memory loss.  He helped us understand that different brain functions are affected with differing rates of decline. “Attorneys are linear thinkers. You are trained to think in a linear and logical fashion, and so you believe that if your clients can give the correct answer to a fact based question, then they are still capable.  You assume that if they know that 2+2=4, then they are capable of managing their affairs.” He shook his head and stated, “Nothing could be further from the truth.” It turns out, someone who is suffering from dementia can retain their linear thinking, but lose their ability to comprehend the consequences of what that answer means. As I listened to him speak, it hit me that this was exactly what was happening with one of my clients. This client was responsibly caring for his wife, but the family was continually calling to tell me that “Bill” was making foolish decisions with money, and it was running out at a frightening rate. But when Bill came into my office, nothing seemed to be wrong; he drove himself, he brought his accounting books and we would go over his records together. He seemed capable of handling all his affairs because he gave me all the right answers. Nonetheless, within the next day or two he would do something as bizarre as hiring an $800 ambulance service to get his wife to her weekly hair appointment. Suddenly I realized that although Bill was able to tell me how much was in his bank account, he could no longer understand the meaning of those numbers. If someone you know seems to be on that slippery slope of memory loss, but you keep reassuring yourself that they’re okay because they understand that 2+2=4, it’s time to consider that they may not know what the implications of that solution means. If you are perplexed about a family member’s actions, it may be time for a visit to a neurologist.
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I received a phone call the other day–a call from a person who is sinking.  Not from an elderly client himself or herself–but from the caregiver child.  In my office “the kids” don’t play with Barbie or G.I. Joe anymore. They 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.  A phone call to our office often begins like this: “My mom is elderly and ailing, and my siblings and I need advice on how to help her.  Our folks have a decent monthly income and assets, but the nursing home costs are three times that much! Nobody made any plans for this. My parents never expected to live this long. We don’t know what to do.  I can’t have them live with me. Help me, please.  I don’t know what to do for them.” The call from the kids has several possible motives, and more specifically, several underlying emotions:
  • Love and responsibility: to provide the best care for mom or dad with the least destruction of their assets during their lives.
  • Seeking relief: the need to lift the care and cost burden off the caregiver, who may be the caller himself 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 the assets will not be “lost.”
  • Confusion: Looking for a source of care and comfort at a time of great emotional and financial stress.
  • 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 would just die.”
  • Frustration: over conflict with declining parents.
  • Self-preservation: worry about how much of their own limited resources must be used to provide parental care.
Often we get a phone call from the child or spouse caretaker because the person in need of care isn’t ready to admit yet that they need help.  We can’t force a parent to get assistance, but we can be the “voice of authority,” to tell them when it’s time to start letting go and facing reality.  It is our job as elder law attorneys to help our senior clients–and those who love them–make tough end-of-life and long-term care decisions.  We walk alongside of them and serve as a guide through the elder care journey.
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Nationwide evidence tells us that the long-term care burden overwhelmingly falls on the women of the family.  In their youth men are generally physically stronger than women, but as they age they decline more quickly.  Compounding the problem, men often cling to a machismo that causes them to deny their own mortality and to under-appreciate the catastrophic burden that 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 such as:
  • “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 seems to be a natural part of being male to assume that bad things happen to other people, not to yourself.  The result of this attitude is that the women of the family are faced with caring for more and more frail men who have either refused to purchase long-term care insurance, or refused to modify their lifestyles to minimize the possibility of chronic illness.  Women are forced to exhaust their own financial and physical resources to care for their men.  By the time the first spouse dies, the caregiver spouse is often depleted both physically and financially.  She has no reserves as she faces her own long-term care crisis. At Law Elder Law we not only strive to serve our client, we also strive to help rescue the embattled caregiver.  Survivor spouse preservation is one of our key goals when working with a couple who are faced with nursing home challenges. We recognize the contribution of the women who carry the burden of their own parents, their husbands’ frail parents, and/or their own husbands.  We serve as allies to the heroic caregiver.  We understand their burdens, confusion, anger, hopelessness, sense of injustice, fear, and loneliness.  We come 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 by calling us here at Law Elder Law.
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A sweet 82 year old gentleman shuffled into my office the other day. I have known him for over 35 years, so I could not help but notice that he is now bent over with scoliosis and arthritis of the spine, and his breathing is quite labored. Salt of the earth, he is; He and his wife have a simple home, and are frugally living on what they perceive to be a “comfortable” retirement. Like many seniors, their combined pension/Social Security income is approximately $2,200 a month. This man is in my office because his wife, age 81, is declining—she has arthritis in her back, shoulders, and hands, and 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. She is also having problems with her short-term memory. 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 strong enough to help my wife when she gets released from the hospital.” The ideal solution for this all-too-common situation would be for the couple to hire some in-home nursing care on a long-term basis, or perhaps a move to a long term care facility. However, when I suggest this to clients the reaction is often fear, or resistance at the very least. They aren’t ready to take that step yet; they don’t know what it entails, and are afraid they will lose their independence. Many of them also feel they can’t afford the cost of long term care, and are determined not to resort to Medicaid. In fact, when I mention Medicaid to the client whose story is featured in this post, his reaction is strong: “I don’t want to use Medicaid. I am afraid of Medicaid.” My client doesn’t understand yet that Medicaid is his only governmental assistance option in the event that his wife must go into an assisted living facility or nursing home. He also doesn’t yet realize that assisted living of some kind is all but inevitable. This confusion could be avoided if the subject is approached before a crisis hits, but broaching the topic is not easy. Often it is one of the children or grandchildren who have to bring it up. In this case, as with many others, the earlier the subject is brought up, the better. If you aren’t sure how to begin looking into long term care, there are a few websites that can get you started, including Long Term Care Living, and this guide from the AARP website. The law surrounding elder care issues can be confusing to those who don’t deal with it every day, especially the laws concerning Medicaid, which are murky and convoluted. Our role here at Law Elder Law is to help seniors understand their options for assisted living and Medicaid, and help them plan for a future in which they can be comfortable—both physically and financially.
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