He looked into his wife’s eyes and flatly stated, “I’ll put a gun to my head before I ever go to a nursing home.” But the sad truth is this: His wife will be the one to bear the burden caused by his long term care needs and her own aging challenges. This couple are frugal people who worked hard all their lives. They lived on two Social Security checks, his modest pension, and minimal investments. They were able to pay their bills and enjoy simple luxuries—until the out-of-pocket expenses of long term care begin to drain what they worked a lifetime to save. His wife selflessly provides in-home care for her beloved husband, until eventually the day comes when her strength is not enough to pick him up or keep him from wandering away from home. On that day, it might be a doctor, a discharge planner, or a policeman who looks into her eyes and speaks the harsh truth to her: “I’m sorry, ma’am. You can’t take care of him by yourself any more.” This poor woman now faces a nightmare as she walks the elder care journey with a frail and declining husband. First she learns that neither Medicare nor their health insurance provide any payment for home health care costs. Later, when her husband must be relocated to a long term care facility, she discovers that neither Medicare nor Medicare supplemental insurance will pay the facility’s $3,000 to $8,000 monthly cost. Quickly, she also learns that Medicaid is not available because she has “too much money.” Her husband’s care will be offset by Medicaid only if she and her husband meet stringent income and asset limitations. If they have assets over approximately $101,000, they must “spend down” their life savings, which Medicaid defines as “excess assets.” When all excess assets have been spent on her husband’s medical care, then Medicaid will also control her monthly income. She is restricted to $2,500 per month; any income above that must be used to pay for her husband’s care. Later, when her husband dies, she receives more bad news. She loses his pension, and as the “survivor spouse” she loses one of their two Social Security checks. She has spent nearly all of their assets to provide for her husband’s care, and now she can’t even afford to live in her own home. The nightmare of long-term care has left her impoverished and stolen her independence. She will now face her own elder care journey alone. She will not have the luxury of a spouse who will serve her as she served him. No one will be there to dutifully care for her at home and to delay the day that she must move to a long term care facility. She will not have the financial resources that he had, because Medicaid called them “excess liquid assets” and she spent those assets on his care. As a single person, she will not be provided with assistance by the State of Illinois or the federal government until she has become impoverished to the point of a paltry $2,000 or less in total assets. The indignity committed against her does not stop there, for now she must sign over all her income to the nursing home as well, except for a miserly “personal needs allowance” of $30 per month. The loving wife who faithfully cared for her husband is now out of money and out of options. $30 per month will not even give her the privilege of having her hair done. She is alone—and living the nightmare of long term care in America.
I recently heard a moving story from a widow who had served as her husband’s primary caregiver for sixteen years. She spoke with both passion and pain, describing her caregiving sojourn as “the loneliest time of my life.” For this reason, she wanted to speak out and be an encouragement to others who might be on the same road. Her husband had been diagnosed with Huntington’s Disease, a long-term illness that strikes at an average age of 39. To paraphrase her words, “My husband had the diagnosis, but the disease took him away from me. I no longer had a lover, a soul mate, someone who could really share with me. Our days as a couple were at an end.” During the time of her husband’s increasing illness, he was not able to hold her, kiss her, or care for her for at least eleven of the sixteen years of his disease. She shared that during his illness, she had to sacrifice her own feelings for the benefit of her spouse. An area of greatest hurt was the abandonment of her husband by his own extended family. Her burden could have been lighter if family and friends had stayed more involved. She related that when she called her husband’s brothers and reminded them of how important it was to her husband to be able to see them from time to time, they responded with, “I just can’t stand to see him that way.” “I was a widow with a living husband,” she stated with sadness. It seems to me that we could all do a much better job in helping others carry the load of long term illness. We need to be more aware of what family members are going through during what may well be the loneliest and most difficult time of their lives. We need to come alongside them and provide sympathy and support. On a more positive note, I learned of another man who has been diagnosed with Huntington’s Disease and whose male buddies have rallied around him. They have intentionally gone out of their way to work together to take this man out of the house and to sporting events with them. They have specifically set up time to talk with his wife to make sure they understand his care needs. They work together to make it possible for him to go on their annual fishing trip. These men are an extraordinary example of what it means to truly be a friend. I hope that each one of us would choose to follow this model of true friendship if someone we know and love develops a long term illness. **The following links provide more information about Huntington’s disease support groups, or support groups and services for caregivers: Huntington’s Disease Society of America Illinoise Support Groups Today’s Caregiver The Family Caregiver Alliance
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:Nationwide evidence tells us that
- “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.”