Mary & Warren: Coping With a Long-Term Illness

Sidebar: Paying for Long-Term Care
Sidebar: How Much Do We Spend on End-of-Life Care?
Warren and Mary Webb never planned on spending their last years like this. At 74, Warren was still working as the only hand engraver in a Bethesda, Maryland, trophy shop, and playing golf three days a week. But, in a span of four months, Warren's life took a dramatic turn. He suffered two major strokes that eventually left him paralyzed on one side, unable to sit up, walk, or control his bladder.

Pull QuoteMary, who is 20 years younger, had never wanted to put Warren in a nursing home. But after months of caring for her husband while holding down two jobs, she felt she had little choice. Although the state was picking up Warren's monthly $361 tab for his blood pressure medicine, Warren's Medicare policy did not cover the home care services he needed, including diapers and daily living assistance.

Struggling to Provide Care Alone

Mary works as a physical education teacher at a private religious school; she also works three days a week as a day care provider. She depended on Warren's salary. Warren had no pension. He does receive a $669 monthly Social Security check. With him no longer working, she can barely pay the bills and cover the $900 monthly mortgage on their condominium. Mary struggled to pay out of pocket the $6 to $10 an hour charge for Warren's home care help that was often unreliable. But it was becoming harder for her to keep Warren at home.

A county official told her it could be months or years before she'd get public assistance because other people were ahead of Warren. Sometimes the caregivers didn't show up and Mary had to call in sick to her job. When Warren had to go to the bathroom, Mary called on her neighbor, a nurse, to help her lift his body out of the bed or wheelchair. As Warren became weaker and more dependent, it became increasingly difficult for Mary to cope. "I did my very best to keep him at home," she says. "I did everything: I tried friends, caregivers . . . it just was not working out. I was at rock bottom, physically, mentally, socially, and financially."

Photo IllustrationBut finding a nursing home hasn't been easy, and navigating the financial route to pay for that care has been exhausting. "I would go for tours [of the nursing homes]. . . I would cry and they would pray with me and say, 'You're not the only one.'" Many homes never called Mary back and most said there were no beds available. Ironically, if Warren had been admitted to the hospital for at least 72 hours, Medicare would have allowed her to place Warren immediately in a nursing home and would have picked up the charges for a limited period of time. One day Warren fell out of the wheelchair and Mary considered calling 911, but Warren's doctor discouraged the move.

A Financial Dilemma

She has finally placed him in a facility near her home, but Warren has yet to qualify for Medicaid, which covers long-term nursing care. The price tag is $150 a day or over $54,000 a year. Mary is in the process of trying to get Warren onto Medicaid but it won't be easy. If Warren qualifies, the state will likely take the $669 monthly Social Security check Mary relies on to help pay her mortgage.

Warren, who can still speak, wants to come home, and is angry at Mary for putting him in a nursing home. He's dropped 30 pounds since his illness and he no longer can feed himself. Although Mary desperately misses her husband, she says without financial help she can't care for him at home. In nine months of care at home, she spent more than $7,000 on caregiving and diapers.

Pull QuoteIf Medicaid agrees to pay for a full-time home caregiver and pick up the cost of his medicine and diapers, Mary says it would be possible to bring him home. But she worries that if the home care situation doesn't work out she would lose a nursing home bed and have to retrace her steps to get Warren qualified for assistance again. It took her eight weeks to get her first appointment with Medicaid. The state has already stopped picking up Warren's blood pressure medicine but he's getting it through the nursing home.

A Long Road

In 34 years of marriage, Mary says she and Warren never discussed end-of-life issues. She knows that this could be a long road. Warren's parents lived until age 90. "This could go on for years," she says.

After she leaves work, Mary visits Warren every night at the nursing home. The hardest part is leaving him there. When she gets home, Mary eats dinner alone with her cat. She looks around her apartment at the pictures of her dapper husband, who was so active only eight months ago. Mary fears she'll go bankrupt unless she gets help. "I don't know what's going to happen to us," she says. "It's like a numb feeling. You just can't believe this is happening to you."

Photo Illustration

Mickey: Learning from Death | Joyce & Charles: The Hospice Alternative
Sabina & Perry: A Patient's Wish | Jonathan: A Planned Death
Mary & Warren: Coping with a Long-Term Illness | Claire & Don: One Family's Struggle

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