For sicker or for poorer: When Lewy Body’s breaks a wife’s heart and her bank book

By on January 26, 2016

By David Heitz

Beth Taylor’s caregiving story is not so unusual.

Beth was introduced to her husband Steve on America Online in fall 1996. They met in person one year later. They married in 1998.

But in 2007, Steve began showing symptoms that Beth believed to be Alzheimer’s Disease. Steve said it was just old age.

“One symptom that really scared me was a sudden drop in his blood pressure,” Beth told Caregiver Relief. “After spending three days in the hospital he was sent to rehab. It was during this stay that his neurologist diagnosed him with Lewy Body Dementia.” You can learn more about little-known Lewy Body Dementia by clicking here.

Much like Pick’s Disease, or behavioral-variant frontotemporal degeneration, which is what my dad had, Lewy’s Body Dementia eventually exhibits symptoms that can be completely overwhelming to a caregiver in the later stages.

“What a horrible disease that is,” Beth told Caregiver Relief. “Sudden blood pressure drops, depression, anxiety, anger, forgetfulness, cognitive swings in and out, an inability to put cognitive thoughts and words together to have meaningful conversations, and short-term memory problems are what he experienced, as my heart broke over and over and over again watching it happen. I took care of him 24/7.”

While Beth says she does not regret doing so, you can imagine how respite care like that provided by InTouch Adult Care Center, originally set to be shuttered soon in my community due to $6 million in tardy Medicaid payments by the state of Illinois, could have given her a reprieve. Now the service has been rescued by the for-profit agency Help at Home.

“This man was my best friend, my cheerleader, my confidant, my comforter, and most importantly, the love of my life,” Beth told Caregiver Relief.

The picture shown here was taken Aug. 3, 2012, “a really good day for us,” Beth said. “Steve was very, very alert and like he was before he was diagnosed with Lewy Body Dementia (funny, kind, loving, and very talkative). Trust me, we milked this day for all it was worth.”

Beth said they later went to lunch (Steve insisted on buying for ‘his honey’) and then to the shoe store for new sneakers. He then went home to call his sister until he began to “feel the LBD monsters taking hold of his brain again” and he anxiously kept saying ‘It’s coming back! I have to go to bed!”

The next day he was lethargic again. He died July 9, 2013. But Beth still has those sneakers.

“When my husband died all of his income and health insurance went with him. No survivor benefits. No life insurance.”

Beth’s question for the presidential candidates: I’d like to know why a woman who has taken care of her husband has to wait until she’s 60 years old before she can collect Social Security Widow’s Benefits, especially if she’s no longer able to work and his death left her destitute. (Beth is a Navy veteran and gets VA healthcare benefits). She lives on food stamps and a net property settlement she got from her first husband, $826 per month, she says. Adds caregiver Sharon Clayton: And if she takes (Social Security Widows Benefits) before retirement age, she won’t get the full monthly amount she would have gotten. I had to take mine at 62 to keep a roof over our heads and I only get 80 percent.”

Update: Beth said when she turned 60 years old last year she was able to receive Social Security Widow’s Benefits, which are paid from her husband’s SS benefits. Now she’s back in a two-bedroom apartment, in the same building, “and I can finally breathe again. I don’t have to worry about having enough to pay my bills anymore, thank God.”

 

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