Dementia is the umbrella over which there are many types, including Alzheimer’s, Vascular Dementia, Lewy Body, Parkinson’s, and others. It is a debilitating disease for which there is currently no cure. Financial help for those needing care is extremey limited.
My husband, Bob McNiel, was a singer with a beautiful baritone voice, an artist who could create anything from a train on a snowy track, to portraits, to cartooning. And he was a car buff, able to tell you the year and make of any car earlier than 1955. But five years ago, dementia began to rob him of many of these abilities.
We met late in life in our church choir but it was seven years before we started dating. We were married in May 2008. Just over two years later, Bob was diagnosed with early dementia at the age of 73, and in 2013 lost his driver’s license because he couldn’t pass the written test. In 2014 he was diagnosed with stage 4 rectal cancer resulting in months of rigorous treatment and recovery, and in February 2015 he was diagnosed with advanced Alzheimer’s (memory) and Vascular Dementia (cognitive). By June of that year he began to wander and could no longer be left alone.
Bob began attending the Alzheimer’s Family Center (AFC) in Huntington Beach where for two years he received physical and occupational therapy, nursing care, and a myriad of activities for 9 hours each day. It was expensive, but I managed and it was a huge blessing for us. One of the manifestations of Alzheimer’s, however, is aggression and occasional violent behavior. After displaying aggressive behavior 3 times in 10 days, he was no longer able to attend without medication. We tried various forms of medication but they have an adverse effect on Bob, so I sadly had to pull him out of AFC.
Bob is now at home with a licensed in-home caregiver while I continue to work. But even with a “reasonable rate,” caregiving is horribly expensive, and currently 99.7% of my take-home pay goes to his care. Our living expenses come out of a small benefit I receive from my late first husband, which just covers the mortgage, with all other expenses coming out of Bob’s meager social security. But it isn’t enough and my savings are running dry. Fortunately, I don’t have any other debt. Our insurance doesn’t cover caregiving, nor does Medicare. I make too much money to qualify for Medi-Cal, and even the Veteran’s Aid and Assistance disqualifies us because they start their formula with my gross salary and begin deducting from there. I’m caught in that middle-class income where I make too much money to qualify for anything. Some have suggested divorce so they will look at only Bob’s income. But as Christians we hold true to our vows where we promised to love and cherish each other “till death do us part” . . . not until the money runs out. So that is not an option for us.
Bob is now 80 and in February I will be 71. I should be retired, but will need to continue working as long as Bob is alive – both for our medical coverage and especially for his care. I work an 8-hour day then come home and spend another 4-5 hours caring for Bob, as well as on weekends and holidays – usually getting up 1-to-3 times with him during the night. Work is my respite as I couldn’t care for Bob day-in-and-day-out myself. But a 12-to-13-hour day with little sleep is wearing me down. His mind is like that of a 2-year-old with little understanding and virtually no intelligent conversation. His attention span is short and he is no longer steady on his feet – yet he enjoys wheelchair walks (walking about a block before he has to sit down and ride). The good news is that Bob is otherwise healthy and has been cancer free for 3 years.
HOW CAN YOU HELP?
The cost for Bob’s in-home care for the year 2018 will be over $45,000, completely out of pocket. If I have to put him in a board-and-care home, that amount will jump to nearly $47,000 plus a $1,500 non-refundable deposit. The amount of $22,500 I am asking for will help pay for his care through June. Anything above that will help us further through the year. It is out of desperation that I humbly ask for your help in becoming a part of our team to give Bob good-quality care.
We appreciate so much your consideration in becoming a part of our team. We are grateful for your prayers and thank you for your encouragement and support!
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