It changed our retirement plans. It changed the way and how fast we pay down the mortgage. It changed what we do on weeknights and what we do on holidays. It changed the way we travel and what things we can do happily and comfortably. It changed Mike's ability to measure, build, and work wood, to tune and play his guitar. It has clipped his wings--no more snowmobiling at Buck's Lake, boating at Mammoth Pool, or riding dirt bikes in the forest or the desert. No more hopping in the truck to go get a Dr. Pepper and say howdy to the cashier.
It was a relief to him, at first, to not have to manage his construction business: the fractions! the loose ends! the contradictory needs of customers and vendors! tool and truck maintenance! subcontractors! So for a while, as long as Mike could drive, he managed his disability retirement okay.
But when he was forced to give up driving, he began to deteriorate. Ask anyone who knows him: Mike is a social guy and an extrovert. Our lovely, secluded, rural bit of Butte County became his prison. He suffered daily from the lack of conversation and social engagement. When I came home from work--8 1/2 hour days sandwiched between two 1-hour drives--he would be despondent, confused, withdrawn and uncommunicative. Ten hours a day alone with the cat and the hummingbirds became unbearable. He said he wanted to die.
In October of 2017, with the help of family and friends who signed on to share costs, I hired a caregiver to come out a few hours a day, three days a week. Mike and his caregiver go out two or three times a week to bowl or golf and share In & Out or Subway. It isn't a lot, but it breaks up the day and introduces music, conversation, and physical activity into his day. It makes him feel a little more normal. He wants to feel normal.
Mike's neurologist has written a prescription for daily, all-day supervision for purposes of safety and social engagement--but for Mike, a retired contractor without long-term care insurance (they say if you can afford it, you don't need it!) and a working wife, there is no financial assistance to make this possible. We make too much money--just not enough to provide what Mike needs. He would be MediCal eligible, but MediCal will only help him if and when he moves into long-term care, not before (even though equivalent in-home care would cost less).
I am guessing that no one thrives in long-term care. No one is happy in long term care. No one wants to live (or die) in long term care. We will do whatever we can to avoid long-term care.
That where you come in! $96,000 is a lot of money. Caregivers cost a lot of money. If we only maintain our current schedule, we will spend about $24,000 this year. However, Mike's needs change gradually over time, so this number has to go up, at least until I can retire in a few years and be a full-time caregiver. I can prepare sandwiches and set out snacks and drinks before I go to work, but who will check in to make sure he isn't injured or scared or ill, or trying to call me on the phone, or looking for the TV remote? What if there is a fire and an evacuation emergency?
$96,000 covers four years of care at our current level, fewer if we increase caregiver time. That takes me to full retirement age, when we--hopefully--can reduce caregiver time. And if we can't, well, we'll think about that then.
We hope you will donate in memory of someone you know who has Alzheimer's, or of someone who died of Alzheimer's. Maybe you can give in memory of someone you know who suffered from loneliness and isolation. Maybe you will donate because you remember that the Christian gospels encourage us to visit the imprisoned. People with Alzheimer's are imprisoned in the stigma of their illness and in their dependence on others. "Whatever you do for one of the least of my brothers, you do for me."
To our donors: thank you from the bottom of our hearts!
Click here to visit Mike's personal Facebook page with pics of some of his guitar playing, boating, dirt bike racing, hiking, and other adventures.
Click here to see some of Mike's work in the Sacramento Valley He was a cabinet maker for a decade in Whittier, California, and a general and finish carpenter in Northern California for almost 30 years.
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