About a year ago, I moved my family from four people with my aging parents and joined my mother to take care of my father, who has advanced dementia in frontal lobe. I also joined 26 million other Americans who are caregivers of the generation of sandwich – juggling constantly with the needs of an 8 -year -old child, an 11 -year -old child, a career and my 76 -year -old father, who can never be left alone. Fortunately, my big brother also moved his family to a few blocks of houses and joined the care, so we are a village of Rigtag of five adults raising four beautiful strange children and with love with the disappearance of my father.
Given our situation, you can imagine how we shivered when we heard of the tragic isolation and the fate of actor Gene Hackman and his wife, Betsy Arakawa, who were found recently at home. A survey by local-mexic local authorities concluded that Arakawa died of a rare respiratory disease around seven days before her husband, who died of complications to be left alone for a week with Alzheimer's disease.
In the wake of this tragedy, Emma Heming Willis, her husband's main caregiver, actor Bruce Willis, who suffers from dementia, went to Instagram and said, among others: “Caregivers also need care.” She added that “it is so important that we were presented for them so that they can continue to present themselves for their person.”
But what does it really mean to “introduce yourself” for family caregivers?
Living in a loving community of friends and neighbors who recognize your dedication and your difficulties as a caregiver is certainly part of the answer, ideally. Regular deliveries of Dahl Aromatics Homemade and Standing Vegetarian Lasagnes and Lemon Pies of friends have advanced our family. When a furious neighbor hit our door and shouted my mother about my wandering father on his lawn, the rest of our neighbors joined us and said they had seen our sincere, although imperfect efforts, to keep it safe and welcomed its innocent intrusions. Fortunately, the family picnic he crashed in our local park was also received with Grace; He returned home with a Ciabatta sandwich tight in his hand and a big smile on his face, and the kind family who tolerated his confusion made our day infinitely easier with their kindness.
But even that – meal trains and neighborhood grace – are not enough, and many caregivers are not fortunate enough to have such networks.
Family caregivers need us to present themselves for them thanks to structural investments in the formal care of the elderly, in particular day programs for people with Alzheimer's and dementia. There are 7 million Americans who have Alzheimer's disease and about twice as many family caregivers. The lifetime risk for Alzheimer's disease at 45 is 1 in 5 for women and 1 in 10 for men.
Just as there are childcare deserts throughout America, there are also deserts of care for the elderly. In California, where we live, the recipients of Medi-Cal (California's Medicaid Program) residing in 32 counties have No access to this kind of day programs. In fact, the number of programs of days in the state culminated at 366, in 2004 – when there were far fewer elders in America.
For a brief period, my father attended a day program in the Bay region, where we live. We would do it in the morning and he was walking to take a cup of instant coffee. While I did a full day, and my mother recovered (generally) a horrible night's sleep, my father sang the karaoke (Beatles and Stevie Wonder were his essential) and that I was doing yoga. This has changed the game for our family: affordable, near our house, but outside of it, lots of magnet caregivers and community. …
But after more than three decades of existence, the day program finished last December. If someone without the possibility of paying came into its doors, the program had taken care of it and then filed a refund via Medi-Cal. The state has given the organization $ 76.27 per day for care that costs $ 250 to provide – a reimbursement rate that has not changed since 2009.
My father's health took a dive in the nose when the program is closed, just like that of my mother. We tried to work with a health assistant at home, a fantastic woman who liked to bring my father fried chicken and spaghetti for lunch and laughs at her antics, but in the end, she could not manage her wandering and increased agitation.
And we were not unique. When I asked the other families of the program how they had been going on since the closure, they responded with words as “devastating” and “desperate”. A girl shared: “I fear that my career will not be blocked because of my need to be available to manage my father's financial affairs, including reimbursements, weekend care and the management of two children who suffer from dyslexia. My husband's career is also blocked.”
If Gene Hackman had attended a day program like the one in which my father briefly prospered, he and his wife could still be alive. These day programs make life and careers of caregivers, enrich the lives of our elders at the most vulnerable moment and literally save lives. And day programs for our elders with dementia and Alzheimer's are not only the moral and psychologically solid solution, but the fiscally responsible solution. The average day program costs $ 2,167 per monthUnlike a home health assistant, which costs an average of $ 6,483 per month, or a private room in a memory care establishment, which costs an average of $ 10,646.
Meal attacks are so nourishing. The grace to understand the neighbors is such a blessing. But what family guards in this country need, more than anything else, are reliable, accessible and lively day programs.
And we are not likely to obtain them unless the Americans clearly show that they will not tolerate the opposite. If the much discussed cuts of the Republicans in Medicaid and Medicare pass, the states will be even less likely to increase the reimbursement rates of this type of programs, and suppliers will be even more pressed to increase the already exorbitant costs to compensate for federal shortages. This means that the inadequate number of days programs that we have already closed, and that new ones will not open, when America is in a historic wave of people 65 years old. People will suffer and people will die. It's as simple as that.
The novelist Pearl Buck wrote one day: “Our society must make the right and possible for the elderly not to fear young people or to be deserted by them, because the test of a civilization is the way in which he takes care of his helpless members.”
We already fail and fail more fatally than if we cut myladia and leave the aging Americans and their caregivers blocked.
Courtney E. Martin is the author of many books and newsletter Family examined. She is also the storyteller in the residence of The Holding Co., a laboratory to rethink care.
