There are now about 4.5 million Alzheimer’s patients in the United States. My husband is one of them. Within 10 years, as our population ages, that number is expected to increase to more than 14 million. It will touch families in a way that cancer and other notorious killers now do. And, in some ways, it is more devastating.
It’s hard to describe the awful process of watching a loved one slip away into a terrible world that healthy people cannot imagine or touch. There’s no sudden crossing of that border. But it happens, day by day, until the caregiver is left with no more choices. Institutional care is the end of the line and it brings with it new trauma.
Nursing homes are a very real necessity and fill urgent needs. No family should feel guilt when faced with that decision. And I believe nursing home owners, administrators and staff share the same commitment to safety, dignity and care that residents’ families do.
The problem is that most facilities are inadequately staffed to meet those needs. Maine regulations, for example, required one certified nursing assistant to 17 patients at night. The long-term care unit where my husband resides has 18 residents and generally two CNAs and a charge nurse. At night these same 18 residents have one CNA and share the charge nurse with another unit.
Considering that the patients range from cooperative to combative, the challenge to the overworked CNAs is enormous. The possibility of safely meeting the needs of the residents or the caregiver is certainly questionable.
In fairness, the system works better than one would expect. It works because people who up for work every day. It works because of a front line of caring CNAs who perform this demanding, stressful job for $7 an hour and the emotional reward of plugging the leaks in the dike. When I think of freal heroes, I have a picture of these unsung people coping with almost impossible physical and emotional challenges. It’s no wonder there’s a shortage of CNAs in Maine. But some of them continue to do two shifts a day and some do shifts on more than one job.
Because nursing homes are pro-profit institutions, the bottom line is the most important component in the equation. And the most significant cost factor is payroll. The facility where my husband is a patient actually staffs better than most nursing homes. But the ratio of caregivers to patients is woefully inadequate, especially at night.
The problems facing families of long-term caregivers are inadequte care and overwhelmong costs. The laws that govern the financing of this system seem skewed to favor those who are sophisticated and wealthy enough to shelter their assets. Most of us who watch as the disease slowly destroys our loved ones bear the added trauma of financial destruction at the same time. At a cost of $5,000 a month for long-term care, one quickly becomes Medicaid eligible. Generally, a spouse may keep a home, an automobile and assets of $80,000. In a very short time, a lifetime of work and savings is gone.
It’s a nationals problem and it deserves the kind of attention that has lately been directed toward much more superficial matters. The state and federal government need to set more realistic standards of care. We need to more adequately compensate those front-line caregivers who face reality every day. And we need federal incentives to encourage the recruiting and training of the vital CNAs. Changes need to be made to protect families from financial devastation. Corporations that own and operate nursing homes need to incorporate “compassioante capitalism” into their business practices.
None of this will happen until enough people become politically active to bring about change. Those of us with loved ones in long-term care a minority. But the lightning can strike any family at any time. If you wait until it involves you personally it will be too late.
I urge you to think about the prospect that has overwhelmed so many of us. Start making some inquiries. Talk with your family even though it’s an uncomfortable subject. Talk with politicians. We may find that we have enough collective power to bring about change.
If we have enough wealth in this country to build space stations and to take care of the world’s problems, then I truly believe that we have enough to make our nursing homes more than just warehouses for the dying.
That’s a terrible heritage for an enlightened civilization.
Alice Drinkwater lives in Bangor.
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