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A new study shows that caregivers have a hard time falling asleep at night. It is believed this is because of the depression that most caregivers suffer from. 

As a caregiver for my mother during the several years she suffered from Alzheimer’s before ultimately succumbing to it, I can attest to the tremendous toll caring for a dementia patient takes. Although I wouldn’t have not been there for my mother, her illness sapped everything from me until in the end the only life that mattered was her life. My life became a shell, its only purpose to care for her. The unfortunate thing about this is that it left me with no inner resources. No wonder I became so overwhelmed by depression that sleep eluded me.   

This week was nursing home week. In connection with this event, the senate held a hearing on enforcement of federal quality of care standards for nursing homes. The hearing was broadcast by Cspan. Click here to watch the testimony if you missed it.  You’ll find it under “Recent Programs.” As I wrote earlier, the Government Acccounability Office (GAO) found that nursing home inspectors are derelict in their duty of identifying and enforcing violations.

Also, the Senate Special Aging Cmte. held a hearing on breakthroughs and challenges in treating Alzheimer’s. If you didn’t get a chance to watch it, videotaped testimony by Fmr. Supreme Court Justice Sandra Day O’Connor about caring for a spouse with Alzheimer’s can be accessed on Cspan’s website.  Along with her testimony is  testimony from a patient, health care specialists and other caregivers.   I read a wonderful article awhile back about O’Connor’s ability to value her Alzheimer’s husband great fortune to be able to find love a second time. Although they have been married since 1952, he no longer recognizes O’Connor and has fallen in love with a patient who lives at the same Alzheimer’s facility. It is a touching story. I believe I wrote something about it, but can’t remember if I posted it.

Latest reports show that nursing home inspectors routinely minimize or ignore potential life threatening problems.  Added to the problem is the fact that nationwide, one-fifth of nursing homes were cited for serious deficiencies last year. Nursing homes are required to be inspected yearly. Inspection is done by a state employee. federal officials validate the reports by accompanying inspectors or through a follow-up survey.

More than 1.5 million people live in nursing homes. The federal government in the form of Medicare and Medicaid cover more than two-thirds of their residents. As a condition for participating in Medicare or Medicaid programs, nursing homes must meet stringent federal standards.

The chief counsel to the inspector general of the Department of Health and Human Services, Lewis Morris, said he often had problems identifying owners of nursing homes that provide substandard care. Some of the problems found were residents that were dehydrated or malnourished, maggot infestations in wounds, dead flesh, and broken bones that have gone unmended.

Caring for someone afflicted by Alzheimer’s can be overwhelming. To get relief some caregivers turn to adult day care. As the sole caregiver for my mother, that’s what I did. As my mother’s disease progressed, I found that she needed 24 hour care. It was overwhelming since her deterioration was accompanied for a long period by what I perceived to be unreasonable anger and constant demands to say nothing of the emotional pain she and I both experienced as the result of her gradual and profound loss. The changes were also accompanied by emotional abandonment as friends and loved ones slipped away. 

Adult day care provided a way for her to connect with individuals that could offer her friendship. It provided her the opportunity to be the person that existed in her mind. In my mother’s case that person was someone who was young and alluring with childlike appeal. It provided me with a window of time that I could use to pursue my own dreams.

The care was free, offered by the local government. Along with the care came free transportation. Transportation was not always reliable - the drivers sometimes were late in picking up my mother, and on one or two occasions simply forgot about her. Still it was a tremendous help.  This type of care is available in most communities. Although some places charge, there are others that are free.  The best place to find out what’s available in your community is to check with your local government, with the local agency on aging, or with AARP. 
 

The Los Angeles Times reported that it’s becoming increasingly difficult to find younger people who are willing to work as caregivers. At the same time demand for caregivers for the elderly is expected to increase.  It is projected that during the next decade demand for home health aides is expected to increase by 50%.  One proposed solution is for healthy older adults to pitch in as paid or volunteer workers.  There is evidence that this is already happening.

Problems with recruiting caregivers would not be a problem if the pay rate for providing care to our most vulnerable was not so depressingly low, especially when compared to other professions, and especially when you consider the demanding nature of the work. According to the Department of Labor, home care workers make between $7.19 per hour and $9.54 per hour. The average pay for nursing aides at $10.67 per hour is slightly higher.  

My own experience was as a caregiver for my mother who suffered from Alzheimer’s.  Towards the end, I bathed her, dressed her, and spoon fed her baby food as if she was an infant.  I did this out of love and because I could not afford to hire someone to assist me. The idea that as a society we expect strangers to provide this degree of care for our loved ones without adequately compensating them is ludicrous.

The Illinois legislature approved higher wages for workers who take care of the elderly.  Minimum wages for the more than 48,000 elder care workers in Illinois will be increased by one dollar an hour.  The General Assembly also approved health care options for these workers.  This is the type of legislation that all states need to enact. Caregivers for the elderly have been shown to be the most depressed workers.  Providing them with decent pay and benefits will go a long ways towards making their lives easier and making them feel their work has value. 

A Washington Post article reports that a top governmental agency has found that workers who care for the elderly, disabled, and small children have the highest rate of depression. The full report can be downloaded at SAMHSA.