Importance of Volunteer Caregivers—Financially
Based on a recent article in WebMD, caregivers are saving the U.S. Government–that is, you, the taxpayers–a whopping $470 billion a year. Caregivers come from all areas, but the most astonishing source is from children, ages 8-18, many of whom have had to quit school. This group represents 22% of volunteer caregivers. Forty percent are men, and 33 percent are women. (The Invisible Workforce, by Lisa Marshall) Helping caregivers that help aging seniors aging in place and other sick individuals to stay with their loved ones is very important.
That $470 billion is an amazing figure that gives rise to the thought of what the government is doing with this huge savings. To further give you an idea of how large this saving is, the National Respite Coalition reports that in 2009, the estimated value of 42.1 million caregivers for adults was $450 billion a year and that this figure was more than Medicaid spent in 2009. Adding four to eight million more caregivers for children increased the total saved the taxpayers an additional $50 to 100 billion. When we think of caregivers, we think of seniors getting too old to take care of themselves. We don’t realize the large number of people in this country with diseases from the following categories that require care. Please note that this list does not include all forms of cancer nor does it include severe mental illnesses other than depression:
- Amyotrophic Lateral Sclerosis (ALS)
- Alzheimer’s Disease
- Brain Tumor
- Dementia with Lewy Bodies
- Frontotemporal Dementia
- HIV-associated Neurocognitive Dementia (HAND)
- Hypoxic-Anoxic Brain Injury
- Mild Cognitive Impairment (MCI)
- Parkinson’s Disease
- Traumatic Brain Injury
- Vision Loss & Blindness
- Wernicke-Korsakoff Syndrome
This list of illnesses comes from Family Caregiver Alliance, the oldest organization in this country for caregivers. Their statistics show that 80% of people diagnosed with these illnesses are cared for by their family members. But back to that $470 billion. It would behoove us to insist that that amount of money be set aside for health issues and anything related to caring for the sick and the elderly. This might mean our foreign aid would be reduced, but we have really been fighting that issue for a long time, haven’t we?
Caregivers – Family Member or Paid Employee
According to Joseph Matthews, an attorney with caring.com, assistance is available in some states for paying a low-income client or in some cases one where there is “slightly too much income or assets to qualify for Medicaid” the same amount of money that would be paid for help through a certified home care agency. The recipient can use this money to pay his caregiver, whether it be a spouse or a child. Children who are considering reducing their hours or quitting their jobs should consult the site further for information on how they might be paid for providing their help to a parent. See if your state has a Cash and Counseling program by contacting the Medicaid office in your area. Mr. Matthews has written two books on this subject for those who are trying to make plans for long-term care. One of those is Long-Term Care: How to Plan & Pay for it: This book is available from Amazon.com and is shown below for ordering from them. Those who have rated it did so with five stars!
Every time I see an article about caregiving, I want to cry, regretting that I did not take care of my mother. Others told me that she needed 24/7 care, but I believe she could have been kept in her own home with just me there. Not that I am special, but I had training in caring for older and dying people that would have facilitated my taking care of her. I also believe that she would have lived a lot longer and with happier days. I was too easily swayed to go along with the prevailing opinions, but if I had to do it over again, I would seek help on how I might adequately care for my mother and save myself at the same time.
The decision to place her in a nursing home came too soon after her confinement for rehabilitation following repair of a broken hip. The rehab staff made the decision within 24 hours of her admission. She actually appeared to have no hope and no desire to do anything to get better after that decision. She had been given a drug to calm her that actually caused her to act inappropriately. This changed when the medication was changed.
If this happens to you, try to discuss it with family members properly, pointing out that you, too, have a stake in your loved one’s care, that you have a voice, and that all family members should be satisfied that they are doing the right thing:
- Postpone the decision to put someone in a nursing home with all members acting together to provide temporary or better permanent care.
- They need to assure themselves that they are in agreement.
- They need to be interested in learning about other avenues of care.
- Each person should question their own motive which sometimes includes thinking they know best, not wanting to take responsibility for their loved one, not wanting to be outdone by a family member who might be willing to make the sacrifice to care for the loved one, or wanting to exert power over another.
- Erroneous thoughts need to be disproved with second opinions.
My mother had been doing what she loved best—caring for her flowers outdoors when she fell backward onto a concrete stepping stone. Forty-four million people are taking care of their loved ones in their own home. That is 13.6% of our current population. I have come to believe it is the single most important thing we can do for our loved ones whenever it is possible. Why do I say that?
According to the National Center on Elder Abuse, abuse is admittedly occurring in nursing homes and in assisted living facilities on a large scale. Please review the two-page report on the types of abuse, particularly the pie charts which show very little variation between nursing homes and assisted living facilities, except in financial exploitation and resident-to-resident abuse, where the latter is higher and the resident abuse is lower in the assisted living facilities, as you might guess. Also, please see the best and most extensive article I could find on elder abuse, especially for the list of how seniors or residents are mistreated. These are things we just don’t think about, such as changing soiled underwear or brushing their teeth.
I was recently confined for physical therapy following back surgery. I arrived there on a Friday afternoon and by Saturday afternoon, I was ready to leave. On Monday at 8 am, I called my doctor’s office, begging them to have me discharged. My doctor contacted the doctor in the facility who visited me and assured me that I should be ready for discharge by Wednesday. I needed more physical therapy. He also assured me that he would write some orders that should improve the care I had been getting. The revised orders did little to improve the delivery of pain medication, but the physical therapy was a pleasure to look forward to. That is the only thing that got me through that five days. Sure enough, the doctor arrived early Wednesday afternoon, and I was gone within 30 minutes. This occurred after the director of the rehabilitation area informed me the day before that because she had not received 48 hours notice, I would not be leaving. Three of many of my observations were:
1. The food was awful. The watery consistency of cream of wheat and grits with no seasoning is a prime example of what was available. My diet was a regular one. The best meal was the last meal, which I am sure surfaced as a result of a visit by the dietitian the day before.
2. Staff would make excuses for not doing their jobs. Unfortunately, they worked 12-hour shifts, and you could find them sleeping in the middle of the night in the lobby and dining area. They worked harder at covering for each other when one was not to be seen anywhere.
3. During my last night there, my roommate told the nurse that her pacemaker was shocking her. While the nurse acknowledged hearing this, she did nothing about it. About 7:45 am–before breakfast–an occupational therapist came to get me for therapy. It was a short day for him and he wanted to get it over with. Fortunately, he noticed my roommate shaking uncontrollably. Our beds were separated by a curtain. He called the staff, my roommate lost consciousness, use of the crash cart was required, a doctor arrived on the scene, and my roommate was transported to the hospital next door. No one could give me any information on how she fared.
Six weeks after my discharge, I received a survey for completion about the rehab/nursing home from an independent source. I completed it with pleasure. You might say that my encounter was an isolated incident, but it was not. I talked to friends who had relatives there with the same or similar stories and I read the nursing home reviews on the Internet. People might also say, “What do you expect, you are getting free care?” Wrong. I have paid the deduction for Medicare since its inception. Along with the rest of you on Medicare, I pay the newly increased amount of $134.00 per month for Part B of Medicare that includes considerable deductions, depending on which Medicare advantage plan you select.
Research Regarding Mistreatment in Nursing Homes and Assisted Living
It must be difficult to generate studies that prove what I am saying, except maybe by surveys, but I believe more are necessary. Those that have been done are not being acted on quickly enough. Medicare needs to improve the way their approved institutions take care of their residents. Employers need the funds to provide employees with proper training, and the training should be enforced in the work environment. Yes, this enforcement would cost extra money to have someone available for each shift to properly supervise, halt improper activities, and report what employees are doing if they fail to follow through on their instructions. Additionally, I believe cameras should be utilized in each area where staff and residents see each other.
The government needs to find out what makes paid caretakers tick. Why do they abuse their patients and residents? In many areas, they are actually demanding $15 an hour to care for people, while many with college educations don’t make that. Home health agencies benefit the most from sending out paid volunteers who very often make their own rules that sometimes amount to fraud. Stricter laws need to be enacted for those who mistreat the sick or those at the end of their life. Sick people are hardly able to fight back, and many would rather die than to have to be in an institution where they get the care they do not deserve.
What Should Medicare do with the Billions saved by Caregivers?
Capture the gain and spend it to improve the training and care of volunteer caregivers, not to mention provide them stipends. Most of them have given up a job or school, reduced their retirement benefits, lost their hospitalization, and lost a significant part of their own life to care for a loved one. As Lisa Marshall points out, some government entities have begun counseling for individuals and families of caregivers, support groups, and other services, but this is not available in all states. Caregivers increase their chances of acquiring dementia after taking care of spouses with the same illness. They also acquire more heart disease, depression, and anxiety than non-caregivers. This will eventually cost them and the government additional funds.
With the number of possible caregivers declining for family members due to declining family size, more are going to be forced to go to institutions, where they are not going to get good care. The attitudes toward older people and those with serious illnesses should be changed. Rather than being looked at as individuals destined to die at any moment, they should be revered as people who have earned the right to die as peacefully as possible and with dignity.
If you are thinking about becoming a caregiver, please review the caregiver training available for those uncomfortable about taking care of a loved one or those thinking about becoming a CNA. This training is provided on site in schools and colleges and online through schools, organizations, and YouTube videos. One example of a YouTube video is this one of a series taught by Family Caregiver Alliance.
I encourage you to come up with your own ideas and either post them in the comments section below, forward them to your congressmen and women, join nonprofit organizations to advocate for the sick, elderly, and caregivers, or all of the above. See below for another excerpt from an important series of taking care of those with dementia.
 The Invisible Workforce, WebMD, p. 82, Nov/Dec 2017.