According to the U. S. Census Bureau, 34.9 million people were over the age of 65 in the United States in 2000. That number is expected to increase to 52.1 million by 2020 and 61.7 million by 2030. The current estimates are that one in every four individuals is now caring for an elderly person. The average caregiver spends 35 hours a week and $462 a month from their own funds caring for an aging family member, according to a recent survey conducted by Evercare.
Leading elder care expert, Dr. Marion Somers, believes that as our population lives longer than ever, our country faces a care-giving tsunami. On her Web site www.doctormarion.com, she made available video footage of her interview with Hillary Clinton, Mitt Romney, and Fred Thompson. She asked the candidates for their specific plans to protect America’s caregivers and to reform Social Security and Medicare. It is her opinion that caring for the elderly will be the most challenging issue our next president faces.
Caring for my elderly mother with dementia has truly affected the life of my sister. It is my hope that sharing my family’s story with others will create more awareness of this situation. There must be awareness before there is change.
For the past three years, my 60-year-old sister, Opal, has faithfully and diligently cared for our 81-year-old mother while putting her own needs on hold. Since November of 2004 when my older brother died unexpectedly, my sister inherited this new role. Less than one month after my brother’s death, my mother was admitted to ICU and we almost lost her too. She was hospitalized seven more times, totaling almost 180 days, from December 2004 until now.
My mother’s health had never been good, but she had always been able to take care of herself. With each hospital visit, her list of aliments grew longer as she grew weaker. Her most disturbing diagnosis was dementia. We were losing the mother we had always known. Slowly she began to change in ways that we were unprepared to deal with. Falls were common in her weakened condition. She was no longer able to care for the home and yard she had always maintained with such pride.
My sister is a licensed social worker with many years of experience. Some of her jobs have included working with the elderly. She is good at what she does, but it’s different when she is dealing with our mother. Job burn out is normal for social workers. Their pay is low, the hours are often long, and the turn over is high. One way to survive is to detach from the client. But how does Opal detach from her own mother?
When this all began, my mother still lived in her own home, 200 miles away from my sister. During the hospitalizations, my sister used all her vacation and sick time to stay with Mom. As Mom’s condition worsened, my sister took care of our mom’s life, such as running the house and making medical decisions, in addition to her own. Thankfully, Mom had given my sister power of attorney, appointing my sister as her caretaker.
Each time Mom came home from the hospital, my sister coordinated nursing visits, handled insurance matters, and transported her to doctors’ visits. Mom could no longer stay by herself, and we watched helplessly as she lost the ability to do all the things that we too often take for granted. She required assistance with bathing and dressing. She could not even walk to the mailbox to retrieve her mail.
Eventually it became clear this arrangement was not working for my sister or my mom. Our family needed to deal with the inevitable issue of finding another place for Mom to stay. It became my sister’s job to find an assisted living facility for her. Mom actually made that a little easier by telling her about a place she had visited previously.
It was very difficult to put the house Mom loved so much up for sale. My sister handled it with grace and ease. She went through Mom’s things, deciding what to do with each cherished item. Mom had spent 79 years collecting a house full of things, but within a few weeks, all that was left would fit into a small unit at the assisted living facility. During this time, I realized all too often we attach great importance to our worldly possessions while losing sight of what is really important. When most of her goods had been disposed of, Mom’s love for family remained strong. Her happiness was not dependant upon what she had accumulated but rather by giving love to her family.
The assisted living facility was 170 miles from my sister’s home, which was a shorter drive. However, my sister worked full time, and often went to visit our Mom on weekends. She felt some relief in knowing that Mom was finally in a place where she had around the clock care. But my sister did not cut back on her visits. With our Mom in a new place, new concerns surfaced for our family. We wondered if Mom was being adequately taken care of. Though the trips were time consuming and emotionally taxing, it was the only way my sister could know for sure that Mom was being treated well.
During three of my mother’s hospitalizations, the doctor had told the family that she was going to die at any time. But each time she lived through the hospital stay. During one of these critical periods, my family stayed in the ICU waiting room discussing her pending death and funeral as she lay in a semi-conscious state. We had lost our sister to death in 1984, then our father in 1989, and our brother in 2004. Our family had been cut in half. We weren’t ready to lose our mother. Each minute with her was special. Each time she cheated death and each time my sister took on more responsibility.
Before my mother’s illness, my sister had a life. But as she cared for our mom and the months went by, my sister’s former life also slipped away. Though she could have been gardening or reading a good book, though she was physically exhausted from working and taking care of Mom, and though she often didn’t have money for gas, most weekends you could find her sitting at my mother’s side.
I did all I could to help. But I lived in Missouri, 750 miles away from this situation. Each time Mom was hospitalized I flew or drove to North Carolina. But each time I returned home, I felt as if I had abandoned my sister. Mom was getting by, but my sister was struggling to deal with the emotional and physical demands of being a caretaker. She was exhausted and stressed out. There was so much she could not control and no way to prepare for the uncertainty of what would happen next.
On my occasional visits, I found myself doing things for Mom that I had done for my children. Bathing was difficult and at times, I’d get into the walk-in shower with her. Many years ago, I had perfected the skill of changing my children’s diapers. I could place my child on the diaper table, holding them with one hand while changing them with the other. I could hold my breath for the duration of this process, drop the dirty diaper in the pail, and be back at whatever I was doing in less than a minute. As hard as I tried, there was no quick way to get a diaper on and off of a 150-pound woman too weak to offer any help. Because I only drop in and out occasionally, I only had to do these tasks once in awhile. My sister did them all the time. I am thankful Opal is there, doing these necessary tasks when I am unable to do so.
As time went by, I could see that my sister had accepted her role as Mom’s caretaker. She no longer lived for herself, but now lived to take care of Mom. The roles of life had been reversed. It was like my sister had had another child without planning to do so. Each decision she made she stopped to think how it would affect Mom. When she shopped, she also shopped for Mom. When she paid her bills, she also paid Moms. When she picked up her medicine, she also picked up Moms.
The place my mother had picked to live was extremely nice. But it was expensive, and my sister began to have concerns over money. With dementia, Mom could live a very long time – long enough to outlive her money. My sister made the difficult decision to move our Mom, again. This time she moved her to the same town that she lived in.
Overall, this last move has been a good one for Mom. But it is not any less work for my sister. Each day, before she goes to work, my sister drives by the facility where Mom lives. She sometimes goes inside to see how Mom is and to make sure she is dressed. I’m sure each visit tugs at my sister’s heart. Then she leaves my mom to go to a job where she deals with other families’ problems and tries to find solutions for them. As her day ends, she stops by once more to check on Mom. Social invitations and her own interests are put aside so she can fulfill this important, but often unrecognized role.
Social workers do not chose this field for the money. My sister has been single for years, and money has always been tight. For several years now, she has worked a part-time job with a home health agency in addition to her full-time one. I know she is exhausted most of the time. But somehow she manages both positions and does an excellent job of caring for Mom. At the time in her life when my sister should be slowing down and thinking about retirement, she is speeding up and taking on more responsibility for someone else.
When I visit my mom I am flooded with emotions. As I walk through the various sections of the assisted living facility, I see many people who appear to be lost. If you spend much time there, you get to know their names and realize that many of these people have no one check on them. Sometimes they approach you or your family as if they want to be a part of your group. Feeling helpless my heart breaks, for behind each blank stare is a person that used to live independently and take care of themselves.
I believe that my sister will be rewarded for the care she has given to our mom. She has done it out of love with no expectation of anything in return. There is no way to redo the last three years or to repay my sister for the amount of time she has given to our mother. But I would like to thank her and recognize her for the unselfish sacrifice she has made. After much soul searching, I have decided to move back to North Carolina this spring. At that time, I hope to take a more active role in our mother’s care and to give my sister a little reprieve.
Met Life has estimated the cost to businesses from lost productivity of their employees, who serve as their families’ caregivers, as $17.1 billion dollars per year. Caregivers are often exhausted, stressed, absent, and not as productive at work. They estimate stress causes caregivers to age prematurely, and their life expectancy can go down by as much as ten years. The emotional and physical toll can’t be quantified in dollars.
I encourage you to be more aware of those around you, just as I need to be. We need to look at the elderly, who are receiving care, and their loved one, who are giving care, instead of ignoring the problem as if it doesn’t effect us. Caregivers need a caretaker! They must take care of themselves before they can give care to others. Evercare is advocating a unified system of support for caregivers, some type of respite program. Their recommendations will be presented to members of the Congressional Health Care Committee. But until something is done on a national level, it is up to us as individuals to do all we can to support caregivers. After all, some day we may need someone to do this for us.