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Sharing the Voices of Caregivers

Hearing directly from caregivers offers a window into their realities - how their lives are affected by the care they provide and the rewards and the challenges of providing such care - and informs the consideration of how best to further develop supports that will assist caregivers in this vital role. The personal stories included below are both compelling and essential in guiding the work of the Family Caregiver Council. Included are several stories that were generously shared by members of the Council, a sampling of the stories told by informal caregivers at the 2008 Town Hall Meetings, and stories from caregivers attending the Alzheimer’s Coordinating Care Community Forums - told in their own words.

Rewards and Challenges - Personal Stories from Family Caregiver Council Members

Caregiving for Parents, With Love

When my in-laws moved into our home, they were 87 and 88 years old and in reasonable health. Since we have a two story home and they could no longer traverse stairs, we changed our living room into a bedroom/sitting room. My father-in-law still drove, so they still had the independence to go out for breakfast in the mornings, as weather allowed. For two years all was well, and we spent wonderful hours cooking together (both of them were great cooks) and playing cards. At the end of two years, my mother-in-law began having health problems and needed personal care, which I was able to provide for her. We never employed outside help, as I was a female helping another female whom I loved.

Shortly thereafter, my father-in-law developed rectal cancer and needed personal care that I could not provide. The task of looking for an aide was daunting, and each new person that entered our home came with her or his own problems. We called agency upon agency to find someone reliable. There was no help on the county level and we were left on our own. We were able to keep my father-in-law at home where he died in his bed. A year after his death my mother-in-law fell and broke her arm. She went into the hospital and then into a nursing home for therapy. She was 91 and very frail, but possessed a fine mind.

Although the nursing home was decent, there were too many patients and not enough attention to each patient. I stood outside the bathroom door as some aides were giving my mother-in-law a shower. She cried for me to come into the bathroom and help her but I was not allowed. I could hear her screaming as she asked them to please watch out for her broken arm. They were chatting and laughing amongst each other, totally oblivious to her cries. We visited daily and one day I noticed she had a high fever. I had the attendant call the ambulance to take her to the hospital where she died a few weeks later. I believe the stay in the nursing home broke her spirit as well as her body. It is my regret that we did not insist on in-home therapy where she was comfortable and secure. We need to ensure that caregivers obtain the necessary help so loved ones can remain in their homes to live and die with dignity. Nursing homes should be the very last resort, and their employees need to be trained to listen and respond to their patients.

My mother-in-law began having health problems and needed personal care, which I was able to provide for her. I was a female helping another female whom I loved.

Becoming a Teenage Caregiver

I was 17 years old, a senior in high school with hopes of attending college away from home when my mother suffered a cerebral aneurysm rupture that left her in a coma for several months. Before I knew the extent of her injury, I remember thinking that she would be in the hospital for a little while before recovering and going back to work.

I had no idea what was in store for my family or that I had instantly become a "young caregiver." The incredible amount of responsibility thrust upon me was daunting. My Mom was in three hospitals and a nursing home over a period of 6 years. Today, 12 years later, she is at home with my 98 year-old grandmother, and has beaten all of the odds. While the care they require changes with each illness and passing year, one thing remains reliable - the constancy and ongoing nature of the care and effort required to maintain them safely at home.

Being a family caregiver at any age is difficult. Being a young caregiver carries additional struggles as we work on our own personal growth and development while simultaneously caring for others who would typically be caring for us. At an age generally associated with becoming independent and separating from family, I became in charge of my mother's life and near-death trauma. All the while, I had to find my own way with little professional help or recognition of my role in my mother's and grandmother's care.

I had no idea what was in store for my family or that I had instantly become a "young caregiver." The incredible amount of responsibility thrust upon me was daunting.

A Grandmother's Story

In 1987 when my granddaughter was born, she weighed 1 lb. 4 oz. at birth. She was born in a drug house and later transported to a hospital in Maryland; because of her health, she was later transferred to Children's Hospital in Washington, DC. I was notified by the hospital that my granddaughter needed surgery and that the hospital couldn't find her mother. I gave consent for the surgery and asked the hospital to stay in contact with me because I would take responsibility for my granddaughter when it was time for her to be released (I knew that my daughter would not be located because she was back on the streets.) When the hospital notified me that she could be released, I had to find a way to bring her here to Rochester, NY. The dilemma I encountered was her medical conditions would not allow her to travel to Rochester on a regular airplane. She was hooked up with a heart monitor and breathing machine that would require a private plane with medical staff. After trying to connect with many agencies, I was finally able to find some assistance. A local radio station arranged a flight to Washington, D.C. for me and also helped to arrange a Mercy flight (a medical flight with a nurse aboard) from Washington to Rochester.

This was a journey that would dramatically change my life. I was forced to quit my job at a local hospital in order to take care of my granddaughter and apply for assistance through our local Department of Human Services. Two years later, I was making that same journey to pick up her brother, who also was born premature. His weight was 1 lb. 6 oz.; my daughter at the time of his birth was still using drugs (my grandson was eventually diagnosed with ADHD and Auditory Processing Delay). In 1990, I was able to bring my daughter to Rochester hoping that the change would give her the desire to change her life style. For six months she stayed clean, but then she returned to her patterns of drug abuse. A year later, her body was found in an abandoned field; she was strangled two days before her 26th birthday. After the death of my daughter, I received counseling, along with my grandchildren, to help us deal with our loss and grief.

My story, like those of so many grandparents who are raising their grandchildren, began many years ago, most unexpectedly.

A Husband Cares for his Wife

Six years ago, my wife, Norma, was diagnosed with dementia, and appropriate medications for treatment were started. Her first few years went reasonably well, with her being able to maintain a near normal life at home until memory loss and her ability to function normally required more care. Hospitalization and follow up physical therapy for a fractured shoulder further complicated her condition and upon return home, family and home aides were called to assist with her care.

As a caregiver, I managed her medications, prepared meals with the assistance of Meals on Wheels deliveries, managed the housework, provided transportation for appointments and social outings, and was with her as much as possible for companionship. For the last year at home she had home aides three days a week, including a full weekend day affording me welcome respite time. The local Office of Aging and Youth Expanded In-home Services for the Elderly Program provided financial assistance for the home aides and respite opportunities.

Norma's condition worsened in September, 2007. After a brief hospitalization, she was admitted to a nursing home initially for rehabilitation; however, her Alzheimer's had progressed and it became just a matter of time before the end. With the exception of respite time, I spent as much time as possible with her, with daily visits to the nursing home. Her Living Will advising no further medical treatment was honored. Norma passed away peacefully Nov. 7, 2007.

For the last year at home she had home aides three days a week including a full weekend day affording me welcome respite time.

Individual Experiences Heard at Town Hall Meetings

A Wife's Difficult Decision

My grown children have accepted the fact that their father has Alzheimer's Disease and spend time with him when they come to visit. Unfortunately, they both live quite a distance away. My husband has no close living family members and my family became our family. We were very close and spent holidays, birthdays, and many other days with them, even when there wasn't an occasion to celebrate. Now that my husband is in the middle stages of Alzheimer's Disease, my family seems to be uncomfortable spending time with him. I feel very sad and lonely. Because my family does not support my decision to keep my husband at home, I rely on my support group. Without them, I don't know what I would do.

My family does not support my decision to keep my husband at home. Without my support group, I don't know what I would do.

A Grandmother Asks for Help

I am a 67-year-old grandparent raising my 13-year-old granddaughter because my daughter suffers from mental health issues. The increasing number of grandparents raising grandchildren is due to drug/alcohol abuse and mental health issues. Please put more funding into mental health issues and services to overcome drug and alcohol abuse.

Grandparents need information and assistance to find support to assist them in their caregiving role. They also need respite services such as summer camp.

The increasing number of grandparents raising grandchildren is often due to drug/alcohol abuse and/or mental health issues of the parent.

Experiences Heard at Alzheimer's Council Forums

Choosing Caregiving Over Career

I had a wonderful position. I was able to do a lot of work on the internet, keeping up with my day-to-day work, so my work never suffered. My clients loved me, but my company made it difficult. They told me that I was not to be taking vacation time or my personal time or even time off without pay because it sent a wrong message to the other employees. If they allowed me to take my mother to doctor's appointments, then anybody could take off at any time.

Eventually the stress became too much, and I quit my job. My company said fine, no problem. I had been there 14 years. I would like something to be done for people like myself, in the company that valued me only when I was the employee and when I became a caregiver I was nothing.

Over $70,000 worth of pay and benefits went right out of our lives and my husband of four months was now supporting me and my mother. My husband is a saint. I am honored to be taking care of my mother. I wouldn't change anything.

I would like something to be done for people like myself, in the company that valued me only when I was the employee and when I became a caregiver I was nothing.

Caring for an Aunt with Alzheimer's Disease

The oldest of my three aunts who live together has Alzheimer's disease, and I am the only nephew. All the responsibility for taking care of these three ladies has fallen to me. I was woefully unprepared for the emotional, logistical, legal, and medical issues that came my way. When my aunt started to get what now I know is Alzheimer's disease, I didn't understand what was going on. Her personality started to change. I tried to get her into some of the local programs but I have my own life and family to deal with. My aunts don't live with me; they are fairly nearby, but not that close. I can't go over there every day to get them to day care. I have three kids of my own and a wife who works also. I have three people to care for, but a lot of my friends are also struggling just caring for one person. We need a better system. It is a heavy package to carry. I am proud to take care of my aunts, but it is overwhelming.

I have three kids of my own, a wife who works, and it's happening to a lot of my friends. I have three times the responsibility of what most people have, but I see a lot of them struggling with it. We need a better system. It is a heavy package to carry.