Authors

  1. LIOTT, DENE

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Are you a mystery person? You are if you are a caregiver. Why? Because most people say it is a mystery to them how anyone can be a caregiver. During my caregiving years, I discovered numerous ways that in-home care can be meaningful. What is the first thing that a person asks while in a hospital, nursing facility, or rehabilitation center? "When can I go home?" Why? Because home is where we all want to be!! I realize that sometimes it is not possible to care for a loved one at home. But, whenever it is possible, individuals should be given the option to receive care in their homes. At the least, the family should be encouraged to give it a try!!

 

Did I ever think that someday I would become an in-home caregiver? Well, it happened to me; that was my role for 15 years. First, I became the primary caregiver to my mother, who had Alzheimer's disease. A few years later, my husband fell victim to a stroke that left his entire left side paralyzed and him wheelchair bound. Suddenly, I was a caregiver to both of them. During the years that I cared for them, I learned first-hand that the life of a caregiver is a very difficult and stressful, but a rewarding endeavor.

 

During the times that my husband and mother needed to be confined to the hospital or rehabilitation center, social workers urged me to place them in a nursing facility. The social workers said that I would not be able to handle the situation at home. But, in my heart, I knew that I wanted to take them home to be with me.

 

At first, their in-home services were covered by Medicare. Their doctor wanted them to receive care on a regular basis. The doctor suggested that I contact the Aging and Adult Services (AAS) in my county to determine if there was a way to keep my husband and mother at home with me. After one telephone call, the staff of AAS came to my rescue. Far too many people are still unaware of the many service plans that AAS offers. There are plans that cover just about any difficult situation. Yes, some plans are partial pay. But, I could discuss all aspects of my problems with the staff. The staff also directed me where to turn for help to make my caregiving less stressful. I know, because I have made use of most of the programs.

 

Alzheimer's disease is a slow-moving process that takes away life that the person once enjoyed. My mother required more constant care as her vital signs diminished. My reward for caring for my mother at home was being able to give back to her [horizontal ellipsis] when I was a baby she changed my diapers. Now, I changed hers. I was able to make it through the process of her slow decline by playing with her in a childlike manner while singing and dancing for her. She enjoyed music and always laughed. Her laughter will forever remain in my heart. When I was feeling low, I would sit on the floor and rest my head in her lap as she was sitting in her rocker. She would always pat my head; yes, I still feel her tiny, fragile hand on my head. Of course, the last part of Alzheimer's is very sad, but I made it through with the help of strong support from Caring Hospice Services. The 15 years of caring for my mother has made me a better person. I am grateful for those years.

 

My husband, Rocco, was a totally different matter. He had to be transferred to and from the bed, lift chair, shower, toilet, wheelchair, and car. It seemed that I was constantly transferring him, and he weighed about 225 lb. His behavior was also a constant challenge because of the damage to his brain caused by the stroke. He had a problem understanding how long it took to perform tasks because the stroke affected the right side of his brain. He wanted everything immediately. The doctor explained his condition to me. Knowing that the condition resulted from the stroke helped me to understand his temperament. I was determined to keep him at our home. At times, I would nap on the sofa while he sat in his lift chair. When I awoke, I would see him looking at me and he would say, "Feel better, honey?" Throughout his battle with the stroke, he never complained. His courage was remarkable and he gave me courage. Those years of having him so close to me are now remembered with gratitude.

 

I realize, at times, that there is no other choice than to have the patient cared for in a nursing facility or home. However, I am one of those who decided on in-home care. That is where loved ones want to be: at home. Because of this decision, I experienced all the pain, joy, and blessings of caring for them at home.

 

The pain of being an in-home caregiver is that you feel like you are on a treadmill and you are in constant motion. We continually ask, Why did this happen to me? When will I be able to get more sleep? Do my loved ones understand what I am giving up? Who will take care of the patient if I become ill? There were several important documents that reduced the stress for our family, such as a living will and a durable power of attorney. Prearranged funeral plans allowed us to learn about the options related to costs, money held in trust, a time payment plan, and other decisions about the funeral services.

 

The joy of being an in-home caregiver is that you are able to share your day with your loved one with a laugh and music. Even while you are in constant motion taking care of daily chores, you can whistle, hum, or sing. During the transfers you can share the touching with hugs and kisses.

 

Believe me, it helps you and your loved ones to make it through some rough times. These are merely some of the ways in which you can experience a lot of joy from caregiving.

 

The blessing of being an in-home caregiver is that hospice service provides a nurse-aide, nurse, social worker, and a chaplain. Hospice is another amazing service that I can attest to from my own experience. Hospice is a special part of caregiving. Most people do not want to die alone, nor do they want to die with pain. When possible, they would prefer to spend their last days at home among the people and things they love. Hospice is dedicated to making this a reality. Along with the Hospice Chaplain, Barry Moyer, I was able to be with both my mother and my husband until and through the very end. For us to share their passing at home was truly a blessing.

 

After my mother and husband passed away, I decided to volunteer my time to emphasize the importance of caregiving at home. Today, I volunteer my time as an Aging Issues Advocate and serve on various boards and committees within local, county, and state agencies. In addition, I produce a television show on Pottstown Cable Community TV that serves as an educational and informational avenue concerning boomer and aging issues.

 

A program that is close to my heart is slowly becoming a reality. I serve on the Board for the Montgomery County (PA) AAS Advisory Council. After attending a few meetings, I presented the council with a proposed Caregiver Mentor Program. The Executive Director, Joanne Kline, presented the program to the County Commissioners. I am pleased to say that the County Commissioners approved the program, and it is included in the Montgomery County AAS 2004-2008 Four-Year Plan. This plan makes a difference in its efforts to help other caregivers.

 

In December 2005, Governor Edward G. Rendell directed the Pennsylvania Department of Aging to lead a statewide effort to address the issues of palliative and end-of-life care in Pennsylvania. Toward the end, I was invited to serve on the Task Force. We met several times with the following results. Indications are that the need for palliative and for hospice service for the general consumer and the senior consumer are very high. This only reinforces the Caregiver Mentor Program, which I am thrilled to tell you, is included in the final report directed to Governor Rendell.

 

Did I ever think that someday I would be a caregiver? Never!! Well, many years ago, within minutes, I became one. My experience as a caregiver in-home is why I have made it my goal to help, as much as I can, anyone willing to provide care to family members at home.