A Look at Caregiving From the Inside
My Personal Journey
From the outside looking in, most individuals have no idea what it is like to become a caregiver. The caregiver and patient can go through many emotions such as loneliness, helplessness, guilt, stress, anger, resentment, fear, anxiety, grief, sadness, and depression for different reasons.
I am telling my grandmother's story to bring awareness to Alzheimer's Disease, and what the patient and caregiver go through on a daily basis. Everyone's story is different but paying attention to the patient is so important. They are still there even though most memories have faded. I have learned that in most cases the patients aren't taken seriously because family, friends and the medical community think that they don't know anything since their brain doesn't function the same way it used to.
My passion has always been to help others who are suffering from chronic stress. I had been working in the medical fitness industry for five years and saw a need for stress management fitness programming. Many individuals are looking for somewhere to turn when they are stressed. Providing customized stress management programs is important for prevention of chronic illness and to help those who are already ill due to chronic stress. I originally started to create my program to help my mother, grandmother and myself as we went through this difficult period of time. As time went on I was using it to help others and then decided to make it a course.
In 2006, I had just graduated from Rowan University and started my new job as a full time Fitness Specialist. The next day I received a phone call that would change my life forever. My mother called to tell me that my grandfather was in the emergency room with extreme stomach pain. I was surprised to find out that no testing was being done and he was given pain medicine. The doctor wanted to watch him until the morning and then evaluate him again. When shifts changed and the next doctor came in my grandfather was rushed into the operating room for surgery.
By this time, it was too late to do anything, as my grandfather was really sick and surgery couldn't help him. We were told that surgery should have been done the night before. He passed away two days later leaving my grandmother who was in shock.
Three months later my grandmother became very dependent on my family and I. She would not do anything for herself and developed severe anxiety. We were in the emergency room most nights of the week because she couldn't breathe or swallow due to anxiety. She quickly went on to develop Dementia and Sundowners Syndrome. By this time I had become a co-caregiver to my grandmother for the next 10 years. The stress was quickly building for me and it was tough to handle.
My mother and I wanted to find an assisted living facility for her before having to place her in a nursing home. This worked for a few months until she walked away from the facility on Christmas Eve. The staff called me and said to come and pick her up. She was taken to the hospital to be checked for frostbite and any other injuries she may have experienced. While at the hospital we were told that we had twenty-four hours to find a nursing home for her. Anyone who has had to place a loved one in a nursing home knows there are many things to consider.
My mother and I visited many nursing homes until we found one that was five minutes from our home. We felt that it was a good facility and we lived close by. My family took turns being at the nursing home daily to make sure my grandmother received proper care. I strongly encourage anyone who has a relative with Alzheimer's Disease to listen to their loved one. They may not know everything that is going on around them but they are aware to a point.
Within three months of living at the nursing home, my grandmother would tell me she was scared when I visited her in the evening. We found out that an aid had been pulling her out of bed by her arm. We now started to listen to my grandmother more closely.
Three months later my grandmother complained of a pain in her chest when breathing. The head nurse said, she's fine, she doesn't know what she is saying anyway. I had her taken to the hospital where I found out she had a 102-degree fever and a blood clot in her lung, I was thankful that we were visiting every day or she would not have received the care she needed.
Each time we visited the nursing home we were urged to not listen to what she tells us. As time went on, we caught more things that were happening that had to be taken care of.
On October 14th, 2015, we received a phone call that my grandmother could not move her legs. The nurse was extremely agitated at her, and my mother asked her to wait a few minutes and try to move her again. We finally asked that she be taken to the hospital to be checked. She had been mobile the day before, and nothing was wrong. The staff were insistent that she was just being stubborn and didn't need to go to the hospital. We learned later that day she had been dropped and broke her hip. The nurse placed her back in bed, and no medical care was given. She passed away on October 18th, 2015, at the age of 94.