I I am an only child born late in life to my parents. My mother was 45 when she had me and one week to the day she turned 46. I grew up in a small town in a rural area of Pennsylvania. My father worked on the railroad until he retired when I was in high school. After my high school graduation, I went to a local nursing program for a year. Upon graduating from the program and passing my state boards, I decided it was time for me to move out and “spread my wings.” I moved to Harrisburg PA and got a job at a large hospital working nights. Very early one morning, I received a frantic phone call from my mother. My father had a heart attack and was in the hospital. I made arrangements with my supervisor for some time off and left for home that day. I spent the next few days visiting my father in the hospital. His condition stabilized and I returned to my job. I continued to come home on my weekends off to visit. Finally after about a year of that I realized I really needed to be at home, so I quit my job, packed my stuff and moved back home.
I got a job rather quickly working the 3-11 shift at a local hospital. My parents seemed happy that I was back home and I was happy too. I met, my now husband, Sam in 1982. My parents really liked him. After a few months, we got engaged. We both enjoyed camping and went camping my weekends off at a local lake. Early in the morning on July 4, 1983, the owner of the campground awakened us with an urgent message for Sam to call a phone number. The number he was to call was my parents house. I called home and my mother answered. She told me my father had had another heart attack and I needed to come home. I immediately returned home to only find out my father had not survived. I was just barely 21 years old and had lost my father. I was devastated! The next few weeks were just a blur.
In November of 1983, Sam and I bought our home. We purchased a nice ranch style home with a “mother in law” apartment attached. My mother moved in to the apartment. I must say looking back on that now, it was probably the best thing we’ve ever done. We moved in to our home in mid December and had even managed to put up a Christmas tree for my 5-year-old stepson, Sammy.
In June of 1985, Sam and I had our son, Tony. Things were going quite well for us. Mom was still very independent and participated in several homemaker groups. I was still working at the hospital, but had transferred into the Pharmacy Department and was now working daylight hours. Sam worked for a well-known “captive” insurance company.
In August of 1985, my husband’s ex-wife moved with my stepson to Kentucky. This broke our hearts. She remarried and began a new life there. Over the years we developed a rather good relationship. Her new husband was an excellent stepfather to Sammy. We drove about halfway, which is about 4 hours, to pick Sammy up for holidays and summers. Sometimes we would go out and visit them on long weekends or they would come and visit with us.
Sometime in late 1994, I decided I would like to change careers and become an insurance agent myself. In 1995, I quit my job at the hospital and started my own insurance business from my home. Sam also quit his job and we worked together. We went from spending very little time together to working and being together almost constantly. It was quite an adjustment but we managed. Mom was still independent, but slowing down a bit.
Business was succeeding and Sam and I were at the top of the world as the new Millennium was ushered in. Little did we know our lives were about to take a drastic change?
February 14, 2000, a day I will never forget, began like any other winter morning in Central PA, snow and ice. Our secretary had called and said she could not make it off the mountain that morning. Not a whole lot was moving that morning so we decided to close the office. I had a pretty bad headache and wasn’t feeling well so I went back to bed. Sometime during late morning, I felt a warm tingling sensation in my head. My husband thought I was having a stroke so he called an ambulance. In the meantime, I thought my head was going to pop right off my shoulders, my hair even hurt. I took a couple Tylenol and went back to bed. I convinced the paramedics that it was just a migraine and I would feel better after getting some rest. An hour or so later I felt no better so my husband once again summoned the ambulance. This time I agreed to go with them. Thinking this was still nothing more than a migraine and I would soon be back at home warm and snug in my bed. Boy was I wrong!
Not only did I not come home, I was admitted into the intensive care unit under going many tests to find out what caused my “stroke”. Details of my hospital stay are still very blurry, as morphine had become my new “best friend”. A local neuro-surgeon had been called in on a consult. I vaguely remember him sitting in my room talking to me and telling me that I had a ruptured brain aneurysm and had I not gotten to the hospital when I did that I would have bled to death by that night. The aneurysm had ruptured and somehow sealed itself enough to allow me to seek treatment but it was still leaking and I needed emergency brain surgery to repair it. My choice was to be transferred to another local hospital across town and have him operate or to be flown via helicopter to UPMC Presby Hospital in Pittsburgh, PA (about 100 miles from us). There I would be under the care of one of the best neuro-surgeon on the east coast. It was not much of a decision. In a few short hours I was saying goodbye to friends and family that had gathered at the hospital and was on my 35-minute flight to Pittsburgh.
My husband and son left the hospital soon after the decision was made to fly me to Pittsburgh to pack clothes for their stay. They were facing and hour to an hour and a half drive to the hospital, depending on the road conditions.
Early the next morning the surgeon and his team operated on me. During the operation, the surgeon repaired and replaced part of the damaged artery in my brain. He also discovered and repaired two more aneurysms that were close to rupturing. I didn’t wake up from the anesthesia for 2 days. That was a major concern for the surgeon and he had my family prepared for the worse possible scenarios…..major rehab and a long recovery. I spent a total of 11 days in the Neuro Intensive Care Unit and another 5 days on various other floors in the hospital.
I came home from the hospital in early March. I was weak but on the mend with little to no neurological deficits. By my second week at home I was walking up and down my stairs and gaining strength and very happy to be alive. God had spared my life and the reason wouldn’t become clear as to why for several years down the road.
My post op visit with the surgeon went real well. He was pleased with my progress and cleared me from his care. He said I was well enough to do whatever I felt I could do.
That was all I needed to hear. I spent the next 6-8 months traveling. Little trips and vacations here and there. Lake Tahoe, Aruba, and London to name a few. All the while gaining strength and putting my priorities back in order.
The following year I started noticing little changes taking place in my mother’s behavior. She seemed to be becoming increasingly forgetful. I just chalked it up to her age and the trauma of the previous year.
By the middle of 2002, it was very evident that something was wrong. I spoke with her physician about it and he referred her to a Geriatric Psychiatrist for further evaluation. I made the appointment and took her. After several cognitive tests, blood work and a battery of other tests, he came to the diagnosis of Alzheimer’s Disease. After speaking with me about her behavior and examining her test results he felt sure she was somewhere in the middle stages of the disease. I felt like I had been hit by a tank. Anything but Alzheimer’s Disease!
Mom is in reasonably good health and takes very little medication. Except for arthritis and a hernia that she refused to have repaired she has no physical ailments. She walks with a cane and does not go very far at any one trip.
I enrolled mom in an Adult Day Program 3 days a week. And for the first year or so, she seemed to be doing ok. As a matter of fact, I had even questioned whether or not the physician was right in his diagnosis. Maybe my mother just needed contact with people her own age. Well, like my migraine, I was wrong again!
This past year with mom has just been incredibly tough. She has regressed back to the level or about a 3 or 4 year old. It has gotten to the point where I must help her get dressed in the mornings to make sure she puts underwear and a bra on. And I must help her get undressed and into bed every night. I have to take her hearing aids and bring them to my house because it was to the point where I had to tear the house apart to look for them every morning. Physically mom is very easy to take care of at this point. Mentally and emotionally, it is becoming more and more difficult to care for her. She keeps me on my toes as I must try to anticipate what she will get into next. I have had to hide just about everything sharp in her home. Her electric stove is unplugged. I have had to contract with an agency to come in and give her a tub bath because she was giving me such a rough time. Throwing things and getting very mean with me. She always wants to go home and when I ask her where home is she cannot tell me. Just that’s it is not here, where she’s lived for 20 years now.
The sundowning syndrome that comes along with dementia has gotten really bad. She paces back and forth from her apartment to my house all evening. Not many of the conversations I have with my mother make much sense anymore. I have to try to figure out what or whom she is referring to in our conversations. Her purse has become her security blanket. She carries it with her everywhere and has taken to sleeping with it beside her. I took all her important cards out of it along time ago. More and more she calls my husband and son by different names and refers to me as her mother.
She now attends the Adult Day Program 4 days a week and I have a respite worker that comes in 2 evenings a week and every other Saturday. When mom is home I have to be with her constantly. I cannot even talk on the phone which makes it hard for business sometimes. My son graduated from high school this past summer, he will soon be off to college and I find myself once again child proofing my home.
I do not know how long I can continue to care for mom as the disease seems to be progressing rapidly and every day I have something new to deal with. The stress that goes along with care giving and having to deal with everyday life is very overwhelming at times. There are times over the past few months I’ve felt like I was going to snap from all the stress in my life. I know that stress can be a killer and I must look after my own health as well as moms. I would be no good to her or anyone else for that matter if I were to get sick again.
I started attending a couple support groups in our area and have found them to be a great help. I do not know how long I can continue to care for mom as the disease seems to be progressing rapidly and every day I have something new to deal with. I have learned so much by attending the support groups and chatting with people on the website. I think the most important lesson I have learned is that I’m not completely alone. More and more people are now caring for loved ones at home. It’s a difficult and many times thankless job. The best advice I can give a caregiver is to establish a routine and stick to it as closely as possible and to try to find the humor in things.
I find this website to be a great comfort and I am truly honored to have been asked to write my story for the spotlight. Most importantly I know now why God so graciously spared my life 4 years ago, so I can give back to my mother what she gave to me…..care and love.