Sometimes I feel like no one can hear me or see me. I feel invisible to the world. Even though I live and breathe in the same world as everyone, in reality, as a caregiver, I am living in my mother’s world…the world of Dementia/Alzheimer’s. If I, as a caregiver, feel invisible, lonely, and afraid, I can only imagine what a person with dementia feels, especially on a day filled with confusion. They say that when trauma or tragedy occurs, it either brings families closer together or it tears them apart. In my case, my family fell apart. I was angry, frustrated, lonely and afraid. I could not understand why my siblings had somehow vanished.
My mother became ill in October 2011 and was hospitalized five times in the course of eight months. The first time she was hospitalized, my three siblings came to the hospital and were there by my mother’s side. We thought we were going to lose her. That’s how serious it was. She had sepsis, acute renal failure, several strokes, and was transferred to another hospital after one week. Only one sibling was with me at the second hospital. He lives out of state and had to return home. My other two siblings did not come to see her while she was there. Upon leaving the hospital, my mother developed Chlostridium difficile, or C-diff, for short. It is a horrible infection in the intestines that is hard to get rid of, especially in the elderly. Since my mother was already in poor health, it made the infection more dangerous for her. She is diabetic, has fibromyalgia, history of stroke, Polymyositis, Parkinson’s, dementia, and so much more.
I was a complete mess. Since her admittance to the hospital, I was asked what I wanted to do in case she needed resuscitation. At the second hospital, I was again, asked about the living will. I could not answer. I did not want to lose my mother, but I also did not want to see her suffer. I have Power of Attorney, so it was my decision. My sibling, who had been with me through most of the stay at the second hospital, is second in charge, in case I am not able to care for my mother, so I spoke with him. My other siblings did not really have much to say. I live with my mother and I am the one in charge, so I assume this made it so much easier for my siblings to just let me handle it all. I don’t know if they knew or if they cared, but I didn’t think I was handling it all. My blood pressure shot up, I was always and still am to this day, extremely stressed, and I was terrified. I slept in the hospital room and watched her sleep. I had to make sure she was breathing. This was all new to me and I did not know what to do. I had three siblings, yet somehow, I was alone. I had become an only child, it seems.
I was also taking classes at the university nearby in the evenings and I was falling behind in my studies. I had recently gotten hurt at work and was home recovering…or should I say, supposed to be at home recovering.
I have three grown children. I had planned on finally living my life. I had decided that I would finish college when my youngest children (twins) finished high school and began their college education. Unfortunately, things did not turn out as I had planned. I know that things do not always work out the way we hope, but this felt so unfair. I was so angry and completely overwhelmed. I had to quit my job to stay home full time with my mother while my siblings continued with life as if nothing. Financially, it was a poor decision, but I didn’t think about that. I had made a promise to my mother many years ago, that I would always take care of her. Now, the table had turned. It was MY turn to be there for her. Little did I know, caregiving was an incredibly difficult and exhausting job! I was no longer able to enjoy my intended life of freedom and independence. My children were grown, but I now had another child…a 72 year old child and I was confined to the four walls of our home, because of her illnesses. The difference between any child and this new child was that children can be taught and learn as they grow and develop. This child cannot be taught and does not always remember. Tantrums are not easy to deal with. This child does not learn and develop. It is extremely exhausting…physical, emotionally and mentally.
I lost those I thought were my friends. I lost my siblings. They each had a “life.” But wait…so did I! That was not fair! She is OUR mother, yet I am the only one here. My siblings knew I had quit my job and not once did they come by. One sibling came by once, and that was the evening I went to collect my things at the place I had been working at. I had to go get my things, so I went that evening. He has never come back. The sibling that lives out of state does call to check on my mother and I do appreciate that. I know my mother does too. The other sibling does not come over for fear of contracting something and taking it home to his children. Funny thing is that he is a firefighter/paramedic. Who knows what he deals with at work and takes to his family from there.
I have a daughter who also lives with us and she is fine. I have had Rheumatoid Arthritis since I was 14 years old. I am quite older now, of course, but my immune system is not good, yet I am taking care of our mother. If anyone should be worried about anything, it is my daughter and especially me, since I have the most contact with her. Without insurance, my arthritis and overall health has gotten worse. My siblings know I am not working, but they have not, to this day, called to ask if we need anything. They have asked if we have enough food, or if I need to get away for a just a little bit, even if maybe for a walk or just to get a little time for myself. I am determined though, that I will make this work. Somehow, it will be okay. It has to. There is a saying that “If God brings you to it, HE will bring you through it.” I sure am counting on that!
Since we have just about gone through all our money, I decided that I would try to get a job over the summer. My daughter, a strong, young lady who has been through her share of medical issues (lump in breast removed her senior year of high school and endometriosis) has been my rock and best friend. She would take over while I worked at least part time to bring in some much needed money to pay bills, buy groceries, get medicines, pay doctor bills, and the list goes on. Unfortunately, my mother got sick again, so now the jobs actually offered to me were no longer an option. I can’t help but wonder what God has in store for us now.
One day, as I sat in the chair in my mother’s room (which was my bed for a long time), I watched my mother unable to hold her spoon as she tried to eat, so I quickly jumped in to help her. I watched her as she ate and studied her facial expressions. I imagined what it is like for her. I know that living in her world must be very frightening. If I think about it, though, and as I learn to live in her world, it has turned out to be quite a blessing. When my mother is no longer here, I will be sad, yet, I will be honored to have had the privilege to have been here for her. I cannot say that I will not have any regrets, for I believe everyone, as a human, has regrets. But I will not have any regrets when it comes to having chosen to stay home to be with her. I regret being angry with my siblings, but I do not want to waste another moment being angry. It does not do anyone any good, especially me. I don’t have time to be angry. I simply live my days one day at a time, one breath at a time. I enjoy and bask in the life that is before me.
Everyone is so consumed with their busy lives, full of activities, and social gatherings that one does not think of those that care for our loved ones. God, or our higher being, has other plans for us. He just doesn’t always give us a hint as to what they are! That can be a good thing, I suppose. If we knew we were going to hit some really rocky roads, we may take a detour! It is only through our trials and tribulations that we become who we are. We grow and hopefully, we learn from what we are being taught. Otherwise, we remain where we are and keep circling that same mountain over and over until we finally learn our lesson to be learned. We become or remain angry and bitter and do not appreciate what is right in front of us. We lose sight of what is truly important.
I am a firm believer that there is a reason for everything that happens to us. I may have lost a lot of what I used to have, but I have gained tremendous respect for caregivers and incredible respect for my mother. She is an exceptionally strong woman. Giving up is not an option for her. Pain and confusion, along with so many other setbacks that nearly took her from us does not stand in her way. My mother has remarkable determination and perseverance. She does not give up. I am proud to say that I have inherited this from my mother. I only hope that I pass this trait on to my children. No matter what is thrown my way, I know that I can and will fight the fight with dignity. Plus, I have God on my side, which of course, means I am in awesome hands and am on the best team there is.
In order to try to understand this new life and appreciate the changes that are taking place, I realized that it is necessary to have an adventurous spirit and be willing to be an explorer in this new world that has been shown to us. Let us always remember that there is always something to learn. Our setbacks may not really be setbacks, rather stepping stones to the next level of maturity and of growth in ourselves. Without learning patience and without going through difficult times, we do not grow. My life has been crazy, and turned upside down, but I have learned so much and am deeply grateful and humbled to have this honor of caring for my mother. It is exhausting, but my mother and I have a wonderful bond that only she and I share. Only WE understand it. It is OUR language. It is something that no one can ever take away. I will treasure this bond always.