My son was born two years ago. Nothing pains me more than knowing he will never know my mom for the person she was my entire life. That someday she may not know who he is at all, when one of her biggest dreams was for a grandchild, is a terrifying and unsettling thought. Yet it also brings me joy to know how much his presence on this earth has helped her. She always says that having him in her life makes what she is going through so much easier, and that she hopes everyone suffering like she is has a baby in their life to love.
Lost, anxious, depressed, afraid, angry, confused, and overwhelmed. These are just a few feelings that I am sure my mother faces on a daily basis. It saddens and enrages me that this is happening to her at the young age of 65. Accompanying the huge range of emotions she is dealing with are the emotions of her loved ones hoping to provide her with the best care possible through this process. It is hard on us all.
At this point, you are probably wondering what exactly it is that she is going through. Unfortunately, our family is wondering the same thing. For the past few years we have been slowly watching my mother’s decline. It has been scary, painful, and frustrating to say the least. It has already been a long journey for my mother, father, brother, and I, and we are still looking for answers and an accurate diagnosis. We don’t yet know if it is psychological or neurological, but there is no doubt that something in her brain is not functioning the way it is supposed to. Words like “dementia” and “Alzheimer’s” have certainly been thrown around.
It started out with some garbled speech. She couldn’t find the words she was looking for and stumbled over words that she did know. We then brought her to our primary care physician to rule out a stroke. After some testing, they could find no reason for her symptoms. This brought on a slew of appointments with neurologists, psychologists, and psychiatrists over the last few years. Tons of tests were done including CAT scans, PET scans, a spinal tap, and more. We are currently awaiting results of some more specific frontal lobe testing. She has also tried many different medications to no avail, and we are still scrambling to find the right fit.
During this time she has had periods of stagnancy, where she would go without any decline whatsoever. This gave us hope, because we were able to get acclimated to her – and therefore our – “new normal.” There have also been periods of rapid decline, where she is suddenly unable to do multiple things that she had just been doing daily.
Currently she has trouble with her memory, reading and writing, and performing daily tasks that the average person can do without much conscious thought involved at all. What’s troubling is that she is either aware that she is forgetting or having trouble, which makes her sad and frustrated, or she believes she can do something without help, which can end up with her feeling embarrassed or even getting angry with us.
My mom was always the woman who took care of all the children in the neighborhood. Other parents would come to her for advice, and whenever a child needed help in school, got hurt playing outside, or just needed someone to talk to, she was the first person they came to. Throughout her lifetime she also helped many adults by offering them a place to stay or giving up her time and resources to make sure they were taken care of. She lived a selfless life. It isn’t fair what she is going through.
Still without a sure diagnosis, we don’t know whether there will be treatment or a cure for what she is dealing with, or if she will continue to decline until the time she is no longer with us. As difficult as it may be to lack the answers we so desperately crave, the uncertainty leaves room for hope. It can be easy for me to get caught up in the stress or self pity that accompanies caring for a sick parent. I feel that we should have had much more time before anything like this happened. I mainly hope that I can be half the woman she raised me by example to be, and that I can support and love her no matter where this journey takes us next.
By: Rachael Mariani
My name is Rachael Mariani. I am a 24 year old stay at home mom and the author/owner of Uninvincible Mom, a motherhood and family lifestyle blog that is set to launch soon! My goal is to empower others in their imperfections, and to promote quality family time with an emphasis on the children.