I wrote this so that everyone that has ever had to deal with a parent with this illness understands what the person is going through. My mom is so special and so many of her friends and family have forgotten all of the things that she did for them up until her illness caused her to become so dependent on other people.
Through My Mom’s Eyes By Fran Lewis
Four years ago I was able to drive a car and go shopping by myself. I was even able to eat in a restaurant and have lunch with my children and my sister. I took my own medications; I ran the journal for my organization. I even went around collecting money for ads to promote different businesses in my neighborhood. At times I had trouble remembering where I was going and when I supposed to get there. Then, all of a sudden I began noticing little things. I could not remember where I put my glasses or my car keys. I could not remember why I walked into a room or what I was looking for. I began overtaking my meds because I did not recall taking them to start. This proved to be dangerous and almost fatal.
If that was not bad enough I could not remember what I had eaten for breakfast or that I was even hungry. I forgot to get my bloods tested each month thinking I had them done the month before. I never remembered calling the doctor for the results because I did not recall taking them or not taking them at all. Worst of all was my ability to drive a car and my independence was about to come to an abrupt halt. Everything about my life was about to change and there was nothing that I could do to control it or stop it. All my life I was able to manage what I was going to do and where I was going. I even managed the lives of my children so well that they turned out to do and be exactly what I wanted them to be. A mother could not be more proud.
In May of 2003 I began to realize that I was not the same person that I was the month before. I did not know that I had had a mini stroke because not one of my doctors realized it or had me tested for anything like that. Then on the morning of August 25, 2003 I woke up in terrible pain. The pain was in my back but I could not describe it. My lack of understanding of what had happened was frightening because I could not begin to explain to anyone why I was in pain or what had caused it. I became frantic and called my sister to come down because I did not want to scare my daughter. She called 911.When they came I was totally incoherent and could barely tell the paramedics the degree of pain that I was in or where it was located. This was the beginning of the end as I knew it.
I was transported to the hospital with my daughter and my sister in the ambulance along with me. The emergency staff was amazing and did all that they could to try and help find out what had caused the pain. Unfortunately, they were not exactly correct in their diagnosis. They thought that I had an aortic aneurysm but in reality I had overdosed on my blood thinners and had a bleed out in my left shoulder that had to be addressed before it became fatal. Because of this I could not remain in the trauma center where I was taken, instead I was taken to another nearby hospital and placed in ICU when I got there. Unfortunately, something happened between hospitals to cause my mental status to deteriorate and no one wanted to say or admit why in either hospital.
With a breathing tube down my throat I could not even express anything to anyone except with my eyes or tell them how scared I was. My family was not allowed to see me and I became even more afraid. The following morning I heard the heart surgeon who I had never met, call my daughter to come to the hospital to sign consent for the operation. As a matter of fact, he said it was so serious she could give her consent over the phone. But, she got there in time to see me before they wheeled me into surgery and tell me that all would be okay. It was not okay. You know how people die and have outer body experiences, well I had something like that but it was hard to describe what. I died twice on the table and was revived because my daughter would not allow them to give up on me or allow me to sign a DNR. When I finally came out of surgery and was awake I realized that I could not speak because of the tubes. I also did not know what had happened or why.
After 2 weeks in the hospital I was sent home only to return three days later with clots in my legs. At that point the hospital staff placed me in rehab and decided to find out what was really causing the problem I knew there was a problem, why couldn’t they. I could not work with the speech therapist because I could not remember how to add or subtract simple numbers when she asked me too. I could not even remember what year it was or the borough that I live in. Simple everyday things were becoming impossible to do and to remember. But, the only got worse when I got home 3 weeks later.
I realized that I could not stay at home alone any more. My children hired home health aides to assist me for part of the day. I could not take my meds by myself and my daughter had to prepare them and give them to me twice a day. I could not drive anymore but refused to allow anyone to sell my car. I hoped in the back of my mind that I would get better and start to be my old self. But, my old self was no longer there. Slowly, and deliberately, the mean and terrible web weaved by Dementia started to overtake my mind and my body. It creeps in slowly without any warning and BAM it just overtakes you with venom. I did everything for everyone in my family. I drove my friends where they had to go when they did not have a ride. But, when you have dementia and soon to be Alzheimer’s everyone forgets you and you no longer exist. You become and feel invisible to yourself and to others. No one remembers to call you to see how you are or come to visit you. I really think that people only need you or call when you can do something for them, family included. My nieces and nephews who I helped throughout their lives never called me or even call me now to see how I am. Sometimes, when they come to see my daughters, they stop by for a short visit to say hello. But, I really don’t remember the last time that happened and at times I really don’t know who they are or why they are in my house.
Well, the worst had not yet hit me until I went to see the neurologist for the first time and he started to ask me simple questions that I could not answer. I could not tell you where I live or the state I live in. I could not tell you how many quarters are in a dollar and I was a full charge bookkeeper. I could not even tell you what I would put in a grocery list or what I wanted for lunch that day. This became more frightening until I realized that I needed some major help just to get along on a daily basis. It became even worse when I was taken from a restaurant on Mother’s Day in 2005 and came out an entirely different person. Imagine begin able to take care of yourself somewhat before entering a hospital and leaving totally helpless and scared. My children realized the difference and got to work to get me some extra help. Unfortunately, if it were up to the staff of the hospital I would have been placed in Nursing Home and left to be forgotten with the rest of the people who have this terrifying, humiliating and awful disease. I still wonder, in the back of my mind, why the President will not use his power to encourage stem-cell research to find a cure for this and other horrible diseases. I also know that there are drugs out there that will reverse this disease and why don’t we have them here in America. I might not be able to tell you what I feel, but watching television, listening to conversations I know in my own mind that I am being deprived a full life because no one seems to want to push it and make these meds available to those of us that need it.
After a while I began to get worse and going to the neurologist became unnecessary. He told me that he did all that he could do but if my family needed him, they could call anytime of day and he would help with understanding the disease. He is amazing and has kept his word a thousand times over and more.
I now have Alzheimer’s disease and there is no cure. I cannot go to the bathroom alone or be alone because I cannot remember that I even went to the bathroom or have to go. I never remember eating so I get to eat all day. Of course that could be a plus if I was a big eater before, but I wasn’t. I have four strangers that take care of me around the clock because I cannot be alone. I do not like to be alone and as the disease progresses so does my behavior. I never used bad language as a child and would punish my children if they did. Now, I can’t seem to control it at times nor can I control my aggressive behaviors or my mood swings. It is not menopause or hot flashes, it is the disease. I even repeat myself because I cannot remember saying whatever I said in the first place.
I live at home and my daughter sees me daily to set up my meds, give them to me and make sure that the aides are taking good care of me and she makes sure that I have plenty of food in the fridge. On Wednesdays and Fridays she walks with me and the aide to go to the stores and buy things. On Thursdays my other daughter comes and we go out to lunch. Last week, I think someone came to see me from my family but I don’t remember who.
None of my friends call me, the sad part is these people live in my building, I know them for over 40 years, and they never ring my bell to say hello or see how I am doing. You never know when this disease will get you or anyone in your family. They better hope that their family’s care about them the way mine cares about me. My doctor wanted my children to put me in a home but my daughter, the one with power of attorney and my health proxy would never allow it. He now says that if not for her I would not even be here. I guess that I am not living the American Dream anymore. But, I would rather be on this side of the world then on the other. At least I can still see my children and I do know who they are and my grandchildren. Oh Yeah! Next year I might even get to go to my grandson’s Bar Mitzvah. I really hope I live to see it.
For all of you out there that do not call your mothers and fathers to say I love you and forget all that they did for you, start remembering it and say thank you. I am so lucky that my children appreciated all that I did and never once hesitate to make sure that I am all right now.
Maybe, there will be a miracle in the near future and I will be able to remember some of what I lost. If not, I hope that others will be able to benefit from whatever medical science has to offer. I hope it is soon.
Written by her daughter: Fran Lewis
My mom is at home and she has four home health aides who are amazing. Her doctors have done all they can do for her. There are no new treatments out there and no new medications approved by the FDA for help her or anyone else with this disease. I know that there are medications being tested in foreign countries and many types of research being done, but not here in NYC but in other states. I only hope that someday our government decides to really put some money and effort in curing or at least halting this disease by giving more money for Alzheimer’s Research. I just came from my mom’s house and I wanted to tell her about my two books and my second being showcased or spotlighted on Author’s Events by Ernie Johnson. I did tell her and she smiled. I know that somewhere inside of her she is proud of me.