I could go into an entire scientific explanation of Alzheimer’s, but it would never help you to understand what it is like to watch a family member go down that road. I would like to share my experience with the disease and hopefully bring you closer to understanding that there is much more that can be done to make life bearable under these circumstances.
When I found out that my mother was officially diagnosed with the disease I’m not sure I knew what it meant, other than she was going to forget everything. I left North Carolina to come back to Florida so that I could assist. I had no idea what was in store for me. My parents were living in filth and an infestation of cockroaches. They had a couple of jack Russell terriers that were neglected at best. The house smelled so bad that you could smell their house on their clothing. I was appalled. I had no way of being able to determine what was needed, what to do, or how to help.
I was close enough to them to feed them daily, but I couldn’t do anything about the behavior that resulted in their current living condition. I began by calling the county, asking them to visit the home and my hope was that they would find my parents living in inhabitable conditions. The goal was to open the door to assistance. That got me nowhere. The county inspector, case worker didn’t see any cockroaches, nor did he find them living in filthy conditions. I called agency after agency and while these are great organizations, I was looking for a life-preserver in the middle of a desert.
The next route I took was to call my mother’s doctor. Instead I just showed up at the doctor’s office and asked the receptionist if I could sneak in to see her. The doctor asked me to come back at lunch and I did. I told the doctor how they were living, that I was concerned about their ability to take care of themselves. That is when the ball really began to roll. More like a snowball. It got bigger and faster and more destructive as it went along.
Long story short, I had them get rid of everything and move in with me. I thought that I was prepared to care for them but I was sadly mistaken. Displacing my mother by taking everything she knew away and moving her to a new environment would prove to be disastrous. It was a daily dose of “I want my dogs, I want to go home, I want my stuff.” I thought that I would go out of my mind. She was violent at times and would break my things. She would be confrontational and want to duke it out with me.
I stayed close to the doctors. I attended all physician appointments. We tweaked meds until we found the perfect cocktail of anti seizure and anti psychotic. The first six or seven months were hell. I was angry all the time. I would wake up and my first thought was shit, I have so much to do before I go to work. They are like kids. I had to have their breakfast on the table and lunch in the fridge before I could eat and prepare myself. My resentment grew with my mother’s resistance to a normal life. It seemed like she would never be happy ever again. Not that she was a happy woman in her youth, but she never ever laughed anymore. It was just a constant torturing of my stepfather and me. I was pissed that my siblings would not, could not help me. I hated that my parents never did enough for me; on the contrary, they hindered my financial growth and ability to love others securely.
I found myself hoping for an early death.
Then one day I discovered that I was doing this out of love. Why am I so angry? I’m a great caretaker and mother. I just needed to add that one component, love. I’ve always wanted to make things better, but I was too focused on how f’d up it all was.
All I wanted was a happy mom. Everyone wants a happy mom. How do I achieve this? I must be happy myself. Every day I adjusted my attitude a little more to reflect what I wanted the outcome to be instead of how I was seeing it.
I began to focus on their nutrition, cleanliness, exercise, and giving lots and lots of love. I had to be affectionate even when she was resistant. I had to act loving toward her even though she was offending me. I just kept on keeping on. Then it started to get easier. I would wake up in the morning and jump to my feet to do all the things that make her life better. I was grateful for this opportunity to see my mother through these days. I found the shower to be a place where she would soften up. She was so resistant to taking a shower in the beginning. Getting her in the shower once a week was quite the task. Then she began to ask for one every other day. Today, when I see her getting into a negative space, I give her a shower and it changes everything. I think of God when we are in the shower. I thank him for giving me this time with her. Most times she doesn’t know who I am. She asks me if I’m a volunteer or if I get paid to care for her. Once in a while, she knows who I am for a few minutes and that’s enough for me because in those few minutes, I am the daughter that she loves.
They say when you get to heaven, and you see your loved ones, you will understand who and what you really are to one another. I feel like I’m in heaven.
Life with Alzheimer’s, Heaven or Hell
10
Apr
JUoe Rivera
April 10, 2012 at 9:58 pm
Ramona, I’ve been reading your stories a have become fascinated with your style of writing and your subject matter. My father is currently suffering with dimentia. He’s in the hospital because
no one is really coping with his needs. I try to see him as often as I can and call him daily but I’m afraid this is not enough and he’s decided to eat very little food. He believes anything that contains sugar or salt is hurting him. He was 155 lbs 8 months ago. Now he is at 98 lbs.. At this rate he does not have long to live. Oscar is 86 years old.
Maria
April 10, 2012 at 11:23 pm
Wow Mom! This was such an inspirational blog. This is a beautiful way to look at a very difficult situation. You are such a nurturer and Abuela and Abuelo and me included are very lucky to have you in our lives. God is watching you and all of us and I truly believe that your wonderful contributions will reward you. Everyone wants to feel the love of their mother, there is absolutely nothing that comes close to that kind of love and I am so happy you are feeling that love regardless of what point in time you get it. Some people never get that opportunity.
lola
May 1, 2012 at 4:27 pm
i remember in the beginning how she would make you cry now we laugh you are so right only love could make you do what you do and i know you love mommi very much i am so proud to be your LITTLE sister love you BIG sis