RSS

Tag Archives: living with alzheimer’s

Mami and Mona

It has been two years since I began to care for my aging parents. Time has gone by quickly as I look and back reflect on how much things have changed.

I never really intended to become the full-time caregiver for them and yet I found myself in this position by accident. I wasn’t specific about what I meant when I intended to help. I of all people know the importance of being specific. While it’s been interesting watching reality unravel without my consent I can hear myself telling people all the time to be specific.

This evolving relationship with my mother who has been stricken with Alzheimer’s and Dementia has definitely had its peaks and valleys.

My life has become enveloped by their needs and conditions. This was very hard for me at first. To add to the upheavals my mother hated me. She didn’t like me in her business. She didn’t like me in my Stepdad’s business and yet she needed me more than ever.

The time that has passed has been riddled with setbacks that at their age are difficult to recover from easily. My stepfather broke his hip in February of 2013 and hasn’t walked since. Mami had another stroke in April. It didn’t disable her physically, but it certainly crippled her brain function and did a number on her already failing cognitive abilities.

Since February I have not slept in my own bed or alone. I now sleep with Mami because she cannot stand to be alone. It is scary for her to be alone. She doesn’t know where she is until she sees me. If she wakes up and finds herself alone she cries like a baby.

She is Mami and I am Mona. Even my friends call her Mami. When she is hospitalized the nurses refer to her as Mami and me as Mona. I haven’t let anyone call me Mona since I was fourteen or so. Now though, it’s okay to be Mona thanks to Mami.

My mother doesn’t know anyone’s name, except mine. She refers to my friends by her favorite nick-naming that she always did. So the list is as follows:

Gordo (Rick)
La Borracha (Dana)
La Flaca (Nicki)
El Negro (Cheech)
El Guajiro (Bobby)
Gusman? (My Cuz)

Mami is pretty consistent when it comes to the naming of those that she cannot recognize by their given names. Except for me. I am always Mona.

Ramona? She is here and present. I recognize who I am still. I’m just getting back to some of who I used to be and healing her for a while as I care for Mami.

 
2 Comments

Posted by on August 13, 2013 in Uncategorized

 

Tags: , , ,

Dementia vs Alzheimer’s

I wanted to expand yesterday’s blog on Alzheimer’s. I feel like I touched on the subject and after a comment made by Joe Rivera, I realized that there was more. His father Oscar has Dementia and if you ask the average person what the difference is between Dementia and Alzheimer’s, they won’t have a clue. We hear these terms thrown around and I would like to elaborate on them.
According to Dr. Bob DeMarco in his blog http://www.alzheimersreadingroom.com/ dementia is a symptom of Alzheimer’s like a fever is a symptom of something wrong with your body, dementia is a symptom of something wrong with your brain.
Dr. DeMarco is careful to say that not all dementia turns into Alzheimer’s, but most of it does. There are different kinds of dementia and as Joe Rivera describes his father, it can be just as heartbreaking to loved ones as Alzheimer’s disease. Both allow you to witness the progressive decline of your loved ones mentality. It is as if you don’t know this person and they don’t know you. I know Joe, and have met his father. I know that Joe and his brother have done everything in their power to assist their father as his health declines.
My ideas about the disease have evolved enormously. At first I thought that I could trigger memory by making her do things that she used to do before slowly slipping away from us. I was trying everything to jog her memory. I have come to realize that this is very much like handling a baby, only the opposite. A baby improves motor and cognitive skills, my mother won’t. The baby will eventually walk, talk, and eat on his own. My mother will decline in her abilities. The baby is prepared to live; my mother is preparing to die.
I acknowledge that it is a bold statement regarding the process difference of coming into life and leaving life. I feel fortunate that I get to participate in this event, because I would hate to miss it only to regret it later because I didn’t know how much time we had. I don’t know how much time we have now, but I do know that it will happen with great certainty. We can all make this claim and that is why I say to care for your loved ones right now. None of us know when this thing called life will end, but we know that it will. Live life to the fullest each day that you are given.
Dealing with either disease is challenging. It challenges everything that you know for sure. At times I think we could have it all wrong. It’s hard to tell sometimes if my mother is forgetting who she was, or remembering who she is. I’m not sure anymore.

 
Leave a comment

Posted by on April 11, 2012 in Uncategorized

 

Tags: , , ,

Life with Alzheimer’s, Heaven or Hell

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.

 
3 Comments

Posted by on April 10, 2012 in Uncategorized

 

Tags: , , ,