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Tag Archives: caretaking for alzheimer’s

The Long Goodbye to my Mami 3/11/1936 thru 4/15/2014

I have been a caregiver for my parents for almost three years. My mother had Alzheimer’s and I have had the rare opportunity to be a witness to a disease that takes the human experience backward. I have watched as my mother spiraled downward from a full functioning adult into a mere 140 pound toddler. Most of all I watched helplessly as more than her abilities disappeared.

My mother was co-dependent. She always had people around her. Her home was where all the holidays were celebrated and you wouldn’t let her find out that you were alone or doing without on these days because it was her mission to serve you on the special days. That being said I watched slowly as the crowd around her thinned.

Her illness didn’t allow her to be the star of the show anymore and the very people that she so showered with love, food and laughter would no longer find time to come to her side. It made me sad but she didn’t know. Her disease protected her from what was happening to her. So over three years I watched as her large life became very small until there was just us.

And then there was just her in her own little world.

Rest in peace Mami.

I miss you with all my heart and soul.

I thank you for the strength and courage that you passed on to me before passing on.

I shall never forget.

A picture of “My Maria’s” with a little Sugar.

.xmas

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Posted by on April 22, 2014 in Uncategorized

 

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The NPR Story Corps Interview with Lola

Lola and I had the great opportunity to talk for 40 minutes on Story Corps. It was awesome. They invite you into this Airstream trailer and place you into close proximity to one another. Lola and I got deep, in each others face and REAL.

It was kind of difficult to talk at first, but once we got going, once we got truthful and once we unmasked, we got to be who we we really are and say what we really think.

One of the highest experiences I have ever had.

I definitely recommend it.

To record this and know that it will forever be archived in the Library of Congress.

In one hundred years people who never knew us will have the opportunity to hear what we learned and where we were.

Can you imagine having the same chance in 1914?

Press play to hear the interview

Story Corps

 
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Posted by on January 31, 2014 in Uncategorized

 

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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.

 
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Posted by on August 13, 2013 in Uncategorized

 

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And the flower bloomed

Memorial Day marked one year since I moved my parents in. I have been caring for them for one year now. When I say my parents, I mean them as a unit. This week I had the rare opportunity to care for my mother alone. My stepfather came down with pneumonia and was hospitalized for two days. That was 48 hours of Mami, all alone.
In the meantime, I have been babying 4 flowering plants that my good friend Rick brought me to put some color into my spring. I must say that the plants were questionably healthy. They were dry, but still had some flowers. I threw them on the patio until I could get around to replanting them. A few days later I replanted the babies and began to care for them on a daily basis. I watched over weeks how they began to shrivel up. They were dry, so I moved them to a shady spot. Before long I had to begin cutting away at them, and little by little there was but a single stem on each of the four plants with nothing green growing on them at all. At this point I can’t really do much about it. I would shop for new ones and start again.
While my stepfather was in the hospital I had to watch over my mother. I am her caretaker; I am not the one who is by her side minute by minute. I stay by her side when my stepfather bathes, or when he is in physical therapy, and when he needs to nap. I have to sit with her every minute. If she is left alone she panics because she has no understanding of her surroundings at any given time. Having me or my stepfather next to her ensures her of her existence. She will ask every 5 minutes where my stepdad is. She will ask it as if it were the first time she asked. So I sit and answer her over and over because this is the only grasp she has on reality. This is her security, without one of us she would have nothing to base her life on and confusion would be a constant state of mind for her.
The two days that I had her all to myself would prove that this life, this journey and our experience is ever changing. That expectation affects the outcome. I had a concept of caring for my mother. Actually I have been calling it an equation. I call it the equation because I am always adding, subtracting or multiplying ideas that work or don’t work in keeping my mother at peace as she loses her mind. I will blog about this equation later.
Though trial and error I have learned some things, but with her alone this week I have hurdled over mounds of experience that has really put me ahead of the game. Our first day alone I spent two hours in our drive way, following her around making sure that she didn’t sit in an ant pile that she favors. I do this with her quite a bit, but because of the absence of my step father, it was kicked up a notch. The neighbors must think we are nuts. When I would get in her way and not let her sit in the pile, she would scream obscenities and try to hit me. Whenever she would lift her fist to me I would do something to distract her like I would just start doing jumping jacks or I would go into a Broadway dance routine. It worked. I decided that while she was verbally assaulting me that I would instead look at nature. I would focus on how the trees flowed in the wind rather than resisting. How wonderfully green everything was as we had days of rain. I do this because part of the equation that I came up with tells me that I have to eliminate negativity from my thinking. Instead of dreading a disease that runs in my family I am going to improve my ability to think positive. If I can master 100 percent, and I lose half of my brain function, then I will still have positive connections from which to draw on. Just a theory at this point, but I think I’m on to something here.
The last night that we spent alone together, my mother and I sat on the back patio for the first time in days because of the heavy rains, and we chatted forever. It was nice. I noticed one of the plants had grown green and bloomed. I got up from my seat and walked over to it. I just stared in amazement that it had not only survived, but it produced a soft purple flower. I looked over to my mother and realized that we had bloomed too. We had not only survived a dysfunctional past, a life time of illusions about who we were, but we were surviving this disease that threatened any chance for healing it all.
My mother watched me quietly and finally asked me “What is it?”
“The flower bloomed.” I told her.
“It’s beautiful.” She said with a smile
“So are you.” I said as I looked back.
“I look just like you.” She answered humbly.
“Isn’t life beautiful?” I asked her.
She began to sing:
“La realidad es morir y nacer
Porque llenarnos de tanto illusiones
La vida es un sueno, todo se va”

Translated:
Reality is to die and be born
Why fill ourselves with so many illusions
Life is a dream, everything goes away.”

I was amazed that she knew so many words to the Benny More song. I had my mother for the two days, but in that moment I had the real her. For a moment she was present, really present. This was the blooming of the flower. I shall enjoy it now because it will go away, and then come back again, but who knows when.
Like the flowers that I was caring for, my parents are withering away and you have to ask what the use is, but the blooming flower combined with my mother’s song reminds me that life is a dream and everything goes away, and then comes back. In the meantime, we care for it always.

 
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Posted by on June 8, 2012 in Uncategorized

 

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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.

 
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Posted by on April 10, 2012 in Uncategorized

 

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