Tag Archives: alzheimer’s

Going Home

The minute I changed my mind about what I am doing right now I began to feel better. I knew that I wanted to get out and get some exercise, but I couldn’t figure out how.

Yesterday I put my mother in a wheelchair and walked her for 45 minutes. It was the best I have felt in a long time. To have every pore in my body gushing out toxins. To feel my heart pump blood into every crevice of my organs. To breathe long hard breaths. To be physically challenged for the first time in many, many months was the best high ever.

The beat goes on. I am still in the same place, doing the same thing and enduring the pressure of what must be done next.

Next is the decision to place my parents in a nursing home by July 2014. It is the very thing that I was trying to avoid. I was avoiding this step when they were able to walk. When they were somewhat active. When there seemed to be hope and of course it wasn’t as cumbersome.

Right now my stepfather lays in a bed 22 hours a day. My mother sits in a recliner all day with the exception of bathroom calls.

That means that every glass of water, every snack, every meal and every bowel movement is up to me. Every question, however insignificant is a calling of my name. This is 24 hours a day seven days a week.

You would think that placing your parents in a home when it is so hard to care for them personally could be an easy decision.

If you have ever walked through a nursing home and you think about walking your parents into a place where old, frail humans are sitting in wheelchairs and staring away as the life is leaving them. To tell your parents, “this is your new home,” to leave and wave goodbye as their eyes scream for you not to leave them there. This is the task at hand.

I realize that it is a journey for me and them. They are going home, I can’t hide that from them. I realized how fearful I am of facing that possibility myself. Walking the halls of the dying is a quick realization of the very fact that we must all return home some day.

I have some standard idea that if I were old and frail that I would automatically want to go. Now I know that isn’t necessarily true for everyone. I think that there is work to be done in order to feel so free.

This “work” I speak of is being in tune with our existence.

I’m talking about the answers that our faith is giving us. Not just the things that we say we would do if there could be trouble. I’m talking about the very things we say and do when we are smack in the middle of hell.

As I approach the most difficult task of my life to date, I pray for guidance and ask forgiveness for what I must do.

We are all on our way home. We are just on a path there.

I’m thinking about a yellow brick road.

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Posted by on September 16, 2013 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.


Posted by on April 10, 2012 in Uncategorized


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