Sunday, December 14, 2014

Reality- Part 2

And things change. After switching meds, her behavior had changed. She was groggy. The woman who used to walk incessantly was now shuffling her feet, and by the end of the day she was bent over at the waist, her body at a 45 degree angle. She had fallen, having tripped over the transition between the tiled floor and the carpet. Then there was another call; she had fallen because she missed the chair when she sat down.

My son and I joined her for her Thanksgiving dinner, and my husband stayed home with my daughter who was suffering from pneumonia. We could hardly keep her seated, even though it was hard for her to walk. In her mind, she was the woman who walks, the woman who checks in with the other residents, thinking she must take care of them.  I had to get her dinner so that she would stay seated. As long as I was feeding her, she was somewhat content.  But while my son and I were feeding her, she tried to grab the styrofoam plates and eat those as well.  Even writing it, it sounds crazy. Why would someone try to eat a plate? But one of the side effects of the anti-psychotic meds is increased appetite. She wanted to eat everything.

That evening, my son and I constantly fed her and constantly had to keep her from eating non-edible items - the plates, my fingers, her fingers.  If it was in front of her, she tried to put it in her mouth.  Luckily, my son took many trips to the dessert table to get her a cookie, and eating cookies kept her occupied

A few days later there was the phone call. She was going to be admitted to a geriatric psych ward. As awful as this might sound, it was a good thing.  She was going there to get her meds straightened out and hopefully to get the old “Lee” back, the mom I had  known just a week ago.

I was positive about this decision. We had gone down this road once before, and it had been wonderful.  It had worked.  This time the ward was in a different hospital, but she was to be treated by the same doctor who had treated her the first time.

But then I went to visit.

It was awful, not the place, but who she had become.  It was all I could do to not cry during the visit. Her skin looked paper thin. She couldn’t walk.  The same woman who previously could walk circles around you was in a wheelchair. I talked with her. I held her hand. Mom tried to talk with me as well, but it was as if there was a haze hanging over her. Her voice was softer, her speech was slower, and she had a hard time looking up. Her way of being seemed to be drug induced even though she was no longer on the meds.

The nurses let me stay a little later than visiting hours, but I had to go. I weaved my way through the maze of hallways to get to the exit and out to my car. Staving off the tears, “Just make it to the car. You can do it. Almost there.”

And then I lost it.

I called my husband and explained the situation. He let me talk. He let me cry. Through my tears, I explained to him how alone I felt. Alone because nobody was living this hell with me. I was taking this on alone. I was visiting her. I was taking the calls about medicine. I was showing her that her family and friends love her, despite the disease. He told me he was sorry. Sorry that I had to deal with this. Sorry that I felt so alone. And sorry that he couldn’t fix this for me.

And then I put it out there.  I told him what I was truly feeling.  Seeing my mother tonight, in that condition, I felt as if I could see the end. And I was in no way ready for it.





Wednesday, December 10, 2014

Reality- Part 1


Being a caregiver for an Alzheimer's patient is tough. Even tougher when that person is someone who you love. Few people, unless they are a caregiver, truly understand what it means, what it takes. Others don't see the constant paperwork you have to deal with. They don't see the tears because you hide them – you don't want to cry in front of strangers. They have no idea of the patience it takes. And the strength. It takes so much strength to get through each day.

I have written about it over and over, all of it, but especially about the pain. The pain of seeing my Mom wither before my eyes. The loss of who she was and watching her turn into who she is now. The pain of never knowing what I am going to experience when I go visit. Will she know me? Will she let me visit with her? Will she be sad, confused, frustrated, and cry or will she be happy and want to walk and dance with me? It is a game of chess in which Alzheimer's disease is always one move ahead.

I have come to deal with my new normal as well as anyone could. But one day I received a phone call that changed my life again. A friend wanted to talk. But I noticed that the voice on her message wasn't her normal cheerful, bubbly voice. I called her and after some small talk, she finally got down to business. She described what had been going on with her mom lately. Everything, and I mean everything, sounded familiar. It took me back seven or eight years in my own life. Every one of her stories sounded like an experience I had with my mom, and my heart broke.

I did my best to be as supportive as possible. I told her what I knew. I suggested steps to take, and described what my sister and I had done for our mother. I commiserated, and I told her to call me whenever she needed me before I hung up the phone. And then I cried. I cried for my friend. I cried for her mom. I cried for her family. I know what they face - the struggles, the decisions, the heartbreak. No one wants that for anyone, and especially for a close friend.

In my head, I was now ok with, had come to grips with, where I was with my mom's disease. I had accepted it and the life we had, but somehow I still thought that it shouldn't happen to others. The immensity of the disease rattled me once again. My friend's mother was now suffering from the disease. Not a grandparent, which seemed to be the norm. I was accustomed to hearing about parents, including my own dad, taking trips, going to concerts, watching the grandkids, but not suffering from Alzheimer's.

My journey with my friends and Alzheimer's was not over. I had another friend out west whose mother-in-law was suffering from Alzheimer's. Her mother-in-law had been diagnosed a while after my mom had. My friend and I had sent many texts back in forth. We shared good days and bad, asked questions and offered support. And then it happened. Her mother-in-law passed away. Before my mom.

How could all this be happening? The reality of the situation, my situation, my friends situations, took a toll. I wasn't ready for my friend's parents to die. I wasn't ready for their parents to be diagnosed with dementia and Alzheimer's and I certainly was not and am not ready for my parents to die. I am not sure, no matter the circumstances, that anyone is really ready for a loved one to die. Sometimes we come to accept that it is inevitable, but I was not at that point. I still am not.

I cannot imagine my life without my parents. I don't want to imagine life without them, but unfortunately it is becoming more a reality each day, especially with my mom.

To be continued...

Tuesday, December 2, 2014

Break Is Over.


I can hear the lifeguard whistle blowing, screaming out, letting us know that break is over. Tan, gangly little bodies running and launching themselves in to the pool because that 15 minutes was torture. As a kid, having to sit and wait and watch the old people swim laps without getting splashed was so boring.

So here I am (not tan or gangly) launching myself back into the writing pool. I took a break and I am not sure why, but I guess I needed a rest. 

I use writing to process feelings, to heal, to empty thoughts and ideas out of my head. I haven't stopped needing any of those things, but up until tonight, I haven't taken the time to sit down and write.

You may see a blast of blog writings in the next couple of weeks. I have a lot to say, a lot to release and I must take the time to do this for my own sanity. Here we go...