How I Deal with Life.....

How I Deal with Life.....

Friday, May 18, 2012

Not Just Another Alzheimer's Story: My Mom's Journey

My mother had one of the hardest jobs that any person can have. She was a military spouse. She followed my dad around from military base to military base for twenty-three years. She had to make my dad’s career first in her life. She had to give up her dreams, uproot her life over and over again, create new homes in echoed-filled houses every few years, and shoulder responsibilities all alone when dad was away on remote assignments.  Dad served his country, but so did my mother.

In the past two months my father has lost the ability to dress himself. Mom has to assist him. He cannot speak an entire sentence. He seldom tries to communicate much if anyone from outside the immediate family is present. He has trouble eating because he can’t make his hands or his brain connect.  Mom has to prepare his plate in advance, cutting up his meat into bite sized pieces, making sure the food isn’t served on a plate of the same color as the meal (dad often can’t distinguish subtle variations in color and will not “see” an item if it blends into the background even a little).  I suspect his thirst and hunger signals are being affected also. I spent an entire day with him a few weeks ago and after hours of walking around a flea market I noticed he had not drank anything since we had arrived. When I bought water for him, he guzzled it down.  He had not said a word. I felt lacking that I hadn’t anticipated this occurance.

The Alzheimer’s is finally starting to take away the last scraps of identity from my father.  I am trying to prepare myself, but how does one just accept a father disappearing before their very eyes like smoke?  I can’t. But he’s going away. And I have to accept it. I have no other choice, nor does else anyone in my family. Least of all my mother.

I try and remember the conversations my father and I had right after he was diagnosed almost four years ago. He spoke of his fears. Of the dreadful certainty that very soon he would be a burden on his family. He cried and I cried with him.  One day that summer, he and I were in his backyard yard and I asked him if he had his life to do over would he live it the same way, and did he have any regrets. My father stood up to his full height, looked off into a distance that only he could see and smiled,. “I had a good life. I traveled. I did things. I saw places I never thought I’d see. I wouldn’t change anything. I have no regrets”. I try and remember those words whenever I look at the man he is now; confused, slowed down to an almost shuffling old-before-his-time, trying desperately not to leave us, yet not knowing how to stay.  

I catch precious fleeting flashes of my "Before Alzheimer's" (BA) father every so often.   They are brief. Those times most often occur in small social settings. To my eye, one who knows him, my father appears not able to process the conversations going on around him. I watch him closely as his old smile appears, he nods his head as if he’s following along, but I know he’s not. I see the way he glances slolwy away, how fixed his smile becomes, how his eyes drift.  How his hand trembles. I don't know if others notice.
My mother has to tell my father the same things over and over again. I picked mom’s car up from the local garage the other day after she had had the oil changed. I parked the car in their garage and went inside to visit while I waited for my husband to pick me up. Dad came into the room where mom and I were talking. He stood, seemingly puzzled and started to ask, “Where…..” and couldn’t get another word out. He pointed toward the garage. My mother supplied the rest of the question; “Where is the car? It’s in the garage, Jimmy. Teri went and got it for us”. He shook his head as if he understood and walked away satisfied with mom’s answer. Not three minutes later he was back again trying to ask the same question. Mom gently intercepted the question before he could even attempt to get the first word out, and he walked away again seemingly content with her answer. Mom whispered, “He’ll ask me the same question five more times”.

I don’t know where my mother gets her patience or her strength. From some deep well where her and my dad’s love and marriage has lived for fifty-three years, I suppose. That marriage is theirs, not mine. I cannot trespass into that place. I am my dad’s daughter. She is his wife. Dad’s wife, my mom, cares for him tenderly and intimately in ways I know she never dreamed she would have to. My mother and father  are almost cocooned together. Dad doesn’t like it when she is away from him for any length of time, He will keep asking where she is, his hands shake more, and he becomes agitated. My mom is the only anchor he has left.  But I see the toll it is taking on her. How long can she do this? Right now, I know she is taking it day by day. That’s all she can do. She told me last week, “I don’t know how much longer I can keep going to church. Your dad has a hard time getting dressed and he isn’t comfortable around all the people”. My mom’s one true out let is her church home.  The more my father retreats from life, the more my mom is forced to retreat also.

People tell my mother, “Call if there’s anything I can do”.  Then she doesn’t hear another word from them. Why do they do this? Why don’t they just take some kind of action? Why don’t they call and tell mom they are coming to visit dad? Why don’t they offer to take him for a short ride? Why don’t they DO something? I know. It’s because most people don’t know how to act around someone with Alzheimer’s. My dad might embarrass them or say something he shouldn’t.  But my father is dying. There is no doubt about that. There is no treatment. There is no cure. Why is my father not afforded the same respect and care as someone dying from terminal cancer?  If he had cancer, people would visit, sit around his deathbed in loving concern, bring flowers, talk to him. That, in the end, is the true tragedy of Alzheimer’s.  No one wants to be around it. They don’t understand it. They fear it. In their minds, my father has become the Alzheimer’s. So, people do nothing or little, even me, and my father fades away a bit more each day. And my mother is becoming exhausted.

She has risen to the vows she took fifty-three years ago. I look at my mom with pride, and an almost weeping amazement overcomes me.  She is tired, hurt, mourning, angry. She is walking in a land she never thought she would ever have to prepare for. And she is holding my father’s hand on this, their last journey together, just as she did for twenty-three years of journeying: from Georgia to Oregon, Colorado to Mississippi, Japan to Texas, Georgia to Texas, Crete to Texas, Mississippi to Georgia. Ending up where she started.  She never complained, not that I ever heard.  Her talent for making each empty new house into a home was taken for granted.

But, I see now, Mom. I really do see. Maybe a little late, but I do see. Whenever someone says I look like you and that I have your blue eyes, I smile because I know there is also a chance that your strength runs though my blood.   I can only hope….

Happy Belated Mother's Day. I couldn't get the words right the first try. Now they are complete.


  1. I'm a few days late in getting to this, but I'm reading it in tears. As shitty as cancer is, Alzheimer's is so much worse. It takes and takes from everyone it touches, and it's never enough.
    I think people are, irrationally, afraid of Alzheimer's. And they're thoughtless. When my husband was ill, people would say "call if you need anything", but I was too exhausted and heartsick to ask for what I needed most. " Could you make us a meal on the days we drive 200 miles for chemo so I don't have to come home and cook? "
    "could you sit with me for an hour while I cry because I'm afraid the person I love above all else may die?"
    "could you come wash my dishes or vacuum my floors? Go to the store? Take hubby out to the park and listen to him? Invite us over and promise me that for one evening we can escape this awful thing that has taken over our lives?"
    The simplest things are often the hardest.
    A good friend's father is also battling Alzheimer's. He has hospice care now and home health which makes it so much easier for his wife, and for my friend who lives 6 hours away. But it's agony still.
    You are all in my thoughts. It is a terrible, horrible thing.

  2. Cyndia, I know people mean well, and they really don't know what to do to help. I become a little out of sorts about it sometimes (I am also seeing some of the same issues with one of my best friends who is battling colon cancer), but then I blow my steam off and relaize that people have their own lives and they can't always know what families of the terminally ill go through.. I was once one of those people.

    When a family is in the midst of the stress and emotions of caring for a very ill family member, "the simplest thing are often the hardest", as you pointed out. I hope I remember this lesson and don't become complacent to the needs of others ever again. Life sure does know how to teach lessons, doesn't it? Sometimes the hard way..

  3. Unless you have walked in the shoes of someone who has a family member with Alzheimers, you really do not know understand. I am sure t is not that they don't want to visit and help but they truely do not know how or what to do or say. They do not mean to hurt you or the person with ALZ, but they just don't want to experience the hurt they will feel when the person no longer knows their name or recognizes their face. As I have heard you say many times...ALZ SUCKS!!!!!!!