Alzheimer's patients view their world very differently then the people and care givers around them. They don't know how their disease effects the emotions and reactions of others because so often they are not aware of the disease symptoms as they occur. I can use a lot of current examples but I think a better demonstration would be a story, not about my Dad, but about my Mom.
As I have mentioned, Dad had a plastic surgery practice. Hillary, Paula, Mom and I all worked there. As a family business, sometimes there were perks to the job. My mom had several procedures that kept her gorgeous over the years. One year, because her lips looked a bit thin, she decided to get fat injections to her lips. If you have ever known anyone who has had this procedure you may know that for the first week after the procedure it is best not to make any public appearances because your lips are bizarrely swollen. After mom's fat injections she looked quite strange...kind of like Howard the Duck. We actually called her "Mommy Ducky" for a week. Knowing that she didn't look quite like herself Dad asked her not to come into the office during the afternoon when he was seeing patients for post-op visits and new consultations. As usual, Mom returned to work earlier then most but stayed only until after the morning surgeries as Dad had requested. One day that week, right after the morning surgeries while everyone was relaxing and grabbing a quick lunch in the kitchen, we heard a knock at the reception window at the front of the office. "Hello?" someone was calling out, "We're trying to find the hospital. Can anyone give us directions?"
Mom bounded up to the desk, picked up a notepad and pencil, handed them to the man and woman standing at the window and started with the directions, "If you go out the front of this building you will need to turn out of the parking lot going east for about a mile...". The couple just stood there staring at mom's lips. The pencil was not moving. It was as if they were in a trance, unable to stop staring. From the kitchen Paula saw what was happening and realized that Mom's attempt to help was useless when combined with her ridiculously swollen mouth. Paula raced to the desk saying, "STOP! STOOOOP! They can't hear you! They're just watching you bounce your lips off each other!!"
I miss the hilarious stories about Mom. When she passed my world imploded. I can remember thinking, "Why can't I go with you?" It is an ache that will never go away. Sara still lived in Texas at the time. She had lost her mother two years earlier after an extended illness. A week after mom passed she could see how hard it had been for me watching my mom slip away. One day she came over with a small gift bag. "I have something for you", she said. I reached into the bag and pulled out a beautiful peach colored journal. On the inside cover she had written a note. "Write everything...all of your feelings, the love, the sorrow, the anger. I did this when my own mother passed. Sometimes I read what I wrote to her and find peace through those letters and through remembering. You will find when you look back, even the worst memories will become precious." She also included two poems and a beautiful copy of my mother's obituary. I didn't remember writing in it and went looking for the journal yesterday. I did write in it...once. The letter to my mother was a five page outpouring of grief and guilt and a plea to her to comfort Dad who agonized that she might not have known how much he loved her. I couldn't read it all the way through so Mike read it to me.
I have kept so many of my mother's belongings... jewelry, photos, clothing. I recall
so much about her...her platinum hair, her worn looking feet (the only
part of her that was not beautiful), her arms, her hands, even her
unpainted nails. She was so loving and extended that love so far beyond
our family, volunteering to drive cancer patients and once even taking
in a homeless teenager until he enlisted in the army. We never heard
from him again but for a brief time he was part of our family. I have
wondered what happened to him but think, perhaps, it is better not to
know. She was so good to her nieces and nephews from my father's side,
treating them as if they were her own children. The morning after she
passed I woke to a knock at the door. It was my cousin Kris. He had
walked three miles to my house and was sobbing hysterically. "I loved
your mom like my own. She was so good to me, Holly, and the kids. I'm
so, so sorry....". I knew what an effort he had made to walk all that
way. He had serious heart problems and a staph infection because of a
over-sized pin in his shoulder. My heart went out to him. Only three
years later, his health problems took a turn for the worse and he
followed her into the next world.
Until after Mom passed, Dad was more of a distant guardian, providing
loving support when needed but never getting too close. Now with his
Alzheimer's time is running out and I am desperate to know the man who I
equally idolized and feared in my youth and early adulthood.With that in mind, I am finally using the journal Sara gave me. It will now be used to store
brainstorms, memories, and ideas for dad. This gift was intended to be
filled with thoughts and feelings. That it will be tool to help my
father is ironic and perhaps a bit more fitting. I think Mom would have
approved.
As I have begun writing about Dad's illness and our daily care schedule I find that I am finally following Sara's advice, her words resounding in my mind: "Write everything...even the worst memories will become precious". Sitting up in bed late at night I check if Mike is awake and if he is even remotely conscious I start to relate a new memory about dad. Obsession with trying to remember some of the minutia I have locked away has taken over my life. My mother and I were incredibly close; I could fill thousands of pages about her. Dad is a different story. As fascinating as my father is, he and I saw eye to eye on so few things. In some ways our core personalities are a lot alike. Both of us are quite grounded in our basic views, use our creative side as a tool for personal growth, have a very hard time accepting failure, and we are both profoundly stubborn. I also have a very high threshold of pain that I'm sure came from my father and even he has accused me of being too stoic in medical situations. This from the man who sewed his hand back together at the kitchen table in front of us. I think, however, that is where the similarities end.
Dad has a tendency to try to force his values on the people around him. It usually takes a personal experience or life changing event to cause him to become sympathetic to other people. I can recall a time when he became very ill for over a week. Before that happened, he was never particularly concerned when his patients complained of being hot or cold, sometimes even scolding them, "Quit your belly aching". That all changed when he got sick. The chills brought on by his illness were so uncomfortable that he never again made fun of his patients when they complained of feeling cold...in fact he went the extra mile to make sure he had plenty of blankets and warm socks in the incubator to make sure they were nice and cozy. Lesson learned and learned well.
Once when Allison and I were visiting Dad, I received a phone call on my cell from Elaine, one of my cousins. She was troubled because her mom was critically ill and Elaine needed to talk to someone who had been there. I went into the back yard with Buddy and walked around talking to her, trying to offer some insight, leaving Al to visit with Dad. While on the phone we also talked about Elaine's dad, Joe. He was my dad's youngest brother. In the course of the conversation we learned how much alike our fathers were, both very set in their beliefs particularly about career goals for their children. It seems my dad wasn't the only O'Houlihan man that thought the only worthwhile career pursuits were medicine and engineering. We finished our conversation with promises to keep in touch on a weekly basis and I made my way back into the house. As I entered through the patio door I could see Al and Dad sitting at the kitchen table deep in conversation.
"Miss me?" I asked suspiciously.
"Nah, we were just having a conversation about what Al wants to be when she grows up", Dad said with a look of personal pride.
"Oh, I already know that", I replied, determined to cut off this destructive pattern before it started. "Circus acrobat, right Allie?"
"Uuuugh!" He groaned loudly, slumping and shaking his head in disappointment.
"International spy?" I guessed again with a wink to Al.
Her worried face changed to amusement and she lit up at my second suggestion. "YEAH!!" she laughed enthusiastically.
"Noooo!" Dad started to protest, but I cut him off.
"Allie, don't live anyone else's dreams. Do what makes you happy", I said kissing her on top of her head.
Fortunately Dad didn't dwell on this little power play and we still had a very nice visit.
On the way home I asked Allison what her grampa had suggested she should be when she grows up. She rolled her eyes, trying to remember and I interjected, "Engineer or doctor, right?"
"Yes!!" she said, equally surprised and relieved that I already knew. "How did you know?"
"He did the same thing to me, your uncle, your aunts and your cousins. He also tried to do that with Kelly but I wouldn't let him. Doctors and Engineers are fine things to be if that's what you want to be. Is that what you want, Al?" I asked.
"No", she admitted.
"Well, there are all kinds of engineers, but if you don't want to be an engineer and you become one anyway, do you know what kind of engineer you will be?" I baited her.
"What kind?" she asked, confused.
"A CRAPPY one!" I smiled.
We laughed. It was a great way to end the subject and make sure she knew she wasn't letting anyone down by going her own way.
(to be continued...probably tomorrow)
No comments:
Post a Comment