I never put my parents into the equation of life. They were vibrant, they were social, they traveled and they raised 4 very happy, thriving children. Then it happened; rather quickly and rather noticeably. First my dad became ill. It started with shortness of breath, and went down hill from there. He had several blood clots in his lungs and a few months later a triple by-pass surgery. He recovered, and then it was my mother’s turn.
One day, my mom's dryer broke, so she decided to stuff her wet laundry in a trash bag and carry it up my driveway to my second floor and dry them in my dryer. After she finished drying them, she put them back in the trash bag, dragged the bag back down my driveway and up 12 stairs to her apartment. A 77 year old lady carrying a trash bag full of wet clothes can’t be good, right? We quickly found out just how not good it was. She had a heart attack, and needed a by-pass in her neck. After that by-pass, the worst of it all started. She began to forget. At first, it was subtle. Many times I was left wondering was it me forgetting, or was it her? We would joke with her, and she would tell everyone, "My kids think that I have Alzheimer’s." Then she would make a face!
Then my mother started to get quiet. That was odd for her. She loved life and was a kidder. She has a great sense of humor, and everyone loved to be around her. She was perfect, and when I say perfect, I mean it. Her hair was perfect, her clothes were perfectly ironed and her parties; all done with perfection. If you came for Thanksgiving dinner, holy Toledo, you were in for a treat! We had a perfectly ironed tablecloth, really good china placed perfectly around our large dining room table, ironed napkins, and good polished silverware. The soft music played, there were flowers on the table, hors d’ouvres prior, along with cocktails, and lovely deserts to end a wonderful meal.
My mom and dad started their journey very young and very poor. They got married at City Hall, and could only afford a Coke and Twinkie for their dinner. They prayed the Rosary daily and their Catholic Religion was the basis of their lives and their family’s. My brother came two years after they married, then my sister, then another brother and finally me. My parents taught us right from wrong. We all got a long, and we didn't dare to disobey them. They never swore, and my dad worked while my mom took care of us. We didn't have a lot of money, but we made the best of things. We went camping, we went to the drive in movies, and out for ice cream. We always were with their friends, and their children. We always had fun! Lots and lots of fun.
Pretty normal family right? I think so. The reason I mention all of this is because with Alzheimer’s, her behavior noticeably changed.
Mom, my sister and me.
We waited too long to get medicine for her. What can I say? We were in denial. So we took Mom to a memory specialist. They gave her a test that took an hour and a half. They asked questions like, "What year is it?” “Name 4 animals.” “How old are you?” “When were you born?” “Who is the president?” “Draw a clock and point the arrows of the clock to 10:15.” She didn't do badly, but she didn't do great. They prescribed Aricept and wanted us to return in 3 months. Aricept doesn't cure Alzheimer’s, it just slows the process. Her behavior continued to change, she wasn't perfectly dressed, she had difficulty with short term memory. She became quiet. Very quiet. I didn't realize why at first, and then it became clearer later. My friends would see her out, and say to me, "Oh I saw your mom, she looks great!" I would say to my parents on several occasions, "Oh, so you and Dad saw Renee at CVS?" and they would both respond, "We had no idea who that was." She was very good at faking it, very good indeed!
The reason she became quiet is that she couldn't fake it anymore. She didn't recognize people, so she got quiet and just observed. Her friends took her out a couple of times, and they said that she didn't say anything and didn't eat anything. That was extremely odd for my mother. Like I said, she was fun and full of life. You see, she couldn't jump into a conversation anymore because she didn't know who they were talking about or what they were talking about. It is like amnesia, well sort of, except, unfortunately, you never get your memory back.
Her best friend in the world, Lorraine, took her out to lunch. Lorraine’s husband, Bob, had died shortly after Christmas, but my mom kept asking her, "Where is Bob?" And Lorraine would graciously say, "Remember he passed away?" Mom would answer "Oh, yes, that’s right." and then 5 minutes later, she would ask the same question again. "Where is Bob?" During that lunch, my mom opened up to Lorraine, and said "I am really afraid, I don't remember things anymore!" My mom’s friend who has all the empathy in the world, said, "I know that this is hard for you, and I know that you are afraid, but don't worry, I promised to be your friend forever, I will be here for you always!" A true friend is hard to find, and Lorraine is definitely a true friend.
My parents are basically living the movie the "Notebook." Two people who are in love, and will stay together to the very end, despite how hard the journey is.
It’s funny. My father defends her to the end. He is with her 24 hours a day. A day filled with my mom repeating things over and over, a day that sometimes has anger, frustration and despair. She can be happy, she can be mad, she can swear, (which I never, ever heard her do prior to the Alzheimer’s). She could stay all day in her robe, but he makes her get dressed and then takes her out for a ride. Her hair isn't perfect anymore, she looks like she just doesn't care, or maybe she doesn't remember how to do it. She is really self conscious of her hair, she rubs her hands through it and says that it looks a mess.
We visited my aunt in Rhode Island last weekend and my Dad told all of us that she was an excellent wife and a great mother. He professed his love to her in front of all of us. We all said, "Awww!"
We are going to have a huge 60th anniversary party for them this summer. It is really year 59, but we don't think that we should wait another year for this event. Alzheimer’s is degenerative, it doesn't get better.
We brought my mom back to the memory doctor and he prescribed Namenda which works in conjunction with Aricept. He also prescribed Effexor which helps with her mood. Yes, it helps a little, but not enough.
She will tell my dad, "I love you with all my heart, if you go to heaven Dick, then I will go." Then, my dad will reply, "If you go to heaven Pat, then I will go too." It is so difficult to watch. I kind of envy them though, that kind of love is rare and hard to find. They still hold hands and look deeply into each others eyes.
They said to me recently, "We raised 4 great kids, we traveled, and we did everything that we wanted to do." So, I am thinking to myself, "Are they ready to die?" It makes me so sad, especially to watch your mother become silent and basically just a shell. She doesn't look like my mother and she doesn't act like my mother. I think I get depressed because I am already mourning her passing; the slow passing of her mind, her body, her essence.
When she has a good day, she will kiss my hand a million times, and go all the way up my arm to my face and say "I love you! I love you! You are my life!" I then kiss her back, I start with her hand, move up her arm, and say, “I love you! I love you! You are my life!” On other good days, I sit in her lap, put my head on her shoulder and tell her to sing to me, or tell her to tell me a story. She laughs, and obliges.
I am a pre-school teacher and obviously have a great deal of patience with children, and dealing with someone with Alzheimer’s is basically the same as dealing with a pre-school child. There aren't any filters going on. So, I am very good with her.
My parents have watched many of their dear friends die, and I think that that is hard for them. Their lives are like a lottery, "Is today my day to die?" That must be difficult. How must that feel? Maybe we should all live our lives to the fullest while we can. Take that trip to Paris, go rock climbing, learn Yoga, take a cooking class. Enjoy it while you can. You never know how your life will be later during the golden years.
My only advice is enjoy each and every moment with your parents. Love them, hug them, kiss them. Tell them how you feel about them. Spend time with them, as much as you can. Don't have regrets after their passing. Life is precious, remember that. I try to remember how my mother use to be, I try to find patience, and when she gets angry, I just kiss her a million times, and repeat, "I love you mom! I love you! You’re my life!" I hope she remembers how we use to do that to each other, I hope she remembers me! I only wish good days for her. I hope for the best, but don't expect a lot. I love my mom and I will remain by her side all the days of her life.
