We celebrated Mom’s 69th birthday yesterday. She had pizza and cannolis and laughed. We have been working with a hospice company since September and the social worker was able to come and celebrate with us. They have been very helpful to us and we are grateful they are on our team.
I found this note in Dad’s office a few weeks ago. I wondered when Mom had written it. Was it a long time ago when she was perhaps leaving for the weekend? Was it after her diagnosis when she knew she would lose her ability to remember Dad and to communicate with him? I hope that one day soon there will be a cure for this disease.
The real hero of this story is our dad. I have been hesitant to write about him for many reasons. One of the reasons is that he is very private and I don’t want to share anything he isn’t comfortable with. But mostly, its because I know that all of my words about him will be insufficient. There is no real way to detail what he has done for my mom and his part of this journey over the past ten years. There is no word to detail the level of selflessness and love he has demonstrated.
My dad has been the sole caregiver for my mom for 10 years. He has fought every suggestion to put her in a nursing him or give up the fight in any way. My mom since her diagnosis, through the rough and the rougher, has lived at home. My dad hand feeds my mom. He bathes her. He dresses her. He cares for her day in and day out. He holds her hand in the middle of the nightwhen she is scared. He sacrifices everything for her.
My dad was an athlete and shy and he fell for my mom in that garage dancing to Misty by Johnny Mathis. He was so young when he got married, just 20 years old, but I have never met someone who lives their vows day in and day out like him.
My dad spoiled us girls. On a rare occasion if one of us was grounded, he would sneak peanut butter sandwiches in and sit with us. He was a dreamer and encouraged us to do and be whatever we wanted. If my mom was the captain of our ship, my dad was the cruise director. While my mom baked the birthday cake, my dad was the one smearing it all over his face to make everyone laugh.
No matter what, Dad took our side in any debate and believed us, always. He is very faith filled and treats everyone with kindness. He is the most honest person I have ever met and he never passes by someone in need.
My dad was always the sole provider for the family. He worked hard as a salesman and worked for the same company for over thirty years. He was still working and in the prime of his career when my mom was diagnosed. He retired about two years after her diagnosis to care for her full time. He also made many other sacrifices over the past ten years, and has basically put his own life on hold. His retirement has consisted of around the clock caregiving. There was a period of time during this illness when my mom was very angry and sometimes violent towards him. He never gave up on her and if you were to ask him, he would tell you all of the good things about the past ten years.
My parents had a very traditional marriage. My mom took care the household chores and my dad did the yard work and tinkered in his workshop. Growing up, my dad never cooked or cleaned and probably did not know how to run the washer and dryer. However, when mom stopped being able to perform her usual household routines, my dad took on his new roles with gusto. It is funny to talk to him now about laundry detergent and what he is cooking for dinner. He became quite the clothing stylist and impresses us with his outfit choices for Mom. He always makes sure she looks nice and that her hair is trimmed and analyzes how she may want to wear it. He plays her favorite music and movies for her and loves her devotedly.
Their relationship has evolved in so many ways through this disease. They are such a pair and the love that they share isn’t just obvious from my dad. For the first time in my dad’s life, and much to his delight, my mom started laughing at my dad’s jokes over the past years. She looks at him so adoringly, it is amazing to watch. For the past year, his name has been the only name she says.
Some statistics say that those with early on-set Alzheimer’slive approximately 3 to 5 years. My mom has been going strong for 10 years. I truly believe this is 100% due to her bravery and his undevoted care of her.
My dad has always been our personal weatherman. He is always keeping us posted on the forecast for the area and to this day will call me if a storm is headed my direction. He will call back with frequent updates and to let me know and when it is all clear. Sometimes I even hear my husband on the phone with him talking about river levels.
I remember on several occasions growing up going for a walk around our neighborhood and it would unexpectantly start to rain. My dad would always come find me in his big white car to bring me home. Even though I obviously would have been fine to make it the short distance in the rain, I never had to question that he would come get me. That has always been my dad. It was a pretty amazing way to grow up, knowing that someone would always come for you in the storm.
It is fair to say we are in the worst part of the storm now. Sometimes when I want to give up and I don’t think I can handle this disease any more I see my dad, waking up each day to make sure our mom is safe and protected. The thing is, he doesn’t even realize he isgetting wet. The toll this disease has taken on him is difficult to describe. Watching his care for her at the sacrifice of himself is both beautiful and devastating. Alzheimer’s disease is cruel is so many ways, however, we were unprepared for the level of impact this disease has on the caregiver.
When this storm is over, I have no doubt that my mom will find the comfort she deserves in heaven. For my dad, he will have no regrets for the way he has devoted his life to her these past ten years and their whole marriage. For us girls, I pray that one day my dad will pretend to walk in to walls again and work in his workshop and windex our windshields as we pull out of his driveway. For the time being, we will have to be the ones to hold the umbrella over him and pray that when this journey is over peace will find us all.
