Sorry for the long post. I just can't shorten it up any. October 13th I am running the Chicago Marathon as part of Team ALZ. So far the team has donations of over $400,000 dollars. That just isn't enough. I've written my Connection to Alzheimer's below. I hope you at least read it. Donate or don't. That's your choice, but maybe you'll be enlightened if nothing else.
If you'd like to donate, I would be very gracious.
Hopefully this link will take you to my facebook page
https://www.facebook.com/dave.filip.14 or you can contact me directly if you wish. Keep one thing in mind please? To this date, you will NEVER meet an Alzheimer survivor. Thanks for reading.
I wish you could have known my Mom. Maybe you did. If you did, I imagine you already know some or most of what follows. I’ve known some very strong women during my life. I’d have to put Mom at the top of the list. She raised three boys by herself. She and my dad divorced before I was born. She took on the burden of raising a family of three boys by herself. She got a degree in education, and even more than that she got her Master’s Degree. As long as I could remember, she was always a teacher. She focused on reading, helping kids learn how to read, and comprehend what they read. Later in her career, due to program cuts, she was resigned to regular classroom teaching, but had the same passion for educating kids. She taught from early elementary to middle school. She worked her ass off. She made sure the three of us always had what we needed, and more. Teachers, then like now, didn’t make a lot of money. I remember her tutoring during the summers to make extra money (At least now that’s what I assume). It may have just been for her passion of teaching. I guess I’ll say it was for both.
For many years she couldn’t afford a car, so she would take a bus to work. As the three of us boys got older she did find a way to get a car. She had two and soon three sons “needing” to drive. It wasn’t fancy, but she made sure we had one. She was fine taking the bus. I think the car was for us.
Mom read. She loved reading. Doing it and teaching it. She was always reading. Or teaching. Mom fought a hearing problem for many years. The day finally came when she realized that it had become bad enough that she wasn’t able to give her students everything they deserved from her. As much as she wanted to keep teaching, she felt, in fairness to her students, it was time to retire. That didn’t mean she would stop helping kids learn to love to read. She volunteered for years at an elementary school she had worked at earlier in her career. She read. She read to kids. Kids read to her. The students loved her, maybe as much as the teachers did. She could have sat at home and read her books or worked on her crossword puzzles (another passion), but she chose to continue helping build young minds.
I don’t remember what year it was. A local news station awards members of the community for outstanding efforts in doing work to help others. It was called Nine Who Care. Mom won this award for all of the volunteer work she did at the school. Along with a token trophy, she was given a cash prize. Two hundred buck maybe? She could have bought herself something nice. Or bought something she needed. She gave the money to the school library to buy books. To say she was humbled by the award is an understatement. Being rewarded for doing what she was passionate about didn’t really make sense to her.
Do you remember when you were young, and you got a book for your birthday or Christmas? A book?! That was almost as bad as socks or underwear. Until you realize the real gift you were getting. It’s more than a story. It’s the gift from someone who wants you to be able to experience all they did through reading. I know there are generations of friends and family that still have books that Mom gave them as a gift. Some even autographed by the author. A gift of learning and love.
Until near the end, she still lived in the same house she bought some thirty years before. (I know she bought that house so I could finish my junior and senior high school with my friends). She took care of the house, the yard, her beloved cat. She did everything. She baked her melt in your mouth chocolate chip cookies and her amazing potato salad (“I can’t give you the recipe, there isn’t one”) There was always a birthday cake for the grandkids. She mowed the lawn and shoveled the drive. She hosted holiday meals. She rarely asked for help and seemed embarrassed when she got it. She was a strong woman.
I can’t remember exactly when, but Mom started acting “old”. At least that’s the way I saw it. She wasn’t getting around as well. We’d help with shopping and small chores. She’d forget things. She might ask me to grab her some groceries, and of course it was my pleasure. I’d notice some of the same things she was asking for were already in the cupboards. OK, she just forget she had some.
At first it was kind of funny. We’d joke about it. SHE would joke about it (A defense mechanism I believe) Things were getting worse though. We started worrying that she may need some help. We put a small washer/dryer combo in an upstairs room. We didn’t want her walking up and down the basement stairs. She never used it. “There’s nothing wrong with the washer downstairs”. No there wasn’t, and she was too proud to admit she should use the one upstairs. An admission of defeat maybe? She was fine where she was, and things were fine the way they were. She would not consider moving to an assisted living center. Not that we ever really talked about it. We just knew. There were some falls. Nothing serious usually. There were a few scary ones. I started asking myself how to get her somewhere safer. When it came up in discussion, she’d have nothing to do with it.
By now it was clear that she was starting to show signs of dementia. (Alzheimer’s if you prefer) She wasn’t eating well. She still drove until I had to take her car from her. She stopped to visit me at work one day but wasn’t really sure how she got there. That was probably the time I knew things were getting worse. Very soon after that I told her that her car was in the shop, and that was that. It may have been a blessing in disguise. She couldn’t drive, and I had a reason to visit more often. There were plenty of doctor visits and visits to the ER. Those weren’t fun, but I am glad I was able to be there to hold her hand when she didn’t know what they were doing. I had to laugh the first time Mom swore at a nurse. Mom NEVER swore. The nurse was simply taking Mom’s blood pressure. As the cuff was tightening she yelled out, “God Damn it that hurts!” That was the last time I laughed about that. After that I fought tears, knowing she was scared, unsure, or really hurting. All I could do was hold her hand.
I got a call from her one evening. She had fallen off the sofa. She was standing on it trying to hang a picture on the wall. (The picture still hangs in my house) She hurt her shoulder and couldn’t get up. She had crawled to the phone. I rushed over and found her in pain on the floor. She ended up being admitted to the hospital. She had surgery on her shoulder. The doctors told me she needed to be in a rehab facility. I believe it was the trauma of the injury, but her slip into dementia was noticeably worse almost immediately. The doctors would not let her go home to live by herself. I made the necessary calls to a few facilities and was fortunate enough to find one very close to me. That would be her new home.
I remember the day she was admitted. I cried like a baby. I thought I was a horrible son. How could I put my mom in an institution? I saw the other residents. They needed to be there. Why the hell was I making my mom live like this? Locked in the basement of a nursing home. It turned out I made the right decision.
Mom always knew who I was when I visited. It was daily for months, and then regretfully every other day, or less. Early on she thought she was in a hotel, and asked me to pay the bill so we could leave. There were bouts of anger towards me and the staff. It hurt. I’d hold her hand, or stroke her head. She didn’t want me to leave. I had to pull my hand from hers. I’d walk out crying. How could I be so cruel to walk out on the woman who raised me?
Some days we’d just sit and “talk”. She might read me a book. Or I’d read her one. Or we would just look at each other and smile. She had other visitors besides me. Her family and friends would stop and keep her company. Often times it was just sitting and smiling at each other. Other times it was reading. It was always special.
Mom got worse over a few short years. This woman that lived to help kids learn to read, now could not even read a first grade level book. She’d struggle with the words. With me underlining the words with my finger as she tried to say them. We always managed to finish every book. A year earlier, she struggled to get all of the words out to make a sentence. Now it was a battle to say the simplest words. Her smile said it all. I’m sure in her mind she was carrying on the most wonderful conversations. Her brain wouldn’t let her share it.
As the months went by, I knew Mom wasn’t sure who these people were that I was bringing in. They were her family, and some friends, but I know she wasn’t sure. Deep in my heart I know she knew, she just couldn’t put it all together and express it in any way.
I still run into staff members that were there with Mom. They remember her. Some say they loved her, and helping her. They all remember her. She was a memorable woman.
I had to move Mom to a different facility. Her life savings were gone, and I couldn’t find a way to keep her where she was. We had to put her in a place that accepted government funding. She was fine. She didn’t really know we moved her. It was a nice place with another great staff. She was in her new home. For about a week.
I like to run. It’s my escape. It’s my time to be alone. I listen to music on my iPod. I never even take my phone. For some reason I did this day. I was coming towards the end of my run and my phone rang. I was nauseous when I answered. I got the news. “Dave, your mother passed”. I knew it before I answered. My run was over. I walked home with tears in my eyes. I called mom’s brother, and then my own brothers. I went home, cleaned up, and went to see her for one of the last times.
Mom was generous beyond belief. She would do anything for almost anyone. Maybe a fault? I know she was letting me get this run in before she passed. She was saying, go do what you love. I’m going to be OK now.
There are a number of ironies in this story. The one that smacks me in the face every day is that this woman, who had a passion (I wish I knew a stronger word) for reading was stricken with a disease that wouldn’t allow her to read “A Cat in The Hat” in the last months of her life.
This disease sucks. If you have never known anyone with Alzheimer’s, consider yourself lucky. The pain and grief it inflicts on loved ones of the victims is gut wrenching. They can’t say your name, but you know in in their heart they are screaming it, and saying I love you. The physical and mental capabilities may go, but the love never will. Don’t EVER think they don’t know who you are. And don’t EVER forget to tell them you love them. They love you more.
Dave Filip
Son of Lynda Filip
