This is my story about coping with the loss of my mom to Early On Set Alzheimer (EOA). She struggled with for 18 years. My life became about making sure that my mom was okay. Unfortunately, my family adapted to taking a back seat to her illness. With my mom’s passing, I’m trying to figure out who I am. Another struggle for me is re-connecting with my family. Losing a loved one is never easy. I hope my journey will help others.
My West Side Connection
Hi, my name is Meghan Milia. However, I go by Maggi. I was raised in North Olmsted. Actually, it was the same house that my mom lived in as a teenager. My Dad is a retired Cleveland Fireman and my mom was a nurse. I’m a North Olmsted High School graduate.
I Love Northeast Ohio
I have lived in Northeast Ohio my whole life. I love this area. I truly enjoy the seasons. Fall is my favorite! I can’t forget to mention the amazing Metro Parks and the numerous great local restaurants in the area. The people of Northeast Ohio are just the best as well.
After high school, I decided to take a great big leap and follow what I loved… Hair! I went to the Brown Aveda School in Mentor and became a stylist. I work at Details salon at both locations – Rocky River and Avon. I currently reside in Strongsville to be close to family. This house has been our home for 7 years. I live here with Carl (my husband) and Dominic (our son). Dominic is our one and only at 11 years old. Oh don’t forget my fur baby Izzy!
My Mom’s Diagnoses of Early On Set Alzheimer
18 years ago, my mom received the news. She was diagnosed with Early On Set Alzheimer. This means she was diagnosed before the age of 65. However, she kept her diagnosis secret from everyone. This even included her family for as long as she could. We very rarely even discussed her Early On Set Alzheimer amongst each other till we had no choice.
Some may wonder why we were so tight lipped about Early On Set Alzheimer. But, it was out of respect to my mom. She never wanted to be treated different. She wanted the limelight on her children. I now realize she planned a wedding for me all the while trying to be as normal as possible.
Reality of Early On Set Alzheimer
I remember I had just finished reading “Still Alice” by Lisa Genova. “Still Alice” is about Alice Howland, who is a 50-year-old cognitive professor at Harvard and a world-renowned linguistics expert. The book leads with Alice out jogging one day. She finds herself lost in Harvard Square, and unable to find her way home. Alice doesn’t realize she is just a mile from home on a route she has traveled every day.
I still remember the first time I could no longer ignore the occasional forgetfulness. My son was 18 months old. I had come home from work to my mom uncontrollably crying. After many minutes of trying to console her, she admitted that our son had fallen down a few stairs. She had accidently left the baby gate open.
It hit me. It hit hard. My mom was just like Alice Howland…
Development of Early On Set Alzheimer
Over the next couple of years, I was digesting everything that comes with this realization. My mom has Early On Set Alzheimer. Anyone who has spent time with me knows my parents, especially my mom, are very special to me.
I was 31. I just got married. We had just started our family. I mourned for her almost immediately. I struggled with the concept of “what was I going to do now?” Now, that I knew. I researched everything. I looked at vitamin supplements, doctors, and available programs. You name it. I did it. Bottom line was this. I was going to stand by my mom and enjoy her for as long as I could!
Progression of Early On Set Alzheimer
As she progressed we did our best to adjust with her. I called every morning and evening. Originally, the calls were just to discuss our days. Over time the calls became a distraction device for my dad. My dad used this time to tend to chores. It was during our phone calls, that he didn’t need to watch my mom’s every move.
With Early On Set Alzheimer people assume they understand the forgetfulness. That is easy part. Sometimes even the comic relief caregivers need. We did become experts at responding to the same statement. We also became experts at covering up the repeating in public situations.
As she progressed my mom would have emotional outburst that didn’t always match the situation. My mom would cry in the grocery store in the refrigerated aisles because she was cold. The looks we would receive were heart-wrenching. People would gaze in disgust. I learned to go to the same store at the same time and cash out with the same cashier. Even our son treated her with compassion at the young age of 3. If he asked for something he would explain every step for my mom. The love and bond was amazing to watch.
Adapting to Early On Set Alzheimer
At first most symptoms were dealt with by creating a new routine. Same food, same restaurants, same days, same times. Also, one day she lost her way while driving. Thankfully, she still could call my dad. He found her in an area in the Metroparks. An area she spent time with my son weekly. She did seem to give up driving willingly. It was never discussed.
We did our best to make memories and travel. Unfortunately, that would have to end too. I look back and I feel we waged a war. We fought the progression. We fought to have some normalcy. Sometimes due to the extreme stress…we fought each other.
My dad did more and more. Picking out her clothes. Putting on lipstick for her. He even had to shower her. I will never forget the day this one day. I received an emergency call at work from my dad. He was calling from a woman’s dressing room trying to buy her a bra.
Placing My Mom in a Nursing Home Facilities
My dad kept her in her own home much longer then was advised. With this illness, a person is stripped of themselves. That includes their personalities and thoughts. This kind hearted fun loving woman did become combative. She forgot she hated the Beatles. She showed signs of sundowners. This is when as the day progresses the person becomes more confused. This confusion brings on obsessions and anger. The condition would be agitated by time changes as well.
We tried different doctors subconsciously hoping for a miracle. Doctors always assured us what she had was rare. Of the 5 million Americans dealing with dementia only 5% are diagnosed with early onset.
The anger progressed and we sought medical help. We were advised to admit my mom to a geriatric psych unit. We agonized over this suggestion. At wits end we finally gave in. We admitted my mom. For the first time we had to leave her in someone else care. We left her with people we didn’t even know. They definitely did not know my mom. This month was hellaciousus.
She spent the next two years in a facility. This became our second home. I naively thought that once she was with trained professionals it would be easier on us as a family. Subsequently, it wasn’t. It may have been less physically demanding. However, emotionally it was exhausting.
Striving for Balance with Early On Set Alzheimer
The belief that there is balance available to us at all times stuns me. We can desire balance. We can strive for it. However, how do we as people measure it?
I would get a call. Then fifteen minutes later be half way to where ever the current emergency was happening. I often left my husband holding up the household. Carl would console our son. Our son always innately knew. No matter where I was, with my husband, our son, my parents, I never felt settled. I constantly worried about whoever I wasn’t with. Add a career into the mix. Now, you have one spread thin mom!
Looking back this is one of my biggest regrets. I regret not living in the moment. I realize I rarely enjoyed what was right in front of me. What I have come to learn is balance is a tight rope act. A little this way, a little that way and jump to the finish. If something fell through the cracks or did not work, we as a family would try again.
Losing My Mom to Early On Set Alzheimer
My mom passed this New Year’s Eve. This is still very fresh. Right now each day gets a little harder. I am promised by those who have had similar experiences that it never goes away. But, it does become better. However, I wholeheartedly believe this was my mom’s only way. She wants us to celebrate her life and not mourn her.
My New Reality
Now, I am a completely different woman. I am a tad bit scarred. But, I am definitely stronger. Plus, I am trying to discover myself again. In addition, I am focusing on healthy eating and establishing an exercise routine. I am revisiting friendships that had to take a back seat.
Recently, I have become obsessed with house plants! This is due to the beautiful plantars people sent during the funeral. I have about 15 varieties of plants all over our house. Also, I am simply trying new activities with my family such as a glass blowing class.
I currently am most proud of my willingness to continue living each day. I know my mom would want me to enjoy life. For that reason I will. I strive to live in my mom’s likeness. Family time has increased. Plus, I give 110% every day at work. I am always here to lend an ear or a helping hand. Most importantly, I always enjoy the sunset!