I waited and waited. It was 11 p.m. and my mom still hadn’t returned from picking up my three-year-old daughter from pre-school. It was close to midnight when they finally arrived at my mother’s apartment. My daughter walked in, McDonalds happy meal in hand, and said, “Granny got a ticket.” I asked my mother where she had been, but she never gave me a straight answer. She had been doing that a lot lately, but I blew it off. My mom is notoriously private. She’s always had her little secrets, so I didn’t pry. I was just happy they were home safe.
In retrospect, that was one of the first times my mother seemed lost.
My mothers Dementia crept up on us. I didn’t recognize the signs at the time, and by the time I realized what was happening, it was too late. When my father died in 1988 I was devastated, but I had my mother to help me through it. She has always been the one person I could count on. Watching her slip away is the absolute worst feeling.
Her decline has been rapid, as is often the case with women. There is no known cure or prevention for Alzheimer’s. As her daughter and primary caregiver, this disease, which has never been officially diagnosed in my mother, has been completely devastating. Looking back, I realize all the were signs that I missed. If I knew then what I know now, there are so many things I would have done differently. In case anyone out there can benefit from my experience,
Here are 5 things I wish I had known before my mother got dementia:
I wish I had paid more attention. Once your parent is over the age of 65, a twenty-minute phone conversation once a month is not sufficient. You need to call and visit more frequently. Ask them questions so you can test their cognitive skills. Listen to them. If they keep repeating themselves excessively and cannot handle simple tasks, that is a huge red flag.
Your parent will attempt to hide their symptoms from you. Unless you are vigilant, they will succeed. I went to my mother’s house daily and
whenever she did really weird stuff, I would think to myself, “that’s just Mom being Mom.” Boy was I wrong!
Sometimes she would put the keys in the refrigerator, or she would cook odd things that didn’t go together. She would show up two hours late for hair appointments because she had been lost. These were all signals that I missed.
2. No One Is Immune
My mother is 82-years-old now, but ten years ago when this journey began she was always the hip, young mom. She had never been ill. I never considered that she would develop dementia. It was unthinkable. I wouldn’t wish this experience on anyone, but unfortunately my story isn’t unique.
Statistically, the situation that my mother and I find ourselves in, is fairly common. At the age of 65 women have a 1 in 6 chance of developing Alzheimer’s and an estimated 66 percent of informal caregivers are women. The average caregiver is a 49 year old woman caring for her 60 year old mother who does not live with her. No one is immune from this tragic disease.
3. The Toll On Relationships
The ripple effect from this diagnosis has touched everyone in my family. As if losing the help and guidance of my mother isn’t traumatic enough, the close connection I once had with my siblings and other family members has also suffered. I have lost relationships with people I have known my entire life. My mother was the keeper of everyone, still somehow I have become her sole keeper. When something like this happens, you find out who really cares about you.
4. The Emotional Cost
My mom’s disease has progressed with each passing year. She no longer speaks or walks. Mostly, she just sleeps. I’m not sure if she even recognizes me. I no longer have that voice of reason, the information I need to make better decisions, the love and support I need for my daughter.
My mom has been my best friend. She means everything to me.
The worst part of all of this is watching her wither away. I am grateful that she is still physically here, but I lost her many years ago. My heart is broken into a million pieces and now, every time I forget something, I fear that I may be next.
5. Take Nothing For Granted
If you can take only one thing away from this story, I would just say to love your parents. Pay attention to them. Don’t take them for granted. You have no idea what may be coming around the next corner. If anyone had told me eleven years ago that this would be my reality, I would never have believed them. I was planning on moving to a new city and starting a new chapter in my life but instead,
for the last ten years, I have been standing still, grieving the loss of my mother, one Sunday morning visit at a time.
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