I started writing my mom’s eulogy the other day. Not on paper, but in my head. Nothing has happened. Nothing has changed. In fact, things are pretty much the same as they have been for some time now. But we are coming up on the nine-year anniversary of her Alzheimer’s diagnosis. July 2010. And I’ve read numerous times that on average, a person lives 8-10 years after being diagnosed with Alzheimer’s. We’re about to enter that tenth year.

There have been days when I wish for my mom’s death. I know she is suffering and the quality of life is just not there anymore. I want her to be at peace. I yearn for it. And selfishly, I want this journey to be over for all of us. I want for us to be able to move on with our lives, as if that’s even possible.

But mostly, I don’t want to watch my mom continue to decline and suffer and eventually vanish into nothingness. The longer this goes on, the harder it is to remember what she was like before Alzheimer’s.

I have wished for the end to come, but now that I feel it is likely approaching soon, I want to press pause. Wait! I’m not ready for this to be over. I’m not ready to say goodbye. I am starting to realize that the end will be so . . . final. It’s not simply a quick fix to stop the pain. My mom will be gone for good. She will never come back. I will never get to see her face or hear her voice or hold her hand ever again. I’m not ready for that. I curse myself for ever having the thought that I wish she would just die and get this over with. That’s not what I want. I want my mom. But at the same time, I want her to be at peace. I want her to be released from the grip of this God-awful disease. I feel so torn and so confused, but mostly I think I am scared.

I am scared about all of the unknown. How will she die? When will it happen? Will I be home when it happens? Will I have enough time to get there before? Will I be in the room, holding her hand, when she takes her last breath? Or will I be woken in the middle of the night by a phone call? Maybe I’ll miss the phone call because I was out for a run or in the shower.

When my grandmother died, I was living in Alabama. My dad sent me a text message to let me know. She had been sick and we all knew it was coming, but still, I found out from a text message. My dad was so worried about how he was going to tell my mom and my sister, who were both back in Delaware with him, that he forgot to worry about how he would tell me. I don’t want to find out my mom died from a text message. I just can’t. I worry about that all the time.

The other day, my sister was telling me they booked their trip to Disney World for next May. It will be my nieces’ first time going and I’m so excited for them, but then I had another thought: isn’t she scared? What if something happens to our mom right before the trip or worse, during the trip? How can she so confidently plan a trip that far in advance? The anxiety would be enough to kill me. I’m terrified to plan anything too far in advance.

Last September, I was invited to speak on a dementia-friendly cruise to the Caribbean in April. It was an amazing opportunity and I gratefully accepted. But as the trip got closer, my anxiety grew out of control. What if something happened to my mom right before the trip? What if something happened to her while I was on the trip, out of the country, on a cruise ship, and unable to even try to get home in time? I would never forgive myself. What if she died a month or two before the cruise and I just wasn’t feeling up to it? What if, what if, what if? I ended up backing out of the cruise. I was disappointed and I don’t know if I’ll ever get the opportunity again in the future, but I just couldn’t do it. The anxiety won. Even if I had stayed committed to the cruise, I couldn’t picture myself actually stepping foot on that ship. I just couldn’t do it.

I also worry about what will happen after my mom dies. What will my dad do? How will he handle it? How will I look after him from 1000 miles away?

Moving home is not an option and he would never move to Florida because of my sister and her two girls. Will I have to call him several times a day to check on him? Will he be depressed and drink too much? Will he be too sad to leave the house? How will he spend his time? Who will he spend it with? Who will take care of him? I worry about it all.

I try to tell myself I shouldn’t worry about things I can’t control. I know I have no control over any of it, but I still worry. Some days more than others. Some days it’s all I think about. And some days I start writing my mom’s eulogy in my head because I fully intend on writing and delivering it and I’m afraid I will be too sad or too stressed to write it in the days following her death. Does that make me crazy? Maybe it does, but I don’t care. If it helps me cope and makes me feel prepared in some way, then that’s what I’ll do.

In the end, whether I’m there or not, I just hope my mom knows how much I love her.

I hope she knows what a profound impact she has had on my life. I hope I don’t have any regrets, at least not too many. But I also hope I don’t become so concerned with my mom’s death that I forget to appreciate the rest of her life. As we approach the nine-year anniversary, that’s what I’ll try to focus on.

This post originally appeared on the author’s blog

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Lauren Dykovitz

Lauren Dykovitz is a writer and author. She lives in New Jersey with her husband and two black labs. Her mom, Jerie, was diagnosed with Alzheimer’s disease in 2010 at age 62. Lauren was only 25 years old at the time. Jerie passed away in April 2020 after a ten-year battle with Alzheimer's. Lauren writes about her experience on her blog, Life, Love, and Alzheimer’s. She has also been a contributing writer for several other Alzheimer’s blogs and websites. Lauren self-published her first book, Learning to Weather the Storm: A Story of Life, Love, and Alzheimer's. She is also a member of AlzAuthors, a group of authors who have written books about Alzheimer’s and dementia. Please visit lifeloveandalzheimers.com to read more about Lauren’s journey.

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