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 that 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.
14 thoughts on “I Worry About My Mom’s Death Every Day”
I completely understand what your going through ! My mom is declining more and more every day and I don’t know how much more we can keep her at home! I feel so bad that we might have to place her in a nursing home. It’s heart breaking and I don’t know what my dad would’ve without her! They’ve been married almost 60 years next month! This is the worst I wouldn’t wish it on anyone! I hope things get better for you! ☺
I’m so sorry you are going through this. Placing your mom would be difficult, but you have to do what’s best for everyone. I don’t think my dad will ever place my mom, unless it gets to a point where he doesn’t really have a choice. 60 years is a long time! My parents will be 51 in August. Love to you and your parents.
Godbless, You know I feel the same as you.We went to Disneyworld and I kept my phone by me I actually stayed at the home we rented 2 days laying on couch didnt even get in the pool because I worry. My mom is in the blank stare there’s no more I wanna go home she doesn’t speak.unless you ask her something. There’s a song by Jay Allen on YouTube where he got his mom on stage it will break your heart it’s called blank Stares, she past away not long afterwards. But your not alone . God bless
I know that Jay Allen song. It’s heartbreaking and beautiful at the same time. I’m sorry you couldn’t enjoy your vacation. I understand how that feels. Waiting for a call that might never come. Love to you and your mom.
Your story hits me to the core.
I lost my Mom on January 11, 2018 about 8-10 years after she was diagnosed with Early Onset Alzheimer’s. She was just 63. My parents had been together since they were teenagers.
I have had all of those thoughts and fears. You are not alone. My fear now is what happens after death….will we be together then? I hope so, with every fiber of my being. I truly hope there is a heaven and we will be reunited.
My Mom was my world.
I was there around the clock during her final nine days. I was in bed with her, stroking her hair, holding her hand, when she took her last breath.
My only regret is that I couldn’t save her.
I’m so sorry that you and your family are going through this.
Sending love, strength, peace and prayer.
I’m so sorry for your loss! I’m glad you were able to be there in her final days and she is at peace now. I wish you well in healing and facing this next stage of grief. Thank you for your words.
I’ve just found your blog… quite by accident from someone who shared one of your posts. I am the founder of Alice’s Embrace. Mom was Alice. She was my best friend all of my life and she passed away from Alzheimer’s on May 29th, 2011. All that you write here, I could have written, too. I know your heart is heavy. I remember that feeling like it was yesterday. I would love for you to look at our website to see what we do, and I would love to get a gift (prayer shawl or lap blanket) to your mom. I feel I found you for a reason and I would love to get a shawl or blanket on its way for you to give to your dear mom. Take a look here to read about Alice’s Embrace. http://alicesembrace.org/
To give you a very short description… We’re a nonprofit organization that provides lap blankets and prayer shawls to people living with the daily challenges of Alzheimer’s disease. We have knitters and crocheters from all over the country (have received items from 47 of the 50 states). We have given away nearly 4,500 gift in just under five years.
I hope I hear from you and you give me your mom’s favorite color and I get something in the mail very soon just for her.
Sending you a warm hug and hoping you give your mom a gentle hug from me.
I’m so sorry to hear about your mom. Thank you for all the good work you do. You’re bringing so much joy to so many people and families. Do you have an email address I can send the information to? Thank you so much for thinking of my mom and for reaching out.
I’m so sorry that I didn’t see your note before just now. I feel badly because it has been so long. My email address is firstname.lastname@example.org Please feel free to email me and together we can find the perfect gift for your mom. I hope to hear from you soon so I can get the special gift in the mail.
I don’t know how I stumbled upon this article but it made me feel a little better knowing that I’m not alone. I started noticing my mother failing 19 years ago. My niece, a nurse, gave her samples of Namenda to slow down the progression of the Alzheimer’s, never again would I ever go along with that. Yes I hated the disease even though I had no idea what I was getting in to. I was the only girl in my family, my brothers have addictions so they have their crutches, I had Mom. I read every article I could get my hands on so I could help her the best I could. My Dad was mad at first, angry that mom was doing weird stuff and he was embarrassed, and she slowly progressed. Repeating herself, packing her bags to go “home” to my grandma’s house. Then come a day I was taking her home from my uncle’s funeral. She said to me, “how long are you home for?” my heart sank clear down to my feet. I tried to laugh it off but my throat shut. She thought I was my aunt from South Dakota. I got her home and took her in to my dad and told him what happened and I left bawling. This was the nightmare beginning that I had been reading about.
My Dad, bless his heart, tried to keep it a secret and handle everything at home, I didn’t realize she had forgotten how to cook and that my dad didn’t know how. Mom had waited on him hand and foot, doing everything for him so he was lost in so many ways. He wasn’t able to leave her alone, he said she was like adopting a 3 yr old child, you had to watch her every second.
Jump ahead a few years, I had been preparing meals ahead and taking them out there and taking them crock pot meals so they had cereal for breakfast and what ever I had made for the rest of their ugly day “sundowners”. Then Dad called me and said he couldn’t lift her any longer when she’d slide out of the bed on the floor, he couldn’t get her in the shower, she was incontinent, the time had come. I called her Alzheimer’s doctor and he said to take her to the ER and they would handle it all. They were so great and put her in the best home I could find and close to my dad so he could visit her every day for 3 years. She went through every stage of Alzheimer’s just like clockwork, I was keeping track. I talked to my dad and the nursing home every day and visiting her every week because I was now living 3 hours away. I had problems with the nursing home, uneducated people not understanding the disease. I taught them a lot about it.
2 weeks ago, I went down to see her and spent quite some time with her , looking in to those big blue eyes and seeing no spark at all, she was but a shell of a woman that was my hero. She wasn’t in pain but she had no signs of recognition of anything. I got ready to leave and I leaned over to give her a kiss on her head, with her looking at me like a total stranger but she squeezed my hand real tight and I said Mom, I love you and always will, it’s time you seem ready to go see Grandma, Aunt Betty and all the other relatives, I’m ready for you. She gave my hand another squeeze. I bawled all the way home. As of the next meal time, my mom had forgotten how to swallow no matter what they did to try to help her eat or drink she couldn’t. “The Last Stage” was here. A few days later while I knew it was time, Dad called to say that they were putting Mom in hospice. It was 3 years to the day (the 4th of July) the nurse called me at 4:30 in the morning to tell me she had passed. She wasn’t in pain, she w. as asleep and she was going to see God.She had not recognized anyone for 2 years but we still were there for her hoping for a miracle! I don’t regret or feel guilty for anything. We did everything possible for her but this dreadful disease took her. Her service was this past Monday and feelings are still raw but she is no longer at that nursing home, she’s with God.
I understand completely. I do the same every night. xxx
I, unfortunately, understand your situation. I lost my mom just two days ago from early onset Alzheimer’s. She was just 58. She was put in a nursing home just a few weeks ago after 6+ years of this terrible disease. The only thing I kept thinking is that I don’t want her to pass alone, and luckily I was able to be by her side when it finally happened. Like you, I did not want her to die, but I wanted her to finally be released from all this suffering. It’s a truly heartbreaking situation that I wouldn’t wish upon anyone. No one deserves to go through any of this. I truly wish the best for you, your family and your mom. I hope it gives you some sort of peace knowing you are not alone in feeling this way <3
I’m so very sorry for your loss. Your mom is at peace now, but I know that doesn’t make this loss any easier. Thank you for your words. It helps to know I’m not alone.