It’s so hard having my mom, especially so young, slowly dying of Early Onset Alzheimer’s Disease. She was diagnosed 6 years ago when she was 59 and since then so much has changed. I’m lucky that my mom is still alive but she’s no longer my mom and she doesn’t know who I am.
Table of Contents
What Alzheimer’s has Taken
She’s still alive but I miss her so much. The her that she used to be. The mom that used to know who I was. The mom who knew she was married to my dad.
The mom who would pick me up from daycare at 4:40pm every afternoon and 20 years later, 4:40pm was still an inside joke of ours.
The mom who helped me with homework at the kitchen table. Who encouraged me to read even though I didn’t like it. I think because of her I actually love reading now and am constantly reading everything I can to gain knowledge, and in hopes of keeping my brain active so hopefully I won’t fall to the same demise.
The mom who taught me everything grammar and corrected me on my grammar for years and years. I have to say, she did a good job of teaching me.
The mom who though she went to college to become a special education teacher, she knew after a few years of working in the schools that it wasn’t for her. She got burnt out and left the profession. This is a decision I gave her a hard time about when I was a teen as I didn’t understand why someone would go to college for something and then decide not to do it. Yet here I am, 2 graduate degrees in school psychology and left the field after 7 years for many reasons including burnout and to be home with my kids. I now completely understand why she did what she did.
Though she stopped being a special education teacher before I was born, I feel she still was one in her heart. She always instilled a love for everyone, being understanding of differences, and inclusive to all. She always encouraged me to talk to the kid in class that no one else was friends with and to be nice to everyone, no matter their background or circumstance.
Over two decades later she went back to working in the schools, this time as a special education paraprofessional. She was a SpEd paraprofessional for over 15 years before at age 60 Alzheimer’s had deteriorated so much of her brain the school felt it was unsafe for the children as she was having a hard time getting them to class on time, remembering where to go, etc. I was angry with them at the decision, especially as she quickly deteriorated after that possibly due to the lack of activity in her day, but I do understand the safety concern.
I miss my mom who I would call on the way home from my job as a school psychologist and we’d somehow always find things to chat about for an hour or more. We’d chat and chat while I drove and even after I got home we kept chatting, even while I often had to pee. I’d just mute the phone for a bit because I wanted to keep talking with her. Sometimes I’d tell her I was peeing and we’d giggle.
I miss seeing her interact with my children and enjoy them. Granted, in all fairness, she does still enjoy them when we’re able to visit, we just are so COVID-cautious that visits don’t include snuggles and even without taking COVID into consideration, things just aren’t the same because she’s not the same.
I miss my mom.
Here Comes the Guilt…
The whole COVID thing has made the fact that my mom is dying from Alzheimer’s Disease even worse. We weren’t able to visit much that first summer and in July 2020 she went completely catatonic. She was in the hospital, hooked up to an EEG for 36 hours as they figured she was having seizures. That wasn’t the case. Over two years later we still aren’t sure what happened but after that she didn’t know she was married to my dad. Still doesn’t. No matter the photographic evidence we show her, she doesn’t understand. We’ve let that go.
We got past that the best we could and we all got vaccines when we were eligible. As I describe more below, my mom did end up rebounding to the point she was able to walk, talk, and do basic things again after that bout of catatonia. It was amazing.
However, it’s an amazing that we’ve barely gotten to experience due to COVID concerns. I’m at high risk for complications and long COVID. The more research that comes out on my conditions and long COVID, the more research shows that an infection would likely be catistrophic for me. So we continue to be extremely cautious. If I were single and didn’t have kids, I’d chance it in a heartbeat, but if something happened to me my kids would be left without a mother and my husband without a wife and also trying to figure out childcare for 3 kids and raising 3 little boys alone. I don’t want that to happen.
I also worry about my boys. Two of them are premies and two of them had RSV as babies, one required a weeklong hospital stay. I worry that with their history they may be hit by COVID harder than others and with all we don’t know about long COVID, I’d feel guilty for the rest of my days if they developed a debilitating case of long COVID, after having contracted COVID.
All that said, we haven’t seen my mom much in the past 2-1/2 years. Sure, we have outside visits, and in 2021 I was able to hug her for Mother’s Day when we all had been vaccinated (other than the kids at that point) and case numbers were low. We see her via Zoom or FaceTime calls which is great but of course, just not the same.
Before COVID we were able to take care of her for up to a week at a time when my dad had to go out of town for work. We had such a nice time having her here with the kids and almost 3 years ago when she was here for the last time to spend the week, it was different but she still was my mom overall. Kind of. I mean she needed help getting food for herself, I had to make sure she took her pills, and she accidentally called 911 so a Sheriff’s Deputy showed up at our house…but ya know, it was a good visit overall. (And our oldest who was still awake was excited to have a REAL police officer in our home! lol)
All of that is completely different now and while I’m sad and feeling guilty I haven’t been able to help my dad out more and have missed all this time with her, it’s also made it a little less ‘real’ that this all is happening and that it’s gotten so bad. Which is a little bit of a blessing as well, as odd as it seems.
Overall though, I feel really guilty for not being able to help my dad out with her care and for not spending more time with her, even though she likely wouldn’t know the difference at this point.
And Then it Hit Me
It actually just hit me a few days ago when I found a card she and my dad sent me back in 2012 for my birthday in which she wrote more than the typical signature. She also included the lyrics of a song we used to sing together when I was a child. She’d sing the parts she wrote down and I’d fill in the blanks as we sang. It’s so sweet that she remembered that 10 years ago, 5 years before her early onset Alzheimer’s Disease diagnosis, and wrote it down. When I found it, I cried uncontrollably for hours. I was able to eat dinner but while doing dishes the song came into my head again and I was crying so badly I had to excuse myself.
I don’t know what it was exactly but that card, that hit me in the gut.
I know she wouldn’t remember the song anymore and that she can’t even sign anything much less write a whole song down. I know I’ll never see her writing anything new again. This some how really solidified the line between the mom I knew and my mom as she is now. Still here physically, but not really here mentally.
It may sound weird that after almost 5 years it just hit me. I mean, I know my mom has Early Onset Alzheimer’s Disease, I was there when she got diagnosed. I submitted a formal request for records from one professional to another so I could see her cognitive ability scores so I could see the data as I’m a very data driven person. I know the progression of how things have gone, I know she’s gotten so much worse in the past couple of years, and yet…it just hadn’t hit me like it did the other night.
I knew it would eventually, whether that’d be when she was still alive or not, I wasn’t sure. I’m sure when she does leave to meet her parents up in Heaven it’ll hit me again. I hope we still have a lot of time with her but at the same time I hate that she’s suffering.
(By the way, the blanks above are boy, joy, dad, and had, in case you were wondering).
The Progression of My Mom’s Early Onset Alzheimer’s Disease
2013
I started to notice around the time of my wedding in 2013 that my mom was changing a bit. I figured it was just because I was spending more time with her that I was noticing little things and that she was just aging, though at the time she was only 55.
Below are a couple pictures of my mom and me at my wedding in 2013, 5 years prior to her diagnosis.
2016
By June 2016 when my first child was born, my husband and I knew my mom wasn’t ‘all there’ to the point that we agreed we wouldn’t be comfortable having her alone with our baby. Not that she’d ever do anything malicious but she may forget that he’s on the changing table and he rolls off, or accidentally puts a blanket in his crib and he suffocates, or something like that. We just knew she wasn’t all there and couldn’t entrust our baby to her. Luckily, that never came up from what I remember.
Still, in 2016 she was able to drive across the Twin Cities to pick my baby and I up for my 6 week postpartum check up as I couldn’t drive yet. As I’ve written in previous blog posts, going through 27 hours of induced labor plus a c-section and then other complications meant I was not able to drive at that point. She was happy to be able to drive us and still able to drive on her own at that point quite well.
2018
In March of 2018, just weeks before her 60th birthday, she was diagnosed with Early Onset Alzheimer’s Disease. She was diagnosed the same week I found out I was pregnant with high risk identical twins. Two stressors at once wasn’t ideal.
My oldest and I drove across the cities to visit my mom every Tuesday morning that summer while she was off of work. We left our house at 7 a.m. before the traffic got bad and drove 45 minutes or so to make it to my parents’ place by 8 or earlier. The twins were with too, but they were still growing in my belly. We had such a fun time with her and it was so nice to have her on the floor playing with my oldest so I could sit on the couch and chill. I was measuring full term already by July 18th when I was 27 weeks pregnant, so I was quite uncomfortable.
By the Fall of 2018 she was let go from her job as a paraprofessional as the school felt she wasn’t able to perform her job duties safely. A couple of months later, she could no longer drive as her reaction time wasn’t sufficient and to retain her license she’d have to do a behind the wheel test that my dad knew she wouldn’t pass and didn’t want to put her through. Luckily, she surrendered her keys and car quite willingly.
At that time she was still able to be on her own at home when my dad was at work. He has some Wyze cams set up throughout the house so he could check in on her if needed but at that point there wasn’t much concern. She was still able to make herself lunch and do other things on her own throughout the day.
2019
I honestly don’t remember much between 2019 – early 2020 as I was going through a lot with newborn twins and a 2 year old plus horrible postpartum depression that almost took my life. We also moved during that time and lost any friends I had previously made. I was in complete survival mode and don’t remember a lot from that stressful time in life.
2020
March 2020 the pandemic hit and everything shut down. We could no longer see my parents for fear that we’d catch COVID and die. We were completely isolated from them. For the first several months, any visits were though a storm door with a small screen opening at the top so we could hear each other.
In June 2020 she started to change quite a bit. She started hearing voices and seeing hallucinations, from what we could tell. Often the voices and sights were not nice to her either.
By July 2020 my mom was in the hospital. She had been deteriorating so quickly to the point she wouldn’t eat, she didn’t drink much water, she didn’t talk much, she walked around the house aimlessly following some sort of path to the point there were lines in the carpet from where she drug her feet.
This had been going on for a month or so before she ended up in the hospital with dehydration and suspected seizures. She was completely catatonic and could no longer speak or eat on her own. She could just lay there.
Of course, we couldn’t visit her due to COVID restrictions and even my father, the one person she would recognize, couldn’t visit her for more than an hour a day due to COVID hospital restrictions.. We thought we were going to lose her.
Once she ‘came to’ somewhat, she no longer knew that my father was her husband. When asked by nurses who the man is sitting next to her she’d laugh and say something witty like, this handsome guy, or something like that. She didn’t say that he was her husband.
After they ran every test imaginable and hooked her up to an EEG for 36 hours but didn’t detect any seizure activity, they put her on some meds and released her to transitional care. I remember meeting my dad at the transitional care place, assuming this was the last I’d ever see her. She wasn’t herself, she could walk with support by then but still didn’t talk or make eye contact at all.
COVID be damned, my father, mother, and I hugged before she went into the transitional care center where she’d be quarantined for the full 14 days that she was there due to COVID precautions. During this time she was alone, confused, and for the first time she’d wander from where she was supposed to be.
She wasn’t supposed to leave her room and though my mom had previously always been a very diligent rule follower, she wasn’t anymore. I bet she didn’t even remember the rules. She’d roam the halls, probably looking for my dad, while voices in her head would upset her. Previously he had been able to calm her and the voices & hallucinations but without him there, she was alone with them. I can’t imagine how scary that must have been for her. Luckily, she probably doesn’t remember this.
After 14 days she was released to my father’s care even though the center did recommend she go to assisted living or memory care. My dad was still able to care for her for the most part and she had improved somewhat.
Late 2020
Eventually, at some point, she got much better. She was able to talk, laugh, and do many things that she used to be able to do before July 2020.
Then months later the voices came back with a vengeance. She’d have screaming fits, completely unlike the mom I’ve ever known, and get so very angry and sometimes sad due to whatever the voices were saying to her or whatever she was seeing. The hallucinations would gang up on her, steal her water or food for themselves, and say mean things to her.
It was so sad to see her go through this and scary for my kids to see via our Zoom calls and outdoor visits. It was to the point my then 2-year-old twins were afraid to have Zoom calls with her as she’d switch from being nice and engaged in what they were doing to yelling at something that wasn’t there. (Luckily never yelling at them or me, just the voices and hallucinations off camera).
After a while, that improved as well. Meds were adjusted again and she seemingly didn’t have an evil entourage following her all day everyday and she was back to being more chill.
However, it sounds as though things are getting worse again.
It honestly is like we’re constantly living on borrowed time with her, which makes it all so much more difficult not being with her all the time and figuring out emotionally how to deal. I honestly don’t know how my dad does it, he is so amazing and calm and gracious with her. As is her live-in caregiver whom we are so incredibly thankful for.
2023
Five years ago my mom was diagnosed with Early Onset Alzheimer’s just a few weeks before her 60th birthday. I knew she had it back then, even before she was diagnosed, but never in a million years did I think it’d get this bad so quick.
This morning I was talking to my little sons, 4yo twins and 6yo, about their grandma, my mom, having Alzheimer’s. They know she does but I realized I hadn’t re-explained it for a year or so, so the twins didn’t remember really what that meant.
I explained as best I could without getting to technical about the brain’s inner workings and then read them a book I bought them a while back about grandma’s and Alzheimer’s Disease. While reading it to them I started crying and then all out bawling.
I miss my mom, the mom that she used to be, so damn much. I know that our continued covid cautiousness has made us lose even more time with her. I’m stuck between my kids and my own health, and my mom slipping away more by the day. I’m so torn and I miss her so much.
She’s still alive but she’s hardly her.
She doesn’t even know her maiden name anymore, and I’d think that would be one of the memories that would stick with her since the old ones are the ones that usually stick, but it’s gone, all gone.
She hasn’t known she’s married to my father for years now and no longer knows who I am either.
As much as I want to spend time with her, and my dad of course, I also want my most prominent memories of her to be the ones of her that were before she was diagnosed 5 years ago. I want to remember her as she was, not as she is.
Things She Can’t Do, 6 Years After Early Onset Alzheimer’s Disease Diagnosis
My mom was diagnosed with Early Onset Alzheimer’s Disease (EOAD) just 6 years ago, just weeks before her 60th birthday.
As I noted before, at that time she could still drive, go to work everyday, make and receive phone calls, write, read, do everything she needed to by herself.
Less than 5 years later, she was no longer able to read, write, or form complete thoughts. She hasn’t been able to drive or prepare food for herself for years. She can’t complete activities of daily living (ADLs) on her own and she has to have 24/7 care. She has an in-home caregiver who is with her during the day while my father is at work. She no longer can shower on her own, brush her teeth, get dressed, or use the bathroom on her own.
I asked her a few months ago when we got to spend a full week with my parents at a resort up north, if she knew who I was. She brightly responded, “You’re You!” and then laughed. I laughed too as I thought that was quite quick and witty, especially for her! She then stared at me unsure what to say next. I said, “I’m your daughter, Nicole” to which right away she responded that yes, she knew that. I’m quite certain that she doesn’t know I’m her daughter anymore but at least she still responds positively to me when we’re together or on a Zoom call.
To that point, I don’t think she knows that my kids are her grandchildren. I think she simply enjoys being around little kids, like she always has, and giggles at their antics. She really does enjoy those little guys, and I enjoy that as well.
We did visit her and dad a couple of weeks ago to help cut down a tree that was diseased. It was great to sit by my mom and chat a little bit, though we mainly sat it silence, while watching the guys work (my dad, husband, and sons). We shared some giggles about things my kids did, I updated her on some things going on in my life, but mainly we sat in silence.
I always feel bad about not talking with her constantly when I’m with her but talking about anything in the past is out because she won’t remember it and will feel bad if she realizes she should remember it. Talking about the present well, gets boring and all I can do is talk about myself which seems so egotistical. lol It is great though that she still responds positively to me and laughs when I make a joke or when my kids do something funny.
A couple of times my twins had her in tears she was laughing so hard! I honestly thought she was going to pee her pants! A similar thing had happened when we were at the resort with them earlier this year and I said aloud that they were going to make her pee her pants which in turn made her laugh even more. I don’t know how she stayed standing she was laughing so hard! That’s been one neat thing about this…she gets more of a giggle out of things than she EVER used to.
It’s so weird to miss someone so much when physically they’re still here on Earth with us.
It’s weird to want nothing more than to hold my mom like a baby and rock her but of course not being able to do so because 1. that’s weird and we’re the same size, and 2. our cautiousness about COVID.
Why I’m Sharing This
Why am I sharing these intimate details about the heartbreak of what my mother and family are going through? Well, I started writing this while I was crying a few nights ago after finding that song written out by her. As you can probably surmise, writing is a form of therapy for me at times and it really helped to get the words on paper, or the screen I suppose.
As I came back to it days later I realized that instead of keeping it a draft with the tens of other drafts of posts I’ve partially written, I wanted to finish this one and publish it.
I hope that it’ll help someone else who is dealing with their parent or other loved one fading away from Alzheimer’s Disease, especially Early Onset Alzheimer’s Disease.
If not, that’s ok too. I don’t write from the heart on here as much as I probably should so here you go, here is what is on my heart right now.
I miss my mommy.
Learn More About Alzheimer’s Disease
- Early-Onset Alzheimer’s Disease (diagnosis before age 65)
- Alzheimer’s Disease information from the Alzheimer’s Association
- Recommended Books about Alzheimer’s Disease (affiliate links)
- The 36 Hour Day: A Family Guide to Caring For People who have Alzheimer’s Disease and Other Dementias
- Not Going Gently: A Psychologist Fights Back Against Alzheimer’s for her Mother…and Perhaps Herself
- Still Alice, it comes in book, audiobook, and movie forms. I watched the movie.
As a mom of identical twins and a son two years older, I have gained invaluable experience in the realm, and chaos, of parenting. With a Master's Degree and Education Specialist Degree in School Psychology, I spent years as a school psychologist, helping children navigate through their educational and emotional challenges. Now as a stay at home mom and professional blogger, I combine my areas of expertise to help you in your parenting journey.
Nicole….what a powerful writing this was. I am in tears, thinking of the Cindy we all knew and loved growing up. Alzheimer’s is such a terrible disease, and affects so many. I totally understand how you miss your mommy. I felt that same way about Dad in his last year or two. I just wanted him to acknowledge that I was his daughter. He didn’t, but I wanted to think that in some small way, he knew who I was….maybe just the smile when he saw me or holding hands as we walked down the hallway in his wheelchair. Somebody asked me once why I kept going down to see him when he didn’t know who I was….and I said because he is my dad and I just want to be with him and hold his hand while I still can. I know how hard this must be for you, and I am so glad you can still spend time with her….even if it is just to hold her hand. Thanks for writing this…your family is all in my thoughts and prayers. Take care ❤❤😍😍
Donna, thank you so much for reading my long post, sharing your insight, and memories. 🙂 She’s always loved you all so much! I’m so sorry you had to go through this with your dad as well, it’s all so hard. I love the image you painted of you holding your dad’s hand while he’s in his wheelchair. That’s so sweet and I’m so glad that you two had those moments. Now you have me in tears ♥ Thank you for all that you do to raise awareness for Alzheimer’s and funds for the Alzheimer’s Association. Thank you for your kind words, take care as well♥