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My Mom Has Alzheimer’s & I’m Feeling Mad, Sad, Guilty, & Scared

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My mom has early Alzheimer’s. This is something really personal and not autism or epilepsy related and not related to the king. 

However, as many of you know, this blog is mostly about me and how I’m dealing with things. And the fact that my mom has Alzheimer’s and seems to be getting worse fast is like the elephant in the room in my brain. 
I’ve written a few times, once recently, that sometimes I’m in a foul mood or kinda down and I can’t figure out why. The king is fine. Wifey is fine. Things are happily status quo on our corner of Autism Avenue & Seizure Street. So why do I feel like this?
Because my mom who lives less than a half mile away is losing her marbles. And that makes me feel sad, mad, guilty, and scared  a lot of the time…
Sad because it sucks that this is happening to a 76 year old woman!  Why her, why now?  Clint Eastwood is still directing movies well into his 80s!  My mom’s stepmom is 96 and still has most of her mental capacities. Why is this happening to my 76 year old mom. 
Mad because I think there’s so much she could’ve done to prevent it and mad because I think there’s so much she could be doing now  to slow it down… But she’s a stubborn woman who won’t change her ways… who won’t eat right or exercise.  (she’s overweight but not obese but can barely walk down the block)… who won’t challenge herself mentally…  who won’t (or can’t remember to) take her pills every day…. Pills that could maybe slow this down a bit
Guilty because I get mad about the stuff I mentioned above. Guilty because I lose my patience when I’m with her and she asks me the same question 6 times in  an hour. Guilty because i get frustrated with the way she lives her life.  Guilty that I’m not doing more, that I don’t see her more… Especially guilty that I don’t want to see her more. 
And scared?  Why am I scared?  I’m scared for 2 reasons…  First I’m scared that she’s only 76 and physically is in decent shape, but mentally is going down the drain fast and furious. So I’m scared that she’s going to live a lot longer and in the next few years I’m gonna be taking care of a teenage severely autistic “man” as well as my 80something mom. I’m firmly entrenched in the sandwich generation. 
And what scares me even more is that my dad died from Parkinson’s disease, my mom has Alzheimer’s, and my son had autism. 
Who knows what is in store for me when I get older… But on some days I’m certain that either Parkinson’s or Alzheimer’s are heading my way. 
So what does Alzheimer’s look like in my mom? Well it’s the usual stuff of being extremely forgetful. She loses her keys often, she loses her cell phone often, she forgets that she called me three times already on any given day.

But that forgetfulness takes on a scarier tone when it comes to driving. Yes she still has her license. She always only drove within an 8 mile radius of her house. She always barely put 1000 miles on her car in a year. All she would drive to is church, supermarket, mall, and her brothers house and brother-in-law’s house. 
But within the last month or so she has now gotten lost coming back from her brothers house and brother-in-law’s house…. Places she’s driven to a million times before… And because she forgets her cell phone often, getting lost is scary business. 
So my sister and I have to make the tough decision in the next month or so about taking her license away. 
But that won’t be easy on her because she barely gets out of the house as it is. 
Because the other thing about Alzheimer’s and my mom is that all the quirks of her personality became magnified times 10. 
For example, she always ran late to things and always could barely get out of the house before 1 PM on any day because she had to have her hair, and make up done perfectly and the house had to be spotless before she left. 
And the other quirk of her personality was that she could always make a whole day revolve around one simple activity such as going to the mall to buy a gift. 
But now with the Alzheimer’s  she can barely get out of the house before 4 PM on any given day, and when we go to pick her up at 4pm, very often the house isn’t really that clean and she’s barely dressed and ready to go. What has she been doing all morning and afternoon?
And now her whole day now revolves around the simplest activity. 

“Did you get out today mom?”
“No I didn’t get out today because I had to take a bath.” 


“Did you get out today mom?”
“Yes I got out.”
“What did you do?”
“I went out around 5 PM to go get some milk.”

The good thing about my mothers Alzheimer’s though  is that she is (or appears to be) happy as can be. Happy and content to be in her house all by herself. And listen to her favorite radio station all day. 
That’s the other thing about my mother’s Alzheimer’s. She has regressed into being a teenager.
 All she does most days is listen to a pop music radio station all day trying to win concert tickets. And all she talks about is listening to that radio station and talking to the DJs. She is on a first name basis with the DJs at that station because she calls them multiple times per day. There’s some times during the day when I’m trying to call her and can’t reach her cuz she is calling over and over trying to win tickets and is calling on both her home and cell phones. 
When she’s not listening to the radio she is watching tv and fawning over young actors. She has been obsessed with Justin Timberlake as a singer and actor for a few years now and her current obsession is Michael Fassbender. 
It all sounds cute and funny, but not when it’s your 76 year old mom.  And this is not the way she was growing up. This is not part of her personality magnified.  It’s just weird and bizarre. 
“But at least she’s happy!  Lots of people with Alzheimer’s are angry and cranky!”
That’s what wifey tells me when I’m crawling up the walls after I’m in my mom’s presence for a few hours. 
There’s tons more other stuff going on with her but I feel like I rambled on enough. 
I said early on that my mother could’ve prevented this by challenging herself more mentally. And what I mean by that is when before my dad passed in 2012 (and got sick with the Parkinson’s in 2010) he handled all the finances, he did a lot of the food shopping, he did the majority of the driving, etc, etc. 
When he got sick my sister and I took all of that on for my mother. She barely knew how to write out a check. Maybe we should’ve forced her to do it all on her own. She was only 71 years old at the time. But she became too reliant on us…
So she wasn’t forced to use her brain power let me know what they say “use it or lose it”
And now we tell her to work on a crossword puzzle, or do the jumble in the newspaper, or there’s a track right by her house, walk around the track… But she yeses us and it falls on deaf ears. 
Anyway again so much more I can write but I feel like I said enough. 
And she does not have the kind of relationship with me or my sister where she would want to live with one of us. And as I said before she seems happy & content to live in her big house all by herself. 
And listen to her radio station and watch music videos most days. 
Wifey & I try to have her over for dinner at least once a week and even that is a challenge because she’s barely on time. 

“Please get here by 6 PM so you can have more time to spend with your grandson who goes to sleep early” (sometimes as early as 7:30PM”)

But she’ll show up at 6:45pm with no reason or excuse why she’s 45 minutes late. 
And after she leaves my nerves are shot and I’m feeling mad, sad, scared and guilty. 
There I go again rambling on again. 
Anyway, I’m going to end it here. And I know there will be some family and friends that read this and think that I’m being too personal and giving up too much information about my mom or how my brain works. And what am I getting out of writing this?
 I honestly don’t know. Even though it has nothing to do with autism or epilepsy it just feels good to write it down. And it feels cathartic to put it out there to the worlds and maybe get some feedback from some strangers who maybe are in the same boat as I am… and who have the same thoughts in their head as I do…
So there you go. 
Autism Daddy over and out!
The end


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Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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20 People Replies to “My Mom Has Alzheimer’s & I’m Feeling Mad, Sad, Guilty, & Scared”

  1. watched my mom take care of my step-dad's mom with alzheimers for years, she had a recurrence of cancer, several strokes and some days the alzheimers was a blessing because she was happy (or seemed to always be) she had a fixation on the cat and everything she did. She would come down the hall all excited wanting everyone to come see the cat just laying on the bed. But she was also a wanderer, she would get up at 3 in the morning like it was 10am and start to go out for a walk in the neighborhood. She was like houdini in her ability to get dressed faster than you could get her shoes off. At hospitals, when they would put her in posey jackets to keep her still she would wiggle out and sit on the edge of the bed dangling her feet. Eventually, she did have to go to assisted living (until her death in 1992), It was even more confusing for her and hard on my mom. Now, I have 11 year old with autism, my mom is living nearly 500 miles away and just finished a round of chemo for colon cancer, plus has heart/bp/diabetes and other issues including asthma. (She thinks she is doing ok though) My dad, who has a loving and supportive wife to help him, for which I am very grateful, just told me he was diagnosed with Dementia. He has had several back problems and a few other health issues in the last few years. He is closer, only about 189 miles, but still hard to visit regularly. I can tell he is "down" from being told what was suspected by family for the last few years.. he gets angry easily and doesn't remember it, and has had more trouble with remembering in the last few years (the moods are the hardest part though). And, I am now alone with my 11 year old "king" who I am lucky has made a lot of progress on his autism journey. He is miles ahead of where he was a few years ago, finally potty trained, verbal, and recently learning how to calm himself from a meltdown (in under an hour).I feel the emotions that you share, Sad, Mad, Scared to death, Worried, Stressed, Frustrated, Lost! But since my primary support system was my older kids… two now in military, one married but still nearby for now and the other in the middle of the arabian gulf on a ship; one struggling to go to school, work and take care of twins (while helping her mother in law), and the last one all the way up in NY on a full scholarship to college… it has left me strapped for "family" support with someone my "king" trusts. The few friends I have (two close by) that try to help have almost equally and some worse health issues as I do (heart/diabetes/fibro or arthritis/COPD/bone and blood issues and one has MS to boot) we are the three musketeers of bad health lol but we hang in there. Autism Daddy, you have shown so many of us that we are NOT ALONE, you aren't either… while we can't reach through the screens and fix each others' problems, we can listen to each other vent and show our support from our own personal knowledge of the stresses faced. Rock On Sir! 😉

    1. oh on a side note, to cheer my dad up some, I told him he can now "forget to take out the trash" and that on the "bright side" all those things in life he wishes he could forget he now can… I told him even if he can't remember the names of his kids, hold on to one thing through this… people love him and always will.

  2. Hii – I really enjoy reading your posts – they're raw, inspiring and true. I just feel the need to share with you my experience. My son is now 19 Autistic, ADHD, MMR, OCD – you name the acronym – Verbal tho and very loving! My Mother had Dementia (to this day I don't really know the difference between that and Alzheimers) anyway – I had an experience with my Mother when she was in the hospital (early on) and I do this – I know it's weird – but I seem to go out of myself and just look at the situation – a lot of Mom's repetitive and echolalic mannerisms reminded me so much of my Son. I tried to share this with my sibs but was met with blank stares. What I'm trying to say is don't blame yourself but look at what you may learn about the situation and how it is all intertwined – they are still people, still there, and oh so interesting and loveable! I hope in some way this gives you peace!

  3. Sorry to hear of your difficult situation. Please take care of yourself, you will be no good to others if you let stress and worries get to your health (i.e: worrying about things outside your control: the future, the past, what others may think….) Good that you found writing it cathartic… thanks for sharing.

  4. AD, I totally understand. I have an 11 year-old with Autism, my grandmother passed away with Alzheimers and now my mother has Alzheimers. It's really rough. Sending you encouragement and love.

  5. Anonymous

    "But she'll show up at 6:45pm with no reason or excuse why she's 45 minutes late." But she does have a reason and an excuse… she has Alzheimers. If you need to have her there at a certain time, go and pick her up… especially if she's getting lost in her car. You don't need her to be lost at night. I'm really sorry your family is going through this, I am. But, the truth of the matter is that she has Alzheimers. There was probably nothing you could do about it to stop it from happening, however, you can help her now. Like others have said, maybe it's time for her to have assisted living. You cannot take on the job of sole carer – it's just not possible. But you can help her get the help she needs. You know how to do it… you've done it for your son for years, and now your mum needs you to do it for her x

  6. I understand that this is harder on you and other family members than it is for her. All of your feelings are legitimate. I honestly feel that since you recently told us your public persona as an employee with Sesame Street maybe it is not respectful to your mother to be sharing her private life and the struggles she is having with all of us, Would she want that? Something to think about.

  7. There is a lot of good help out there for this kind of situation. I work in the home health industry and I am sure there are multiple agencies in your area that would be able to take much of this burden off your shoulders. A home health aide would be able to help her stay on a schedule, remember to take her medicines, drive her to the store and appointments, help her clean her house and do laundry.

    Please don't despair. Get in touch with an agency that has aides experienced in Alzheimer's care. They will be able to help you. If you don't know where to start, a local seniors center may have info on a few agencies, or try your local agency on aging.

  8. I so get this. My mother died of Alzheimer's when she was just 78 years old. My father had died eight years earlier… Those were very difficult years, managing both my autistic son (who was 13 then) and my mother's needs, as a single parent then myself. Your emotions, in my opinion, are valid, honest, and completely normal. I reacted in similar ways to both diagnoses — why my mother? why my son? Both are such cruel diseases/disorders. I wrote about here, I hope this helps someone:

  9. My dad is in early stages as well and it's tough – he wants to know what he can do with my son who is borderline ASD, explain it to him, my dad is 84. The licence thing – he has his and my mom doesn't want to take it away from him – she doesn't want to be blamed. If the Dr. does it my dad won't want to go back to that Dr. My dad is all sports, no computers, no newspapers, no radio……it's sad to see what was once a happy go lucky work hard person become someone who lives their life in front of the tv or continuously taking naps. I walk in different shoes in a different country but they have the same squishy feel yours do. God Bless you AD – I'm glad you speak out for many of us.

  10. Hang in there, AD! It is so frustrating watching our parents age and fall victim to various ailments as they get older, and there's really nothing anyone can say to make it easier. 🙁

  11. Anonymous

    I sooo recognize and understand your feelings and situation!!! You aren't alone. Two things: One, you'll be surprised to find how much the tricks/skills you've learned to help your son can come in handy with understanding the world as experienced by your mom. The supports your provide your son can also help your mom, as her executive functions and sensory concerns change…. You're actually ahead of the game as compared to someone who's never had to figure out where an individual is at a given moment in time and meeting them there. Two: As one of the other commenters above suggested, you may want to subscribe to The Alzheimers Reading Room–they have short little articles and blog postings that help in the adjustment to alzheimers as the new normal…… Amazing how these journeys we are on, are ones that we never would have bought tickets to…. You aren't alone. There are quite a lot of us with similar passports…. Best wishes to you and your family. – jan

  12. Anonymous

    I have begun to wonder if anyone thought to study an Alzheimer's – Autism connection because we too are going through this with my mother-in-law. Unfortunately, she lives in the Mid-Atlantic area of the U.S. and we live in the Mid-South so there are almost 900 miles separating us. My husband is her only living child, my father-in-law also passed away in 2012. He too had Alzheimer's but he had many physical problems. When she stayed with us she didn't sleep, she forgot to take her medicines without reminders. In her defense about the medicines, at home she leaves her medicine boxes on the kitchen table where she sits to eat so she sees it. Cannot do that in an autism household though. Have to keep those medicines out of sight. We felt very guilty for thinking that if she did need full time help she would not be able to stay with us. Luckily, while not in assisted living she does live in a senior development and apartment building. It is a gated community with 24-hour patrol so if she ever did leave her house at night and started wandering we would not have to worry about her. But she does have that car that we also are beginning to worry about. Luckily, her keys and her cell phone both live full-time in her purse and that purse goes with her everywhere.

  13. Anonymous

    My dad is going into hospice today because of dementia and I have a 6 year old son with autism. I understand your feelings and am going through it now. Good to get it out. Whatever helps. The stress from both is intense.

  14. I know your stress too well! I joke about living in an "A Sandwich", a son with Autism and a Mom with Alzheimer's. My Mom is now 81, but she was about 76 when I started noticing the signs too. All I can tell you is enjoy the Mom you have right now…because she will become less verbal, less quirky. I am blessed that my Mom is very sweet too….but I would give anything to have my Mom that had an infectious laugh back. I would give anything to have my Mom that could drive me nuts by calling me 8-9 times per day because she forgot. The Mom that could drive me nuts one minute, but was my best friend and confidant. I want that Mom back, but I am grateful to have the little bits of that personality come out briefly. Having lived in the "A Sandwich" for the past 7 years, I see Autism and Alzheimer's as very similar issues with the brain. The difference though being, as my son learns new skills and is able to adapt more in the world, my Mom loses more skills and becomes less verbal in the world. I agree that life sure isn't fair, and we have to appreciate the moments that we are blessed to have with our family. Hang in there…by the way, I was blessed in that the doctor took away my Mom's license, I didn't have to…I just had to uproot her from her home to assisted living 5 years ago because she was no longer safe to live alone.

  15. Anonymous

    Ham or peanut butter? Sandwich generation concerns are giving me an ulcer I'm pretty sure! Parkinson and hospice now for mom, besides serious school issues (or lack of) with our king. It's normal to be all those things you listed in the title of this blog. It's grieving and there's not pretty way to do it or handle it. Be kind to yourself and your mom. You know that even if both of you did things differently, that would not necessarily have been a silver bullet!

  16. Anonymous

    we took care of my mil for the last 5 years until she passed in our house. i will tell you that's it's good to write about your feelings. it'll help you work through them. in the same way that autism has taught you many things & you've learned to roll with it, alzheimer's will do the same. it's a whole different world but you can learn to navigate it. some of us refer to it as alzheimer's world. 🙂 Bob Demarco with Alzheimer's Reading Room has some great articles that can help guide you & reassure that you are not alone and that the feelings you have are normal. alzheimer's can be overwhelming so it's good to reach out to others that have experienced it. when you are feeling irritated or blaming try to remember alzheimer's is a brain disease & even the healthiest of people with great habits can get it. i am sorry your mom has it. it would only let me post as anonymous but signing off as Gwen Smith & wishing you the best of luck

  17. Anonymous

    AD…I get it…and I have had the pleasure of meeting your lovely wife at our son's school ;)….my MIL has alzheimers…and my mom has emotional issues, and I feel torn, just as you do…I do my best to help, but frankly, I'm exhausted from my 3 hours of sleep a night for the past 14 years…coupled with resentment for neither my MIL or mom for ever helping me with my son when they were capable…but still, as a daughter/ daughter in law, I do my best to care for them…but, yes, it's like a big stress sandwich, and the layers keep getting slapped on…Make sure you don't burn yourself out

  18. I'm so sorry – we just went through this with my FIL and had a lot of the same feelings. It was rough taking away the license but had to be done, and oh man, when he had to stay with us after Hurricane Sandy it was a nightmare – autism + alzheimers do not go together well at all. It sounds like she has a good set up with being close to you, and happy in her home. Maybe you can work on getting her some help at home, a cleaning lady or meal delivery, so she gets used to it before things get worse – maybe even a visiting nurse? Hang in there AD, it is not an easy time, trying to be a grown up and having to take care of your parents, your own kids and then facing mortality issues as well. Load up on the coconut oil for your own brain – good results for alzheimer patients. Can't hurt, right?

  19. Pat

    A.D. , sorry to hear about this added stress. Could your mom move to an assisted living center? There she would be safe and could have her meds controlled for her, get meals and socialize with others. As to her driver's license….. we ended up calling the state and requesting that the DMV re-test her driving skills. That made them the "bad guys" , not me or my sister. It's a tough road, as I well know. Everything we tried to do to make mom's life better and safer, was met w/ resistance. Good luck in whatever you chose to do. Peace….