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Our Journey with Alzheimer's disease: A timeline of my mom's cognitive decline.
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In 2018 at 68yrs old, my mom was having trouble remembering things at work so she went to see a neurologist. He did an MRI & told her her forgetfulness was likely caused by stress/anxiety/depression & to see a therapist, possibly needing medication. Since the neurologist assured her it wasn’t Alzheimer’s, (my mom was so scared of getting the disease, her dad had it and she knew how devastating it was) she never went for treatment of her anxiety or depression.
2019 at 69yrs old, my mom felt her memory was getting worse so she asked me to go back to the neurologist with her. He did another MRI and found that in comparing the two scans there was brain shrinkage. The neurologist recommended we go to Penn Medicine in Philadelphia for further testing and clinical trials. So that is what we did.
2019-2020 at 69/70yrs old, We noticed things continued to get worse for her. She wasn’t able to pay her bills or write checks anymore and she would get lost when she drove places. The doctors at Penn Medicine diagnosed her with “mild cognitive impairment” and then later, Alzheimer’s. They started her on an Alzheimer’s drug called Memantine, along with a drug for anxiety and depression. We stopped the clinical trials because they didn’t seem to be doing much for her and the testing really stressed her out. She retired from her job selling insurance.
2021-2023, my mom really relies on us for most things now. It's my brother, sister and I and her 2 caregivers. She cries nearly every morning because she is scared and confused when she wakes up. She constantly thinks people come into her home and take her things. She can not bathe or dress on her own, she can not brush her hair or put on her makeup. She can not make her meals or pour herself a glass of juice. She 𝒊𝒔 however still able to brush her teeth, if we put the toothpaste on the toothbrush for her and show her where the bathroom is, and she can also put her shoes on if we place them next to the correct foot. She can still walk and talk (although it’s difficult for her to find words and follow a conversation now) and she can still DANCE!
2024, my mom is now at the end stage of the disease. We have caregivers for her 24/7. She has to be spoon fed now and has to be changed and dressed each day. We bathe her and brush her teeth. She sleeps in a hospital bed and can no longer walk on her own. And although she does still talk it is difficult for us to understand what she is trying to communicate to us. She gets agitated, cries and shouts throughout the day but is on medication that helps us manage her unpredictable moods. I really wish could still dance with us..
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Beatiful way to honour your mother. My mother Margaret died in 2018 of Alzheimer's and it was a long, heartbreaking journey. There was a time she refused to eat, until I showed up with a cup of soft vanilla ice cream and put a spoonful in her mouth. She had been non verbal for a while, but this day, she looked at me and said clearly "Boy, is that ever good." It was so rewarding. Sadly, the last time I saw her she tossed a mango smoothie at my back and a day later, slipped into a coma. I don't hold that memory with anger because I know my mother, and that certainly wasn't her sweet demeanor for 89 years. Sending love to all the caregivers who do it out of love, and for those who chose to take on the role of caregiver as a profession at this most difficult time. ❤️
Your/your mom’s journey sounds so similar to mine/my mom’s - diagnosed in 2018 though my mom was 72 at the time. I remember how fast she declined. It’s hard to emotionally keep up and stay afloat. If you want my two cents, stay everything you want to say even if you’re not sure if she’s listening, reassure her you’ll be okay (even when it feels like a lie), listen to your gut, don’t let work get in the way of the final days. Thinking of you, your mom and your siblings. Sending love ❤️
How does a family in need of support benifit from you organization? Is it only for families in you area?
I am so sorry that you are all going through this awful disease. I know it all too well. We lost our daughter in January after a 5 year battle with Alzheimer’s. She was 48. We are in NJ too. As a way to spread joy and also awareness we started a group called Shells for Stacey. You can find us on Facebook.
I have many "older" friends who have some form of dementia and Alzheimer's. My Mother-in -Law passed a year ago after suffering for 14 years. My husband, her oldest son died unexpectedly and she declined quickly but remained on earth with no means of communication for 6 years. It is heartwrenching that I have watched it steal the souls of 5 people. And it always makes me ask, "Why?". Sending your family love and light.
Im am so sorry your family is going through this. My mom had Alzheimer’s. Such a cruel disease. My prayers are with you all
I am not sure how I stumbled upon your Instagram posts, but I am glad I did. Your mother is a beautiful soul. I hate what she is going through and what this disease is taking from all of you. Her smile is so contagious, especially when she is dancing! Although I dont know her personally, I can tell by your posts that she was an outstanding mother. It is evident in your love and commitment to her. xoxoxo
My dad's journey w dementia ended in 2018. I wish I knew more as we went through it, to have been more aware of how he must have felt. I miss him so much 😢. I pray Phyllis has a peaceful transition when that time comes, spend all the time you can with her now.
It is so scary how fast this disease can take someone. Your Mom’s story is heartbreaking and yet when you are with her it makes me smile. You have an amazing Mom ❤️
I'm beyond grateful to have found your page a few months ago. Thank you for sharing your mom's story and for shining a light on this awful disease. Our mom's stories are so relatable, time-line and even the Penn Med trial which my mom's neurologist referred us too after her diagnosis Jan 2020 but I had decided not to do it, felt it would be too much on her. May you find happy moments in the challenging days. Sending big hugs.