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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..
I prematurely retired 4 years ago at age 54 (Brother and Father both deceased) leaving me as the sole caregiver of my Mom diagnosed with Vascular dementia 2019. She has been on Galantamine for 4 years but has started declining in recent months…..Doctors in our Rural area aren’t proactive- Just left Neurologist appointment Monday where I described increasing anxiety/ mood swings, depression, inability to fully articulate thoughts, find words, forgetting things she knew two months ago hoping the Doctor would make some suggestions on changes to Depression medications, suggest something for restlessness and irritability, maybe explore something other than the Galantemine (NOTHING)…..curious as to other people’s experiences with Medications to address behaviors above so I can research new Doctors and come prepared to ask the right questions etc. Thank you in advance for your suggestions.
Sending your family prayers and so much Iove! I’m honored to do work with dementia/Alzheimer’s clients. I don’t have a relationship with my mother and find so much comfort taking care of complete strangers who appreciate everything you do for them! It’s bitter sweet!
Your doing a great job! And love the memories you’ve shared! ♥️
Great to see you today at the Atco Battles Alzheimers event. Thank you for sharing your family's story and for what you are doing for caregivers who deal with this horrible disease on a daily basis. Keeping your Mom and your family in my thoughts and prayers daily. Take care 💜
(Maybe we'll catch up with you at a baseball game)
Thank you for sharing your Mom's story with us. I think it is so important for people to understand this disease. I cared for my MIL for 6 yrs with this awful disease and it is so very hard . God bless you and your family. ❤️
Thank you so much for sharing your families life with us all, I was a caregiver with home health care and I had a client that had dementia for 10 years that I was with him before he was put into a wonderful facility! He had his ups and downs but he always brightened my days! He used to be a Captain with our local fire department and I loved hearing how he grew up in Fresno, California as a child. His memory of the past was amazing but had no memories of the present, but he knew me 😊. I will never forget him and how he taught me about this disease! Your mom makes me smile with each video, her outfits, jewelry and her love of dancing, may God give her comfort and peace as well as her children! God Bless
Thankyou for sharing your story and your lovely Mum, I pray to god there’s a cure for this robbing cruel disease.. 🙏❤️ Love to your mum, you and your loving family. 🙏💫❤️
Thank you for sharing your story. My father has dementia and its comforting to watch how you interact with your mom.
My dad lives in an assisted living facility as that what’s best for him and the care he requires. Caring for my dad even though he lives in a facility is still very stressful because you never if he’s having a good day or bad day. He has crazy stories about his day and I don’t know what’s true. When he’s having a good day he says having dementia is torture because he can remember something 50 years ago but he can’t remember if he ate lunch. It’s sad to see the progression of the disease and what it does to your parent the person that raised me that now I have to take care of like one of my kids, diapers and all 😞
I cared for my mum who had vascular dementia. She was diagnosed in 2008 but in 2013 she moved to a care home as it just became too much with a young family. She died 8 years ago today on the 28/10/2017 and she is missed every day. I love watching your relationship with your mum, it’s so beautiful.
My brother had a 5 year journey with his beautiful wife of almost thirty years. He was her sole caregiver until the last month of her life. I was there as much I could be. Retired and moved up to be there and help. Thankfully she passed earlier this year.
This a cruel disease to have to have and live with. We just the Alzheimer’s walk a couple of weeks ago!
I realized I need to take more photos and videos of my mom. She hasn’t been officially diagnosed but has dementia. It started at age 70 with repeat questions and she is now 79. What Phyllis suffers from greatly so does mine, anxiety and depression, though you would of not of known it growing up. She has reached a new stage with delusions and has begun to accuse my father of beating her. Which is not true. She calls me or my brother telling us this and that she’s going to call 911. My dad says it just triggers and one minute she’s bringing in the mail and looks up at him and says you beat me. These are the dark moments but the ones that are filled with light happen most often. Where she’s happy, joyful and in a good mood but very, very forgetful, throws important things away, puts her clothes in the linen closet, buys 10 things of something she already has, and has sundowners to name a few. But she loves her sunsets and she loves to dance.
Thanks for sharing your story with us Phyllis!