At what point do you say this illness starts??
What I’m asking is my wife diagnosed officially 14 months ago so is that when you say the onset started? Or when you start remembering when you noticed changes?
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Interesting question. My husband was officially diagnosed in February 2018, but I noticed changes in his personality in 2010. I tell people who ask that question both -- the official diagnosis date and when I first noticed changes. Btw, my husband passed away last year.
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My wife was diagnosed with early stage Alzheimer's in November 2022. Noticeable signs that something wasn't right started showing up at the beginning of 2022. From what I've learned since then, reading everything I can about the disease, is that the development of the disease could have started years earlier.
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I agree with what others have said. As spouses, we know when something "isn't right" with our partners. As much as I didn't want to see it, little things added up, and became too upsetting to ignore.
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I just found out my dad had a stroke several years ago and now he is diagnosed with vascular dementia. That explains his symptoms as it gradually got worse but in the last year, he progressed rapidly especially after breaking his back.
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I’ve always been frustrated when you read the first signs of Alzheimer’s is forget conversations, ask repetitive questions, etc. Definitely not what I experienced. My DH and I both noticed changes years before any of that started. Spouses most definitely see differences long before what they tell you to look for.
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The first signs are often not memory loss or repetitive questions, but more subtle signs such as loss of executive functioning, loss of decision making, loss of good judgement. These signs are frequently excused as stress or overwork or depression or a having a marital problem, or just getting old. Examples could be inability to manage bill paying or preparing a cooked meal correctly.
Iris
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My husbands first symptom was he couldn’t handle noisy restaurants. We went out of town and had to go to 4 different restaurants before we found one that was quiet enough for my husband. The memory issues came later. That was 6 years before he was diagnosed. I have since read that for some people their brain can’t process what their senses are telling it and the person becomes upset and agitated and this can be one of the first signs that there is damage to the brain. He also had problems with his other senses. His senses were fine but his brain didn’t know how to interpret the information it was getting from his senses. He also complained about the smell of food cooking and light coming in through the windows.
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My sister was diagnosed with early onset Alzheimer's/FTD/Primary Progressive Aphasia in August, 2018, but I noticed issues before that. During lockdown I reached out to some of her friends and her ex-boss (who she's good friends with), to see if they noticed anything. Her ex-boss noted issues as far back as 2010-2011 (Peggy would have been around 51 years old). She didn't think Alzheimer's because Peggy was so young. But she described the symptoms as Peggy "struggling", not completing tasks - the kind of thing that @Iris L. described.
After Peggy was diagnosed, I was trying to figure out how long symptoms had been showing, so I asked Peggy herself. She told me the first thing she noticed was her perception of cars moving on the freeway in heavy traffic. When she was stopped and the cars on either side of her were inching forward, she had the perception that she was moving backwards. We eventually pinpointed that down to 2016.
So yeah, not forgetfulness, or repetitive questions, but other things.
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TL;DR I think it's appropriate to start the clock with the onset of symptoms even if you only recognize them in hindsight.
Our situation was the opposite of what @mrahope described. My mom was too close to the situation to see the bigger picture-- the behaviors in the context of each other. She was like the frog in a pot set to boil who didn't realize the water was getting hot. Dad and I didn't get along and initially I suspect he knew he wasn't as sharp as he was and that I would recognize it and take action. I went to visit my parents about 6 times a year so the changes from one visit to the next were obvious to me. When I pointed it out to her, she defended his behavior as "a normal part of the aging process".
2005: I noticed obvious mood changes. He became less empathetic towards mom and could be vindictive. He started to lose his social filter around others.
2006: The conflated memories started around this time with him ascribing my aunt's and sister's bad behavior to me. He also became nastier with me and my family. Around this time, I started to make my visits solo.
2008: He didn't recognize an area in which his family lived and where he'd owned a business for 10 years.
I wasn't able to convince my mom to have him evaluated until fall of 2015 but it didn't happen because she developed an autoimmune liver failure during which dad was unable to be her advocate. Then he had a recurrence of prostate cancer which again derailed. In August 2016 he had an "episode" during a phone call with his brother who insisted he go to ER because he thought he was having a stroke. The resort area ER cleared him for stroke and gave him a referral to a neurologist scheduling 6 months out.
Mom's sister died while they were in the ER. I offered to travel to their home to stay with dad, but she wanted me to drive her because it was 450 miles away. When she returned, dad had had a psychotic episode and trashed the house thinking he killed someone. She drove him north and I met her at the state line to bring him into the ER of a major teaching hospital nearer me. He was admitted and given a provisional dx of dementia- Alzheimer's type. He had an evaluation following discharge with their memory center which gave him a mixed dementia diagnosis-- Alzheimer's and Wernicke-Korsakoff's. The doctor said he also had features of some vascular issues as well.
I feel he was well into the middle stages before he was finally diagnosed and he progressed quickly at that point passing in April 2018.
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I think you can use whatever timeframe feels right. If the symptoms started impacting your life at a given time, that’s a pretty good starting point. Sone of us long distance relatives didn’t realize the full extent of the problem until diagnosis. Only in hindsight could we say certain things that happened must have been dementia.
Are you asking because you want a timeframe to give friends, or for a specific reason? I have thought about this question for a very specific reason: certain materials will give possible future timeframes such as ‘’this happens approximately x years after diagnosis’’. I need to be able to interpret that. Because I don’t know if they mean when symptoms became apparent or when a doctor said you have dementia.
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Yes! The first sign I noticed was that my husband wouldn't pack his suitcase for a business trip. That is something he had done himself for years. I ended up doing it so that he wouldn't be late for the plane. I was irritated at the time, thinking he was being lazy. But this kind of change continued for quite a while until there was no denying what was happening.
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In the early 1990's I used to visit my mother in NY from CA for a week or so. It usually took me one hour to pack my suitcase for a long trip. One time I had to stay up all night trying to pack my suitcase. I didn't attach any specific significance to this difficulty at the time, but now I know it was an example of impaired executive functioning.
Iris
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Iris, Thanks for sharing that. I have learned a lot from your posts.
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im so so sorry for your loss. But knowning whom my wife is and what she may become thinks end is only solution
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I remember the day I knew for sure. We were taking a train ride with some friends and during the half way point the train stopped and we all had lunch. I went back inside the station for a minute and when I came out I saw my wife looking at me from the window of the train. There was something about the way she was looking at me from the window that was so profound I took a picture of her. That was in 2017 and I knew for sure my suspicions were correct.
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My wife started having dizzy spells about 5 years ago, we went to the PC at first and he ordered a bunch of tests. They all came back normal. Fast forward 6 months and things are getting worse. PC orders a MRI and x-ray of her brain. The MRI results come back that there are voids in her brain cavity. So, PC refers my wife to Duke Medical Center. We went there to see a ear doctor, they ran some tests, and came back that there was no problem with her ears. So, the ear doctor refers her to a neurologist at Duke. We go back to Duke to see the neurologist; he looks at her MRI and reads the results from the Audiologist. He says there is no problem.
Fast forward 9 months, my wife is getting worse. So, our PC sends her to Wake Forest. Wake Forest repeated the tests that Duke had done, only they allowed me to observe. The Dr. at Wake didn't like a finding from Duke and proceeded to show me why. He basically explained that my wife's brain was dying and there is nothing they could do.
Is that not the definition of Dementia and Alzheimer's?
My wife has been dealing with this for over 5 years now. Our PC said to me the other day that he had never seen a person digress at the rate she is. He said when he seen her in January and then again in November that her decline was what most people would see in two to three years.
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I’m so so sorry , makes my problems seem like nothing. I know I don’t know exactly what’s ahead , but I feel for all of us. This illness sucks !
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Hi, Interesting... I had a similar situation. We had gotten off of a bus at a rest stop in 2018. I went outside of the rest stop area and saw my husband on the inside looking at with fear in his eyes. It struck me as to why he seemed so terrified. I had no clue back then.
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I was aware of my DW mental decline for some time, but one day (at home) I walked into the room and saw that fear in her eyes when she looked at me. I'll never forget it. Luckily, so far it hasn't happened again in the last couple of years. She MAY not always know who I am, but currently seems to know I am someone to be trusted.
I still don't have a time/date that I can say I finally noticed when this started for her. AND, I've forgotten the date her doctor first said MCI. Guess it really doesn't matter, time just keeps moving on.
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Dear Ragfoot,
I think it is good that we didn't grasp the full extent of what would happen as this disease progressed. I would have been terrified and would not have been able to enjoy the time we have had up until the symptoms progressed.
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My wife tested her cognitive ability in 2016 after getting lost driving in places she has known well. Was diagnosed MCI. Then AD in 2018. I consider the AD diagnosis the starting point for average movement through phases and life expectancy. But it seems the averages are unreliable because everyone’s experience can be different. Unfortunately we cannot predict the pace. I suspect no longer handling ADL is a pretty clear indication that it’s gotten pretty serious. But it seems we won’t really know the end is nearer until there is little or no doubt.
Having this outlet is a big help, though, to compare experiences and find solutions to problems and challenges. So thank you all for such honest sharing.
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My husband was diagnosed A year ago. With Vascular Dementia. I would say I noticed confusion and poor problem solving. A few months before he was diagnosed.
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I am so sorry for your loss.
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To answer the original question I would say that the diagnosis has nothing to do with onset. Onset is the start of something, and many people with dementia never get a diagnosis. That doesn't mean there was no onset. So earliest symptoms would be the onset, in my opinion.
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In 2017, spring, my DA & I had to go to the social security office to change our bank address & I told him ahead of time why he had to go. We were sitting there maybe 15 min & he said “why are we here?” My DA was an engineer (retired in 2003) & had fantastic memory. All the things we did in our past years of marriage he could remember where we went, time of day, & even what the weather was like that day! My long term memory sucks so I would ask him “did I have a good time?” Anyway, I was shocked why he asked me that question. I didn’t notice anything else until November of that year that he was just not remembering things. I said to him he should go see our doctor & he said he’ll wait till next April when we get our physicals. He did pass the cognitive test they give & the doctor said to me let him know if he gets worse & will put him on medication, which he started in August. It’s 6 years now ALZ. Married 55 years, retired 21 years. We had a lot of good years together!
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Worth remembering that the brain damage starts years and years before symptoms become apparent-just like a heart attack is a late manifestation of coronary artery disease. We need tests that can detect the brain changes way before symptoms appear.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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