forgetting how to use electronics in staging
I feel really dumb asking this, but this is my first rodeo with ALZ… A couple of weeks ago DH was standing in front of the microwave punching a lot of buttons and when I asked him if he needed help, he said that he forgot how to use it. Since then, no problem. Yesterday, he forgot that his IPad has a volume button. He has a lot of other symptoms as well and I had put him in a definite Stage 3, but the microwave business seemed to me to indicate that he is moving up into dementia.
My real question: are these just one offs or are they indications of further decline? Part of my question comes from the fact that I make all his medical decisions as per his decision when he was diagnosed and I know that he wants nothing done that will prolong his life with dementia. And, the other part of my question comes from my questioning my own judgement in all this. His being in and out of normal just makes me feel like I am crazy.
Comments
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A PWD can show clues of 2 or 3 different stages at different times of the day. In my experience, electronics issues came very early, even before diagnosis. The more tired they are the lower functioning they are. As the day wears on, you may see sundowning or complete inability to operate things like a cell phone, remote, microwave. Progression is not a straight downward line. I think of it like a feather dropped from a great height, it heads down for a bit, gets caught in a gust of wind and travels upward, then down again slowly. That happens daily.
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@Maru
A PWD can straddle stages day-to-day or even depending on the time of day. Some liken it to an old string of Christmas lights with bad wiring; some days for some reason the ends connect if held just so but otherwise, the lights stay out.
Skills/knowledge are lost in a LIFO manner, so using technology he's used a lot and for a long time will stick around longer than newer tech. Upgrades or replacements can undermine this kind of muscle memory, too.3 -
I love your simile of the feather. Very true.🤔
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What they said. I've long thought that the wiring analogy was a good one.
Also, I always thought of these "one offs" as harbingers - bad little previews of things to come. Forgetting how to use a microwave might be a one off today, but an everyday occurrence in three months. Very early on my sister forgot how to open the refrigerator door. Freaked my brother right out. Then there were no mishaps with the refrigerator for the next year and a half.
Like your DH, my sister also forgot about the volume controls on her ear buds and was convinced the buds were broken. They weren't. Electronics quickly became the bane of her existence - and mine.
And note - your judgement is probably just fine, and you're not crazy. I totally get what you mean though.
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My experience in going through the stages with DW was that today's occasional struggle or mishap will become tomorrow's limitation. Looking back, I was given clues as to what skills are going to be lost next. Early on, I would fight it and try to "teach" her how to use things. There was sometimes temporary success, but eventually that approach just resulted in frustration and disappointment. Later, as I saw her struggling with something, I used that as an opportunity to get out in front of it and start adjusting for the loss of that skill.
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you are not crazy for the reasons listed above. Things like appliances, phones, computers. TV remotes at first are sporadic then soon they can’t use them at all. I would fix the stove and microwave so he can’t use it without you there watching. He could start a fire in his current condition. Many caregivers have had that happen.
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You mentioned medical decisions. Does he have a living will. That would lay his wishes out in a legal way so there is no question what he would want. In and out of normal is a perfect description. I think there are times that we all question our sanity when dealing with dementia. You’re not alone there.
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if you want to determine what stage he is in I would say ask his neurologist. I have AD symptoms since 2020 but not diagnosed with Alzheimer’s until January 2026. Figuring out a stage is difficult even for a trained neurologist. I asked and was told I have most of the clinical symptoms of Stage 1 of 3 with a few symptoms in Stage 2, and one symptom in stage 3. I am on Donepezal so I cannot be given the blood test or spinal again because the Donepezal may hide the actual progression of AD. I believe the only way to know the actual progression is how much of my brain has shrinkage and beta amyloid plaques. Annual Brain MRI should show progressive shrinkages and PETs should show how much and all the parts of the brain covered with beta amyloid plaques and pTau tangles. Medicare will pay for the Annual MRIs to monitor the brain shrinkage of dementia patients, but the cost of the PETs and the types of PETs may cause a denial. My feelings are what does it matter, the doctor should know. I was told to keep a diary along with a pocket planner with monthly calendar since I forget things as soon as I am told something, some caretakers do the same so they can learn. Takes a lot of time most folks care, but, not that much, kind of a saying I had for years. It is what it is. I pretty much stay in my room most of the day watching TV, on my computer using computer skills I struggle with, and eventually fall asleep. I only go out to doctor appointments and to the market once a week at a time when store is not crowded. I go to a gym 3 times a week, but can only exercise on recumbent bike because of damage to my muscles from Polymyositis, Dermatomyositis, and Secondary Sjogren’s since 2007. I have an above ground pool I’m my backyard between 4 and 5 pm, caught hell because I took my trunks off to dry myself off on the pool deck and a neighbor saw me as well as my wife who told me that was inappropriate behavior. I have trouble figuring out the microwave too even though I did not have problems years ago. I have problems operating my cell phone and the remote controls to my TV and Converter Box and setting up my printer with my Laptop which I have no problem with because I use it everyday. I can only stay awake about 60 minutes watching TV. I am on CPAP and sometimes forget to shut it off. I sometimes leave the water on filling up my bathtub and my outside pool if I leave the area. I have burned my feet getting in the bathtub and did not realize it until I tried to sit down.
All the above and I retired as an engineering manager and engineer with a total of 44 years experience retiring at ag 66+. I would have stayed until age 70, but I was experiencing symptoms of AD like having senior moments giving presentations and speeches in front of higher level management when I would cover it up with humorous stories. COVID came at a good time for me because I was sent home to do Telework because of my autoimmune diseases and being immune suppressed so I retired from home a month after my 66th birthday and was tested by my PCP who Diagnosed me with MCI, he did not think to send me to a neurologist nor did I pressure him for fear they would take away my keys. It was not until recently that the Lumipulse Beta Amyloid 1-42 and pTau 217 blood test for Alzheimer’s was FDA approved and Medicare paid for the test. So I was referred to the local Neurologist specializing in dementia and AD. After all his testing I was diagnosed and put on Donepezal and an antidepressant abnd anxiety medication. He sees me every 90 days and so far I can drive.
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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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