questioning my experience with DH

pmla · June 28

MY DH has recently been diagnosed with MCI and testing shows due to alzheimers. Our very good and supportive friends don't see symptoms i see causing me to question what i am seeing.

H1235 · June 28

Welcome. My mom is a very solid stage 4, but her friend doesn’t recognize that anything is wrong. This is pretty common. A person with dementia can showtime. Hold it together for a short visit. Mom got a new toothbrush every 6 months while she was in Al. When she moved it I found she had not switched out her toothbrush in a very long time. This kind of thing just doesn’t come up in a conversation. For some reason mom never talked about how she was perfectly fine to mow her own lawn, or how she was going to use the power washer to clean lawn furniture, when she was around (she uses a cane). I think anosognosia also give the person with dementia a confidence in themselves that is misleading. Trust your gut. You know him best.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

annie51 · June 28

I think this is very very common. I saw symptoms with my DH way before anyone else would have noticed. You just know in your gut as @H1235 said because you’re living the details day after day - he had trouble telling time, he couldn’t remember our zip code, then our address, repeated questions. These are things that friends or family would not see unless they were living with him. I think someone that has been through the dementia journey as a caregiver might be able to spot it, but the average person may not be aware. After a few years in, I realized that some of his behaviors that I did not attribute to his dementia were probably, in fact, manifestations that I only learned later could have been part of the disease.
We’re here for you with any questions, big or small, as you go through this journey.

harshedbuzz · June 28

@pmla said:

Our very good and supportive friends don't see symptoms i see causing me to question what i am seeing.

It's showtime!

PWD are able to seemingly pull themselves together and present as being much less impaired than they really are. This is temporary; the performance requires considerable emotional reserves, so it is employed judiciously. Around a spouse or other primary caregiver, the facade is dropped because they can't maintain it.

This dementia-related behavior can be crazy-making for spouses and adult child caregivers and even a little dangerous for the PWD. Sometimes a PWD who needs psychoactive meds to manage anxiety and be safe at home will showtime for a doctor giving the impression that the spouse is lying or drug seeking. Sometimes it strains family relationships when adult children will fight over safety issues like driving or being unsupervised because the PWD showtimes for the sibling(s) who aren't their primary caregiver.

Anosognosia (see H1235's post) and sundowning can also play a role in this. Many PWD operate at a higher capacity level earlier in the day. In the later afternoon or evening sundowning may set in along with more intense symptoms and behaviors. This means the doctor who saw him this morning or the friends who dropped by after lunch aren't getting the full picture.

My own dad could showtime like an Oscar-nominee. At the time, they lived a distance away and visits meant an overnight. Consequently, I did see dad through the 24-hour day. Early on, before diagnosis he could showtime for about a day before melting down and making the atmosphere so unpleasant I'd leave earlier than planned. As time went on, the amount of time lessened until it was just long enough to get through an appointment with a doctor before dropping back to his current baseline. I didn't need dad's brother or friends to confirm they saw what I did, but for his doctor I would make short videos to share via the portal so he could see what we saw at home.

Trust yourself. As the person who lives with DH, assuming you aren't delusional or in denial, you are the expert on how he's doing. That said, it would be nice to get some support around what you're seeing.

HB

notequipped · June 28

I’m going to offer a slightly different take. I think that sometimes it’s just the nature of the interaction. My Mom is unable to follow basic direction/instructions, address an envelope, do any math, reliably use a calendar, figure out how to get into her car with a dead battery with both the key and key fob in hand, reliably use the TV remote controls, etc. She literally did not recognize when my Dad experienced a medical emergency. Didn’t let anyone know. Didn’t call 911. Her neuro psych evaluation was much shorter than anticipated because she didn’t understand what was being asked of her in some instances. She forgot that she moved what most people would consider to be a large sum of money. She’s pleasant enough and quite capable of carrying on a conversation though. The number of people who still think that she should be able to live at home independently and/or drive a car based solely on that ability is nothing short of shocking. Your day to day experience with him is very different than a social interaction.

blacksparky · June 28

I’ll keep this short. Until your family and close friends start spending 24/7 care for you DH, go with your gut feelings. No need to question your thoughts, you are probably spot on. Take care.

CharlieS · June 28

I can't really add any more to what's already been said. I'm a few years in now, and at the start, nobody but me could see the differences in his behavior. Now it's loud and clear. Hang in there, and like blacksparky said, go with your gut. You know your DH better than anyone else.

MaryMN · June 28

You were smart enough to recognize that what you were seeing wasn't normal and it sounds like testing confirmed your suspicions. Receiving a diagnosis of Alzheimer's that turns out to be incorrect is exceedingly rare. You will learn a lot by following this site but keep trusting your instincts.

MargeSimpson · June 28

I know exactly what you mean!! I've questioned myself even without input from friends and family, complicated by the fact he has always had severe OCD and has always thought differently from most people. So when he does something a little odd, I ask myself: is this the Alzheimer's or his usual idiosyncrasies 🤔? And does it even matter? 😄. When I tell someone he is in early stage or mild dementia stage, I also tell them that people who know him well do not see a difference. But I do, because I live with him.

Vitruvius · June 28

What you're experiencing is pretty much universal for caregivers during the early stages of their LO's dementia journey. I don't know why it is that people who have even a reasonable amount of contact with a early stage PWD can't accept that they are seeing some degree of cognitive decline. To some extent I'm sure it is, as other's have noted, the PWD's ability to showtime, but maybe it's also that people don't want to think poorly about a relative or good friend. I think adult children don't want to really accept that their loving parents can be succumbing to an irreversible decline, they want them to stay as they remember them.

In my many years on this forum no one has ever come back and said "sorry I was wrong, turns out I was imagining it, my LO is actual just slowing down."

brupt30 · June 28

I recognized a few years ago that something was going on…my DH had always handled his own medical appointments, etc., but I decided to take over and join him for his annual physical that year. His PCP at the time simply laughed off my concerns and did not take me seriously until I insisted that he give DH a "mini-mental" cognitive test, which he failed completely. Since then we have changed doctors and seem to have much better care, but I still face specialists (eye doctor, podiatrist, etc.) who seem incredulous since he showtimes so well. I took him to the ER last weekend to examine his thumb - he was in extreme pain and we needed to make sure that it wasn't broken. I had a very difficult time persuading them that I needed to accompany him. They wanted me to wait in the waiting area, but my DH really wasn't able to answer their questions and definitely would not have been able to pay the insurance copay that they asked for in the exam room!! I argued with the front desk until they let me go back with him, but I would have been called back anyway once they saw past his highly competent persona!! I do sometimes question my own sanity though since he goes through extremely lucid phases; makes me sometimes feel gaslit. (thumb is fine by the way 🤔)

howhale · June 29

My DW was well into her progression before most family ever believed my reports of her condition. That is just our life as the primary care giver. My DW was great at showboating for short periods which usually encompassed their visit time so that is what they saw. As much as I tried to get them to sign on here and just read to learn, they never did. She was well down the road of the disease when she could no longer showboat and they saw want was really behind the curtain. It was only then that they accepted the truth. You see it all. No one else does. Trust what you see and do not be influenced by those who love your DH but are not privy to life behind the curtain.

questioning my experience with DH

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