1. < Caregivers: Dementia

What were the first signs you noticed?

Posted by bclane @bclane, 4 days ago

My husband has vascular dementia as a result of at least 7 TIAs and 1 larger stroke as shown on an MRI. The only one we were aware of was a TIA in 2016. I'm guessing that some or all of the others may have happened in his sleep because there were no obvious signs like there were with the 2016 one.

Anyway, I've been thinking back to things that seemed "off" well before I started suspecting a problem. One thing was that he started mixing up pronouns. He'd refer to a female pet as "he" and vice-versa. He still does and he mostly does it with animals. He'll also tell a male pet that's he's a "good girl" and vice-versa.

When it first happened, it became a joke, but now I wonder if that was one of the first signs that something wasn't functioning the way it should. I'm curious if others can think of things that seemed "off" before the problem became obvious.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

judimahoney | @judimahoney | 1 day ago
In reply to @jehjeh "I guess it's not uncommon for patients to be able to mask their symptoms long enough..." + (show)
@jehjeh

I guess it's not uncommon for patients to be able to mask their symptoms long enough that others can't see how bad things are. My hubby keeps telling doctor's that he's doing much better, whether they ask about his chronic pain, his sleep, etc... actually, everything is much worse but I can't say anything because he gets really angry with me for days after.

It's helpful for me to vent here but I wish there was more help available.

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When things are not normal I write down the incidents in a log, then summarize before we go to the Doc. If your doctor has any background at all with this, they'll know that symptoms can be masked and can rely on you for first hand information. You can hand this summary to a nurse or admin person before the visit, so they have a heads up, or mail to the doctor with explanation before the next visit; just a thought (so spouse is not mad at you).

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2 replies
elm123 | @elm123 | 1 day ago
In reply to @judimahoney "When things are not normal I write down the incidents in a log, then summarize before..." + (show)
@judimahoney

When things are not normal I write down the incidents in a log, then summarize before we go to the Doc. If your doctor has any background at all with this, they'll know that symptoms can be masked and can rely on you for first hand information. You can hand this summary to a nurse or admin person before the visit, so they have a heads up, or mail to the doctor with explanation before the next visit; just a thought (so spouse is not mad at you).

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This is a good idea. I am going to try it.

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billiekip | @billiekip | 1 day ago

Start taking notes. I've written this advice before, but it is important. You can go back and realize things were "off" for a period of time. It helps to keep you on track and not feel like it is you. My husband was an architect and always involved in projects. About 3 years ago, he was going to build a Victorian dollhouse from a kit for our twin granddaughters. He set up the garage and had many of the pieces out and organized. Then he started procrastinating which was very unusual. I realized that the project was way beyond his ability to figure it out. The dollhouse was packed up and moved on to Goodwill.

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jehjeh | @jehjeh | 1 day ago
In reply to @judimahoney "When things are not normal I write down the incidents in a log, then summarize before..." + (show)
@judimahoney

When things are not normal I write down the incidents in a log, then summarize before we go to the Doc. If your doctor has any background at all with this, they'll know that symptoms can be masked and can rely on you for first hand information. You can hand this summary to a nurse or admin person before the visit, so they have a heads up, or mail to the doctor with explanation before the next visit; just a thought (so spouse is not mad at you).

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This is a great idea. I've also filmed him on my phone just to remind myself how bad it can be at times.

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bclane | @bclane | 18 hours ago
In reply to @suegia "I found myself getting really annoyed with his stupidity and his lack of logic. Trying to..." + (show)
@suegia

I found myself getting really annoyed with his stupidity and his lack of logic.
Trying to communicate has become very trying. He asks so many questions that seem rhetorical, but sadly are not. At times he would ask where the frozen food section is in the grocery store that we always go to. He is slow to switch gears His personality quirks somehow disappeared. He just hasn’t been himself. He has his first appointment with a neurologist in 2 weeks. He hasn’t been diagnosed yet. He is definitely off, but he thinks it’s normal.

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I went through that stage where I'd get annoyed and short with my husband. Now, that's not to say, I don't still have episodes of that, but I'm getting much better. I tell myself to follow the old advice of "count to ten" before saying something. And I'm starting to learn that many of the things that were irritating me aren't all that important to begin with.

My husband has always been a pretty easygoing guy and for the most part still is, but he can get stubborn and justifiably angry when I am obviously upset with something he did that he really can't help. I have learned that my tone of voice alone makes a big difference. If my tone makes it clear that I don't like something he did, he gets stubborn, but if I say the same words in a calm tone, he's fine with whatever I said.

What can I say—I'm a work in progress! 🙂

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SusanEllen66 | @SusanEllen66 | 17 hours ago

Alzheimers.gov
https://www.alzheimers.gov › life-with-dementia › resources-caregivers
Resources for Caregivers of People With Alzheimer's Disease

There are so many places online for you to get information. Also, if you watch videos on YouTube, look for the ones from Teepa Snow…

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elm123 | @elm123 | 12 hours ago
In reply to @sillyblone "Hello. I was able to let my husband's neurologist know about his vivid dreams and lack..." + (show)
@sillyblone

Hello. I was able to let my husband's neurologist know about his vivid dreams and lack of REM sleep. I asked about Melatonin. It worked miracles. He also uses c-pap and that helped as well. Everyday is a new issue or another problem . Sometimes it's a lot to deal with..but it all works out in the end! Accusations, Delusional mean comment's. We talk about about it and sometimes he apologizes. My spouse said we had to stop on green lights then turn, forgets where certain physicians are I took the keys and I drive. I would like him to be alive as well as myself. Now he cannot drive for another medical problem. I was relieved. We have been married over 50 plus year's. I want my spouse back..but life does not promise a rose garden. I appreciate all of you, more then you know. Hugs and Thank you! I know I am not alone.

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This sounds just like us - I think I will try to get him to take the melatonin again. I like your positive attitude because sometimes I feel so upset and scared by what is happening to my husband.

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sillyblone | @sillyblone | 11 hours ago

Thank you. I feel that we as caregivers have more to offer than we are given credit for. Unfortunately, we feel defeated and overwhelmed with the illness and tend not to use our voice. Our loved ones have been overwhelmed with hearing news about this disease and sometimes don't know if it matters. But I will always ask and find out if I can help and make a difference for us both! Sometimes speaking up matter's. You are his advocate and you matter too! Hugs to you both!💜

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2me | @2me | 7 hours ago
In reply to @elm123 "IT’s been about 3 years since I first noticed my husband had memory problems because he..." + (show)
@elm123

IT’s been about 3 years since I first noticed my husband had memory problems because he started being unable to drive places he should have known the directions for. Over this time he occasionally told me or other people a few outlandish stories that you knew right away had to be made up. He always forgets where he puts things and then spends hours looking for them. I had a hard time accepting his problem (I still do) because we have been married for 55 years and always depended on each other. Lately he has started accusing me of doing things which I did not do and getting mad at me. After a day or two of this we finally discuss it and he asks for my forgiveness! It’s really hard to deal with. We went to a neurologist and he did blood work and an MRI but said nothing showed up just a short term memory problem.

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I know what you mean…we’ve been married 51. Directions to places he’s always driven seem to be gone, except for a few…and I have to get up to speed on finances, something he’s always handled, since he is the one who’s good at it. And, I’m familiar with the stories he believes to be true, which can’t be. Hugs.

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