Denial is not just for Egyptians
Newbie here. I have so many questions my mind is swirling. My husband has MCI and refuses to get evaluated by a neurologist. He gets angry if I even mention it. How am I supposed to just stand by and watch him get worse (which he is)!
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murkywaters, there may not be help, anyway. If he has regular medical care the primary can help by adding testing that would just seem routine. You might be able to bully your husband (for his own good and at the expense of your relationship) but you probably can't.
You can attend to the nutritional deficiencies that we all hope will be the answer, but usually aren't. Vitamin B12, Iron, and now https://scitechdaily.com/scientists-discover-simple-supplement-that-could-help-slow-alzheimers.
It could be important to understand if he is having TIAs.
You are swimming in the murky river . Bless your struggle.
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4 ReactionsWe welcome you with ears to listen and thoughts to hug you.
Keep reading...read all the comments on here relating to dementia and caregiving. Look up Cleveland Clinic (dementia), Alzheimers Assn has a world of info for every cognitive problem, National Institute on Aging, Dementia Society of America, & for sure, download the My Alz Journey app. and look for caregiver support groups in your area, maybe stop at your local hospital to see if they can guide you (social services or outreach programs.
It was really difficult to get my husband to go to a neurologist. What I did, for myself, as I was trying to figure out the personality changes that I was noticing, (and this is over several months), I would just type into google, long sentences of an action or behavior that I witnessed from him and quite often I got specific information on what I had witnessed. I hope that makes sense.
I would often print or email to myself, the whole batch of information to look at over and over. in doing that, I had a better idea of what I could be dealing with. So I slowly started bringing up little things that he was doing that I was concerned with, things that could be signs of something wrong. I finally took steps to find a neurologist and presented him with the fact that I feel he needs to see this neurologist to address some of the forgetfulness (or whichever things you can bring up) because there could be a deficiency or medicinal interaction that is causing changes and it's just better to be safe and look into it sooner than later.
It's been almost a year since our first visit to a neurologist. I didn't like that first Dr., so we kept seeing his NP (who was a little more attentive than him) while I kept digging. We live in southern CA, so someone mentioned UCLA & USC to look to for help. I called UCLA Alzheimer & Dementia program, got papers to fill out and got on a waitlist to get in. He finally saw a NP there in Aug. for about 1 1/2 hours, then a neurologist from UCLA in Sept for about 2 hours.
My H still doesn't have a formal diagnosis, and he is still very self sufficient. But he gets confused about circumstances, following story plots, things on his phone a little. I can't talk to him about some things that need a decision because he isn't always rational. I have to pick and choose what information I include him on. Yes, it sucks, but, oh well.
I'm sorry about the long ramble, but if I can help someone navigate this more easily than I have been this past year, then it's worth it.
God bless.
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13 ReactionsHello and welcome.
Any question you have type in a key word on the Caregiver Dementia main page, and it will bring up any discussion thread that may interest you.
I found keeping anecdotal notes helps to record my husband's 'off' behavior. I summarize them annually for our trip to Neuro Doc.
Since your husband is not cooperating you may just have to focus on you: educating yourself, checking into local respite care locations when you need You time, setting up your home to facilitate his new normal, etc.
Sometimes I would just have to get to the meltdown stage before my husband would listen to me (e.g., when it was time for him to stop driving; when I had to take his debit/credit cards away to protect us from his misuse).
We'll be here for you. Time to build your support team. 🫂
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6 Reactions@lkbous Thank you for your response. Did you encounter a lot of anger? That is what I am currently being subjected to.
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5 ReactionsMy husband also was not interested in seeing anyone for testing/diagnosis as he didn't think anything was wrong and that he just didn't pay attention. This of course could be true but is also an excuse. Periodically I would try to have a conversation with him about what I was seeing. After about a year, I said well if you go and things are fine then I'll stop bothering you about this and you can say I'm the one with the problem. I also said I'm doing this as I care about you and would rather be ahead of the curve rather than wait for something major to happen and then nothing can be done. He did agree to testing and was diagnosed with MCI.
I also try to remember it must be very scary to realize you aren't remembering things and that things aren't quite right. It took about 5 months after the diagnosis until my husband would admit that he has "memory" issues.
Remember to breathe and be kind to yourself.
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5 Reactions@murkywaters not too bad. Once in a while there is out of character anger, tho. He gets fixated on things, and one thing that brought out his anger for a long time before his MCI was discovered was my own therapy. He would badger the holy heck out of me over it every time. We have fought over it so much and I’ve brought it up over and over during cognitive appointments that he has let it be. The other day, visiting his family for Thanksgiving, he took a call in the middle of a visit, speaking loudly, I tried to get his attention to go in the other room, he stormed out, then came back afterwards and pointedly ask me, in front of everyone, angrily, what he did wrong? So out of character and sad. I was really hurt. So just that kind of stuff. It’s so hard to get past strange new behaviors, isn’t it?
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7 Reactions@cakbob My husband finally went just to prove to me that he doesn’t have anything wrong. It still took some time and more appointments for him to admit that he senses the issues. Yes, he admits that it’s scary and he wishes he didn’t know. I still don’t know how that would play out, but that ship has sailed. You know it IS a thing for them to try to turn the tables and say it’s you with the problem, he has told me that many times. We have these weird circle conversations that can go on for several minutes, well I thought, well you said, on and on until I say ‘ ok, I’m done with this conversation’ and he says we’re talking about two different things. No kidding. It happens when he doesn’t understand something the way I’ve presented it, and he gets frustrated over it.
Oh, what a tangled web…literally and figuratively.
Trying to be strong is all we can do, but it’s still an unfair ask in the scheme of things.
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8 Reactions@lkbous I think I need to find a therapist. Any suggestions?
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3 Reactions@cakbob Thank you. I am thinking I need to find a therapist for support.
@lkbous Does his family know of his diagnosis?
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