Probably not ever going to be officially diagnosed

Posted by lkelley8 @lkelley8, Feb 26 9:15pm

I have a really strong and independent mother was pointedly told me that she is not senile. And yes, senile, is a term that she used when I tried to have a conversation with her about things that I had noticed that were concerning related to her mental health. That was now, about three years ago although I'd seen things several years prior to then. But dad just said - she just needs rest.

In doing some research, I might gather that my mom could be somewhere in the latter early stages or moderate stages of I think Alzheimer's but of course we're just saying dementia. But I know that we will probably never have the opportunity to get her officially tested so that we have an actual diagnosis. She's just not that woman. I fear she will never reveal that there is a problem. I just don't think it will ever happen. More importantly, because of who she is in her independence, her strength, her will and the profession that she retired from... presentation is everything and she's made a career of presenting well and being very articulate so this is really hard. When I say hard, not just for her, but also for us because it's not easy to discern whether or not she even knows that she has dementia or whether that is the dementia itself . To this end, we haven't been able to really have any fruitful conversations about the changes in her mental health. The things that she's forgetting, the concerns that we have with things that have risen that question her safety and that of others. She's functioning fully right now. She still drives. She still cares for herself so at face value, you'd think nothing is wrong. To know her intimately as her daughter and to know her intimately as my dad, her husband, we know that something's off and something's not quite right.

Last year was a tough year and we definitely recognized a change in her mental health such that it declined and we felt this shift. But we really believe that this has everything to do with very significant events that might've been somewhat traumatic for her. We are in Florida so during the fall we always encounter hurricane season and last year was a pretty bad one and a pretty scary one. And we had a lot of hurricanes and the stress of the unknown with these storms almost back to back and I think that had everything to do with some of her decline. We also experienced a lot of the highs and lows with the election last year which I think for everybody was just dramatic no matter which side of the aisle you were on. Then more recently, the man who's somewhat responsible for keeping a roof over her head, not her biological father, but a father figure took ill and was in the hospital for at least a couple weeks. He has since bounced back, but I think that window of time was very hard for her even with dementia. She was exhausted from staying all day and night at the hospital. Somedays she was out of it becuase she was so mentally tapped out and was not sleeping. I'm not sure if she cried. I'm also not sure how she was affected emotionally, but I do know that she was impacted by it and I do know that she was not sleeping well if at all, although that's not really anything new.

If you have any advice on this or anything, please share I'm starting this journey as a daughter. I am an only child and I am quietly terrified of what's to come - just the not knowing...

I just convinced my dad just in the last few years that something was wrong. He was in denial, I think. She just needs to rest - he's say and then she'll get better. I think it was all apparent, at least to me, from the time she retired - that was 11 year ago.

share what you can I'm open thanks...

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

@trishaanderson

What topics on You Tube interest him?

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He enjoys anything that has to do with hunting or fishing, travel, and farming (he grew up on a farm), cooking, and he enjoys listening music clips. Sometimes he will just go through and stop on whatever may catch his interest.

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@keithcarey84

I am a Care Giver for my wife; 3 months of depression - i assumed ... 6 more months of NO motivation ... we used to go to 3 different places to eat out during the month.

There WAS no real Summer. Things we did special for Fall; nothing!

Winter? i purchased a tree with lights the 2nd week of December...never got decorated.

Yes....there ARE no
meaningful conversations. I need a female to talk to - asking for trouble!

She used to constantly criticize. Now she is a Type B and soft spoken. ?????
Her brain scan (after waiting 5 months) came back as MILD !!!!

Frequent UTIs indicates something else... the Immune System has weakened. Not enough white blood cells to fight the infection - NEXT UP TO BAT

i feel like Linda's General Contractor with an array of doctors to "network" with each other!!!! Why IS that?

Anyone experience this in trying to have a true diagnosis of all the parts that make up Linda.

Keith

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I identify with everything you're saying. All the shared activities have pretty much gone by the wayside. I don't even want to go anywhere with my husband because it's too embarrassing. He talks to everyone he meets and tells the same stories over and over, often to people he's told before but forgotten. There's a coffee shop he loves to go to and so far the people there seem to put up with him. It's at the edge of the university campus where my husband used to work and he sees lots of students. He loves talking to them. He used to go to our local zoo and loved that so much but he was barred and told never to return. Too many magic tricks for too many children. He tells me the same things and, like you want to talk to a women, I want to talk to a man. My brother-in-law was here for a visit a couple of weeks ago and it wonderful talking to a man who could carry on a conversation. I know you see the danger of finding a woman to talk to, but I'll share something here I would never share with my husband. I've reconnected with an old college boyfriend and we email frequently. We live on opposite sides of the country so there's really no danger, but the support I get from him makes all the difference. I can tell him what I'm going through and discuss other things too. A virtual conversation. I can't do this with my husband if I feel isolated. I don't want to hurt my husband and never would, but I can't spend my last years (I'm 79 with a recently diagnosed aortic aneurysm) in acute loneliness.
The only diagnosed we have so far is: dementia. Next week we see a neurologist, but even with a clear diagnosis I'm not sure that would make a difference. We can't stop what's happening. I do want to know what we're dealing with but I'm not looking to the medical industry for real help. I think hiring a nice person to clean my house would be more useful.

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@labrown

I keep everything on my phone calendar too, but he is not able to maneuver around much on his phone anymore. Just can’t remember how. He can answer it…when he will, he usually ignores it because he doesn’t want try to have a conversation on it. He can call me or his brothers and can open some apps he enjoys like You Tube. I am continuously showing him how to search for topics that might interest him. It’s just so hard for him to be living in a tech world and not able to maneuver about in it. .

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My wife is on her phone for "hours".

She watches Reels and general videos. Incommunicado!

She is "phased out" of her surroundings even. I can say something, but she is not aware.

Her immune system is the last frontier. Brain scan came back "mild".

She has frequent UTI issues. Supposed to monitor her bedding and make certain she showers regularly.

UTI issues cause a decrease in white blood cells. And, CONFUSION.

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@keithcarey84

My wife is on her phone for "hours".

She watches Reels and general videos. Incommunicado!

She is "phased out" of her surroundings even. I can say something, but she is not aware.

Her immune system is the last frontier. Brain scan came back "mild".

She has frequent UTI issues. Supposed to monitor her bedding and make certain she showers regularly.

UTI issues cause a decrease in white blood cells. And, CONFUSION.

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@keithcarey84, I'm sorry to hear that your wife has checked out. UTIs can cause incredible frightening side effects like confusion, halluncintations and dementia-like symptoms. Have they been able to get the infection under control? Has she also been diagnosed with mild cognitive impairment?

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A follow up to my earlier post: We saw the neurologist (P.A. actually) and my husband had a through exam that lasted about 1/1/2 hrs. That was helpful, to be sure, and what was also of great benefit was the large packet of information I was given. In simple terms, the stages, prognosis, and methods of dealing with significant changes were spelled out in ways that were both helpful and encouraging. Besides this group, the neurologist provided more information and support than I've found anywhere else. Friends are wonderful and supportive but they know even less about this condition than I do. I depend on them but I need professional help too and now I feel I have it. When in doubt, consult a sympathetic, competent neurologist. My understanding is that they're not all the same. If you don't find what suits your needs, seek a second opinion and make a change if you have to. Our neurologist brought up second opinions and had absolutely no problem with it.

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@colleenyoung

@keithcarey84, I'm sorry to hear that your wife has checked out. UTIs can cause incredible frightening side effects like confusion, halluncintations and dementia-like symptoms. Have they been able to get the infection under control? Has she also been diagnosed with mild cognitive impairment?

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i sent you a huge reply that did not "take". have 2 questions about my experience with Linda so far.

I will retype later today - Sunday

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@pamela78

A follow up to my earlier post: We saw the neurologist (P.A. actually) and my husband had a through exam that lasted about 1/1/2 hrs. That was helpful, to be sure, and what was also of great benefit was the large packet of information I was given. In simple terms, the stages, prognosis, and methods of dealing with significant changes were spelled out in ways that were both helpful and encouraging. Besides this group, the neurologist provided more information and support than I've found anywhere else. Friends are wonderful and supportive but they know even less about this condition than I do. I depend on them but I need professional help too and now I feel I have it. When in doubt, consult a sympathetic, competent neurologist. My understanding is that they're not all the same. If you don't find what suits your needs, seek a second opinion and make a change if you have to. Our neurologist brought up second opinions and had absolutely no problem with it.

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That’s incredible to have consult for dementia and walk out positive with a renewed perspective! He or she must be very special indeed. Knowledge is a valuable thing. Until I encountered this with my family member, I had no clue what the symptoms were.

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@celia16

That’s incredible to have consult for dementia and walk out positive with a renewed perspective! He or she must be very special indeed. Knowledge is a valuable thing. Until I encountered this with my family member, I had no clue what the symptoms were.

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I've known something was wrong for up to four years. Hubs had a dementia diagnosis from our primary physician over a year ago but the word Alzheimer's hadn't been used before. It was a relief, if you can call it that, to have the diagnosis confirmed and the neurologist and social worker who was in on the consult were extremely helpful. I feel better because I have a better idea of what's to come and how to plan for it. My main difficulty now is getting my husband to accept that he has this disease. He doesn't want to have it. Who would? But I'd like him to be part of our planning for as long as he is able.

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@pamela78

I've known something was wrong for up to four years. Hubs had a dementia diagnosis from our primary physician over a year ago but the word Alzheimer's hadn't been used before. It was a relief, if you can call it that, to have the diagnosis confirmed and the neurologist and social worker who was in on the consult were extremely helpful. I feel better because I have a better idea of what's to come and how to plan for it. My main difficulty now is getting my husband to accept that he has this disease. He doesn't want to have it. Who would? But I'd like him to be part of our planning for as long as he is able.

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I understand your concerns. I hope your husband is able to do that. I will share that when my cousin would agree to something….the next day she was likely to deny she did it. She’d be adamant she never promised to enter assisted living. Trusting them to get on board and share the planning and processing just isn’t anything I’ve encountered with my family members who have had dementia. It’s been denial and resistance. I hope your experience is different

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The changes you describe are strongly suggestive of some form of dementia, and/or mental illness. Highly educated professional people can be difficult to diagnose because they are able to compensate for some cognitive losses better than the average person, or to just cover the impairment up. It would be helpful to notify her doctor privately of your concerns, with specific examples of changes, that might allow him to order some targeted screening tests such as blood and urine tests and perhaps an MRI. She might or might not accept his recommendation of neuropshychological testing, which could provide much more information. Are you observing significant short term memory lapses, changes in her language function, repeating herself? Has she gotten lost while driving or had minor accidents? Is she able to manage finances (keep up with bank balances, pay bills on time)? Or is her husband managing all the finances? Does she do grocery shopping and make appropriate purches? Is she able to follow a recipe or cook a meal? Some patients with dementia are aware of their cognitive loss and fret about it. Others are either unaware or are in total denial, despite the evidence. Without a definitive diagnosis it is difficult (impossible) to make decisions. It cerainly would be beneficial to have general power of attorney, wills, living wills and healthcare powers of attorney in place for her and your dad if at all possible. It is a nightmare to have to go through courts to get things done. Good luck.

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