How long was it for you from the time your primary care doctor suspected dementia until a diagnosis was confirmed?

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How long was it for you from the time your primary care doctor suspected dementia until a diagnosis was confirmed?

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I knew my husband was having worsening focus, short term memory and comprehension issues, plus "nastiness" and combatitiveness. It was "the lights are on but no one's home." The day before his routine follow up appointment for cholesterol, (and he had forgotten to get pre-visit bloodwork and had forgotted the actual doctor appt. until they called to remind him), I called the doctor office and told them what was going on and asked that the doctor address it at the appointment the next day. I was shocked when the doctor gave my husband some simple tests...and he failed enough to have the doctor refer him to a neurologist and order bloodwork. My husband could not spell "world" backwards (and became agitated at the request to do so), could not count backward from 100 by 3's (got stuck at 91 and blanked out after that - and needed help from the doc to even get started at 100) and could not touch his thumbs to fingers, even when the doc demostrated what he needed to do. So now I am freaked out. And the waiting is killing me. Bloodwork is in 2 days. Neurologist has not called with appointment yet. My husband thinks nothing is wrong with him, or he may just "snap out of it" if there is an issue. I do understand that this may NOT be dementia but the not knowing for sure is stressing me out. My daughter is getting married here in June and I hope to have answers by then? I am not telling any family about this so as not to disrupt the happy nuptials and the "fun" of the wedding, so I am on my own for now. Also, my husband is the sole caregiver for his 92 year old mother, who lives in a retirement apartment 45 minutes from us. His dad died in December and his only brother died in 2014. So much to consider and deal with if the diagnosis is positive.

Alzheimer's & Dementia Diagnostic Criteria Signs of Dementia

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Being diagnosed helps to at least know what is happening but if it is dementia there is nothing they do to stop it. Meds may help symptoms but not the dementia. Have as much love, understanding and compassion as you can muster. Do not argue or reason with them. They cannot and it will only make them worse.

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Monca: You're very welcome. There actually does exist a test - when a person turns Medicare eligible (generally on or about 65 years of age, but it does vary by a year or so), they are given a VERY simple test, e.g. "What year is it?." "Who is the President of the U.S.?'' et al. Those are waaaaay too generalized. My gosh, my sister in law could have killed herself and her two young grandchildren - only by the grace of God did people assist her by honking and getting her turned around. I'm testing my memory all the time by doing DIFFICULT online games to keep my mind sharp as I'm 72 years old.
With Alzheimer's, early diagnosis does not really a bearing on it - UNLESS an Einstein can come up with a cure, you're doomed, sadly.

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Any updates from the blood work? Hope you're doing ok.

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Good morning! No blood work results yet. No word from the neurologist. I think this is going to be a drawn out situation. My daughter lives in Los Angeles and the time between her initial doctor appointment, the blood work results and seeing a neuro was only a couple of weeks! (Feet numbness and tingling.) And they are going all out to get her a diagnosis. I should see the blood work results in his portal today or tomorrow but his doctor is out of town so it will be next week before he gets back to us. Thank you do much for checking in with me!!

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Monica, so sorry you have this on your shoulders. I know exactly what you are going thru. My husband had become so verbally and physically abusive over the past few years I was wondering why I was still here. Then I realized he wasn't just abusive. He had began to forget things, couldn't remember appts, meds, dates, etc. My DIL is a nurse and had just gone thru this with her mom and I was going thru something similar with my mom. They did as my husband, denied everything! He doesn't want to talk about it, nothing is wrong with him, etc. He has gotten mean but then he sometimes becomes himself for a short time. He is angry because he can't work any longer. My son helped me get him to go to the a psychologist after the pcp gave him a few tests. She told him he had stress, severe depression and onset dementia. He told the family she said he was just a bit stressed. He is on 4 medications for the stress, depression and dementia. The last one prescribed was Memantine. I have to remind him to take the meds. He had surgery last year and went down hill after that. I had surgery in late December and now have some short term memory issues and when I am tired, I struggle for the right words. So, I had the dr. test me. Said all was age related short term memory. A relief.
Some things I am learning is keep snacks and a lot of them. He is constantly looking for food. I had to put a tile on his keys because he kept losing them. We have found old mowers, tillers, etc. for him to tinker with in his shed. But he has lost all interest in doing things and sits and stares at the wall and smokes. He is also beginning to put off things such as bathing, eating regular meals, doing his nightly chore of taking out the trash. Said he just wants to sit and do nothing.
I wish you the very best. We are here for you. May your daughter have a beautiful wedding and you be as happy as she is.

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My husband says he can’t eat and will sit and struggle through a very simple meal at dinner BUT is constantly searching for rubbish to eat. Ice cream custard lollies chocolates biscuits cake and custard tarts and it is eaten in an instant looks through all cupboards

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This is my SIL's story. She didn't know she had Alzheimer's! One of her three sisters picked up on it! She had "the talk" and then it was confirmed via an M.R.I. at a neurologist. Now all the while my SIL had had signs - 4 years prior driving in her own neighborhood with 2 of her grandchildren in the back seat of her car & entered a one way highway - clearly marked in bold red "DO NOT ENTER." Managed to somehow escape without injury. Other signs, too - overdraft notices from her bank, doing $500 worth of damage while driving, getting lost going to her grocery store 2 miles from her home. BUT !! - SHE NEVER SAID A THING!!

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This is exactly why I am starting to think that primary care doctors should start to give a quick in-house cognitive test to everyone over a certain age...probably 60. It can become a dangerous situation for someone who does not realize they have an issue to be out and about driving. I think what happened either your SIL happens more than we realize. Early diagnosis is key. Thank you for sharing your own experience.

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For my Father-in-law, I think some family members suspected something was amiss in November. I noticed in February. It has gotten much worse since then. His family convinced him to see his doctor in March and his MRI is tomorrow, memory test is next week. His appointment to discuss results is May 30. He is 83. I'm sure access to specialists depends on where someone lives, like distance from a major city. I hope you get answers soon, waiting is so hard.

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Hi Monica. So sorry you and your husband are facing these issues and I hope you get some answers soon. I would get on the phone and be that squeaky wheel to get that neuro appt soon. My mom had quite a wait for her neuro consult but in the interim based on what her pcp saw and what info I relayed, her pcp ordered some testing. Carotid ct and mri. PCP was also able to tell us what the testing revealed all before we met with neuro. Best of luck and know you are not alone in your concerns and fears. I am full of fear about the future but do find this forum very helpful.

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The devil is in the details. Ever heard of caregiver burn out?

"Also, my husband is the sole caregiver for his 92 year old mother, who lives in a retirement apartment 45 minutes from us. His dad died in December and his only brother died in 2014."

How is your husband's mother?

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Hs mother is in great shape, still drives, independent, even helps out at the retirement community. She is very active. Still has "all her wits about her." The only thing my husband really has to do for her at this point is make sure her finances are okay. He did do everything to settle his dad's affairs after he died, but that was about 2 months of paperwork. I DO know, though, that at some point she will start showing signs of decline and he will have to be there for her then. But now...just about nothing needs to be done for herm

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I started noticing that something was "off" with my FIL almost 4 years ago, and the neurologist only got around to testing him a couple of months ago. He did poorly and was told that it was mild dementia. My FIL also suffers from severe depression and high anxiety and refuses to take the sertraline and lorazepam and so we all seem to suffer right along with him.

Your husband's anger and mood swings sound like frontotemporal dementia (FTD). FTD is the most common form of dementia for people under age 60, and so your husband's decline may have started when he was still young and strong enough to hide it.

There is never a convenient time for a bad diagnosis. I'm a "hope for the best but prepare for the worst" sort of gal, and I urge you to use some of this time while you wait for his diagnosis to start getting important things in order like durable power of attorneys, living wills, wills, finances, etc.

Your daughter's marriage is a once in a lifetime event, and I hope that you will be able to be fully present for her and your new son-in-law, and participate in all of the joy that comes along with celebrating their joyous union.

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Lol...that is my motto..."hope for the best but prepare for the worst!" Also...in the spirit of Gilda Radnor..."It's always something!" We do have all our paperwork in order (great advice BTW!) Plus....I AM over-the-top excited about the wedding and "all in" with the preparations!

I will admit to all of you that have replied today...just having people who can understand and who will listen and give me advice has totally turned my head around on this. It has made a HUGE difference and my anxiety levels have plummeted today, reading all your responses. From the bottom of my heart....thank you all.

Also...my husband does not want to think about nor discuss what is happening to him right now. And he made it clear we were not going to discuss it with any family members until we have a firm diagnosis. I will respect that wish for now. I think he is scared but will not admit it, but he makes offhand comments that indicate he is worried.

I will research FTD because what you describe sounds very plausible.

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Mm. I'm in the UK and things work a bit differently here, so this may not apply; but your husband is only in his sixties, he's got quite a range of symptoms, and I'd have thought the neurologist might like to get his finger out - if you'll excuse the vulgarity - and make that appointment sooner rather than later. Has the PCP ordered any further investigations meanwhile? - any scans, anything like that?

Meanwhile, can you have a confidential heart-to-heart with your other child? I expect your husband's face would be a picture of horror if you even suggested speaking to his children, but the wedding, being so soon, is a big issue and this is a lot to keep strictly to yourself.

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HIs mother's 92, so he's what..? Sixties? Seventies?

I know this is incredibly difficult, but there are so many things that *could* be behind these problems that guessing has got to be a bad idea. Bloodwork in two days. I should get on the phone and badger the neurologist's office for that appointment. And hang around here on AC for more support, which will be along in a few minutes, I'm sure.

You are going to have to tell your daughter that there is a problem. You can try hugging this secret to yourself, but if you think she isn't going to notice that her mother is not excited and happy and giving her daughter's wedding her full attention... Better she should know that you're dealing with some uncertainty but expecting answers very soon than that she should be hurt and anxious that there's something you're not telling her.

Have you ever mentioned to her that you've been concerned about your husband over the last couple of years?

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Yes...I had mentioned it to her when I noticed a few small things but not really a big conversation. She is my daughter, not my husband's. She lives nowhere near us. I have 2 kids and he has 2 kids and they are all grown, married, some with kids and we all get along. My husband is in his upper 60's....I am in my late 50's.

I did call the neuro to add my name and number as a contact and they said it would be "some time" before he gets an appointment. I sort of figured that.

I do appreciate the support and responses here so much!!

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Thank you SO much for your response! I have known my husband 7 years and we are married 5. The last 2 years or so his short term memory, ability to focus and follow a conversation became progressively worse. The personality changes (angry, mean, combatative) are more recent...the last few months...bad enough that I brought up our need to go to counseling and check his healthough for vitamin deficiencies and/or ADD. Last month or two memory and focus were much worse. I have no other family members that I trust to talk with. I only have one brother and he and I are not close.

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You can always come to this forum.....the people here are awesome because they have been there....they offer very good advice.....and a lot of them go thru hell and back being caregivers....I pray for all of us every single day.....take care of yourself please, you will hear that a lot here and for good reason.....love and blessings Monica....

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Oh Monica, I'm so sorry that this has landed on you just as you're preparing for your daughter's wedding. What terrible timing! - not that there could be a good time for it, of course.

When did you first notice that your husband was having these difficulties?

Apart from your daughter, what other family members might you confide in?

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How long was it for you from the time your primary care doctor suspected dementia until a diagnosis was confirmed?

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