Anyone felt frustrated with doctors and trying to find a diagnosis?

Well, I am sorry, perhaps a better of understanding about dementia might help.

I am not angry or bitter, I have dealt with dementia affected members of my family for over 20 years, so I speak from experience.

IMO your response is anger related, sometimes we need to accept reality.

Perhaps there is some truth in my response, if not to you that is ok too.

I wish you the best in your journey.

In the early stages of my husband's diagnosis of Alzheimer's, five years ago, I was upset that he was napping so much. The neurologist told me that his brain needs time to rest and it's typical of the disease.
I've purchased various jigsaw puzzles for people with dementia, 16, 35 pieces, and a couple of children's puzzles (with appropriate themes, not babyish), 100 pieces.
My husband's gone through a number of phases. Often when I asked him to work on a puzzle, he'd say no. When I said it would just take 10 minutes, he'd agree, then get involved in doing the puzzle and forget about the time.
The last week or so, when I sensed he was bored, I put out a puzzle and he's started to work it on his own. He seems to enjoy the challenge and has a great sense of accomplishment when he's completed a puzzle.
I play Scrabble by myself. He often looks at the board, looks up the words in the Scrabble Dictionary or makes suggestions. Sometimes I can get him to keep score.
This morning he asked me to go on a walk with him. Often, when I ask him, he refuses. Sometimes, he'll agree to a walk later on in the day.
I've found I have more success with sneaky interventions and suggestions than direct invitations. That's just where we are now.

@rew0452, I regret that you were hurt by comments made by @dollyme. I'm confident that the recent messages shared come from a place of kindness and caring, and not a place of judgement. We only have words on the screen to communicate our experiences, thoughts and support. Without the benefit of tone of voice or body language sometimes the messages may be interpreted incorrectly. Everyone's situation is different. Dolly's messages reflect her story, which is not yours. Mayo Clinic Connect is a place where you can talk openly about topics that are often taboo among our family and friends. I commend you for sharing about the challenges you and your husband are facing.

As a gentle reminder to everyone in this helpful discussion, I am posting a link to the Community Guidelines (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/). Please see in particular guideline 2 excerpted here:

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Back to you, Becky. I take to heart words from @centre where she states "go with the flow." Not easy, I know. It's a constant calibration. What might help today, may not tomorrow. What kind of volunteering do you both do?

I am new to this group as of a month or so ago, and rarely comment but read through when I have some free time. Which is rare. Becky, I too have had many different diagnoses for my husband. In 2019, we saw the first neurologist for some word finding problems and after a very short assessment the Doc declared that he had early onset Alzheimers, and we should "get his affairs in order." My husband continued work as a mechanical engineer. Later as his speech was becoming more problematic, we did in depth testing at UCLA and were told the same thing. After open heart surgery to correct an undiagnosed defect that had reduced the blood flow to his brain by a large amount, he improved. Then in 2022 we finally both got COVID (despite many vaccines, it was just our time...) and he had a stroke, brain surgery to remove a clot, and boom- back to severe aphasia. To this day his blood pressure and cholesterol and calcium scores are perfect. He made blood clots when he had COVID. His current diagnosis - GP and new Neuro agree- is Primary Progressive Aphasia and Frontal Temporal Dementia. Aphasia is just a type of FTD. But now he has the behavior component as well as the terrible speech and comprehension difficulties. He needs assistance showering and dressing, sometimes he puts his shoes on his feet and the sock on his hands. It comes and goes. He no longer can use the tv remote, microwave or, thankfully, a cork screw. He likes wine...he can have some, but not too much. Anyway I think he has some Parkinson's symptoms starting too. I finally got the Neuro to order a fresh MRI, and the GP is referring us for an updated Neuro psych assessment. I just don't think anyone ever really knows for sure, we can just monitor the changes and look for clues. I think the MRI might show some TIA's, or shrink because he has lost many abilities in the last 5-6 months. He is only 65. I am thinking ahead and researching good memory care facilities just in case, and we are relocating to Phoenix from Redondo Beach to be closer to our daughter and grand children. I need the support, and the joy of watching the littles. There are way more resources in PHX than in my area. There is practically a memory care on every corner! Becky, just do what you can do. No guilt. Enjoy that your husband seems happy and content with his games and naps. When he is up for it, share memories. When he is napping, do something for you. Get help,if you are able, and go to lunch with a friend or get a massage! Hire a cleaning service once or twice a month so you are not a full time care giver AND the maid. Sending hugs.

We live in a "rural healthcare" setting and don't have many specialists near us so my husband has only had a mini mental state exam administered by a nurse in our family doctor's office. He was diagnosed about a year ago with mild cognitive impairment. For several months I tried to get him to think about seeing a neurologist, geriatrician or neuro-psychologist. He has repeatedly refused to go for further testing. The nearest specialists are 3 to 4 hours away or further. An appointment with one would mean at least a 3 day trip for us. Currently, he is being treated by our family doctor. He shows all the classic signs of Alzheimer's disease. He sleeps 12 to 14 hours a day and naps in between. He denies having memory issues and yet he knows he is forgetting a lot. He even points out articles for me to read about Alzheimer's! He eats cookies and other sweets and soft drinks all day long! The most common form of dementia is Alzheimer's Disease and I am finally comfortable with this diagnosis. I have given up trying to get him to travel for further testing. If he had a Lewy Body dementia or frontal-temporal, etc. I would probably push harder for a specialist appointment.
He is a happy man, he loves playing with our two small dogs, he reads constantly and keeps up with the news and at this point, does not have any behavioral issues. He can still dress and groom himself. He still mows the yard, although it has taken a week to finish the backyard. I am looking for someone to take over this chore for him. I see signs that his cognitive issues are worsening this last couple of weeks. We just had a visit with one of his children and he is struggling more now. The visit was fine, but this child is a take-charge type of person and he was dreading the visit. Now he is displaying signs of anxiety so the doctor has increased his anti-depressant. I agree with @jmg60. Now is the time to take care of yourself. You can only do so much. A dementia support group might also be helpful if there is one near you.
My guy (84 yrs old) is living in his past regularly so he talk about his memories, we look at pictures and enjoy some relaxing time together. My focus is on his quality of life. I can't change what is happening. I do make sure he has regular health appointments, I call the doctor when we are facing a new issue. He is at a stage in his life where major medical interventions such as surgery could be a major setback, leading to more disability or death. I am not sure how well he would even tolerate an MRI or CT scan now. We took care of our legal documents almost three years ago after he had a TIA and Pulmonary Embolisms in both lungs. I am so glad the legal issues have been taken care of. It has been a relief for me and has taken a load of worry off my shoulders.

Yes, my family, that we know, 3 in our family of dementia. 2 gone and 1 of my aunt. 3 of the where or here in there 80s. It takes time to know dementia inside them.

Of course, how many type of mental problems of >dementia< means? I’m number of 10… read the type of dementia in different #1 - #10 of brain problems.

Did it start of my families have or had dementia? Some of that writing of pros, said having a dementia starts as a little kid… other brain-injuries can start when young, but many of us with a TBI could be an accident, beating of other family, falling at school, born from a mom who was taking bad drugs, born in the babies brain is not “normal” and on…

That problem of dementia has lots of different dementia, of course. 🙏🏻

There are no clear answers from doctors because there are no clear answers. We aren't that far away from leeches sucking out bad humors centuries ago when it comes to dementia and the umbrella term ALZ. At a friend's suggestion, I've been taking notes in a journal for the last two years when I noticed odd behavior. It helps to look back on these notes to avoid being gaslighted..thinking you are making it up. What I thought was just a road to old age was, in fact, much more. It took hallucinations and his wandering to go "home" for the neurologist to finally name it ALZ. I cope better when something is spelled out for me. Name it and I'll deal with it.

Yes - so hard to get a diagnosis. In my husband’s case, initial MRI came back normal, so his local neurologist didn’t think he needed to dig further. However, my husband is 53 and can no longer work as an attorney because he will forget entire conversations that he had with clients.

Mayo Jacksonville accepted him after being put on their wait list and his first appt at Mayo was Feb 2024. MANY tests later, I’m hoping that the Mayo neurologist will be able to diagnose at his appt in August. What’s hard is that some of the results point to Alzheimer’s, while others don’t. So it will really take the doctor’s expertise t figure it out.

See my comment just submitted on the neuropsychologist discussion. Good luck.