Still no diagnosis...

Jedwalker00

Hi everyone. After several years dealing with my dad's memory problems and delusions, that someone is going into his room and stealing all sorts of things, we were finally able to get him back to the neurologist. My dad agreed to do the CT scan and the EEG this past week. Friday morning we went back for the results and all the doctor said was that everything looks normal and that was it. He asked me if we were still having the same issues and I told him yes...every single day. All he said was that, well I can keep seeing him but there is nothing more I can do. And that was that. I left his office feeling frustrated and at a loss of words myself. I actually asked my husband if maybe I am the one with the problem???? He laughed and said then we are ALL losing our minds because it is not just you that sees it. So now his primary doctor and a neurologist have both written him off.  I really do not know what to do anymore. I don't know that I can keep dealing with this for years to come. My dad lives with us and he is very stubborn and hard to deal with. He refuses to entertain the thought of a retirement community. I feel like without a diagnosis I am just stuck living in his daily delusions. I am just venting at this point. I felt like I needed to get that out. Thank you for listening.

jfkoc

Please do not give up on your quest for a diagnosis. It sometimes seems that it is an impossible task.

I suggest going back to square one. Find out everything you can about the diagnosis protocol. There is lots of info on this online. Check that everything was done correctly.

You might also google the symptoms  your father has and then please do check the meds he is takeing, both from a Dr and OTC, for side effects and interactions. I use drugs.com but there are other online sites.

Rescue mom

I may have missed something, but did the neurologists/medical people say there’s nothing they can do because (this is the key part) he probably has Alzheimer’s or another dementia?

Many doctors won’t definitively diagnose Alzheimer’s, but if all else is ruled out, they are likely say dementia and nothing they can do except relieve some symptoms (including those you mention). Did they rule out dementia?

Some doctors have said my DH is “normal”, in terms of normal for someone with Alzheimer’s. In other words, his abnormal behavior is the normal disease progression.

You can still pursue with other doctors regardless.

You probably know there’s nothing they do to stop or “fix” such dementias, although there are Rx drugs for many of the symptoms, such as Seroquel to help with delusions or excessive paranoia, or anti-anxiety meds to help with that, and so forth. Most if not all those need any doctors Rx though.

I felt kind of “written off” when doctors told me, after DH went through scans and tests, that there was nothing they could do because, they said, he in all probability had Alzheimer’s. I knew Alzheimer’s is not treatable, but I thought they knew more about what happens when. They don’t. (Many, many stories here about the worth of continuing with neurologists after that dementia finding. Or lack of worth)

They did give a couple of common Rxs, which get very mixed reviews and did nothing for DH that I could see. But the sad fact is, as I learned from support groups, there really is not much else they can do.

I had to go to a geriatric psychiatrist (the local Alzheimer’s Association gave me a list) to get an Rx for meds to help with his delusions. The geriatric psych. actually “got” him and the situation much better than any other medical people.

LevisHouse

Jedwalker00 - I found I was mumbling "yep" as I read your post. Please know you aren't alone - many of us have experienced this. And yet, knowing others have gone through this doesn't make it easier. I am my aunt's conservator and we went through 8 doctors (you read that right - 8) and not one of them would tell her anything was wrong. It all started when her primary care doc became concerned about the dementia, told my aunt, and then notified the CA DMV that my aunt should not be driving (this was the absolute right thing to do). My aunt then went through 8 doctors trying to find someone who would sign off on the DMV paperwork so that she could get her driver's license back. Not one of them would sign off but that at the same time not one would tell her that anything was wrong. It wasn't until we got to the UCSF Center for Memory and Aging that I found a doctor who was willing to deliver the news. My aunt didn't take it well but I finally found the support I needed and wanted from a doctor and a social worker at the Center that is providing additional support.

My point in writing this long story is not that you should go to UCSF (which could be very far from you) but to find the right specialist. Someone else pointed out that many doctors won't tread in this area, and that has been my experience as well. If you can, find a gerontologist and even a clinic that specializes in dementia/Alzheimer's - they are out there. And - another suggestion: early on I found a dementia specialist at Jewish Family and Children's Services who is amazing (you don't have to be Jewish to use their services) and she is the one who really taught my how to frame conversations, helped me prepare for what is coming, and was another ear when I really needed help. JFCS is all over the country and you might be near one.

Finally - take care of yourself. It is good that you have a supportive and understanding husband. With each step of this process I haven't known how the heck I was going to get through it, but forums like this, friends, and experts like the dementia specialist from JFCS, have all helped.

Rescue mom

I assumed the neurologist you saw specializes in dementias, but I should not have assumed that. If he isn’t , then yes, as said, you need a specialist. If he is, then try a different specialist.

The question has been asked before, without real answers, why so many doctors are so unwilling to say dementia? Or Alzheimer’s? There probably is no answer, but thoughts are plentiful…mostly that they don’t like giving bad news that they have no solution for. Even cancer usually has possible treatments even with long odds.

Some think PCPs with long relationships to the PWD are especially reluctant to say even “probably dementia.”  I agree with that. I had to beg the PCP to send my DH to memory clinic neurologists for dementia testing. It took a major incident to finally get that referral.

If your dad has not been seen by a neurologist who handles dementias, I’d strongly hugely  urge you you to see one. (When you said neurologists, I wrongly made assumptions) . Your local Alzheimer’s Association can help you find one, or a memory clinic, or other specialists. Many take 2-3 months to get you in

 Some ppl wondered if docs are afraid of lawsuits (seems far-fetched but maybe, with paperwork such as DLs) since Alzheimer’s can’t be absolutely proven until after death.

 But docs  could at least say “we ruled out everything else, so he almost certainly has a dementia.”

Some caregivers don’t need or want a diagnosis since nothing can be done except deal with behaviors. Bur you want to know, as I did, and you should be able to do that.

With DH, the doctors (memory clinic specialists)  couldn’t say it fast enough “he almost certainly has Alzheimer’s there’s nothing we can do and  you should find a support group and get help at home” said like one long word, barely a breath taken, and out the door to next patient.

He had scans, but the cognitive testing took several hours broken up over a few weeks. It was a lot more than just scans.

 Granted, all the specialists do is deliver bad news, and yes they’re busy, but sheesh. (Nurse handed me Rx for Aricept and memtamine? as we walked out). I guess I should be grateful for even that. 

DrinaJGB

After 12 years of starting with a brain injury from a very rare form of encephalitis which caused profound memory loss and reduced executive functioning we have recently been hit with a diagnosis of "mild dementia; possibly mixed etiology." What exactly is that? I still cannot get a definitive answer.

All I know is he was given Aricept and in 2 weeks had lost nearly 10 pounds.He also had become incontinent at night and was drooling so badly I was worried about aspiration.

  Went back to doc and he was taken off. Now he is doing better again, and is no longer incontinent at night.He has gained back the weight he had lost on the Aricept.

  I am starting to feel that neither his neurologist or his PCP has a blue clue what is going on. I am looking into taking him to a palliative care/ hospice dementia doctor who coordinates care for someone diagnosed with dementia. I suppose that will be the next road we will venture onto.

In my years of dealing with all of this I have come to the conclusion that we are pretty much in this confusing and frustrating battle alone.Totally and completely alone.

Jedwalker00

Thank you to all of you! I needed the words of encouragement and all of the great advice. I am going to keep fighting the good battle no matter how long it takes. Xoxo

harshedbuzz

Jedwalker-

That must be crazy-making. I am so sorry things did not go in your favor.

Does your dad have the ability and propensity to showtime? This would be pulling himself together for a short period of time when in a doctor's office or some other place where he wants to make a good impression. This can really impede your ability to get help for you both as no one will believe this charming fellow can be- shall we say challenging- at home. 

My dad could do this in spades. Part of the problem was mom would make sure he cleaned up real good-- she's of the one dresses for the doctor. So he'd agree to the first shower in a month and she'd lay out the Brooks Brother's khakis and a cashmere sweater in lieu of the food encrusted tee and sweats he'd been wearing for a week and off they'd go. He had a far amount of cognitive reserve and scored well on the in-office screenings like MMSE and MoCA. He managed to score around what would be expected of a man his age/education about 6 months before he died from aspiration pneumonia. He bragged about his score all the way down to lobby where he toddled off while I was at the valet stand and got into a random car being driven by a terrified little old lady. Since the doctor wasn't seeing what I was, I recorded a video of him excoriating me for stealing money from him and sent it to the geri psych who was a little surprised at dad's ability to maintain a facade of civility for an hour given the symptoms he already had.

He will progress and you may have another shot at a workup fairly soon. Make sure this new person a specialist in dementia and consider sharing video ahead of the appointment. 

HB

Wait.What?

@jedwalker00 - we went through 3 PCP's (one of whom told me I intimidated him), 2 gerontologists, and almost left our current clinic before finding a doc worth seeing. Don't give up!  

The docs we saw had no problem saying "cognitive impairment" or "dementia" but they gagged on "Alzheimers".  I can't begin to tell you how many times a specialist told me, after I'd asked, that they'd have to do a brain biopsy to confirm Alzheimers and clearly it would not be possible while the patient was alive. And that was despite an MRI showing that parts of her brain had decreased by 90%. Those same docs didn't want to take my mom's license either, despite the fact that she was endangering every one on the road. I finally forced a gerontologist to sign the DMV form before the end of our last appointment with that doc. 

@harshedbuzz - yes, yes, and yes! I did not know that was called showtime. I call it walking the red carpet.  You describe exactly what I am seeing. I had to take video on my phone to show the docs later. Thank you for sharing that info. 

Dot9000

@Jedwalker00 keep going. Every time we'd try to get anywhere,  Mom would secretly cancel the doc appointment or change her POA. She was lucid when she needed to be, then go back to dementia when no one was around. We finally had to trick her to the doctors (lie) and what finally helped was the Thompson Memory Test. We told her she had to take it to be able to drive again. Otherwise she would have refused. They were the ONLY ONES who would say neurocognitive decline/Alzheimer's/possible Lewy Body (while all other docs poo pooed it away). Keep trying, get new doctors if needed. Eventually you will prevail. Take care.

robby love

thanks for sharing,  i dont know if i could do it anymore,  your story sounds familiar.  reading thse made me feel even more desperate.  i pray for all of those that are going through this .