What if it's not dementia?

JoseyWales

Hi my friends,

I've not posted much lately, but I've still been following all of you. Today I'm just writing to try to organize my feelings and thoughts and I suppose look for support as I continue on this journey after all these years.

Quick review- DH is about to turn 59, symptoms first noticed about 15 years ago. Quit working almost 7 years ago. No actual diagnosis. He's been in memory care 10.5 months. On hospice 2 months. 

To say he had behavior problems at home is mild. He is no longer able to walk or feed himself, but the anxiety is getting worse. It's never been under control. He now cries, rocks, says "oh no, oh no" over and over, calls out for people, yells, etc. It's like he's caught in a nightmare, and he can't focus on anyone around him. Hospice is really working with medication and several different types of therapies (music, massage, etc.) It's just continuing to get worse. And now he's sleeping more - of course - but when he falls asleep I can't even rouse him a little. 

I had a nice conversation with the hospice nurse yesterday. Apparently she's been having lots of discussions with the doctor and they are questioning what type of dementia he might have, and if it's even actually dementia or something else entirely. I have no idea what that could be. There is significant shrinkage on CT scans. The problem is that medications aren't doing what they should, and they don't quite know where to go from here, although we keep trying things. This weekend I'm to collect and forward all medical records I can find going back these last 15 years. Since we saw about 7 different neurologists, 3 neuropsych visits and tests, 2 different psychologists, several different counselors, lumbar puncture, blood tests galore, etc., it's going to be a lot to collect. 

Anyway, I'm here pouring all this out because I am feeling guilty that we didn't do more to get a diagnosis way back when. And I know I shouldn't, because we saw SEVEN different neurologists. And a neuropsych who said it was all depression. Three times. Blown off by doctor after doctor. (You're too young for dementia, must be depression) Spent over $20,000 out of pocket, until DH got to the point where he didn't want to see another doctor or have another test done. Being told it's nothing year after year and test after test takes a toll. Nothing I could do would change his mind.

But I feel like I should have done more. Pushed for a diagnosis. Kept seeing doctors after I knew DH was past the point of making his own decisions. When I felt it was a dementia, I had a period of telling myself "It doesn't matter what you might have done, dementia is unstoppable." But what if what's caused this is something else? What if we COULD have stopped this????

Just guilt. I'm sure you'll all tell me to feel no guilt, but it's impossible. And exhaustion. Visiting him all the time, seeing his anxiety and fear, and working full time. And dealing with some other issues at home and work that seem minor in comparison to dementia, but still stressful. I can't hide from the fact that I'm depressed and anxious and hiding health issues too, any longer. I have a doctor's appointment in a week. Hospice has a grief counselor who is going to call me next week, too.  

That's it. 

Ed1937

Josey, I'm sorry you're dealing with this. I'm giving you a link that I think might be helpful. Why Do Caregivers Feel Guilt? 

Michael Ellenbogen

This disease is very hard to figure out when you have the best neurologist in the field. When dealing with most neurologist they are clueless. You cannot blame yourself for their incompetence. That is a huge problem when we are young looking for a diagnoses.

Kenzie56

Oh my goodness, Josey, I can't even imagine what you are going through. It is hard to understand a doctor asking you to gather medical records over the past 15 years! That makes my head spin just reading that. Maybe there is another way around that. Does his current PCP have some of those records? Most specialists share test results with the primary care physician.  Just a thought. I hope your doctor's appointment goes well and your doctor can help alleviate some of your guilt and stress.  It must be so overwhelming.

JoseyWales

The medical records issue is that many of the doctors we used were in different networks, and the networks didn't always communicate very well. Due to insurance we had to switch networks 2 different times during all this. That was part of the problem with having to visit different neurologists, too, but none of the neurologists were helpful anyway. Records get mixed up and lost when you switch that much.

I found reports from 3 different MRIs this morning, but not the very first one. The first one I have is from 13 years ago. I guess it pays off to hoard this stuff. I can only find the last neuropsych report, but I'm going to contact that office and get the other 2 reports on Monday. All medical records from the last 6 years or so are easily accessible from DH's primary physician and current network.

JoseyWales

Ed - thanks for the link. I know guilt is a big issue for so many of us. My brain is just having a hard time convincing my heart.

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MaryG123

Hugs to you Joey Wales.  (()) With all you’ve done, is it really likely that there is a treatable condition that was missed?  I’m guessing probably not.   Many of us here don’t have a firm diagnosis, but have ruled out the treatable conditions.   I’m so glad you’ve made some steps toward dealing with your grief, and please take care of yourself.

M1

Josey, I completely understand the second-guessing yourself, BUT:  what else could you have possibly done?  Seen an eighth neurologist?  It sounds like you overturned every possible stone.  It is so frustrating not to have definitive answers---but I doubt they are to be had, period.   

One thing to consider, for your own peace of mind:  you could consider having a brain autopsy done when he dies.  It won't change anything now, obviously--but it might finally give you the answers you seek.  

I'm so sorry it's such a terrible ordeal now.  I hope hospice is helping.  But I don't know that it's helpful to have the hospice nurse bringing up diagnostic issues at this stage of the journey.

jfkoc

My suggestion would be to make certain that all diagnostic procedures were followed....everything possible treatable ruled out.

I would then do some google work on Lewy Body dementia and Frontal Temporal dementia. Both of them are treated with drugs that are not used for Alzheimers. I would share all information with Hospice since they are showing an interest.

Would you be willing to share what currents meds are?

Beachfan

Dear Josey, 

I am so sorry you are going through this.  You have truly been a strong and staunch advocate for your DH all through his horrible journey.  But I agree wholeheartedly with M1.  There is only so much one can do; you may have to wait until later to find out what was really going on.  It is encouraging that the current medical team is working with you toward answers, but in the meantime, you need to take care of yourself and your son- - physically, emotionally and spiritually.  Guilt is part of human nature but try to rise above it and keep yourself whole.  I am (we all are) thinking of you and wishing you well. Stay strong.  

Jo C.

I can only imagine how dreadfully helpless and deeply worriesome this must be for you; I am so sorry for your situation and for your husband's suffering.

Of course you want to find the cause for the dreadful hellish symptoms so adequate treatment can be found; I can understand that.  One of the first things that popped into my mind was what jfkoc mentioned.  Could this be a manifestation of Lewy Bodies Dementia?  If that would be so, one of the common occurrences in that type of dementia are significant realistic hallucinations that are actually seen, heard or even smelled and are very, very real to the person having them and they can be beyond horribly upsetting.  Some patients on top of that can also suffer paranoid thinking.

One of the issues is also that some meds used in treating Alzheimer's Disease can be contraindicated with LBD.  Haldol should never be given in LBD as it causes worsening highly negative effects including those hallucinations. Thorazine is also not used.  Some persons with LBD can helpfully be prescribed antipsychotics, others cannot tolerate them.  There is a lot of information re treatment in LBD and one can go online to the Lewy Bodies Demenia Assn. to get infomation.

NOTE:  However; one does not know whatsoever if LBD is actually present or not; just popped into mind.  This situation appears to have gone beyond the expertise of the Hospice physician and perhaps if not done as yet, he/she needs to reach out to consult with specialists so as to find information that may lead to helping the patient; so hope they will do that.  Hospice is all about providing patient comfort and thus far that has not been able to be done.

The most important thing is to be able to find medication to ease the hellish suffering of the patient and that appears is what the Hospice MDs have been trying to do.   As mentioned, if the Hospice MDs have been unable to be of assistance with their own knowledge base, would they permit a Neurologist to do a consult in one way or another; even if  the consult is only telephonic between MDs. 

The only other way to try and deal with this dreadful situation would be for Hospice to have the patient admitted to the acute hospital so a Neurologist can actually assess the patient, etc., but that certainly may well be a signficicant taxing situation for the patient and contraindicated for his well being.  (Hospice does indeed admit to the acute hospital when they are unable to manage a severe patient situation of one kind or another.)   So hope that they are able very soon to find the right medication that will help.

Please do know that you are not guilty of anything; this is a situation that is not common place and could not have been foreseen.  You are doing all you can as your husband's advocate and are striving hard to help.

Just some LBD info if you wish to read it:

https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025

https://www.nia.nih.gov/health/what-lewy-body-dementia-causes-symptoms-and-treatments

There must be somethiing to help your husband medically and also to ensure no contraindicated meds are used; that too may be a good topic for MD to MD consult.  Let us know how things are going; we certainly will be thinking of you.

J.

P.S. Has he ever been subject to severe vertigo attacks?

JoseyWales

I want to thank all of you for your support. I'm feeling a little better.

M1 - That's how I usually feel, what more could we have done? Our 2nd to last neurologist was at our state's teaching hospital, and I've seen her quoted in national articles on early onset. She was the one who ruled out any type of vascular dementia, and gave him a 66% chance that it was Alzheimer's. But she wouldn't continue to treat him without a lumbar puncture test for the Alz. protein or PET scan, both of which insurance wouldn't cover and she was a 2 1/2 hour drive away. DH refused both tests and wouldn't go back. The previous neurologist had done a lumbar puncture for everything under the sun *except* for the alz. protein or whatever it is they test for. And the amount of blood tests he had run... a vampire would be jealous.

So I know in my heart that there was nothing treatable to be found. It's just so frustrating. 

Jo - there were no hallucinations early on, which is why Lewy Bodies were ruled out. But I still think that is a possibility. I've also wondered if he has a type of frontotemporal dementia. Personality changes were there. There were no muscle spasms like Parkinson's early on either, but there are now. He's presenting more now like it's Parkinson's. That's what his mother had, although not early onset. 

He never had attacks of vertigo.

I just want him to have peace. 

Marie58

Josey, I don't have anything to add that hasn't already been said. Just know you are, and have been, an amazing caregiver, wife, and advocate for your DH. He's blessed to have you. I'm sorry this is so hard and has been going on for so long. Sending prayers and hugs your way.

jfkoc

My husband went from MCI>Parkinson's> Lewy Body. He really had little to no motor symptoms.

Take a look at this;

https://davisphinneyfoundation.org/what-are-the-non-motor-symptoms-of-parkinsons/

JJAz

JoseyWales wrote:

Jo - there were no hallucinations early on, which is why Lewy Bodies were ruled out. But I still think that is a possibility. I've also wondered if he has a type of frontotemporal dementia. Personality changes were there. There were no muscle spasms like Parkinson's early on either, but there are now. He's presenting more now like it's Parkinson's. That's what his mother had, although not early onset. 

Josey, My husband had LBD, confirmed after death.  He didn't have hallucinations or tremors until very late in the disease.  In fact half of LBD patients don't have hallucinations early in the disease.  LBD average onset is 10 years younger than AD.  And LBD cognitive decline often looks different than AD.  Often less memory loss, but other cognitive difficulties than AD.

Jo C.

Taking off my PV hat and simply speaking as a wife.  Josey, the priority is to get relief from the 24 hour seven day a week relentless suffering your husband is experiencing.  No way should this continue as is.   You will probably have to be an insistent person outside of the box.  Hospice can be great, but this is not their area of expertise.  Your insistence needs to be present and not just accept slow and inadequate moving out of hand; not acceptable.

Hallucinations in LBD is not usually seen in the earlier stages (years) of onset; they usually are later in the disease process.  It is interesting in that his mother had Parkinson's - there is a familial risk if a first degree family member has had the disease; about 15% plus risk depending on what studies are used. Diagnosis for type of dementia can take awhile and sometimes diagnosis can be changed as the disease evolves and symptoms change.

Your husband's dire situation is so sad that it has stuck with me and left me pondering out of concern for his terrible suffering.  That should not be permitted to continue with slow Hospice moving.  It could be many months spent like that and it is not acceptable . . .

Can you let us know what meds he is currently on?  And if he is being given prn (as needed) meds what are they and how often are they given?  You can find all of this out by asking to read his patient medication record, often kept in a notebook on  the med nurses cart.  If we can see the meds being given, there may be some experiential wisdom here amongst Members.

How long ago were labs done; what were they and what were the results?   This too will be in his medical record and you can request to see them and have the request granted. 

Has he recently been checked for a UTI?  Has he run a temp which may indicate other infection?  Unlikely, but has he been checked for COVID in the past and if he had  COVID could he perhaps be long hauling contributing to this?  (As said, unlikely.)   Is he constipated?  Constipation can be a significant issue; especially if the patient needs to have a BM but due to hardness cannot actually pass the stool which causes much distress to the person.

There are so many different questions all of which can contribute to what is present without being the actual primary cause.  Meds are a big issue to be examined. 

Because of the level of suffering which must be addressed adequately; I sat and thought about this in terms of my own husband. What would I do in this situation?

Problem is; I do not know your husband nor do I see his physical global picture, so there is no real comparison . . . it sounds from your writing that he is not in immediate or even near death; so,what would I do?

I am a "leave no stone unturned" person in situations such as these.  I would realize I did not have sufficient information to make any sort of solid reasoning for the suffering.  Guessing or assuming is a big zero.  I would come to realize Hospice also does not have the capacity and that makes things more complex. In other words; none of us "do not know what we do not know," so we must find a professional who does.  I would not permit this level of suffering to continue without a full court press since he is not in an imminently dying phase and could go for months like this.  It would be up to me as the only advocate to work toward adequate care and get the relief for my LO as he would not be able  to do that for himself; he would have to rely upon me even though he has no capacity to know that, but I would.

First; he has been on Hospice service for two months.  Though having tried, Hospice is not able to provide the treatment and care he desperately needs. They ask for 15 years of prior med reports which would be very hard if not impossible to collect.  The Hospice MD appears to not have expertise in the field of dementia at the level required and the historical documents may not give any information or shed any light.  Since this is required care to alleviate suffering, and since looking at 15 year old records would probably not be of help, there is only one avenue to pursue in any form of reality in dealing with this.

This is only me and certainly not what others would choose to do:  I would want my LO seen by a dementia specialist with much experience regarding this problem issue which is profound and affecting every minute of DHs quality of life.  Problem is, those specialists do not visit long term care facilities; so how does one get such a consult for assessment that would hopefully lead to adequate treatment?  Where we are, that would mean admission to the acute care hospital for just a few days.  Yes; that activity may be upsetting to the LO, I do realize that.  However; if the specialist consult and any special labs, etc. would be the answer to obtaining adequate treatment to relieve suffering, I would do it.

Hospice can choose to admit their patient to the acute hospital within the scope of their work especially when they cannot bring relief to suffering or other extended circumstances; however, it is more expensive for them and though some Hospices are more beneficent than others, they do not like to do this.

If Hospice denied acute hospital admission for a couple of days with a specialist consult, then I would disenroll from Hospice, have him admitted to the med center to be be seen by a dementia specialist and have whatever is needed done to find the problem diagnosis to find treatment to relieve my beloved husband. After those few days in the hospital, I would have my LO returned to his Memory Care, (having arranged to save his bed), and have Hospice come back onto service. This is not unusual and is done. 

But that is just me based on what you have written . .  I would want to go full press just that one time if there is hope to finding a way to bring peace to my LO which also would bring peace to me as that level of 10/10 plus relentless suffering would undo me.

As said; that is just me. I do not have your history nor do I have personal in-depth knowledge of your husband  or eyes on your husband; it is just me throwing everything at the wall and so hoping something opens up and sheds light on how to find relief from suffering to bring a semblance of quality of life out of the relentless circle that at this point never ends.

By the way; my LO had a behavioral variant of FTD - lots of delusions but no hallucinations; memory does not get lost until later stages, lots of anger and fury, but very easily and swiftly relieved by an antipsychotic.

I so hope that a way forward can be found very soon; I will be pray for your husband and hold out hopes that adequate care will be found.

NOTE:  Jfkoc; marvelous article, I will be copying it to save to file for future use; thank you very much.

J.

JoseyWales

Jo - I can't say thank you enough for your long response. I'm not a medical person, and not knowing how the medical system works puts me at a huge disadvantage. 

I'm heading to DH's facility in a few minutes to demand to see his records. I know there are PRN meds, and while I ask about them I don't really know what's been given. I feel I have a good relationship with the staff and they do tell me what's going on- as long as it's staff I know. In this time of staff shortages, there are so many in and out and they don't know the residents.

You also gave me a lot of other things to think about. I'll be calling hospice this afternoon, after I look at his meds lists and attend my father in law's 91st birthday celebration. 

Long Covid - very unlikely. We both had Covid about 13 months ago, when he was still home, and I don't think he even ran a fever. Almost asymptomatic. He's been tested pretty frequently at the facility and no positive. 

Constipation - might be an issue. I'm going to be looking at those records too.

UTI - probably unlikely, but I'll mention checking for that.

Fevers - I'm going to look through records for that.

Thank you so much for all the things I can look for in the records and ask about. Otherwise I just don't know.

I'll update with his meds later this evening, when I have time. 

And thank you for giving me the push to get going in the right direction. Or at least A direction. Lewy Bodies seems like a possibility. But he had memory loss at the very beginning. 

Jfkoc - thanks for that link! Interesting information.

Lills

Josie, I'm so sorry you and your DH are going through this.  Of course, you want your DH to be at peace.  If I really try, I could feel guilty for every decision I every made on DH's behalf during his illness.  Did I hold his hand enough?  Was he cold?  Did I provide enough stimulation?  Mostly, was I patient enough with him, etc.  I could go crazy thinking of all this.  Trying not to feel guilty is a work in progress.  I did the best I could. You are too. 

You wrote that you were wondering if your DH could have FTD.  Of course, I don't know...but... memory loss is not among the early signs.  In fact, my DH could still do math computations, still knew people's names, could still draw a perfect clock, etc. with his FTD.  It wasn't until later stages that he began his memory problems.  The first time I took him to a neurologist was for lip-quivering.  The neurologist dismissed any concern I had.  (I later changed to a different neurologist, but that's a whole other story.)  He did have Parkinson's too, but not terribly noticeable.

So glad hospice is on-board to help you through this awful journey.  I wish YOU peace too.

Ed1937

Having Jo on the site is priceless to many of us. She understands how things work.