Confirmed Alzheimer’s

Jewelsrr

Been awhile since I updated. Trying to have the life we can have before DH a gets worse. I posted awhile back when he was doing many questionable things. Well we got to a memory care doc and after the full battery of tests, final being a PET scan we have the diagnosis.so now to make the plans while he still can thankfully. I knew but I thought it was dementia. Now I am in shock. His daughter that didn’t believe me is in shock. Thankfully hubby is no longer in denial and more cooperative lately. Maybe he is relieved even. 

I have felt sick and scared all over again which doesn’t really make sense given I knew and so badly needed validation, yet kind of wanted to be wrong but then of course what that would mean, who knows. I Am just tired and rambling.

I will attend an online support again Saturday and we both got new therapists that have experience with memory issues. Frustrating thing was his look at his prior eval of MCI and disagreed and confused DH. Very irritating especially when it was from a year ago and he has declined more.

Anyway, not happy to join this club officially, thinking of everyone in the same sad boat.

David J

Jewelsrr, I remember those early days of multiple diagnoses from different doctors, and tests that eliminated possible causes but didn’t identify the true cause. The MCI diagnosis from the neuropsych, followed by diagnosis of dementia of unknown cause(s) from the movement specialist, followed eventually by a dx of Alzheimer’s, based on he elimination of everything else. After years of wanting a name for her disease, we got one, but it did not ease our anxiety. 

The dementia progressed, as it always does. 

 I know you are in shock right now, but you are right to enjoy the next few years while you can. The support groups are very important. You will get good tips for dealing with what’s coming, learn about different dementias, and have a safe place to vent and cry. Good luck to you and your family on a this terrible journey. 

Quilting brings calm

== I knew but I thought it was dementia==

You are still correct in your original assumption.  Alzheimer’s is the most common form of dementia.   Dementia is a term that covers Alzheimer’s, vascular dementia, fronts/temporal dementia and  so forth.   Receiving an actual diagnosis  is still a shock because until then hope is held out that whatever this is is fixable.  

jmlarue

There can be great value in working with a Therapist to help the PWD and their LO's come to terms with a dementia diagnosis. Things like: finding emotional coping strategies, dealing with the grief that comes with loss, and coming to acceptance that dementia is an incurable condition. These are goals worthy of pursuing. IMHO, it is never helpful, however, if a Therapist brings a non-medical bias about "treatments" to the discussion that shed doubt on the diagnosis or fosters false hopes about delay, remission, or cure for this dread disease. There have been many discussions about using aromatherapy, speech therapy, and occupational therapy to remediate some of the losses and behaviors evident in the early stages of this disease. Such efforts may help for a time - or not. At some point, talk therapy will have no benefit for the PWD. The dying brain loses all ability to reason, to speak, or to interpret words spoken to them. At that point, it becomes a kindness not to subject the PWD to the futile exercise of talk therapy.

I am so very sorry that your LO has a diagnosis of ALZ, but it is a good thing that you have received the DX early in this disease, where you feel you have some time to discuss future plans with your LO. You may be able to accomplish some part of your bucket list while your DH is still capable of active participation. All good things. I hope you will find invaluable support here on this forum. I know it's been a lifesaver for me.

toolbeltexpert

Jewelssr,I asked that question yesterday when they reported a lower test score for my dw. I asked if it was Alzheimers they all kinda balked and I said I thought it was just based on the shear number of years this has been going on, a very slow progression. They kinda nodded, not much help. But it's  giving it a name mostly for me, I know it matters for the treatment which is the number one reason for us all to keep asking till it's  really settled. Sorry you have to deal with this a such a young age, with so much ahead. Take advantage of the time that  is still reasonably good. I already miss those things and my dw is probably  going to mc soon.

Ed1937

Jewel, I'm sorry for the diagnosis. But you're doing the right thing by thinking about how you can enjoy whatever time you have left. 

Stay with the forum, and be active. You will get the understanding and help we all need. You will become part of our online family, and you will receive support.

If you haven't done so, please consult with a CELA (certified elder law attorney). This is something you don't want to put on the back burner, but get it done soon.

Joydean

Jewel, I’m so sorry. It’s very hard to get that information, it’s like we need to know for sure but our heart is screaming no, no! As others have shared, it’s good you are planning to do the things you can do now. I kinda wish we had done more of that.  We all just do the best we can. I wish you and your family all the best.

PlentyQuiet

Before diagnosis I was pretty sure we were dealing with Alzheimer's, but it didn't completely feel real. When the diagnosis was confirmed (lumbar puncture) shock set in. It seems silly to be shocked because I was expecting it. 

It has been 8 months since diagnosis and I have come to realize that the shock was me having to adjust, for real, my expectations as to what my life, at age 50, would be like from here on in. Maybe less shock and more grief now that I have some distance. My kids are struggling a bit too, but I had prepared them for bad news. 

It's being so young and having your world so vastly changed, isn't it? I'm sorry you are here.

Jewelsrr

Thanks David j

Jewelsrr

Quilting, it’s also the reality that it really is going to progress. I had been suspecting fronto temporal based on some erratic behavior and the slow progression. So this was kind of a shock for sure.

Jewelsrr

Jmlarue, yes I am sure we will get many well meaning people offering such advice. Our goal in therapy is to focus on strengths, problem solving. He has been stuck in a lot of rumination so hopefully now with diagnosis his therapist will just let him vent so he has another person to complain to. I sought mine to advise on decision making.

Jewelsrr

Toolbelt expert I am sorry to her you are at that stage. I am hoping we are a ways off but I know not to take time for granted. Take good care!

Jewelsrr

Ed,

Yes it’s scheduled. We have most in order but we will double check. DH was actually a probate attorney himself and that as the first thing he said to get an appointment.

Jewelsrr

Joydean yes I m grateful to know mostly so we can make plans, make memories while we still can.

Jewelsrr

Plenty quiet, yes it sounds like we have a lot in common with being younger. So sorry!

DrinaJGB

It has been my belief that AD cannot actually be confirmed until autopsy. Is this now outdated thinking? I see here that AD confirmation has been made with Pet scan and/or lumbar puncture. Is that the case now? What do these tests actually say that is a definite AD diagnosis?

My DH has been diagnosed with possible mixed dementia after a battery of NP testing and MRI, but no definitive AD diagnosis, just "possibly".

  So---do I now request Pet scan for him??? Thanks in advance.

CStrope

DrinaJGB, I'm definitely not a medical doctor, but I can tell you what my DHs doctor told us. The PET scan can identify beta-amyloid plaques, which are a biomarker for Alzheimer's. When he showed us the scan results, he said that it's like a weather report, the more colors you see, the worse the storm, (or in this case the Alzheimer's).  DH's looked like the storm coming had wind, hail, lightning and anything else you could imagine. Since the MRI showed no tumors or vascular issues, but did show atrophy, the two test results together helped him give the Alzheimer's diagnosis.

DrinaJGB

Thank you

 . It just makes me question this whole 12 year odyssey with "possibles" and no real definitive diagnosis after such a complex form of encephalitis.

  It really doesn't surprise me that a Pet scan has never been suggested.It all comes down to the money like everything else in the medical world.So, I suppose my next challenge will be to convince his doc to have a Pet scan on DH. Twelve years is an eternity to wait for the truth.

Vitruvius

For my DW the first preliminary diagnosis after the MoCA and MMSE was possible Alzheimer's but they suspected something else and reserved judgement until further testing was done. 

My DW was finally diagnosed with a variant of FTD, Semantic Dementia (SD). A CT and a MRI were insufficient to determine this. It was a PET scan that was the deciding factor for a diagnosis of SD. The actual review comment was "PET scan indicated severe hypometabolism limited to the left temporal lobe (normal parietal)."  And went on to the diagnosis of SD noting that this PET scan result is characteristic of SD. 

Jewelsrr

Vitruvius thanks for explaining that.I am waiting to see DH actual report because I forgot to ask if they can specify type of dementia. He is very frustrated about muscle weakness and fatigue so I expect that those symptoms are related to the additional dementia dx. We don’t follow up until October so that will be a bit of a wait to learn more.not counting in his primary doc to know.

French

Jewelsrr,I am sincerly sorry for this bad news.

Your post takes me back 3 years. DX was both a shock, even if I expected it, and a relief as I had confirmation of my doubts that everyone was denying. I new what I would have to fight and I could begin to fight. A battle lost in advance but that you can make sweeter.

It is a kind of new life that is begining. Your perspective will change.

I send you all my best wishes for courage. I am 50 years old and working, I know what it means...

dayn2nite2

I've never seen any studies where a confirmatory brain autopsy was done on these PET-scan verified "Alzheimer's" or FTD or whatever variant diagnosed people had, or what the percentage of people whose pre-death diagnosis matched the brain autopsy is.

Until that happens, I remain in the camp that says the PET scan results is still an educated guess and you don't really know until a brain autopsy is done.

DrinaJGB

DH  was first diagnosed with mild organic dementia secondary to hsv encephalitis -2013. Since then he has had additional testing, including another MRI which indicated the areas of the brain affected/damaged by the viral invasion. Once again, mild organic dementia. Then last summer he had yet another battery of NP assessments and MR-- dx was once again mild dementia--multiple mixed eitiologies with possible AD.

One year later, and he has not faltered much at all. In fact, his incontinence has practically disappeared, his cognition has remained the same, sleeps better, can carry a normal conversation.He does exhibit some mild OCD behaviors but that has always been the case. He still draws, makes snacks and coffee, makes his bed, dresses himself although sometimes will put on a dirty shirt. He is a bit messy with food but not over the top with it. He follows directions well, and comments on news stories and movies, etc. He loves nature documentaries, read architectural articles and tells me what he read.

But when he goes for his 6 month memory checkup in the clinic, he does not recall things that he knew before going to the clinic. He is anxious about different surroundings.

  It is like we have been on a roller coaster for all these years, but things have not gone drastically downhill at all. So I still have that giant question in my head regarding how much of this is from the scarring from the near deadly viral invasion--with damage to the hippocampus and limbic areas of his brain---the same areas that AD affects---and how much is a new cause by AD.

I guess as long as things do not drastically fall apart we just hang in there for the unknown.

Sligo177

Hi Jewelsrr -

Just wanted to add my concern and sympathy for what you're going through.  Each step is a tough one, and you have so much to consider.  Glad you will see the elder attorney, glad you will make the most of these days. I agree with others, Alzheimer's is a form of dementia.  My DH was diagnosed with probable Alzheimer's, and as time goes by it is completely clear.  Thank God for this forum, where people share their knowledge and experience.

jfkoc

While the first responsibility is to make certain all treatable causes of the dementia are ruled out. 

 Then one can proceed with trying to identify which "non-treatable" dementia is  involved so that proper drugs are used which may slow down progression and/or symptoms.  

No matter the cause of the dementia one is left with  being a responsible caregiver.

Of course early on is the time to get legal and financial matters set in place so do not let those things slide. There comes a point when it will be too late.

What is left is the care and the care "ain't easy". 

It takes time and most likely more patience than you think you have. But every care giver is the one responsible for the "non-medical treatment" of their loved one and lest you think it is not so important let me say that studies have shown that non-medical treatment can be just as important as the use of drugs. One can not escape the importance of learning how "to care".

The people who post here may be the most help you are going to find anywhere. We not only offer emotional support we offer information and share real life solutions to situations we have faced.

You are not going to be alone on this journey!

Jewelsrr

Day2nite did a search on google scholar, here is one of many https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2774795/

His neurologist was also taking into consideration prior testing that concluded MCI, my narratives, and other rule out tests done.

Jewelsrr

Drink- Here is just one of many research articles https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2774795/

Jewelsrr

Vitruvius we were told the same.

Jewelsrr

French how is it going trying to work with all this going on? My own health has been negatively impacted so I will sale my hours back a bit while trying to manage. I don’t think he should be driving so luckily he seems to be liking the idea I will start taking him to appointments. But more stress for me.

Jewelsrr

Drina, so sorry it has been so long. I bet this is a recent development with utilizing pet scans.

Jewelsrr

Thanks Sligo, sorry you are in this boat too.