Testing Tomorrow -- UGH!

CStrope

Well, DH finally has his appointment with the neuro-psych tomorrow for cognitive testing.  His MRI was way back on 10/21, so it seems like we've been waiting for this for soooooo long.  I've had a lot of emotions thinking about this today.  DH still says he's perfectly fine.  He told me he's been "studying" hard so he thinks it will go okay.

I know he will be fine while he's doing the testing, it's the hour long ride home I'm apprehensive about.  Will he be angry?  Will he be sad?  Will the doctors talk with me?  Will we get some results or will it take days/weeks before we hear anything again.  So much unknown.  

I keep telling DH that everything will be just fine and Thursday we'll wake up and nothing will be any different just because he's gone through the testing.  But, will it?  Will it really be the same?

So, I try to sleep since we need to leave home by 6:30 am.  Tomorrow my whole world may change.......or will it?

SSHarkey

It’s hard, yes. You have to make yourself take it in bites. Don’t look at the long haul. Focus on the now. Tomorrow will come and changes will happen. But keep yourself in the now as much as possible. You won’t regret the time you have while he’s still aware.

Siouxz

CStrope,

I wish you and your DH success tomorrow. It can be a grueling time for him. I just took a back seat to my DW's mood and let her take the ball, so to speak, and let her dictate the atmosphere. He may need to vent or might just need down time. Good luck.

M1

Yes good luck today and let us know how it goes.,,,

Ed1937

Hopefully he'll surprise you, and be just fine. Don't put too much stress into what might happen. Deal with things as they come. Best of luck to you.

French

 It takes me back 2 years and I can well imagine your stress.

We did the 3 tests (mri, lumbar puncture and pet scan) and he had an extensive neuropsychological check-up (moca, asked and paid by me). The neurologist only gave the diagnosis once she had it all, explaining first the MRI which showed atrophies, the lumbar puncture which showed the excess of biomarkers and the pet scan which showed the (numerous) areas of the brain that were no longer functioning well.

My partner was stunned. I knew ahead of time and had tried to prepare him but he didn't understand at all. I was the one asking the questions. But he well understood that he had Alzheimer and that there was no doubt.

The good thing about these "objective" tests is that they are "objective". He can't say it was because he was tired like he was with the neurophysiological tests. The same for me. It’s better to have a firm diagnosis. It's still very difficult. My partner is very docile, he wanted to do all the tests, even though he didn't understand why. He trusted me and the doctor. He never tried to argue.

 He knows very well that he has Alzheimer's disease but he minimizes the impact. Sometimes he forgets. When he had to stop working he explained to the doctor that his next activity will High mountain first aid (he did it when he was young) or skipper.

Whatever happens to you, I hope the doctor will be tactful. It’s part of their job.

Crushed

French wrote:

Whatever happens to you, I hope the doctor will be tactful. It’s part of their job.

Sometimes you just get Brutal honesty.  DW was a physician.  She was diagnosed with MCI in 2010.  We had to switch neurologists in 2012 within the same provider.    He talked with her for about 20 minutes.  He told her "doctor to doctor" that she could not drive since she had taken an oath not to hurt people. Before we left he typed the visit notes into the computer. He looked irritated when he saw that her diagnosis was listed MCI. As it turned out he assumed it was just a data  error and he changed it to Alzheimer's.  but no one had been willing to make the call of Alzheimer's on a well known 59 year old physician. It was printed out and he gave them to her. She read it in the car.  When I called him later he was apologetic and said it was obvious she had Alzheimer's and it never occurred to hem that his predecessor had not told her.

It was a tough day.

Jeff86

Thinking of you and hoping things go better than you are (understandably) anticipating.

My DW knew she was having memory issues and was referred to a neuro-psychologist for an evaluation.  Deferred and delayed making an appointment, I believe because she knew what the findings would be.  MCI and possible early stage AD.  For her, it was devastating but not surprising.  For me, it was devastating but not surprising....and better to know and prepare for what lies ahead.

abc123

Thinking of you both today. I hope everything goes okay. The ride home too.

CStrope

Thank you everyone so much for your insights and good thoughts.  Well, we made it home, and someone has finally said the words Dementia, Alzheimer's, Frontotemporal.  The doctor said that without the PET scan, there's really no way to tell which type of dementia it is, but he also didn't push us to get the PET scan.  He said at this point, he would not prescribe anything differently, so it would totally be for our personal informational purposes.  We opted to not do the PET at this time.  

He was also very good at showing us the MRI scans, and explaining what it showed, and what it meant.  That was very helpful to me, as I am a very "show me" type person.  I think it helped my husband too, even though he won't remember a lot of what was said.

I was shocked by the lack of emotion or response by my DH to everything the doctor was telling us.  I have been hearing for months that there is nothing wrong with him and he just forgets once in a while, so I was ready for a major discussion as to how wrong the diagnosis was.  I tried to engage him in a conversation about things, but he didn't want to say much.

So, I guess it is what it is.  Now we know for sure, and we have a new medication to try.  As hard as it was to hear those words from the doctor, I now can proceed knowing what is happening.

Thanks again everyone for being so supportive.  We live in a very small town, so of course DH does not want anyone to know.  That makes it hard for me, since it drastically limits who I have to vent to and support me.

Joe C.

I’m glad the testing is behind you, it is very stressful to go through. We are always here for you so vent away. We all get it.

Ed1937

Sorry you didn't get better news, but like Joe said, we're here for you. You are not alone.

sandwichone123

My dh did his testing yesterday and I had the same fears. Much to my surprise, he thought he did really well, "about 90%, and if I didn't know sometimes she'd give me a little hint."

We still don't have any diagnosis or any feedback of any sort. Dh has an appointment scheduled for March(!), and I figure we'll get more then, but it's hard waiting...

ElaineD

I had four or five hours of neuropsych testing this past December.  The time also included a half hour interview with the Psychologist. This was at the Duke Neuropsychology Clinic.

I had a telemedicine appointment to get the 'results' about a week and a half later.   NOTHING was reported to me on the day of the testing.

Now you may well be asking why I had this testing, not my DH.  I am 78 and felt I was having more difficulty retrieving a specific word while in conversation.  It made me very frustrated.  I KNEW I had the word in my memory but just could not find it when I wanted it.  I could 'talk' around it of course because I'm very verbal.

I  also wanted a baseline to compare myself with at a future date, if necessary.

I mentioned my concern to my new neurologist, and she made the referral for me.

Okay, this is what the Psychologist told me.  I function at a very high level, far higher than average across the board, particularly on verbal tests.  And I am now at a normal level on oral recall of words (name animals that start with A, vegetables that start with R, etc.), precisely the sort of thing I now have  trouble with.  So my verbal retrieval of words isn't a 'problem' when tested.  But it is a problem for me because it has changed, slipped down to normal.

I'm not so great on the visual/spatial tests, but still normal or better.  And I knew I wasn't breezing through them at the time.

The entire experience was interesting for me.  I don't know if or when my DH might have this testing.  I wish he would go now to get a baseline, or a current measurement now, anyway.

The person conducting the testing was so considerate and kind.  I'm sure he would have been supportive of anyone.  He asked if I wanted my husband to be in the room with me.  He was in the car reading the paper, and I didn't think he would want to be with me, so I turned that down.

I think it would be 'trying' for someone who had been functioning quite well and was now in the early stages of AD/Dementia.  If the person is really aware that the test is highlighting loss of function, that might be very hard, indeed.  

I already have many MRIs of my brain, since testing for my disability has prompted a great deal of testing.  So that baseline is in place.

Hope this helps.

Elaine

CStrope

@DianeWesner I'm so sorry they didn't give you any results and now you have to wait.  I was so thankful that the doctor assessed the tests and had a really thorough discussion with us right away.  

The way he went over the pictures of the MRI my DH had done 10/21 was so so helpful.  Especially when the Dr. showed us the exact areas on the scans that showed where the brain was deteriorating.  I think it made it more understandable for my DH also.  He was a Science teacher for 25 years, and Science is something he trusts and can believe.  It was no longer just about the cognitive tests, or someone's opinion.....this was about the MRI and the real life information it provided.

Hang in their Diane W.  I'll be thinking of you.

Siouxz

CStrope,

How did the testing go today? How about the ride home? I hope all went well.

Susan

Siouxz

Hello Jeff,

If I may ask, what is MCI?

Thank you.

Siouxz

Sorry, I should've checked the posts before I posed that question.

Caring4two

CStrope wrote:

 …someone has finally said the words Dementia, Alzheimer's, Frontotemporal.  The doctor said that without the PET scan, there's really no way to tell which type of dementia it is.

My husband was part of a research study at Northwestern in Chicago run by Dr Mesulam. My husband died 3 1/2 years ago. As part of that study he had a brain autopsy. That was quite revealing. He had an atypical form of Alzheimer’s that involved his frontal-temporal lobes much like FTD (Frontal temporal dementia). Four years earlier, at the start of our journey, he underwent several MRIs (showing progressive atrophy), several hours of neueo-psych testing, and an FDG-18 PET scan (measures glucose utilization in the brain) and a lumbar puncture (to look for the biomarkers amyloid and tau). It was that FDG scan that alerted us that this was not going to be a typical Alzheimer’s course, and it wasn’t. In four years he was gone. He was a very sick man. I am a retired nurse so testing results were important to me. It helped me formulate a plan of care. It didn’t change the outcome but it helped me mentally. As you stated “it is what it is”. 

The neuro-psych tests have to be “scored” and that takes a little while so you may not get a full report for a week or two. One of the best pieces of advice I received on this board at the beginning of our journey had to do with an elephant. Someone reminded me “How do you eat an elephant? One bite at a time”.  I had to adjust my mindset from multitasker, organizer, to one day at a time, one thing at a time. There is life during and after Alzheimer’s, It’s just different from what we are used to and each day will be different.  Pace yourself for the journey. My prayers are with you.

French

Hi CStrope,

This diagnosis was certainly not a surprise for who, as you are in this forum. I am relieved that it went well and exactly felt the same about the proof of science (MRI and other tests). You also had a tactful Dr. Our Dr is very helpful, this is important.

Now you know what you will have to fight or to manage, not sure we fight something. I understood that the main differences between AD and FTD are in behavior, so perhaps you will have your own conclusion later.

I hope that our husband will be cooperative to plan things. Everybody here advise to plan for the future. First it's very usefull to do it when you husband is still able (we did it 2 years ago, and it was clever because his family begins to want to discuss the house...) and secondly you will certainly need to feel that you are in action. For me it was a way not to think to the medical part, being occupied by administrative activities.