Needing advice to get a diagnosis

LilRoundTop

My DW has been showing signs of MCI over the last year or so. I'm in that stage where I pick up the slack for little things here and there and sudddenly realize how much things have changed over the last few years.  She's unable to do many things she used to do such as cooking a full meal, paying bills, using her smartphone to navigate, etc.   Of the 10 early warning signs, I can check the box on every one with an example.

In reading the forums yesterday, I learned about anosognosia.  I have not been able to have a conversation with her about her symptoms.  Even a small suggestion that her memory isn't good results in a very negative reaction which goes nowhere. (In fact, any suggestion to her on any topic that points to her taking to look herself immediately escalates to a catastrophic crisis of denial, screaming, counter-attacks, and sometimes days of turmoil.)  She displays complete denial or unwillingness or inability to see her own behavior regardless of how irrational it might be.  This behavior in particular is causing frequent fights with our adult children who think they can convince her to see her own irrational behavior through adult conversation.  (This is the main evidence for the category of "poor judgment" and "changes in mood and personality"). 

She has a doctor's appointment tomorrow with her general practitioner for an unrelated medical condition.  I realized it's time to get a plan in action when she couldn't remember why she had setup the appointment a few weeks ago. (I had to take her to the ER 3 weeks ago for dehydration caused by an intestinal infection. The ER told her to get a follow up with her GP.)

I have discussed with the alz.org counselors how to get a note to the doctor explaining my concerns with hope that he will get the ball rolling for an evaluation.  I'm torn because I'm scared to take the next step towards a possible diagnosis and also because she has always asked for direct communication and respect for privacy about her health.  I feel that I'm betraying that wish by going behind her back to tell the doctor what's going on.   On the other hand, I don't think direct communication will do anything more than cause a big fight and possibly create a scenario where she won't go to the doctor for fear of having to face the reality (if she can comprehend it) of the situation.

Fortunately, I have a durable medical POA and I realize the power that gives me to help with her care.  

Any advice or encouragement is welcome. I don't want to miss an opportunity to do the right thing even if it feels wrong.

Leaderoftheband

The right thing is never wrong

Rick4407

Hello Lil, sorry you have to be here.  As has now been demonstrated by your DW, anosognosia is real.  Efforts to convince her will only create problems as you have seen.  Avoid conflict.  Yes, pass a summary note to her Dr before the appointment.  Unless the Dr is very exceptional you will need a referral to a neurologist who is familiar with dementia.  The neurologist will be able to prescribe meds to help control her behavior as things progress.  

Accompanying her to her medical appointments is a good move if you can arrange it.  The reasoning being that you both have an interest in the others health.   If she is still driving that should probably stop.  You need to see a CELA as soon as possible to get your legal issues in order, that's important.   

As you have been doing, read lots of posts here and ask questions.  This is a very difficult road, your life is about to change dramatically.  Good luck, Rick 

PookieBlue

I’m sorry you are experiencing this major lifestyle change. My DH was seen about three years ago. His doctor had him take a cognitive test which showed he was at the tail end of mild cognitive impairment. I have decided that getting an actual diagnosis won’t be helpful for us. Maybe later. My DH who is 77 has Anosognosia. He is hearing impaired and his eye sight is very poor which exacerbates his dementia behavior. I believe his symptoms started 8 to 10 years ago. It is only recent that I figured out he doesn’t always know who I am. I have always compensated for his weaknesses ever since we married 35 years ago. We have the same mundane conversations over and over. He doesn’t always know that this is our home or where he is. He asks the same questions over and over since he seems to have a 30 second memory. He seems to think that most things that I do for us, he is doing. He thinks he can still fix me a meal etc. So many changes!

I’ve learned to avoid the trigger topics like “Alcohol use making the situation worse” or we need to get the vehicles appraised in hopes of selling them some day” or no, you can NOT drive the motor home. My learned response is DISTRACT, DISTRACT, DISTRACT. 

These are such difficult times for all of us. I’ve read many of the posts on this forum and was surprised to see that PWD are so much alike. Whatever is going on in their brains, we are all dealing with the same issues and having to adjust our lives accordingly. Many of us receive little to no help from adult children which is so sad. We are caught up in this life that none of us were really prepared for. However, we are blessed to have each other support. Hope you get the answers and support you deserve.

M1

Welcome to the forum, is your Round Top in PA or TX?  Just curious.

Definitely, definitely get a note to the doctor.  Today would be a great day to write it down in detail--as a doc, i can tell you that input from families is very, very important.  Are you going with her to the appointment?  If so, find an opportunity to hand it in to the reception desk.  If not:  take it ahead of time, if you can, or call.   The main thing the GP can do is a bunch of blood work to rule out treatable causes (thyroid, B12 for example).  Did she by any chance have imaging of her head when she was in the ER?  That would get you a long way towards other issues (such as brain tumors, hydrocephalus).  

If the doc can't address all of your concerns tomorrow, they will at least know of the issues and can arrange further follow up from there.  That said, what you're describing is clear cut anosognosia, and very common--my partner also nearly bit my head off the first few times I broached memory loss with her.  FWIW, we never did have a formal diagnosis--she had a bunch of other health problems (and had had bloodwork and head imaging),  and brief trials of Aricept and Namenda from our PCP were quickly discontinued because of side effects.  I never did think that seeing a neurologist or formal neurocognitive testing was necessasry in our situation, but others here would disagree.

Glad you found the forum.  This group has been far more helpful in terms of practical concerns --and support--than any of our docs or other resources.  It's a lonely and terrible process to lose your spouse to this.    You may want to refer your adult children here as well.  All of you will quickly learn that the days for trying rational discussion are long gone.  Now it's going to be about protecting her and providing safety.  Glad you have your medical POA, hope you have it for finances etc. too.  Good luck, and keep posting. 

jfkoc

You are not going behind you mother's back...you are advocating for her health!

Please do update us when you can...

Ed1937

Definitely pass a detailed note to the doctor. I would ask for a referral to a neurologist who sees dementia patients AS A LARGE PART OF HIS/HER PRACTICE. Not all neurologists are the same.

Rick mentioned making an appointment with a CELA. That is something you needed to do yesterday if you haven't already done it. Very important stuff, protecting whatever assets you can.

Iris L.

LilRoundTop wrote:

In reading the forums yesterday, I learned about anosognosia.  I have not been able to have a conversation with her about her symptoms.  Even a small suggestion that her memory isn't good results in a very negative reaction which goes nowhere. (In fact, any suggestion to her on any topic that points to her taking to look herself immediately escalates to a catastrophic crisis of denial, screaming, counter-attacks, and sometimes days of turmoil.)  She displays complete denial or unwillingness or inability to see her own behavior regardless of how irrational it might be.  This behavior in particular is causing frequent fights with our adult children who think they can convince her to see her own irrational behavior through adult conversation.  (This is the main evidence for the category of "poor judgment" and "changes in mood and personality"). 

Welcome LilRoundTop.  It is hard to accept that all of the above can be covered by one term, anosognosia.  Many family members and others persist in trying to convince the PWD, or in trying to extract some compliance.  It won't happen.  Anosognosia is real, but unusual.  Learn about it and educate other family on a need-to-know basis.  This is because most people won't believe you, anyway.  Learn from these members here, they know what they're talking about.

Also, many PWDs may exhibit poor judgement long before noticeable memory loss.

Iris L.

LilRoundTop

Thanks for all of your responses!  This was very helpful for me to feel confident in what I'm doing.    Since there isn't an option for me to accompany her today, I've compiled a detailed letter for the doctor which I plan to drop off in advance of her appointment. 

I'll give you a further update as things progress. 

(FYI...I'm in CO. The only RoundTop nearby is my bald head!)

LilRoundTop

Quick update...I dropped off detailed letter and other documentation for the doctor successfully. It was probably one of the hardest things I've ever done.  It dredged up all kinds of emotions and memories of my mother's terminal illness when I was a teenager...lots of uncertainty, what ifs, feeling alone, anticipating further challenges.  

Anyway, I called the DW after the appointment.  She said the doctor asked her if she was having memory problems and she responded "Yes".  She gave her an in-office evaluation that she said was the "advanced alzheimer's test" and that she did just fine.  I'm relieved we took a step and am pleased that he wanted her to come back in January for a "wellness appointment" but I don't know anything else.   Progress...?

Amy Joy

Hi lil round top!

Welcome!

I’m sorry to hear what you are going through.

It’s not easy getting a diagnosis of dementia.

Everyone here is nice and support you.

 I was diagnosed with early onset dementia at age 49.

My family noticed change in me. I had so many tests including 

The MRI showing memory loss and mental decline.

I’m being recommended to a memory care unit.

I’m hoping to stay home as long as I can.

Let’s chat if you want to,

I there now so good day 

Love

Iris L.

LilRoundTop wrote:

Anyway, I called the DW after the appointment.  She said the doctor asked her if she was having memory problems and she responded "Yes".  She gave her an in-office evaluation that she said was the "advanced alzheimer's test" and that she did just fine.  

I am a person with memory loss although not with Alzheimer's Disease 

.  I don't remember much of any appointment.  I always carry my spiral medical notebook to notate my symptoms and questions and what the doctor said.  One thing you will have to appreciate is that doctors usually will not say anything negative or depressing to a potential PWD.  So the doctor may very well have said she did fine, even if she did not.  It is important for another person to attend ALL medical appointments.

The purpose of the early appointments is to rule out medical dementia mimics.  This involves blood tests, perhaps a brain MRI, and a review of medications that can cause memory loss as a side effect.  Also, looking for a history of head trauma.  The PWD cannot handle all of this herself.  The tests do not diagnose dementia, but instead rule out other causes.  If all is unremarkable, the diagnosis is most likely dementia, and possibly Alzheimer's Disease. 

Is there a portal?  See if you can access the doctor's notes.

Iris

LilRoundTop

That's very helpful information.  I learned from my daughter (who heard it from my DW) that the doctor wants to focus on her hypertension and metabolic indicators first.  She has a follow up appointment in a month. 

Thanks to all who've responded!

Paris20

Welcome to the group that no one wants to join. As others have said, it’s important to get on top of what’s happening. Ruling out other problems comes before formal diagnosis. Even a diagnosis may seem unclear in the early stages. Sadly, we discover all too soon what we feared is true.

We have all had to change the way we interact with our spouse. Many, like my husband, think they are fine. No amount of logic or rational talk gets through. This anasognosia, as it’s called, is not denial but rather part of the brain’s cognitive decline. The word fiblet is one I learned here. To keep our loved one safe and happy, we sometimes have to create stories that satisfy him/her, even if they aren’t true. For example, I told my husband I’d drive because his keys were misplaced. Since he forgot each experience, I told that fiblet for a couple of years.  Many of the communications that we shared for decades wind up being put aside in order to accommodate this rotten disease. Once we accept that, life becomes a little easier. Finally, check with the doctor to find out if what your wife reported is correct.

JJAz

". . she has always asked for direct communication and respect for privacy about her health . ."

 Perhaps have a discussion that "now we are at this age, we should go to each other's doctors appointments to help each other and make sure that the doctor does his job."  This is how I approached it with my husband.  At the doctor, have your wife sit closest to the doctor and you look over her shoulder.  When the doctor asks questions, you can shake your head if you disagree with her answers and she can't see you. 

  

M1

Sounds like a positive step LRT.  I know it was hard--it is very, very hard to have to face this head on and realize that it has already changed your relationship with your spouse.  But I'm very glad you did it.

Round top in TX is the home of a very famous (and big) annual antiques show.  and Round Top in PA is Gettysburg (a haunted place, the site of frantic fighting that changed hands several times).  You get to be your own Round Top in CO I guess!!  Not many other rounded tops out your way but a lot of beautiful jagged ones.