To get tested or not?

michiganpat

I had my husband tested by his primary doctor (he didn't know I asked). She told me he did pretty good, then in his patient portal she diagnosed MCI. I have seen others tested who did well when it was obvious there was a problem. He was very upset after the appointment and said he would never get another "brain test" again. I have suspected a problem for 3 years but could not face what I was seeing. This past spring his repeating of things increased and his problems with memory and confusion became more noticeable. He has accused me of having an affair and has questioned whether our 50 year old daughter is his. We have been married 53 years and he would have never thought this before. Over the summer I have started to accept the obvious. He is one that really dislikes going to the doctor. His biggest fear has been alzheimers as his mom died of it. What good would further testing do him? I doubt I could get him to agree anyway. From what I have read about half are told of their diagnosis. And of those that are told many don't believe it. All it did was upset them. I want to do what is best for him. Knowing will not change the progression. Down the road it may become necessary if he needs medication for behavior issues but right we are managing.  He gets worked up about just about everything and the endless repeating gets on my nerves but I just tell myself he can't help it. Some days he is good and I question if there is anything wrong and then he does something that leaves no doubt. I guess I am just wondering if others think like I do.

Crushed

Assuming you have full control of all finances, have full health care and financial DPOA and there are no guns in your house You may be ok.  

Otherwise it could you are in denial , not of his condition but of your own future.  

M1

Pat we have never been through formal testing either.  My partner has many other health problems, and brief trials of both Namenda and Aricept resulted in immediate side effects.  Given lack of other therapeutic options, she doesn't have a formal diagnosis (but mother died with Alzheimer's, and sister had Lewy Body dementia).  We've left it alone, there were no legal or financial reasons to pursue.  She's on Seroquel now for sleep fragmentation and sundowning, prescribed by our very knowledgeable PCP.

I think every situation is unique.  If you're comfortable with where you are (and have your legal and safety ducks in a row) and confident that potentially treatable causes have been addressed, I don't know that a formal diagnosis would change anything.  

Pam BH

Pat, so far I agree with M1 for our situation. We haven't had any official testing and all our needs are being met by our PCP who appears to be an anomaly in that he's very knowledgeable and caring with both my DH's needs and mine as a caregiver. We also live in an area that doesn't have specialists associated with AZ/dementia such as geripsychiatrists or specialized neurologists, so that hasn't been an option. However, that being said, I don't know what the future will bring, if there may be a future need for specialists. Financial and legal planning is a different matter, so just make sure all those needs are met, but right now our medical side is being taken care of. A good PCP is worth their weight in gold.

DrinaJGB

After my DH had encephalitis he was tested first in the facilities before discharge which at that time was a complete waste of time because the damage to his brain was so fresh he barely knew who he was (he spent 4 months in them). Then a few years later another testing session was done where he had the Dx of mild organic dementia secondary to viral encephalitis. He has been tested twice since then--the latest just last summer, which changed the diagnosis to mild dementia possibly of mixed eitiology.

This has not changed things much other than give ME a more clear picture of how his brain is doing and what to possibly expect for the future. As far as he is concerned, however, when the neurologist told him the diagnosis--hinting that he could possibly now have AD, he went into compete denial about it.Late when I asked him about his diagnosis he merely said he is "still getting back" to normal---which is totally not the case.

The main thing to be aware of IMO is that if your DH is already angry about testing it will not go well if at all. It is a grueling process and takes many hours. My DH has a very mild demeanor now and did not mind the testing process, but for a different personality it could well be an expensive waste of time.

mrahope

FWIW, I agree with what others have said.  A year ago, after several hours of intensive neuropsychological testing my DH was diagnosed with MCI also.  This, and the good advice of several on this board, prompted me to get legal matters well in hand.  That is somewhat of a relief.  He was offered medication after the testing and declined it.  I can't think of a reason to put him through testing again as he has several other health issues that need monitoring.  Observing things day to day seems to be the best I can do.  Guess the only reason to visit a neurologist again might be if he needs medication for behavioral issues.  So hard, because he was a clinical psychologist and at some level knows how off-base things are.

ButterflyWings

Dear MP,

Smart move. At least you have some confirmation of the road ahead with this MCI diagnosis. It progresses, and as the other members said, gives time to get your affairs in order. For us, the testing was necessary to help rule out some treatable reason for the changes we were both seeing (major memory problems) and some behavioral issues or personality changes only evident to me. I had no idea of the judgment issues that also come with the territory, including financial missteps that were devastating during the 2+ years before finally getting the AD diagnosis. He was easily stage 4 by that time. Wish I had known earlier so I could educate myself - and protect us.

We also did the testing to get some confirmation of impairment or not, in order to nudge my DH out of activities that were a danger to him or others (driving way longer than he should have, and unfortunately, immediate forced retirement due to his career field). At that time he was aware though not in agreement, but principled enough to follow doctors orders. Except when he would forget, and then I was the betrayer or crazy woman shutting down his business and trying to take over his life. You understand. 

To say he was pi$$**d off is an understatement. Furious. At me. Almost constantly. It was a very, very challenging time -- still is, but at least we know what we are dealing with and can prepare somewhat. I did as much as possible behind his back to avoid the catastrophic outbursts that happened before I realized he really wasn't rational anymore and couldn't really discuss, co-plan, cooperate or be reasoned with anymore. AD took all that brilliance and skillset from him early. 

Within a year after diagnosis, he had full blown anosognosia and no memory of any of the hoops, twists, turns, and sheer drama we have gone through with it being a tug of war with my DH much of the way. And in those 3 years I am a lot less sensitive to the things his diseased brain may say when he's having a moment (multiple times a day about something or other).

**The other reason for diagnosis is you may need to use a small amount of medication at some point, to ease his anxiety, anger, delusions or hallucinations if they escalate as it did with us. It s the only thing allowing me to keep him at home to now (stage 6d). And I learned here that meds for some dementias actually cause problems for other dementias. You don't want to have an urgent need for assistance with his behaviors for safety...but need time to schedule an appointment and get results back first.

NylaBlue

My husband was tested at diagnosis and annually several times after, but in retrospect I would ask, “what’s the point?”  Testing or not, there is no treatment that will reverse this disease, and I’ve learned 99% of what I know about dementia from this site, others like it and books.

My 90-year mother has not been the same since she had a head injury about two years ago. She was tested at the time and won’t tell me any details, but I don’t need a neurologist to administer a MMSE and tell me she has dementia. I’ve seen it in her daily life since then. I recognize it because I’ve lived it already with my husband.

Iris L.

I have a dx of cognitive impairment nos.  If your DH has delusions, he is past the point of MCI.

I agree with getting your legal and financial affairs in order, also ensure safety (no guns or dangerous chemicals to confuse as beverages).

Medications may help with memory and ADLs so that he may remain at home for a longer period of time.

If you have a bucket list, do it now.  Travel will be hard with Covid still in the picture.

I suggest that you familiarize yourself with the stages and you can monitor his progress yourself at home.  Learn from the members when geriatric attention is needed.  Since he already shows delusions, you must become prepared for further developments in this area.

Unfortunately, professionals seem to have little to offer.  Learn from the members, they are very knowledgeable and willing to share.

Iris L.

michiganpat

Thank you all for the advice. I have been really struggling with this.  My gut tells me that further testing would not be in my DH's best interest. Your responses have helped me feel comfortable with this. I have suggested to him that we get our wills updated as it has been several years since we made them and he agrees. So I guess that's a start. He doesn't have a cell phone and doesn't use the computer so our finances should be safe. It is mind boggling all the decisions to be made. I talked to our kids this summer about their dad and it was such a relief to finally tell someone. They have been very supportive. Our son was the one that found  this site for me. I will be relying on all of you a lot as we are all in the same boat. Hugs to all of us.

Beachfan

In May of 2010, our PCP told me he was diagnosing DH as MCI and “50% of MCI patients develop full blown Alz.”  We agreed to monitor his progression anecdotally; did not see the need for further testing.  DH took Aricept and Namenda for many years until it was clear they were no longer slowing progression.  He presently takes 50 mg Zoloft daily, but I am thinking that could be stopped as well.  He is 4 weeks in residence at a MCF; does not recognize me, family, friends.  He is well cared for and apparently a “caregiver’s pet” if there is such an animal.  My son is coming by soon to join me in a visit with him.  I’ll help DH with lunch, take a few laps around the cottage, and visit by the fire where he seems to enjoy the oldies on the Comcast music station.  If she appears, I will get the latest news from “Carol”, a stunning Doris Day look alike, who is the resident gossip.  Last week she told me she remembers growing up with DH, her “little brother”, but he’s not so little anymore. 

One day at a time.  Enjoy the good times.