Reality check

Deb2322

Hi all-First time posting, so if this has been addressed, my apologies. For 1.5 years my hubby has been showing signs-word retrieval issues, saying a word that is similar to the one he wants but not the correct word, losing/misplacing items, processing problems, denial that he narrowly missed another car, general short term memory loss, forgetting appointments, getting lost, rude behavior, agitation. We don't have a diagnosis other than mild cognitive impairment, but I am documenting for our next neurologist visit later this month.

Today he told me he thought his "issues" were much better. I asked him if he wanted to know about what I saw and he said no. Is it common for dementia/ALZ patients to think they are getting better?

Iris L.

Yes. There is a term for this, anosognosia. The PWD is unaware of his deficiencies and truly believes he is fine. If you attempt to confront him with reality he will resist and get upset. You will have to learn a new way of communicating. Learn from the members.

Iris

SDianeL

Welcome Deb 2322. This is definitely the place to come for help. Many with dementia/alz don't realize they have it and compensate for it and become good at hiding it and denying it. My DH was diagnosed 2 years ago. Just recently he heard me say something about dementia and he said to me "I don't have that do I?" It broke my heart. He started where your DH is now. Spelling/language issues, relationship issues (son, daughter, grandchild), anger, losing things. When he asked my daughter what her brother's relationship was to her I knew something was wrong. I made an appointment with his primary who did a simple memory test of 5 words and he failed it and she referred him to a Neurologist who did a CT Scan and to a Neuro Psychologist who did the 3 hour assessment. That test and an MRI are necessary for a good diagnosis. The Neuro Psychologist called me and said he should no longer be driving because he had visuospatial issues and couldn't understand space, time & distance. Hence, the narrowly missing other cars. My husband would hit curbs and drive extremely slowly and he had always been a speed demon. She said that if he were in an accident even if it wasn't his fault we could be sued and lose everything. That's how I got him to stop driving. Keep a list of everything you notice & have a private conversation over the phone with the Neurologist, preferably before the appointment or send an email if you can't speak to them over the phone. That helped me communicate with them during our appointments. I still do that to this day. One year ago a nurse case worker came to our home and said he could no longer be left alone. that happened in 6 months. He can't use the phone anymore. He couldn't read an analog watch but pitched a fit when I suggested he get a digital one. He finally agreed. He is now becoming more agitated & angry and they started him on Respiradone at night but so far that hasn't helped. Also priority one for you is to get him to an elder care attorney and get a DPOA drawn up while he can still agree & sign. My DH can no longer read or understand documents or sign his name. Again with 6 months that happened. So glad my brother-in-law recommended I do that. I rented an apartment, sold our RV and bought a new car with the DPOA. So sorry you are going through this. It's terrifying and heartbreaking. Please keep us posted.

Ed1937

Welcome to the forums. Sorry you have a need for it, but you found a good one.

"Keep a list of everything you notice & have a private conversation over the phone with the Neurologist, preferably before the appointment or send an email if you can't speak to them over the phone. " And you can also bring a note with you to the doctor's appointment, give it to the person at the desk, and ask that the doctor read it before seeing the patient. Just tell DH that you are going to use the rest room, then hand it to the proper person. These notes really work well. I have used them maybe 5 or 6 times, and they were always welcomed by the doctor.

The suggestion about seeing a CELA (certified elder law attorney) is really a good one. This is something you need to do ASAP. If you wait too long, you will for sure be sorry. DH will need to understand what he is signing, and it sounds as if that window may be close to closing now. Failure to see the attorney before that happens can cost you thousands of dollars.

Iris' post about anosognosia is something you need to keep in mind to make your job just a little easier. https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm  

Deb2322

Thank you all for your experiences and advice. Our situation is challenging because I am 63 and he is 79; he has 3 daughters from his first marriage who have nothing to do with me and he doesn't want them to know what goes on with him medically. He does have a trust-the house is in his name-that the daughters will inherit. I will have 6 months to find a new home, which is fine with me. I will inherit two vehicles and all possessions, plus 1/4 of retirement accounts and all money in savings, I bonds. I have my own savings/retirement so I am not worried financially.

I feel a huge sense of relief having this forum. Friends listen, but don't get it because they aren't living it. I have been good at finding activities that I can enjoy independently-he has been busy with home projects and woodturning. We do things together (movies, theatre, vacations) but it is getting harder for me to recognize whether he is truly enjoying these things or just participating. His answer when I propose some activities is "I'll do whatever you want to do". which is occasionally followed by "because we always do what you want anyway."

Thanks for letting me ramble.

ghphotog

For the most part my DW has not idea anything is wrong but lately she has. She'll start crying saying she's "going crazy" and "what's wrong with me", "something's wrong". . .

I don't tell her she has dementia and that's what's wrong, I just hold her and let her know I've got her. It's heartbreaking.

She'll forget again with a few minutes to seconds.

Deb2322

Ed1937 thanks for the link-I learned a lot by reading many of the articles on the site. Knowing there are many resources for me has been a huge relief.

harshedbuzz

@Deb2322

Hi and welcome. I am sorry for your reason to be here but happy you found this place.

After my dad was diagnosed with mixed dementia is a late-middle stages, he did this. At this time, he'd not fully moved into anosognosia and did have a sense-- at times-- that his memory wasn't what it had been. That said, he could not fully appreciate the other critical losses around executive function that required us to make some very drastic changes to his lifestyle while he was in rehab after a qualifying hospitalization. Mom and I found and set up an apartment near me, hid dad's car (the neurologist told him he couldn't drive), listed their home in MD and contacted a Realtor about seasonal rentals for their place in FL.

To say dad was unhappy with me taking over his life would be an understatement. He would often tell us that his memories all came back to him "in a dream" or "while I was asleep" and insist on going back to Florida. He'd argue with me about it while I would say he needed to stick around for a while until the doctors said he could go and then I'd help them pack the car happily. It would escalate until he would sheepishly ask me whether he needed to make a right or a left out of the parking lot to get to Florida.

HB