Mom was newly diagnosed

Marymmc

my mom was newly diagnosed , and she has lost the ability to keep track of the day , dates , appointment times. She will ask multiple times daily what time an appointment is , or what is the day /date even though it’s a week away , and even wake early in the morning & start to get ready saying I’m picking her up to go. She can still carry on great conversation , but these other functions , also including taking her medications seem to be lost completely now. Using her laptop is fine , even if I talk her through it , and using her phone is very challenging if she is uses it at all. She will read an appointment that was 2 months ago from her calendar and tell me we have to go tomorrow having no concept that it’s Nov and that appointment was in September. These functions declined in only a couple months. She was able to take her own medications morning and evenings up until 3 weeks ago and now that is lost. Does this sound like a normal time line for progression? She has some trouble finding words , and doesn’t do anything. she just rests. She was a retired artist who painted , did yoga and was busy all the time and now has lost the ambition to do anything. She does not realize she has Alz. Along with her doctor we tried telling her but she didn’t seem to comprehend it. I’m just trying to understand does this seem like early stage or does it sound like my mom has a rapid progression ? Things really took a sharp decline in the last few months. Thank you

H1235

Welcome. All the symptoms you described sound normal for dementia. Sometimes a uti can cause a progression of symptoms. Vascular dementia can have a progression that moves in steps rather than a steady decline. Everyone is different, so it’s hard to say what “normal” progression is. Is she receiving 24/7 care? It sounds like it it is time! If a facility is going to be considered, you should keep in mind they may have a waiting list. I know you didn’t bring it up, but one of the first recommendations when mom was diagnosed was to see a lawyer for medical poa and DPOA. These are so important. People with dementia often have anosognosia. This is the inability to recognize their on symptoms or limitations. This often means they don’t even realize they have dementia. In most cases there is nothing you can say to convince her of these issues. In fact an important rule we all learn eventually is to NEVER try to reason with a person with dementia. I would suggest you take down the calendar or stop writing appointments on it. I would not leave appointment cards with her or even discuss in advance when her next appointment is. With my mom I would usually just arrive at her place to pick her up plenty early so she has time to get ready. If she chews me out for not telling her about the appointment (which she would do even if I told her in advance, because she would forget), I just apologize and tell her I must have forgotten. Pointing out she was the one that forgot about the appointment doesn’t go well and serves no purpose. I have attached a few resources that might be helpful. I’m glad you have found our group.

https://www.agingcare.com/topics/295/anosognosia

DBAT.pdf

understanding-the-dementia-experience.pdf

terei

All of that sounds very familiar from my experience with my mother. My mother could read her calendar out loud to me but have no comprehension of the words at all. At some point, a calendar causes more problems than it helps.

SDianeL

welcome. You have received good advice from H1235. I would also recommend the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Online videos by Teepa Snow or Tam Cummings are also helpful. Learn all you can about the disease so you can help her. I would be careful about her using a computer. She is vulnerable for scams. Is someone handling her finances?

JulietteBee

In response to your specific question, it is most telling of a moderate stage of Vascular Dementia than Alz.

That is exactly what is happening to my mom. She still reads, but her comprehension has been lost almost complety.😢

harshedbuzz

@Marymmc

Hi and welcome. I am sorry for your reason to be here but glad you found us.

To my ear, most of what you're describing sounds stage 4-ish, aka moderate stage. The issues with using some tech (her phone), taking medication appropriately, and iffy orientation to time (the appointments) are losses in the moderate stages.

It could be that your mom is progressing at a faster rate than is average. Sometimes people with EO dementia do progress more quickly as do people with VD. Those with mixed dementia sometimes do as well. Moving a PWD out of their familiar home and routine can sometimes result in a decline as can an illness (UTIs are notorious)

Or it could be that living local to her, you saw her at times of the day when she was most functional rather than having a 24/7 view of the ebb and flow of behaviors over a few days. Ironically, I had a better idea of my dad's ability to function because he lived 200-1000 miles away and I stayed the weekend when I saw him vs my friend who saw her mom daily for several hours at a minimum.

Playing into this is a common behavior called showtiming which is when a PWD can hold it together for a couple of hours and appear to be capable than they actually are. This behavior often happens with doctors and visiting (non-caregiver) relatives which can be maddening. Speech and language skills can be all over the place. My mom, who does not have dementia, has word finding issues that make me feel like I'm in a never-ending game of Charades. My dad who had mixed dementia was conversational until the day he died from aspiration pneumonia. On the rare occasion when he had word-finding issues, he'd sub out a more elevated synonym. He faked out a lot of people.

Dementia is about so much more than just memory loss. Her disinterest in former activities, apathy, is classic dementia behavior and is often included in the "10 thing to Look For" dementia screenings.

It sounds like it is time for her to have supervision in the home or move to a AL/MCF or in with family. I would also restrict her use of the internet as that is just a high-speed connection to con artists and scammers.

HB, whose dad day-traded away $360K in the moderate stages of dementia because mom refused to take away his laptop.

April23

Calendar, phone, remote, microwave, and bills all seemed to happen at the same time for my LO. All of a sudden, he just couldn't understand them anymore. He also quit showering frequently. These things involve multiple steps and it becomes too much for them. It seemed sudden to me but in reality, it was probably happening for awhile and he was able to hide it. I did what was suggested here and just got rid of the calendar and kept up with my LO's appointments myself. It wasn't long after this that my LO progressed to needing full-time care but everyone is different. His home was unsafe for him because of steep stairs so that also played a part in the decision to move him.

francesca.muhlbaier

Hi all. I’m new here and Marymmc sounds just like my experience with my mom. Shes 72 and was diagnosed just 3 months ago. She keeps saying how young she is and doesn’t believe she has a problem… of course I’m reading this is the norm. All she does is watch tv all day. Has lost interest in friends, church or coming over to see my
kids. It’s so very sad. I guess I don’t have anything to add other than I’m with you and wow so glad I found this community to help navigate this.