Repetitive behaviors and obsessions

TaraAggie97

Hi there.  My father and I are still trying to convince my mom to get professional help, but she emphatically refuses.  She is relatively in tune with day-to-day life, but has become obsessed with sticky notes. She writes notes to herself numerous times a day about the same things. She also repeats “that’s all” at the end of every sentence.  My question to you all is - is this typical dementia-related behavior, could it be something else?  

Thanks for the help. 

dayn2nite2

Very typical.  If by "professional help" you mean something like therapy, that will not work for her if she has dementia.

A geriatric psychiatrist will probably be more useful right now, but ultimately if you want a diagnosis she will need to see a neurologist and have testing.

harshedbuzz

Keeping lists/writing reminders is a very common symptom seen in the middle stages of dementia. But it could be something else, so she really should be evaluated. There are certain treatable conditions that can be treated and you would want to rule those out.

Many people with dementia have anosognosia- a condition the prevents those who have it from being able to appreciate that they have experienced a cognitive shift and are not as capable as they once were. Others sense a change in their abilities and will actively avoid medical care in order to escape a diagnosis and the life changes it could bring. 

You might not get her buy-in, for a complete evaluation ever, so you may need to work around her to make it happen. Some families create a "fiblet" about needing a well visit to remain on Medicare, to refill a prescription or even for her help to accompany someone else to their appointment. Of course, you would want to loop in her PCP ahead of time with a bulleted list of concerns and behaviors to avoid "throwing her under the bus" during the appointment. 

HB

Jerome Likes Pie

Hi!  It sounds like very typical dementia behavior, but I would recommend getting an official diagnosis, including what stage she is in if applicable.  The steps that we took:

1. PCP (General Practitioner) administers short memory test and refers LO to a neurologist if she doesn't pass or is borderline.

2. Neurologist does a brain MRI and if there are signs of dementia/Alzheimer's, refers your LO to a neuropsychologist for a 3 hour memory test for a diagnosis.

3. LO takes the 3 hour memory test with the neuropsychologist and is diagnosed.  This was extremely difficult for me to get my LO to go to this, but promising you will be with her, the test will be painless, bottomless ice cream, etc. is worth it.

It is not only important for you to know what she and you are dealing with in order to make plans, but to have the diagnosis report from the neuropsychologist available for your PCP when and if the time comes to make some tough decisions, like removing the car, etc.  I hope this helps.

aod326

Hi Tara.  With DH, he made daily lists of "To Do's" and reminders of certain things, like the name of the town we live in. The lists were pretty much the same every day - and didn't result in anything getting done, but I think helped him feel more in control. That disappeared over time as the dementia progressed.  With DH, he ended almost every sentence with "it's the truth", an expression I'd never heard him use pre-dementia!

Having a diagnosis won't necessarily make a difference, unless she needs to claim disability. I notice that you joined the site in January, so I'm guessing you sense it's dementia. You could get her to see her PCP who could suggest a neurologist or geriatrician.

In the meantime, if the sticky notes are not causing any harm, I'd let her carry on. If it's dementia, you won't be able to reason with her, so spare yourselves any frustration doing that!

Good luck.

Tinman78

Hello Tara. My father was writing notes down wherever he could. He used to be very diligent in writing in his journals but he started crossing off the date on whatever page he opened it up to and writing the new date there, then continuing on the bottom or border of the pages. He even wrote notes in the sides of his bibles about what medicines or other commercials he saw on TV.

I agree that you should define what you mean by "professional help". I am guessing it is to talk to a PCP and get a diagnosis. Giving the reason to ask for accompanying you to "your" appointment may work. My father was officially diagnosed in the middle of the pandemic and his cognitive test was done over video chat. For his MRI I gave the excuse that he should go and help me fulfill his prescription. While there we did the blood test and MRI and an excuse that it was a request of the doctor. You can tell them something along the lines of "Remember? Dr. So-in-so said that they wanted to do a blood test and an MRI from the fall you had last week. You told me that is what he said". Depending on their memory, personality and denial, they may not be willing to admit they don't remember and will go along with it just to prove they remember.

I also recorded (with permission of the doctor) the conversation about the diagnosis to play it back to him later on. That had helped at times to see himself talking to the doctor about the diagnosis, but not remember it. It takes the blame off of you that you are saying something they do not remember.

Keep in mind that if you do get the Alzheimer's diagnosis that it is a terminal disease, but no two people have the same path down that disease. My father's decline was 18 months from flying on his own to rejoining my mother. His long-time friend was in memory care as stage 6&7 for about 6 years before she passed this past year. There are memory medications that can slow progression a little, but there is a maximum limit that those medications work (I was told a max of 12 months and it seemed to be that for him). Also, for my father, any sickness seemed to speed his decline.

If she is not too far along, there is a clinical trial my wife found. My dad was not eligible because he was too far advanced for them to accept.

https://www.nytimes.com/2021/04/22/health/alzheimers-clinical-trials.html

Iris L.

The best thing to do is to educate yourselves.  Read a lot and ask a lot of questions. 

 Iris L.