Where do you start?

HJM26 · October 1

Hi everyone, our family has noticed some extreme changes in our mother. Her mother passed from alzheimer’s/dementia. I’m not clear on the differences.
How do we contact her doctor to evaluate them so that we can somehow help to alleviate some of the symptoms or at least make their doctor aware of the situation.
She thinks most people are sneaky and snooping through her things, planning to embarrass her and conspiring behind her back.
She gets sad, depressed and angry. I have found her sitting in the dark and she stares at her calendar for hours trying to make sense of things. She believes someone keeps changing her calendar, but nobody touches it.
She remembers the past like a sharp tack but current dates and events are confusing. I could go on!
I just need some guidance on where to start as I seem to be the one who my family is waiting on to get the ball rolling.
Thank you!!

caregiving daughter · October 1

First, dementia is the umbrella. Alz, Vascular Dementia, and other cognitive impairments are subsets of dementia. Other conditions can play in as well so it's excellent that you wanting to engage her physician.

A probable diagnosis is typically made by a neuro psychologist; however, your starting point should be her primary. What worked for us is that an appointment was made with the pcp and then a day before, I walked a letter to the office, asking that it be given to the physician, indicating we were concerned about xyz symptoms. We asked that the letter be kept confidential. I believe we walked out of of that appointment with a referral to a specific neuro psychologist along with a script for a specialized driving exam. For driving, they did not pass or fail my mom for her test the first time. It was costly, so thankfully, my mom got angry and refused to give them more money for a second test. Driving stopped.

My mom made it through the first neuro psych exam taking about two hours. She did not do well and therefore, became very frustrated and skeptical. Fortunately, the test was enough to receive the probable diagnosis of mixed Alz/Vascular and she was put on medication, The written report, that she was given but did not at all understand, outlined what changes in daily living were necessary at this point, e.g., no driving, supervision with financials, supervision on medication. I was able to spring the poa's about this time.

My mom was also becoming very difficult. The key for me was taking a four hour course, at a local skilled nursing facility, on Alz given by the Alz Association. When I introduced myself, I sobbed. At the close, I left with education, understanding, and brochures on everything from legal, to respite, to physicians, to adult daycare.

Ask us more questions. The journey is long. Your mother is so fortunate to have you at her side.

H1235 · October 1

Great advice given above. My experience was very similar. Having legal matters handled is incredibly important. I durable power of attorney is a must. If this has not been done, I would suggest to her that it’s just something that should be done for the future, because she is getting older. Most people with dementia have something calling anosognosia. This is the inability to recognize their symptoms or limitations, often to to point that there is absolutely nothing that can be said to convince them otherwise. It’s tough! Pointing out symptoms usually doesn’t go well as a way to convince her will probably not go well. We have a saying here never try to reason with a person with dementia, you will always lose. To get her the help she needs is usually best to just do what needs to be done without consulting her ( I know, ironically that’s what she is paranoid about). In my experience once a person is far enough along with dementia to be diagnosed, they are probably not safe to drive or live alone. If your thinking assisted living you should know that many have a waiting list to get in. They can also be ridiculously expensive. If your going to see a lawyer you may also want to discuss finances. Will Medicaid be necessary, what does it cover in your state, should her house be sold to cover Al, should money be put into a trust, is a prepaid funeral a good idea? ?? It would probably be good to freeze her credit. There are a few that have had loved ones go out and buy a new car when they really shouldn’t even be driving. Because of the anosognosia there will probably never come a time when she can understand the need for more care. This can get kind of ugly. In my opinion safety unfortunately has to take priority over her independence and what she wants. I found that being in al was so much less stress on mom. Managing a house, meals, medication, laundry, cleaning, finances, yard work…. was just very overwhelming for her. I found anxiety medication was helpful, but it took a while to get it figured out. I wouldn’t get your hopes up for meditation that will actually do anything for the dementia itself. I will attach a bunch of resources I wish I would have had in the beginning. Lean all you can, it will help. I hope something here is helpful.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

https://www.creditkarma.com/credit/i/how-to-freeze-credit

https://iona.org/therapeutic-fibs-ok/

https://www.medicalnewstoday.com/articles/confabulation-dementia

https://www.helpinghandshomecare.co.uk/care-advice/what-is-show-timing-in-dementia-patients/