My mom just got diagnosed yesterday, please help

mina22

Hi everyone. My mom is 69 and was just diagnosed with Alzheimer’s yesterday. The neurologist did not give me any information on what stage she’s in but I want to be prepared and know what’s coming.

She is mostly still functional, she can cook, do dishes, shower, use the restroom, walk around independently. She remembers who she met with throughout the day. But she doesn’t remember what she ate for her last meal, what the date, month, or year is, my birthday, or things that I tell her just a few minutes ago. She will cook food and forget she cooked too. She doesn’t remember the medicines she has to take or if she even took them that day. She sleeps a lot more in the day and feels confusion often. However, her personality is intact and she is able to communicate and socialize just fine

I believe this means she’s still in the early stages but I want to know what comes next.

how quickly should I anticipate changes in the stages? She has been struggling with cognitive decline for a couple years now but just now got the diagnosis.

we are also considering the infusion medicine (lecanemab) to help slow down the progression but I wasnt sure how effective that is?

the doctor also prescribe donezepil but she has a stomach ulcer so I’m not sure if it’s even safe for her to take?

im an only child and im really struggling with making all the decisions on my own and helping her. I really want to help prolong the early stages as much as I can so she can stay alert and independent.

i just feel so shattered right now. My mom is my everything and I feel so isolated and don’t know how I’m going to get through this. Please give me all the suggestions you have that would help me keep her in this early stage for as long as possible.

thank you so much.

M1

Welcome to the forum, you’ve come to a good place for advice and support.

under the sidebar to the right, under Groups, is a collection of good information for new members including staging tools. If she is unable to remember her medications and whether she’s cooked, she probably is getting close to not being safe to live alone (much less drive). These are very difficult changes to make, but safety has to be your first concern. You are correct that many people don’t tolerate donepezil because of GI side effects and vivid dreams. Unfortunately women do not seem to benefit from the newer IV therapies as much as men, and they are very difficult to administer.

the other thing you need to do right away if not already in place is to be sure you have power of attorney for healthcare and finances. A certified elder law attorney can help with this, look at nelf.org. This is critical, because you may have to change her living situation against her will. Read about anosognosia too, she may not be able to appreciate her deficiencies.

Anonymousjpl123

in addition to making sure you have Power of Attorney, and medical power of attorney, in place, it would be great to start exploring different places for support in her care. Even if she doesn’t need them now, you will learn so much if you visit some memory care facilities and adult day care facilities for people with dementia/alz.

I have found Tam Cummings’ stage checklist

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

to be very helpful in preparing for what to expect, and gauging where my mom is.

my mom was always super social and still is, but last week she scored 15 on her mmse. She can’t remember anything anymore and has delusions. Some people progress slower or more quickly than others. But ask anything you want here. People will always try to answer, and help.

SusanB-dil

Hi mina22 - welcome to 'here', but sorry for the reason.

Yes - getting the paperwork in order is important. DPOA (durable power-of-attorney) and the medical HIPPA accesses (medical proxy), and a will. The HIPPA POA is not the same as just being named on the medical records, it will allow you to make the major decisions for her down the road. With MIL, the phrasing for the medical proxy is included in the DPOA.

Is there someone to monitor that she is taking her meds correctly? Also eating properly and that her food is not expired (do check the fridge and pantry). If she is still driving, she should probably not.

'this' is hard, and yes, it is upsetting! as @M1 has indicated - to the right sidebar are helpful resources and suggestions... A lot of information here on the forum and: Dementia Resources

simplebender

Mina22...I'm so sorry you are here and so glad both at the same time. There are a lot of folks here to listen and support you through this journey. Each journey is different and the more you know the better prepared you will be....I've been documenting my mother's journey for a while; if it helps please follow along....

http://simplebender.com/2023/09/27/joy-in-alzheimers/

http://simplebender.com/2023/10/10/joyinalzheimers-episode-1-harsh-reality/

hmmgreschner

Hello,

I am also an only child and moving my mom into memory care this morning. She was diagnosed with early onset Alz. about 6 years ago. It is so hard to shoulder the weight of the care and the decisions. I was able to find a study that my mom participated in for about 4 years. There wasn't any medication involved, but a study over time. The best part of it was a free yearly MRI, CT scan, and cog. tests. This helped me know where she was and how things were progressing. Of course, things can change quickly or slowly, but this might be something to look into? I also wish I would have looked into memory care years ago.

I am so sorry you and your mom are going through this. You are not alone.