Mother has Alzheimer's

Although the circumstances are not ideal, very glad that you found this forum. Coming from a fellow care giver under 30 to a parent who’s young for their diagnosis, I hope you allow me to send all the good vibes and support I can. I’ve been part of this forum for about two years now since my mother’s diagnosis, and the outpouring of love and support here really makes a huge difference. Please know that while this time period is so scary, you are doing a great job by just doing your best with life right now. If anyone’s going to understand what you’re going through, it’s all of us here.

Sonder247, I'm sorry your family is dealing with this. My brother was diagnosed in March, so this is early days for us. He's age 63, and his MRI was suggestive of ALZ. A few comments struck me as I was reading through.

I'm glad you have a brother to bounce things off of. I have an older brother who lives in another state. He's a logical organized type (we have that in common). Even though not present, he's been good at suggesting resources and tasks to accomplish.

As far as medications, not everyone reacts the same to every perscription. In our case, DB has handled Aricept (generic) well. No reported side affects and and he reports improved clarity. Pre-Aricept he frequently would speak two or three sentences and starting going "um, um, um" and it was as if he couldn't finish the thought. That has gone away for now. He will forget things, and repeat himself etc, but he doesn't seem to get lost in his thoughts anymore. He was extremely happy at the difference it made for him. I hope your mom finds something that will be as helpful.

Vocabulary word - Anosognosia. I think I can now say it correctly. Please note your mom is not in denial about her symptoms. It is a feature of the disease that due to the progression of the disease the person affected can no loner percieve their deficits.

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

Alzheimer's is a challenging diagnosis; EO magnifies the awfulness in many ways. You are all so young to be dealing with all of this— your folks should be looking towards a carefree retirement, and you should be doing all the fun things of early adulthood knowing your parents will be fully engaged in celebrating milestones with you. Instead, you're finding yourself drinking from a firehouse of depressing information with not much in the way of hope.

You said: I think my mom is having more trouble accepting it. She will say things like it is too early for the medication or a support group or to get into planning for the future, but then my dad or I will stress the sooner, the better. I don't how much is her being afraid or if there are things she doesn't remember about it. 

She often seems to think her memory isn't as bad as it is as she is forgetting that she forgot, but she knows she is forgetting things, if that makes sense. 

That's anosognosia as concerned sister mentioned. With my dad, he did recognize that his short-term memory was rocky, but since he could recall random facts from childhood he felt he was just fine. FYI, memory in dementia is LIFO so this is quite consistent with what one would expect. The other piece is that there are other losses early on that are at least as critical as short-term memory— things like empathy, abstract reasoning, executive function and higher order thinking tank early and are often less recognized by the PWD than their memory deficits.

Chug is correct about the legal stuff. Dad will be making the call on doing all this but one piece to remember is that mom is no longer an appropriate choice as his POA going forward— that's best to be you as you are at hand compared to your brother. Ideally a POA needs to be close enough to roll into the ER before they ambulance arrives. Also, I would not recommend, nor would I accept, a co-POA status or split (you do medical/bro does money) with a sibling. This is an effective strategy for insuring your adult children end up as enemies. Dad should also investigate Medicaid planning in the event they don't have unlimited wealth or a LTC policy.

To that end, I would encourage you to have a Plan B in your back pocket should things change drastically. One third of primary caregivers predecease their LO and there's always a possibility for an injury or illness to make the primary caregiver unable to provide care either temporarily or going forward, so you need to have an idea of how mom would be cared for. It's best to tour SNFs and MCFs to be prepared should you need either. Pay special attention to Medicaid status, fees and waitlists.

Medications? There are a few options. The oral medications work by improving function for a time. While they can improve quality of life for some, they don't slow the disease process in anyway it continues running in the background. A lot of people report no real benefit from them, and many discontinue them because of GI side effects.

There is a new FDA approved twice monthly infusion— Leqembi. That's the one that requires a lumbar puncture or amyloid PET scan to qualify for. This does seem to slow the progression somewhat, but the catch is that white men seem to be the group of patients who are seeing improvement. Women and POC don't seem to be getting as much from the medication.

I am in the process of starting the evaluation process with my own mom. My situation is different; mom is almost 20 years older than yours and sadly, this is not my first rodeo so my sense of urgency is not what I would feel in your shoes. When Leqembi came out we talked about how disappointing the results were and decided that if she were ever diagnosed, we probably would not go there given the poor results for women and the risks of brain swelling and brain bleeds. Were she 68, I might feel differently.

HB

https://www.axios.com/2023/07/11/leqembi-azheimers-drug-women-men-efficacy

https://www.nytimes.com/2023/07/06/health/alzheimers-leqembi-medicare.html?unlocked_article_code=1.vE0.B8o1.78q0ojlvnGPp&smid=url-share

Sonder, I can relate to your situation as well. My mom has Alzheimer's dementia and my dad has vascular dementia. I'm finally getting hospice involved but I'm still working on legal and financial issues. It's all so overwhelming.