Seeking Advice on Initial Steps

ConcernedChild12

My mother is 80 years old and lives with my father who is also 80 years old. Since the beginning of the year, she is starting to show the initial signs of memory loss. She often repeats herself and is unable to retain very much information in her short term memory. I am reaching out for advice on any initial steps I should start to take and/or to gather resources on how to start the wheels in motion to get her some help. Note that I had an initial conversation with my father a few weeks ago and found him relatively closed off and unwilling to engage in a dialogue. Any help you can provide would be greatly appreciated.

H1235

Welcome. Do you have hipaa rights? You might want to consider sending/ or bringing in a note for the doctor with your concerns. If your dad is not receptive, maybe try a casual approach. Let’s see what the doctor thinks, it can’t hurt, I’m probably just worried about nothing, but it would make be feel better. There are treatable reasons for memory loss. Maybe this hope might be enough to get your dad onboard. Are legal matters in order? A will, living will and a DPOA. Again I would not suggest this is because of her memory problems (that will upset everyone). I would just make it a vague, “you’re both getting older and this is something that should be done”. It would be good to have all this for your dad as well. You would want to make sure they don’t name each other. I would think a good elder law attorney would recommend this as well. There are so many symptoms other than memory that many are not aware of. My moms memory wasn’t too bad, but her executive functioning and decision making were horrible. I’ve attached a staging tool that might help you identify some of these other symptoms.

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

ConcernedChild12

Wow, thank you so much. I just got off the phone with my cousin who is a few years older and recently dealt with his mother passing. He made many of the same recommendations. I truly appreciate you taking the time to share your thoughts and I will definitely check out this link.

Anonymousjpl123

Great info from @H1235 above. I will just add that my mom was in that stage when I got involved and this site was incredibly helpful. I called that Alzheimer’s association hotline (#on this site) and they said it was absolutely the right time to start making plans. Starting to get things in place now - look into care options, figure out finances, power of attorney (one thing at a time, of course ☺️) will make it so much easier later, trust me. You have come to a good place. You’re not alone in this.

sandwichone123

Fivewishes.org has great resources about how to start the conversation about health care decisions, and I'd just package DPOA along with that: the things we need to deal with as we get older.

harshedbuzz

@ConcernedChild12

Cobbling onto the excellent advice you've had from others—

It is imperative that's mom's PCP start the screening to rule out other causes for these symptoms. Having been a dementia survivor with my dad, I was beyond stressed when my mom started with the behaviors you are describing. Dad had mixed dementia, ALZ and WKS; the latter is alcohol-related and reversable to a degree with treatment and an abstinent lifestyle. As the result of mom's denial, he wasn't diagnosed until fairly late. Had he been diagnosed earlier, when he still had the cognition to chose and work on sobriety he could have had a better QOL for a decade before his Alzheimer's symptoms became problematic.

I didn't expect another "zebra". At 86, I expected that mom's poor short-term memory, confusion and word-finding would be early dementia. I started with her PCP who did a quick MMSE (only 3 out of 10 questions asked), an MRI and some bloodwork. She did ok only the MMSE (dad did freakishly well on this right up until 6 months before he died), the MRI wasn't remarkable but her blood test for Lyme Disease was positive. Once treated, her memory and focus improved a lot. I still suspect there's some cognitive shift happening but she's a lot more herself.

It sounds like dad may be your bigger problem than mom in this. When my dad had dementia, mom was not only in denial she was obstructive. I spent a decade trying to get her to share concerns with their doctors. I can see where this might be even worse if the dad in question is a hold-over from the Silent Generation who doesn't take to taking advice from a child.

You could reach out to her PCP about what you are seeing behind their collective backs. I note via snail mail ahead of her next visit. Or perhaps you could take mom yourself after cueing the doctor in about your concerns. While there, see if you can get mom to sign a HIPAA form so you can legally communicate with the doctor.

The legal aspects are as important as the medical ones. Assuming dad is cognitively OK, there's no reason he can't be her POA with you as successor agent. Your mom should not be his. The bigger piece is that you need a robust Plan B in the event dad becomes ill, injured or is among the 1/3 of caregivers who dies before their LO.

What do you mean when you say "get her some help"?

Do you mean treatment? For Alzheimer's/dementia there isn't much out there in the way of treatment. There are some oral medications that can help some PWD function day-to-day a bit better, but they don't slow the progression of the disease, they aren't effective for some, and many can't tolerate the side effects. There are newer infusions, but they have serious risks and don't seem to work well for older people or women in general. At best, the seem to prolong the earliest stage of the disease for and average of about 8 months.

Or do you mean someone to come in an assist her with her IADLs like cooking, cleaning, budgeting? For most people, this is something one hires either privately or via and agency. This would require dad agreeing to have strangers in the home (assuming mom doesn't throw a fit herself) and paying $25-40/hour out-of-pocket.

HB