How do you find help

@LeshaS said:

I am new here. My mother was dx Alzheimers/Dementia. I believe it is early stages, but we do not know yet. We have a more in depth eval on 5/20 w Loma Linda in Cali.

Is the upcoming evaluation a medical assessment at a neurologists/memory clinic or is it more of a neurocognitive testing with a psychologist? Has she already had the Alzheimer's specific testing (blood test, lumbar puncture or amyloid PET scan)? You mention Alcohol Use Disorder; did her initial evaluation include testing for ARDs (alcohol-related dementias)? BTW, it's possible for PWD to have more than one kind of dementia; my dad had WKS (an ARD) and Alzheimer's.

TBH, you (and her sister) probably have a better sense of where she is in terms of disease progression assuming you're spending a lot of time with her. Especially through the evenings and overnights.

My question is, how do we get help? I was told by her insurance to just call around and talk w/ nursing homes to see if they will accept her and if they offer any sort of memory care. There are hundreds.

There isn't much help available for care which is considered custodial rather than medical unless you throw money at it. If she has a LTC policy, it might have some coverage for an in-home aide but be aware of lifetime limits as you will need 24/7 as the disease progresses.

Medicare has a new GUIDE program that offers a few hours of respite for caregivers. It's a break, not a comprehensive care plan. Also, it is only available to those with traditional Medicare at this point. You mention MediCal; if that is Medicaid it might have some care available usually in the form of funding for day programs or some hours of respite each month.

If your mom is being seen by a memory clinic, ask if they have a social worker who likely would know what is available to your mom. An elder law attorney would also know what is available in your state and circumstances. If you don't already have a DPOA, you should see a lawyer about that assuming mom is competent (it's a pretty low bar) and willing to sign. Otherwise, you'll need guardianship/conservatorship through the courts. If you're in another state, it might be best to do that once you get her to your state. My aunt was guardian for her sister and had to go through the process a second time when she moved her from ME to MA.

Also, not sure we want to do that quite yet, would like to bring someone in to maybe help take mom to places to have a more social life. My mom is not one to sit and she is deteriorating fast sitting in the house w/ no where to go. There is a dual dx of alcohol abuse, so in the last year she has gotten 2 DUI's and a PI. We have removed keys and her license was finally suspended.

Even if you're not ready to place mom yet, it's best to figure out which MCF and SNF (for post-hospital rehab— PT, OT, SLT and substance use) you'd want to use. It's best to sort this out ahead of time and find a couple acceptable to you in the event of an emergency. There may be wait lists. If she'll be admitted using Institutional Medicaid (vs regular) getting a bed might be complicated as not all facilities accept Medicaid and even those that do have very limited beds that typically go to current self-pay residents who have run out of funds.

I can't speak to whether your mom has a mixed dementia diagnosis, but if she does have an ARD complicating things, you may find it harder to find a place willing to take her. This population has a reputation for behaviors and some places cherry-pick their residents for the most pleasantly befuddled. Dad was rejected by mom's first choice.

She asks the same question all day all night over and over - can I go to rehab? why am I here? Why can't I drive?

That's the nature of dementia. People with dementia have poor short term and working memory. Information is stored in a LIFO manner— they might recall events from their youth or 10 years ago with clarity but can't recall that they've already asked the question. But dementia is more than poor memory, it also causes things like poor executive function, a lack of empathy for others, anosognosia (inability to recognize their cognitive decline) and apathy which is especially pronounced in some ARDs.

She has been placed on alot of legal requirements due to the DUI's and it seems as though they didn't take her medical condition into consideration.

This is a double-edged sword. Assuming she had a firm Alzheimer's diagnosis in her medical record at the time of sentencing, her DPOA could be held liable for allowing her to drive.

Can she leave the state, or does she have some sort of mandatory reporting?

I live out of state, she has refused to move here so my aunt has been helping, but she is older and this is wearing her out. We are going to allow her to go to rehab, again, and if they will keep her that will allow her to get some help for maybe 30-90 days, after that, I told her she will have to move her w/ us.

At the risk of being harsh, the person with dementia doesn't really get a vote here. Unless she had the foresight to purchase a robust LTC policy which would allow her to stay at home, she made a wish not a plan. This is a progressive condition. She will get worse because of the disease process destroying her brain even if you were to find a companion or program to keep her engaged socially. This could take upwards of 10 years; that's a mighty big ask of an older sister.

IMO, a PWD needs to live with/near their POA. As the disease progresses, there will be falls and other medical events in which you will need to meet the ambulance at the local ED. You don't want her there alone. Facilities don't send an aide with them.

Do you expect rehab to be successful. When dad was initially diagnosed I did look into a special psych hospital for geriatric patients that had an alcohol rehab program for seniors specifically but both the director and I realized dad's dementia, specifically his anosognosia, poor short-term memory and impaired executive function, made him unlikely to learn new ways of thinking and recognize when to apply those strategies. I would approach this with realistic expectations.

We do not have extra funds to pay for ppl or a memory facility. She is 73, Medicare and Medical -How can we get help to maybe come in a few times a week and help her w/ social activities, etc. any ideas? does this insurance suggestion seem reasonable? Call around and see who will take her ??? then they call insurance to organize payment arrangements?

I would speak to the practice's social worker about this. If that person can't help or doesn't exist, then a certified elder law attorney would be your best option. Medicaid may have funding for a day program a few days a week. An in-home aide is less likely for socialization.

That said, placement might be the best option if the alcohol use is still an issue and your aunt is older. A good facility will have staff trained on dementia and dementia-informed activities to engage their residents and help them feel successful. Dad's place has something for everyone— games, matinee movies, exercise classes, crafts and musical programming. Many facilities have a social worker or staff person who is familiar with qualifying a person for Medicaid.

HB