Mom with Dementia...convincing her to move into Assisted Living

TechieTechie

Hi, new to the boards, hoping for some guidance

 Backstory

Mom is 80 y.o female with multiple chronic diseases (COPD, Stage 3 kidney disease, Seizures, recurring Stage 1 lung cancer, aphasia/Dementia and Wernicke's due to sustained periods of heavy drinking. She was recently diagnosed with Moderate dementia (13 on MoCa, down from 20 5 years ago). Lives alone with almost no support system or friends, 1 friend walks her dog, that's it. We tried previously to get some skilled nursing/aide inhouse, but she's in a small enough town that the options are really non-existent. 3 falls in the last year.....one could have been life threatening (she fell taking the dog outside and was on the ground, in the snow, for almost an hour). Still drives, though final neuro MRI/diagnosis and driving test (to likely take away her license) were recently postponed (see below).

 Brother and I are 90 minutes away (sister in neighboring state, disabled)....and we are fairly certain we have a Durable POA (digging up signed copy now).

We've previously voiced concerns about her living on her own and during a summer 'vacation' with me, she toured a wonderful continuum of care facility this summer. Although she doesn't remember it, she agreed to go on the independent living waiting list. During the Fall (once she was back home and comfortable), she changed her mind and insisted she was not going to go into AL. I think she is digging in to maintain her independence and to preserve her investment portfolio for our inheritance (my sister is on SSDI and honestly could use the inheritance)....although we have all vociferously told her (more than once) that we don't care about the money and want her to spend on herself.  She has enough funds to pay for about 8 years of AL in a VERY nice facility before her savings are depleted (and potentially have to move into a lower cost facility that would be covered by her monthly SSI check.

Current State

Currently in skilled nursing facility (SNF) after a stint in the hospital due to acute kidney failure due to her drinking (we think she fell off the wagon during COVID) and a UTI. Physically, save for balance, she's strong (and skilled nursing not needed). However, her cognitive function is bad (SNF SLUMS was 12?) and if she doesn't improve quite a bit, the SNF social worker said she would not qualify for transfer to an independent living situation (they want SLUMS above 18), only AL.

Our concern is that if we don't convince/force her into AL, she'll return home, start drinking again (because she's lonely, sad and bored) and we'll repeat this cycle AGAIN, potentially with more dire results.

Current Questions

 -Do skilled nursing facilities often release dementia patients to go home w/o support? (with the exception of the fall risk (balance), she's still fairly strong when healthy and not drinking). What's the process here?

 -Does reasoning with a parent ever work in these situations? If so, which approaches/negotiations have worked with you all?

-On her old POA (that we are digging up) my brother is the POA. He is not a 'strong armed' as I am and may be unwilling to use the POA to force him into AL (we were in the process of changing the POA to me this summer, and the paperwork was never completed. I would have no problems exercising this authority). Strategies to help my brother 'see the light' and force the decision to move mom into an AL facility?

Thank you....

harshedbuzz

TechieTechie wrote:

Hi, new to the boards, hoping for some guidance

 Backstory

Mom is 80 y.o female with multiple chronic diseases (COPD, Stage 3 kidney disease, Seizures, recurring Stage 1 lung cancer, aphasia/Dementia and Wernicke's due to sustained periods of heavy drinking. She was recently diagnosed with Moderate dementia (13 on MoCa, down from 20 5 years ago). Lives alone with almost no support system or friends, 1 friend walks her dog, that's it. We tried previously to get some skilled nursing/aide inhouse, but she's in a small enough town that the options are really non-existent. 3 falls in the last year.....one could have been life threatening (she fell taking the dog outside and was on the ground, in the snow, for almost an hour). Still drives, though final neuro MRI/diagnosis and driving test (to likely take away her license) were recently postponed (see below).

It doesn't sound like she should be living at home alone. You need to take steps to stop her driving immediately. I would disappear her car and tell her it's in the shop for a recall waiting on a part. She could kill someone. She could be sued and lose everything. My mom (who doesn't have dementia) was sued for an accident in the last couple of years and it was awful. Had it been my dad, the insurance would not have covered him because of his diagnosis (call her agent about this) and by the time the suit made it to court he would have been completely unable to participate. In fact, because of COVID-postponements, he would have died in the interim. 

Was she formerly diagnosed with Wernicke's alone or the Wernicke-Korsakoff's? Was she treated for the condition or just advised to remain abstinent? While it is possible to improve cognitively a bit with IV treatment, it doesn't sound like she has returned to a baseline that would allow her to be independent in the community.

 Brother and I are 90 minutes away (sister in neighboring state, disabled)....and we are fairly certain we have a Durable POA (digging up signed copy now). 

Since your brother doesn't seem to have the sense of urgency you do, I might consider obtaining guardianship in order to keep her safe by making the necessary care decisions. I would talk to a certified elder law attorney in your state to discuss this. They should also be able to help you do Medicaid planning which might include funding a Special Needs Trust for your sister now. 

We've previously voiced concerns about her living on her own and during a summer 'vacation' with me, she toured a wonderful continuum of care facility this summer. Although she doesn't remember it, she agreed to go on the independent living waiting list. During the Fall (once she was back home and comfortable), she changed her mind and insisted she was not going to go into AL. I think she is digging in to maintain her independence and to preserve her investment portfolio for our inheritance (my sister is on SSDI and honestly could use the inheritance)....although we have all vociferously told her (more than once) that we don't care about the money and want her to spend on herself.  She has enough funds to pay for about 8 years of AL in a VERY nice facility before her savings are depleted (and potentially have to move into a lower cost facility that would be covered by her monthly SSI check.

I would be looking at a secure facility in order to keep her from obtaining alcohol. Unless the AL is a high acuity one specifically for PWD, I would seek out a true MCF where staff should be aware and trained on the ins and outs of Wernicke's. My dad had full-blown WKS as well as Alzheimer's. You may find placing her a challenge as these patients have a reputation for being extra and some nicer facilities cherry pick. Mom's first choice wouldn't take dad.

Current State

Currently in skilled nursing facility (SNF) after a stint in the hospital due to acute kidney failure due to her drinking (we think she fell off the wagon during COVID) and a UTI. Physically, save for balance, she's strong (and skilled nursing not needed). However, her cognitive function is bad (SNF SLUMS was 12?) and if she doesn't improve quite a bit, the SNF social worker said she would not qualify for transfer to an independent living situation (they want SLUMS above 18), only AL.

Our concern is that if we don't convince/force her into AL, she'll return home, start drinking again (because she's lonely, sad and bored) and we'll repeat this cycle AGAIN, potentially with more dire results.

You can't reason with a person who has a broken reasoner. Even if you could convince her, she'd likely forget. As dPOA or guardian, you make the care decision based on her needs at their worst. You have the opportunity to move her directly from the SNF which would be easiest all around. You could even create a fiblet about it being a nicer rehab until the doctor says she can go home.

Current Questions

 -Do skilled nursing facilities often release dementia patients to go home w/o support? (with the exception of the fall risk (balance), she's still fairly strong when healthy and not drinking). What's the process here?

I can't speak to this. My dad was released home (a new apartment near me) under mom's care. The OT and social worker did tour the apartment to be sure it was appropriate for him.

 -Does reasoning with a parent ever work in these situations? If so, which approaches/negotiations have worked with you all?

No. 

We made the decision and we made it happen. Dad was livid, but home wasn't working for our family. I had to take him from home-- which is harder-- so I told him he was seeing a new doctor and needed more rehab. Rinse and repeat. 

-On her old POA (that we are digging up) my brother is the POA. He is not a 'strong armed' as I am and may be unwilling to use the POA to force him into AL (we were in the process of changing the POA to me this summer, and the paperwork was never completed. I would have no problems exercising this authority). Strategies to help my brother 'see the light' and force the decision to move mom into an AL facility?

I don't know how to convince your brother. Normally I advise those who think a LO is OK home alone to visit them for a couple days. Have you seen an attorney yet? With a MoCA of 13, she may not be deemed competent to make the change.

Thank you....

CanyonGal

We convinced my mother to move into an assisted living facility after a bad fall. We said it wasn’t safe for her and she couldn’t survive another fall like that. She fell walking the dog and paperboy found her. She lived alone.

 She could not drive because of a dislocated intraocular lens (cataract surgery) from the fall and we insisted that had to be fixed first. Her driver’s license expired and she would have to pass the eye exam at the DMV since she was over 80. Her doctor told her she couldn’t pass the eye exam. She sold the car after it sat in the parking lot for 9 months. (This was during COVID and the facility often was on lockdown.)

We (and her doctor) advised her to give up drinking. Drinking can make you unsteady and then we have another fall. She was petrified of having another fall.

I had DPOA and my sister was her health surrogate. We could not force my mom into an assisted living facility. Those documents can be revoked by my mother at any time, but we don’t tell her that. A doctor must state she is incompetent if you move towards guardianship, which is time consuming and expensive, and most lawyers will advise against it for a number of reasons.

After the fall, the rehabilitation center had to release her due to Medicare. Some facilities will work with you if you are actively looking for a place and it is considered dangerous to let her return home. We arrived from out of state to stay with her until she was placed in Assisted Living.

Most elder adults do not want to give up their independence. For some, going into any type of care means this is where they go to die. Tell her assisted living is like living in the dorms at college. Preconceived notions of nursing homes may need to be changed. Plus living with a change in homes is difficult at their age.

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MN Chickadee

Since she is currently on rehab and post hospital care this is your opportunity to get her placed at an appropriate level of care for the long haul. Getting a person to go directly from the house is so much worse. We usually have to use fibs and call it temporary. A step down rehab, a better place the doctor recommended for her to get stronger. When she asks when she can go home be vague, maybe next week, when the doctor clears you. Telling a PWD you are now moving them permanently to AL or MC is usually a nonstarter. Reasoning is useless, waiting for permission or buy in us useless. That part of the brain is too damaged by the time this kind of care is needed. Look up anosognosia. PWD and people with other brain issues can have it. Not in denial, but truly believe they are fine because the brain is too damaged to process its own deficits. 

I would speak to an  elder law attorney about options regarding POA/brother, and the discharge planner at the SNF about what happens next. I think you are probably right that allowing her to go home will result in repeating this experience and eventually it won't turn out well. Your brother should consider his duties as the power of attorney for an incapacitated adult and how he will feel if something tragic happens as a result as his inability to perform his duties and make hard decisions. It is a tough job but one that has to be done.  It sounds reasonable that given her current medical diagnosis and records they would not discharge her home without care. But if your brother the POA is giving blessing for her to go home they won't have a choice. Given her combination of other health issues and dementia I would suggest at minimum a high acuity AL that is locked and dedicated to dementia care, otherwise memory care stand alone facility. The terms can vary by state licensing requirements and location so make sure it isn't the hospitality mode AL where they check on your person once a day at most and do housekeeping twice a month. AL can mean a lot of things and generally lack the supports and structure a PWD in later stages needs, plus she has the seizures and other things that need the close medical oversight MC offers. 

Good luck and let us know how things go. This transition is a very difficult time in caregiving, perhaps the  hardest. Hang in there. 

TechieTechie

Thanks all.

She's not an abusive drinker at all...she rarely drank until her 2nd marriage to a functional alcoholic and she's had years of abstinence. Family firmly believes she's depressed, lonely and cannot/will not develop the skills to cope (her father was an alcoholic as well) without significant mental health inventions (that may or may not take given her dementia).

@Harshed, thank you for your detailed replies. That's precisely what we were planning, was to get her license suspended. We'll have to work with her current stable of doctors to work with the DMV to revoke her license. She developed Wernicke's during an inpatient surgical stay when the facility didn't appropriately manage her detox (approx 12 years ago)...this was ID'ed by the family post-release. Her only long term manifestation of Wernicke's is the mental status (we've supplemented her vitamins w. extra Thiamine). Hard to tell what her new baseline, w/o drinking is. But bottom line, if she continues to drink, I think both her dementia and kidney failure will progress, rapidly.

The challenge for us is that there are very few good AL places in my area. And the top 2 don't accept Medicare (and we'd have to spend down her retirement funds). Sister has a special needs trust already and on SSDI, so she's covered, financially, for daily living. I was in the process of getting all of Mom's paperwork reworked with a local elder care att'y, but Mom's re-occurance of lung cancer (plus dealing w my Dad's estate) put this on the backseat. I don't think we are ready for a locked ward (sober, she is very highly functioning) but I get where you are going. And agreed, we want to move her directly from a SNF to AL. Family is crystal clear that if she goes home, it's going to be impossible to get her into AL.

@Canyon, thank you for sharing your history, helpful.

@Victoria, good points...if my brother isn't willing to have her committed, I can ask to take over. My SIL's Mom was in a similar position (tho a lifelong raging alcholic) so my brother, luckily, has been thru this rinse/repeat cycle with his wife's mother. Hopefully he's more willing to step up to the plate then I'm giving him credit for. We didn't find out about the drinking or seizures until this most recent hospital admit (she admitted in the ER, after I found bottles stashed, that she had been drinking and that she had a seizure). All of these point to if she's released to home (with no changes to support) she'll start drinking again, falls, seizures, the whole 9.

Thanks again

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Anonymousjpl123

Techie techie I just wanted to add to others that you are 100% right in the steps you are taking. I know how hard it can be to convince a person with addiction/mental illness or someone just generally difficult to move into AL or MC - especially if they want to preserve their independence. So so similar to you - we had discussed it before, but she either wouldnt remember or would say “well let’s do it when I’m ready.” When I finally had to tell my mom it was no longer an option, she did finally agree to visit places and ultimately chose someplace that has worked out spectacularly. However, in your moms condition, she may not be able to visit or even have a say. You know her best, you can trust your gut on this one.

The process of getting “here” - with my mom in an AL/MC facility - was an absolute nightmare, but so so worth it. We did have to “strike while the iron was hot,” so to speak. In her case there were a series of minor catastrophes that made convincing and, ultimately, forcing the issue easier. 

All that being said, doing this with someone who is challenging is like, as my SIL put it, “caring for a bottle of nitroglycerine.”

And so glad you posted here. I have gotten a ton of great advice that has helped tremendously.

harshedbuzz

TechieTechie wrote:

She's not an abusive drinker at all...she rarely drank until her 2nd marriage to a functional alcoholic and she's had years of abstinence. Family firmly believes she's depressed, lonely and cannot/will not develop the skills to cope (her father was an alcoholic as well) without significant mental health inventions (that may or may not take given her dementia).

I hear you on this. It sounds as if your mom's alcohol use disorder is not a typical presentation and could be exacerbated by the dementia. She's already outlived the life expectancy of a typical female alcoholic by almost 20 years for one thing. Also, when your short-term memory is shot, it's hard to make the choice to drink responsibility when every drink is the first of the evening. 

My dad was not only a very functional alcoholic, he didn't start drinking more than a couple times a year until his mid-50s when my sister was dying and he was furloughed from teaching and started a business that paid more with a lot of time off. 

@Harshed, thank you for your detailed replies.

I tried to leave you a detailed reply yesterday and the site swallowed it whole. I will try again.

 That's precisely what we were planning, was to get her license suspended. We'll have to work with her current stable of doctors to work with the DMV to revoke her license.

I would disappear the car. In reality-- especially angry-dementia reality-- one doesn't need a license to drive. Plus, the visual of the car will be a trigger to ramp her up. Tell her it's in for a safety recall and leave it. 

We were fortunate that both dad's neurologists told him he couldn't drive which allowed us to be his ally in the unfairness of it all. But I understand one can't always rely on a doctor to be the heavy. I wouldn't count on a doctor contacting the DMV even in states that mandate it. A few years ago I read a piece in the NYT about dementia and driving in which the head of the memory center at which dad was seen stated that he contacts the DMV "rarely, maybe once or twice a year". 

She developed Wernicke's during an inpatient surgical stay when the facility didn't appropriately manage her detox (approx 12 years ago)...this was ID'ed by the family post-release. Her only long term manifestation of Wernicke's is the mental status (we've supplemented her vitamins w. extra Thiamine). Hard to tell what her new baseline, w/o drinking is. But bottom line, if she continues to drink, I think both her dementia and kidney failure will progress, rapidly.

This sounds a little confusing to me.

The way I understand it from dad's doctors, Wernicke's is the initial psychosis from a Thiamine deficiency that is usually caused by extreme alcohol use. It can also happen with certain cancers, AIDS, starvation, eating disorders, bariatric surgery and extreme morning sickness. There seems to be a genetic component. This is unrelated to detoxing, which of course, is best done under medical supervision.

I was told treatment for Wernicke's was IV Thiamine. When dad was in the ER, the doc drew his blood early on and gave IV Thiamine in the first hour we were there. He got it 4 times daily for 6 days and was then given OTC supplements. He went into a SNF rehab for 7 weeks during which time his confusion cleared a great deal. Dad also had early/midstage Alzheimer's with a lot of cognitive reserve which sometimes gave those caring for him a sense that he was doing better than he was. FWIW, aside from the first couple days in the hospital he scored pretty well on the quick screening tools like SLUMS, MMSE and MoCA. I was there for the last MoCA he took about 6 months before he died where he scored 24. He bragged about it the whole way down to the valet stand where he toddled off while my back was turned and got into an SUV being driven by a startled little old lady. 

In terms of harm from drinking, I would be more concerned about the impact to her ADLs and disease progression than her kidneys at stage 3. If she has unreversed memory issues from her Wernicke's, she's likely moved onto the full Wernicke-Korsakoff's Syndrome. This mean continued drinking would be more detrimental to her than it would be a typical person. There is no safe amount for her to drink. 

From Korsakoff Syndrome: Clinical Aspects, Psychology and Treatment | Alcohol and Alcoholism | Oxford Academic (oup.com)


The cornerstone of any rehabilitation programme is abstinence. There is little point discharging a patient home if this means that he/she will continue to drink and pose an increasing burden on their carers. Those with a milder form of the syndrome are more likely to drink again, with potentially disastrous consequences. Korsakoff patients have a reduced tolerance to alcohol and are at high risk of developing alcohol-related injuries and further Wernicke–Korsakoff episodes.

The challenge for us is that there are very few good AL places in my area. And the top 2 don't accept Medicare (and we'd have to spend down her retirement funds). Sister has a special needs trust already and on SSDI, so she's covered, financially, for daily living. I was in the process of getting all of Mom's paperwork reworked with a local elder care att'y, but Mom's re-occurance of lung cancer (plus dealing w my Dad's estate) put this on the backseat. I don't think we are ready for a locked ward (sober, she is very highly functioning) but I get where you are going. And agreed, we want to move her directly from a SNF to AL. Family is crystal clear that if she goes home, it's going to be impossible to get her into AL.

I am sorry for the passing of your dear dad and all that you and your siblings have on your plates. It's a lot. 

The bad news is that Medicare doesn't funding custodial care. Your mom is going to have to spend down her assets paying for her care with Medicaid as a safety net. A CELA can advise what you can and cannot do in the 5-Year-Look-Back and may have some ideas about which facilities are good in your area. Also, in some states, Medicaid only funds SN beds, so if your mom doesn't bed that level of care it wouldn't be covered.

If there's a possibility of Medicaid in the future, I wouldn't bother to even tour places that don't accept it. The dirty little secret in the LTC industry is that many facilities operate on a business model that requires families to pay out-of-pocket for 2-3 years before converting to a Medicaid bed. These beds are limited and priority goes to those who have already spent down their assets in a self-pay bed.

The other reality is that many of the "fancy" corporate facilities cherry-pick their residents accepting only the well-groomed and pleasantly befuddled. With Wernicke's in your mom's medical record, you may not be offered a spot. Ask me how I know. WKS has a reputation for certain behaviors (incontinence tends to come earlier and many with WKS "smear") than many places would prefer to avoid. I was open about dad's diagnosis when touring; my top 2 choices took a real matter-of-fact stance on caregiving for those with WKS. TBH, it was the only time in advocating for dad that I felt like we weren't being judged for him being a drunk. Mom's first choice didn't offer him a spot. 

Good luck to you.

HB