Long Term Care and Dementia

[Mike Chance in Iowa]

Looking for input on this subject from those with experience or knowledge in LTC policies. Mother-in-law was diagnosed with dementia awhile back. We moved her into a Senior Assisted Living Facility last year after she flooded her apartment. She is still mobile and dresses herself and keeps her studio clean. She eats her meals in the dining room but can make a peanut butter & jelly sandwich. She cannot manage her medication routine and the facility brings her meds multiple times a day. She will ask the same questions over and over within minutes. She is unable to manage her medical, financial and daily decisions. She has difficulty answering what her name is and tells a long story on how her name changed at baptism and marriage, yet never really directly answers "Jane Doe." She has difficulty with time. If we visit her directly after her lunch, she will tell us she needs to get ready for dinner - which is in 4 hours. The list goes on and on.

We have been attempting to initiate a claim for her LTC since January 8 and have been receiving the run-around for months. It took us 3 months for them to approve Power of Attorney. In March, they finally sent out a representative to do a cognitive test on her which was so incredibly simple, it was clearly designed to deny any cognitive issues. (The nurse testing her even commented on how she had not seen a test like this.) Not surprising, when calling them last Friday to ask what is the status of the claim, the out-sourced foreign call center person said her claim was denied based on their evaluation. They never bothered to contact her doctor or read the letter from her doctor.

Mother-in-law's LTC policy has a benefit eligibility criteria of: You need substantial assistance from another individual to perform at least 2 of the Activities of Daily Living due to loss of functional capacity; OR You need substantial supervision due to the presence of a severe cognitive impairment.

The way my LOML and I read this, it means you are physically incapable of eating/dressing/bathroom/mobility OR you have cognitive issues. It does not mean you have to have dementia and no longer be able to dress or feed yourself. Is that correct?

We plan to appeal their determination, but we are not certain if submitting the appeal form, with a document listing all the cognitive issues she is having, and her doctor's cognitive assessment, and letters from two doctors will be enough. Considering how difficult this LTC company has been to deal with all these months to even receive paperwork to initiate a claim, we think they are going to come back with some other reason to deny it so they can keep the money for profit.

Any advice on how to deal with this or is she truly not "severe" enough in cognitive decline because she can still dress and feed herself?

[Jeff Roltgen]

My BIL was able to feed and dress himself until pretty much death. He had no LTC policy. Your MIL is displaying similar behavior, and he was of similar competency within 6 months leading up to his passing. While we had no claims to process, I can tell you getting him into a facility was 12-18 month wait. Until he started having seizures. Landed in hospital - ready to send him home 3 days after anti-seize meds seemed to have things under control. Couldn't get him to the door of the hospital to leave before yet again, seizures began. After 10 days of hospitalization, they placed him in a home, as they determined we were no longer able to care for him after 5 years in our residence, based on special meds/observation needed and lack of wheelchair accommodations, etc. Prior to that, we were given lip service and put on a waiting list, as far as getting him into a facility. Seems there's a trigger in the system somewhere, and they need to see it hit before proper action is taken. Hospitalization makes a very big difference when trying to place someone into a memory care facility.

What I can say about a LTC policy, which naturally under the circumstances we were curious about ourselves, it looked like an insurmountable expense, like $650/month for the two of us, payable until we pass from this earth. Continued communications with that agent revealed that a year after our inquiry, a policy was no longer available, as they were over-sold and over-obligated to pay, and suspended issuing new policies. In light of this, it appears your carrier has likely a similar scenario, and may indeed push back as hard and for as long as possible, due to the excessive drain these policies generate once payout begins. Just my opinion, FWIW.

I feel for you, as this is very tough stuff to deal with. I hope not needed, but in establishing power of attorney/executor status, you'll need a lawyer anyhow, and perhaps you may find their assistance valuable as you smooth out this process of dealing with your in-law's current stage of the disease. Sometimes a simple show of authority from your end may prompt a change of tune from the insurance company, as this sounds like it's right on the edge of them acting in "bad faith". Sometimes, only a compassionate, local legal counsel can help you.

You have my sincerest sympathy, and I wish you and your spouse emotional strength during this stage of mom's life.

jeff

[Mel Fulks]

I’m sorry ,that’s a terrible thing. It’s plaque in the brain….so I’m brushing mine with Crest… It used to be “old age” , now people in their
forties are getting it. There might be places nearby that have supervised “day rooms”, where she might have access to new friends and
activities . But that’s just a temporary help. There are people in their 40’s who are still working and
wondering what’s happening to them, but scared to find out.

[Mike Chance in Iowa]

Thank you for the support. Sadly, I have heard of other people struggling with hospitalization and seizures like you dealt with.

The name of the LTC company seems to be a "big name" brand. MIL used to work for insurance companies for most of her adult life as a typist, so they seemed to have set their employees up with a good policy. We totally lucked out with finding a Senior facility for her after she flooded her apartment. Many residents were being moved out to their family homes due to Covid so a studio unit was available. This facility can handle anything from Senior Independent Living to end of life care. The only time they have to move a resident out is when they become a danger to themselves or other residents because they do not have passcode locks on their doors like a memory care facility does. We do really like the staff working there but they are only fluent in LTC policies that involve physical needs. Their LTC expert left to have a baby and be a stay-at-home mom for now. The waiting list for Medicaid support is years though.

What we have learned about the LTC company is the few letters we have received seem to be from a fictional person and all calls are answered in a call center where English is not their first language and they clearly read from scripts. When you ask to speak to someone in the US, the people that do answer in the US seem to be bothered with having to answer a call. They don't correspond online. It is all done via postal mail or fax. Oh, but they are more then happy to promote their online system in paying the $$$ monthly premiums!

MIL's care is costing over $4k a month and her monthly Senior income does not cover it. She has about $400k available in LTC funds and she could use it now!

Anyone with some guidance on how to proceed with her denied claim appeal will be greatly appreciated. I think they have severe cognitive impairment vague just so they can deny claims.

[Bill Dufour]

LTC policies often are time limited. Like they only pay for 3-5 years total.
Bill D.

[Scott Winners]

ADLs, the Activities if Daily Living are stuff like dressing your self, feeding your self, dressing yourself and bathing yourself. The IADLs, Independent Activities of Daily Living are stuff like cleaning the bathroom, cooking, doing laundry, organizing medications.

You might look up the FAST scale for dementia assessment. Sometimes my patients will skip around a little bit, like on a bad day that might be a 7b, and then have several good days in a row where they might score 6b or 6c.

Substantial supervision, (I am an RN, not an insurance company employee) is not defined to me. Under MediCare guidelines would be grandpa taking the breaker box apart in the middle of the night without turning the main breaker off first and requiring constant supervision, or someone else who likes to wander so far from home they get lost and cannot tell anyone their home address. For the latter, a door alarm and routine supervision might be appropriate.

For her coverage to kick in now, without my having done an exhaustive chart review, met the patient and then taking your statements at face value; it sounds to me like she is currently independent in ADLs. She does need probably routine (MediCare defined) supervision, "substantial supervision" I don't know the definition of, but it doesn't sound like she needs (MC defined) constant supervision. Folks who pull out their urinary catheter 2-3 times per week, without deflating the balloon first, require constant supervision.

Hope this helps at least a little, these are never easy.

[Jim Becker]

I feel for you...my mother was in a similar situation and I was thankful that my dad and her made the fortunate decision to buy into/endow into a life care community that had stepped services, especially when she initially needed to move from independent living to assisted living and later to skilled nursing before she passed away. And she did have dementia. Scott just provided some valuable input for sure.

At any rate, I'm sad that the LTC insurer is giving you the runaround. In the US, insurance is regulated by each state, so one place you want to touch bases with is your state insurance board/department/agency. Hopefully, they can help light a fire on this situation as a direct legal approach can be difficult sometimes.

[Tom M King]

Elder care is going to be a growing issue every year to come. My Mother was completely independent, living by herself, until she was 102. She had a stroke that she mostly recovered from, but lived in independently in an Assisted Living facility for a little over a year and a half, and then had another stroke. That facility was 4k a month, and her other expenses were another couple of k.

After she second stroke, which left her paralyzed on her left side, she would have had to go into a nursing home that would have been $9,800 a month, not including her other personal expenses, so we brought her home with us. I'm fortunate to be almost 72 years old, and still able to pick up a 120 pound person, but it takes my Wife and me to do all the handling required. For this reason, I can no longer work away from home, but am fortunate to have plenty to do here, a minute or two from the house.

She is still clear headed, and putting her in a nursing home, which are pitiful at best, would have been like torture to her. She actually enjoyed the Assisted Living faciity because there were enough other people there who still had their normal intelligence and personalities that she enjoyed their company.

A couple that I redid a mid 19th Century house for, that was their dream to enjoy after their retirement, had a Dementia problem. The Husband had retired a couple of years before his Wife did. She had been hiding her dementia well enough that no one knew. They were both heads of departments at a major university. Soon after the Wife retired, it became obvious that her mind was fading fast. It very soon got to the point that the Husband could not care for her, and she had to go into a facility where she was locked in. She would wander off at home, and get lost, so she needed to be constantly watched. Now, five years later, she doesn't know who anyone is anymore.

I wish everyone luck who is fortunate enough to have elder family members. You never can predict how it will end up.

[Edwin Santos]

ADLs, the Activities if Daily Living are stuff like dressing your self, feeding your self, dressing yourself and bathing yourself. The IADLs, Independent Activities of Daily Living are stuff like cleaning the bathroom, cooking, doing laundry, organizing medications.

You might look up the FAST scale for dementia assessment. Sometimes my patients will skip around a little bit, like on a bad day that might be a 7b, and then have several good days in a row where they might score 6b or 6c.

Substantial supervision, (I am an RN, not an insurance company employee) is not defined to me. Under MediCare guidelines would be grandpa taking the breaker box apart in the middle of the night without turning the main breaker off first and requiring constant supervision, or someone else who likes to wander so far from home they get lost and cannot tell anyone their home address. For the latter, a door alarm and routine supervision might be appropriate.

For her coverage to kick in now, without my having done an exhaustive chart review, met the patient and then taking your statements at face value; it sounds to me like she is currently independent in ADLs. She does need probably routine (MediCare defined) supervision, "substantial supervision" I don't know the definition of, but it doesn't sound like she needs (MC defined) constant supervision. Folks who pull out their urinary catheter 2-3 times per week, without deflating the balloon first, require constant supervision.

Hope this helps at least a little, these are never easy.

I agree with your explanation as industry norms, but Mike may need to look at the fine print in the policy and see if the carrier specifically defines ADLs.
Coverage triggers are usually very explicitly defined and may or may not mirror common industry definitions. Usually they're more restrictive, no surprises there.

[glenn bradley]

With the fundamental understanding that the insurance company business model runs on premium collection and not service provision I am sorry for your troubles. This is a good reminder to all of us to take responsibilities for such things lest they fall to our children. I don't think any of us would wish Mike's sitch on our kids. I will be watching with interest and wish you good luck.

[Mike Chance in Iowa]

So do you all think she has to have both conditions for her LTC? The way we read it, it's an OR situation. That she does not need to have issues with ADL in addition to her dementia.

Thank you all for the information. Any and all helps! According to the primary doctor that specializes in Senior care, she said she can tell the "smart" people because they have creative ways for making up for their lack of memory. Such as my MIL giving a detailed answer on how she stores all her pills in pill organizers 3 weeks in advance. The question was "What time of day do you take your medicine?" and "Do you take X medicine on an empty stomach?" (She was skipping daily meds, as well as taking too many on some days and her pill organizers did not have the same quantities in them.)

It's John Hancock LTC. A quick google search shows they have many 1-star reviews and how reluctant they are to pay claims. They no longer sell LTC.

I have dealt with several people with cognitive issues in their 80-100 years of age but never dealt with initiating Long Term Care claims. I agree. Going into a Memory Care Facility is rough. Cleanliness is not a high priority in many of them we looked at.

[Michael Schuch]

So do you all think she has to have both conditions for her LTC? The way we read it, it's an OR situation. That she does not need to have issues with ADL in addition to her dementia.

Thank you all for the information. Any and all helps! According to the primary doctor that specializes in Senior care, she said she can tell the "smart" people because they have creative ways for making up for their lack of memory. Such as my MIL giving a detailed answer on how she stores all her pills in pill organizers 3 weeks in advance. The question was "What time of day do you take your medicine?" and "Do you take X medicine on an empty stomach?" (She was skipping daily meds, as well as taking too many on some days and her pill organizers did not have the same quantities in them.)

It's John Hancock LTC. A quick google search shows they have many 1-star reviews and how reluctant they are to pay claims. They no longer sell LTC.

I have dealt with several people with cognitive issues in their 80-100 years of age but never dealt with initiating Long Term Care claims. I agree. Going into a Memory Care Facility is rough. Cleanliness is not a high priority in many of them we looked at.

Such organizations specialize in giving people a run around. It IS their business model!
1) Document everyone you speak to. Date/Time of the call and persons name.
2) Record all calls if you are able to. In Oregon only 1 party has to know a call is being recorded for the recording to be admissible. Even if a call recording is not admissible in court it can be very helpful.
3) Google "File complaint against insurance company in {your state}"
4) File complaints through ALL possible agencies, not just the first one to pop up.

There are agencies out there that are supposed to assist people getting the run around from insurance companies. Make friends with them, they are your allies not the people giving you the run around.

I don't believe I shared my story here about my internet problems. I spent nearly 10 years battling Centurylink over Internet connectivity issues. 2 weeks after I filed complaints with the FCC, PUC and Oregon state attorney general I have a new cable between the street and my house. Trying to get anything done through Centurylink itself is the definition of ineffectual.

https://www.hobby-machinist.com/thre...urylink.99156/

Personally, I would ONLY contact a lawyer after all other avenues have been exhausted.

[Stan Calow]

The LTCPs we looked at required you to meet at least two of the five conditions to qualify for payment. We dropped it when the annual premium tripled at age 65.

[Mike Chance in Iowa]

Thank you again for all the suggestions! I will be reading the link later about the FCC and internet. The first post sounds is very similar to what we have been going through since moving to this property in 2014.

I have been on calls for most of the day so far. I found a phone number for a Plan Administrator near the back of MIL's policy. The woman who answered said I needed to call a different number for the Benefits & Resources. Understandable the number changed with it being such an old policy. After reaching Benefits & Resources, there was no LTC option in the phone tree. The "other reason" representative was extremely helpful, but she was having a lot of difficulty finding anything on LTC. She found a number to call John Hancock and when she called it, a casino that answered. She finally found some info stating their company no longer managed LTC plans. Reaching out to her supervisor, they put me in touch with someone who is going to try to find a US based contact with John Hancock and will get back to me later whether she has an answer or not.

I gritted my teeth and called John Hancock again. All their calls typically involve at least a 20 minute wait time before anyone answers. I asked to be transferred to someone in the United States. When I reached someone in the US, she too was from a call center. I asked for documentation that defines "substantial supervision for a severe cognitive impairment" and she said there is no documentation. That she could mail me a copy of the policy. I told her I have the policy in my hands and there is no definition of what "substantial" and "severe" is. She did say this policy is set up to trigger with either the need for 2 of the ADL OR "severe cognitive impairment." It does not need to be both. I asked her what needs to be provided in order to claim her cognitive impairment. Her answer was "A letter from her doctor stating she has dementia." I already faxed that letter to them on 3/10/22. This girl was not making policy decisions. Her job is to answer calls for probably dirt cheap. She tried to be helpful and really encouraged me to fill out the appeal documentation.

The next step is I am waiting for the doctor (DNP) and her boss (MD) to write their letters indicating MIL has dementia and needs supervision. They will have the letters notarized. Then I will fax the letters and the appeal letter to John Hancock. Instead of an appeal letter, I'm creating an itemized list including dates. Things like She responds with "Yes Mommy" and "Yes Daddy"; She can't manage her daily meds; She cannot remember what food she ate for lunch 15 minutes ago; She does not remember how to lock/unlock the brakes on her 4-wheel walker, etc. I'm up to 47 items so far. Both my LOML and I will sign the appeal and have it notarized for good measure.

Since I am self-employed, I'm the one with more flexibility in my schedule to make calls, meet with Senior Facility staff, as well as run MIL around to her various appointments. Dealing with all her finances and medical insurance and life matters has been fairly easy. Dealing with Long Term Care is turning into a full time job for me.

I agree 100% about documenting everything including what number was dialed. I kept casual call notes when I started managing all her care, but once I started dealing with John Hancock, that all changed.

I will update this when I have more information and/or progress. It's going to be useful for someone else at some point.

[Michael Schuch]

Thank you again for all the suggestions! I will be reading the link later about the FCC and internet. The first post sounds is very similar to what we have been going through since moving to this property in 2014.

My Internet connection struggles are pretty irrelevant. The point I was trying to make is that as long as you stay in their system, the system they setup to road block you at every possible turn, you will not make ANY progress. I HIGHLY recommend that you reach out to your states equivalent of the Insurance Regulation Commission and any other state agency that looks like they could possibly be of help. With some muscle that can impose fines or even shut them down behind you it is incredible the progress you can make!

A lawyers job is to make money off of you. A state agencies job is to look out for YOUR interests! I DEFINITELY recommend contacting all possible state resources before getting a reaming from a lawyer as well as the insurance company!

Edit: HERE YOU GO! Start with this online site to file an online complaint with the "Iowa Insurance Division!". For a 15 minute investment you may make huge amounts of progress:

https://iid.iowa.gov/insurance-consumer-complaint

2nd Edit: Also file an online complaint with the Iowa Attorney general:
https://www.iowaattorneygeneral.gov/...complaint-form

File complaints with both at the same time and any other agency that you can come up with!