Anyone dealth with a family member with dementia?

[RainMaker]

Long suspected but my Dad has dementia. Doctors appointments and all that fun stuff are happening. He's there but his short term memory is pretty bad and he's now struggling to do basic tasks like remember to pay his bills and even properly grocery shop.

Has anyone dealt with a family member with dementia or similar cognitive issue? Just kind of curious what to expect and what steps there even are and if there are any drugs that help.

[Flasch186]

Oh yeah, my wife's mom lives with us and its tough and I suspect its going to get tougher. She doesnt want to bathe and basically just loses things and hordes in her closet. Found a months old banana in a bag in there a few nihghts ago as we hunted for her cohclear. Brutal.

Actually met with an attorney today to try to get her on medicare's list for assisted living.

Regarding drugs, she's on a cornucopia but have they helped? who knows. It's brutal and having 3 young (ish) kids in the house its a struggle for sure.

[flere-imsaho]

My father has severe Alzheimer's, my father-in-law died from Lewy-Body Dementia, and I have responsibility for R&D project management for a major pharmaceutical company's Neuroscience business. Fire away.

[GrantDawg]

My mother died after a decade of severe dementia. She had several mini-strokes that caused early onset dementia when she was just in her late 60's.

Sent from my SM-S916U using Tapatalk

[flere-imsaho]

The first thing to do, from a treatment perspective, is get a diagnosis of which dementia it is. This will determine if there are any treatments that can help (don't get your hopes up, nothing really works well), as well as what kind of deterioration you can expect.

Otherwise, from a non-disease perspective, now is definitely the time to ensure you have POA and other things sorted out, as well as estate planning, even if he has a living spouse.

Lastly, if you think he's going to need to go into Memory Care (though the actual diagnosis will help determine this), you probably want to start looking at places and getting on waiting lists now. However, those places tend to be $10K/month, so unless he has that or happens to have a generous Long Term Care policy, you'll need to look at other options.

Also, the whole thing sucks. A lot. See my posts in the mental health thread.

[RainMaker]

I guess my biggest question is how do you handle the assisted living? Is it something Medicare takes care of? Do you have to be referred? He has some money and I'm guessing any kind of assisted living will tear through it fast.

He's still somewhat functional. And that's kind of where I don't know how far to go. Are there levels to assisted living? Are there places specifically built for memory? He doesn't need someone to bathe him or anything at this point, but he does need some help with meals I feel. And I noticed he wasn't taking his blood pressure meds which wasn't a defiant act, but more a forgetting to do it.

I just don't know where to even start.

[Flasch186]

I would reach out to an Elder attorney. That's what we did after getting a referral. They "Coach" you through the process, and it's a process you do not want to screw up.

[flere-imsaho]

Rules vary from state to state, so when doing research it's important to know you're looking at guidelines for Illinois.

You are correct that any type of assisted living will tear through any money he has saved very quickly. In a way that's good, because Medicare won't really cover assisted living or memory care, so you'll generally need Medicaid for that, and for Medicaid he basically has to have no money (although regulations vary by state, and there tend to be carve outs for specific assets, like primary residences).

In my FIL's case (in IL), they had an unreal LTC plan that covered everything (I call it "the plan that got the actuaries fired") so we didn't have to deal with Medicare or Medicaid. However, I am dealing with this now for my father, but that's in Maine, where rules are likely different. Welcome to American health care.

What you want to do is start getting advice from someone who knows Medicare & Medicaid in Illinois. The good news is that Illinois is one of the better states for this, but it's still a morass. If you can get a referral for a good elder care lawyer in IL, I'd start with that (that's what we've done in Maine), they can walk you through what the next years will hold and help you build a roadmap. It's also going to matter if he has a living spouse or not. If he does, you're going to need to protect assets for her from Medicaid.

Yes there are levels for assisted living. The term is really more of a catch-all covering a variety of services, but what you're thinking of, I think, is when he does need help with bathing and taking care of himself. In some cases Medicare will cover some of those services in home, and then the spectrum goes all the way to nursing homes where the patient needs basically 24/7 care.

Yes, there are places specifically built for memory care. They are typically called "Memory Care" facilities (no sarcasm intended). They are expensive as fuck and by default neither Medicaid nor Medicare will pay for it. However, IL has some programs that can help, and they're summarized here: Memory Care in Illinois | MemoryCare.com


But, back to how "how do you start", RM, here's my advice:

Step 1: Find a good elder care attorney based in Illinois. Unfortunately for various reasons I don't have a referral, but if you ask enough people our age someone's going to know someone.

Step 2: Have a good session with that attorney to explain everything - his diagnosis, his assets, his full financial situation, etc... and from that have them talk you through a roadmap.

Step 3: Based on that roadmap, potentially start looking at Memory Care (or other facilities) and get on waiting lists soon. The way most of these waiting lists work (and they tend to be months, if not years, long) is that once you rise to the top you stay there until you need the care, so there's no downside to getting on the waiting list soon, though a deposit is often required.

Step 4: Make the other legal preparations your elder care lawyer recommends.


Anyway, good luck with those next steps and let me know what other questions you have. Also, if you feel you need a good neurologist referral, let me know as my FIL's was very good and is based in IL.

[flere-imsaho]

Originally Posted by Flasch186

I would reach out to an Elder attorney. That's what we did after getting a referral. They "Coach" you through the process, and it's a process you do not want to screw up.

This, exactly. It's a complicated process with certain things you have to do at certain times and it's very easy (if not guaranteed) to screw up without a professional guiding you through the process.

[CrimsonFox]

Originally Posted by RainMaker

Long suspected but my Dad has dementia. Doctors appointments and all that fun stuff are happening. He's there but his short term memory is pretty bad and he's now struggling to do basic tasks like remember to pay his bills and even properly grocery shop.

Has anyone dealt with a family member with dementia or similar cognitive issue? Just kind of curious what to expect and what steps there even are and if there are any drugs that help.

my dad had it. It was awful. Got worse and worse and worse. I cried a lot

[dubb93]

I'm a nurse that works with dementia patients and I would strongly advise against MOST assisted living facilities if the dementia is to the point where they are requiring assistance with tasks. Most assisted living facilities in my area are little more than apartments with a call light if they need things (someone with dementia won't use this), a shared dining area, and someone there to give medications. I stress "someone" because it generally isn't a nurse. A large assisted living facility may have 50 apartments and one CNA in the building.

I would also strongly advise against admitting to a standard nursing home as people with dementia IMO don't get the care they need in a standard nursing home setting. I would advise finding a place with a memory care unit, which could actually be a nursing home with a specialized unit. These units will provide appropriate activities in ways that normal nursing home units simply cannot. They also generally have much high staff to resident ratios than standard nursing home units do.

For the financial matters I would also advise to contact someone independent of where you plan to admit them prior to admitting them. A lawyer is a good place to start that process if significant assets are involved.

I would consider contacting a facility first the same way I do real estate I'm interested in. The last person I would call first would be the person with the name on the sign out front as they aren't likely to be looking out for MY best interests.

[Flasch186]

Originally Posted by dubb93

The last person I would call first would be the person with the name on the sign out front as they aren't likely to be looking out for MY best interests.

Not to get off topic and onto Real Estate but the DOJ and the Wall Street influencers are making this much harder for people so that a large swath of the country will have to go to the institutional owners and get steamrolled by them on the way to homeownership. Fun times.

[Passacaglia]

Originally Posted by dubb93

I'm a nurse that works with dementia patients and I would strongly advise against MOST assisted living facilities if the dementia is to the point where they are requiring assistance with tasks. Most assisted living facilities in my area are little more than apartments with a call light if they need things (someone with dementia won't use this), a shared dining area, and someone there to give medications. I stress "someone" because it generally isn't a nurse. A large assisted living facility may have 50 apartments and one CNA in the building.

I would also strongly advise against admitting to a standard nursing home as people with dementia IMO don't get the care they need in a standard nursing home setting. I would advise finding a place with a memory care unit, which could actually be a nursing home with a specialized unit. These units will provide appropriate activities in ways that normal nursing home units simply cannot. They also generally have much high staff to resident ratios than standard nursing home units do.

For the financial matters I would also advise to contact someone independent of where you plan to admit them prior to admitting them. A lawyer is a good place to start that process if significant assets are involved.

I would consider contacting a facility first the same way I do real estate I'm interested in. The last person I would call first would be the person with the name on the sign out front as they aren't likely to be looking out for MY best interests.

RM, since you're in Chicago, I've heard this place here in Oak Park (on Madison St) just opened within the past couple years, and has a memory care unit. I don't know if that's rare, or if this is particularly close to you, but here's the link:

Assisted Living in Oak Park, IL | American House Senior Living

[JPhillips]

The nursing home industry is designed to take all of a person's assets before they qualify for Medicaid. My other didn't have any dementia issues, but the financial process for care is definitely something you want to discuss with professionals before you sign any papers. There are good people, but there are also a lot of folks looking to take as much money as possible before they have to settle for Medicaid rates.

[flere-imsaho]

Originally Posted by CrimsonFox

my dad had it. It was awful. Got worse and worse and worse. I cried a lot

Yeah, it's a good idea, too, to consider starting up therapy for yourself as you go through this. It's absolutely brutal.

[Kodos]

My Mom died from dementia after 6 years of suffering. You have my deep sympathy.

[RainMaker]

Thank you all for your help and responses. It truly means a lot. Had no clue that there were attorneys that specialize in that and it seems to be the first step. I'll probably bump this at times with questions.

flere, I'd be interested in the doctor your FIL used. My Dad is part of the Endeavor Group that I think was the merging of some others. He's in the North Suburbs so not sure if that doctor is close. It seems like it can be hard to get appointments which has me concerned. When we first called, they said the earliest they could get him in was NEXT MAY. Thankfully there were cancellations that moved it up to now.

[RainMaker]

Originally Posted by flere-imsaho

Yeah, it's a good idea, too, to consider starting up therapy for yourself as you go through this. It's absolutely brutal.

Is this just general therapy or are their groups for people who have family with dementia? Something similar to Al-Anon.

[flere-imsaho]

Yeah, Elder care lawyers are a thing and are also usually (or aligned with) estate lawyers, which is good as you'll likely need that too.

Here's an example of a facility (on the North Shore) that has an Assisted Living facility, and a Memory Care facility: https://www.seniorlifestyle.com/prop...th-shore-place

My FIL's Neurologist: https://www.northshore.org/apps/find.../chad-j.-yucus

Good news is he's on the north shore and part of Endeavor. He was very good. Don't know about appointments, but do what you can.

Therapy: Start with just general. This is more about you, and how you're handling this stressful situation. There are dementia/Alzheimer's/Parkinson's support groups for caretakers (my Mom is in one), but that's not your top priority right now.

If you're anywhere near Evanston I strongly recommend: 403 Forbidden

If that's not convenient, PM me your location and I'll ask him for a recommendation more in your area.

Ask questions whenever you want, hopefully we can be helpful.

[Dutch]

My mom has suffered from short term memory loss and confusion after a couple of TIA’s. I have made sure she takes all the medication the doctors prescribe to her and she’s actually improved (though not enough to be 100%).

She lives alone in her house and refuses to leave and I wil respect that as long as possible. I’ve heard that taking an elderly person out of their known comfort zone and putting them into a nursing home ( for example ) can be just as bad for them as any good it might provide.

Beyond what is mentioned above, I would make sure you have a power of attorney set up for medial decisions and financial decisions. You don’t use them unless you need to, but it will be much easier to help if you have those in place.

[Castlerock]

Originally Posted by flere-imsaho

Yeah, it's a good idea, too, to consider starting up therapy for yourself as you go through this. It's absolutely brutal.

This is good advice. My dad died from Alzheimer's in 2021. Words cannot describe how awful this disease is. Until you have seen it, you just can't imagine it. It is devastating for the whole family. I don't know who your dad's caregiver is but that person FOR SURE needs to find help. Therapy, support groups and day-to-day help.

Lastly, whatever financial arrangements you make, know that there is a 5-year lookback. You can try to protect assets but a skilled care facility can and will get everything that was protected within the last 5 years. You need to put those thing in place early.

[JPhillips]

For all of us as we age, you should have an assets plan by the time you're 60. Shit happens fast and you could easily have everything turned into payments to medical providers.

[RainMaker]

Originally Posted by flere-imsaho

Yeah, Elder care lawyers are a thing and are also usually (or aligned with) estate lawyers, which is good as you'll likely need that too.

Here's an example of a facility (on the North Shore) that has an Assisted Living facility, and a Memory Care facility: https://www.seniorlifestyle.com/prop...th-shore-place

My FIL's Neurologist: https://www.northshore.org/apps/find.../chad-j.-yucus

Good news is he's on the north shore and part of Endeavor. He was very good. Don't know about appointments, but do what you can.

Therapy: Start with just general. This is more about you, and how you're handling this stressful situation. There are dementia/Alzheimer's/Parkinson's support groups for caretakers (my Mom is in one), but that's not your top priority right now.

If you're anywhere near Evanston I strongly recommend: 403 Forbidden

If that's not convenient, PM me your location and I'll ask him for a recommendation more in your area.

Ask questions whenever you want, hopefully we can be helpful.

Thank you. That doctor is perfect as Glenbrook Hospital is the one he is closest too and where his regular doctor is.

[EagleFan]

My mom was going downhill before she passed. She would have bad sundowning at times and other times just be completely lost. It was not easy and also quite frustrating at times (like being told I was part of the government's plan on keeping her in prison, it was an assisted living facility, this was early on as she was transitioning into needing more care).

My great aunt got bad the last bit of her life. My dad took care of her and had her living with us while he tried to get her in where she could have care. That was rough, she kept wanting to leave. I was in high school and I remember one time running down the street to get her to come back. Told her she was babysitting me so she needed to stay at least until my dad got home.

[Umbrella]

A little late to this, but a lot of good advice in here. One thing I didn't see mentioned is to make sure you take care of your own well-being. I see a lot of people giving best wishes, and there's a good reason. Losing my mom to dementia was easily the most difficult thing I've ever been through. Luckily my brother and I both have a warped sense of humor, and we leaned on each other a lot.

Our wives were support too, but nobody really understands what you are going through unless they've been through it. My wife's parents have been going downhill for the last year or so with their own dementia, and she has apologized multiple times to me, saying she felt like she wasn't supportive enough, and how much harder it was than she thought.

Also, in some cases, they can become different people, and not for the better. Try and remember it is the disease talking, and not your dad. I know, easier said than done.

Good luck!

[RainMaker]

Thank you for the advice. I do have brothers who are helping and I'm sure we'll get through it the best we can.

He did have some setbacks of late. Went in for a skin cancer surgery because he had not taken care of it for years. The next day when he was in recovery, he had a heart attack. Thankfully nothing major but they had to put in a couple of stents. And his shoulder wound is pretty nasty and requiring regular dressings.

Working with home health for some help, but it's been a struggle since he technically can move well so they don't consider it covered. I do have a meeting with an elder attorney in a little over a week where hopefully we'll get a power of attorney in place so the financial stuff can shift over to us officially (we've been mostly handling his finances anyway).

[RainMaker]

I'm also guessing there is no way to protect his assets before going into assisted living. He has around $180k it seems plus a whole life insurance policy worth something.

It sounds like assisted living will just drain that in a few years and there isn't really a way to shield some of it. When he runs out of money and shifts to Medicaid, does he have to move to a worse facility or will they cover the nicer place he'll likely be at paying out of pocket? I'm just worried he'll spend a couple years in a nice facility and then get dumped off at a really bad one far away when Medicaid kicks in.

[JPhillips]

Definitely speak to the attorney, but he can take advantage of gifts if he wants to pass assets to family members. My FIL has been doing that and we've just kept the money in an account for him if he ever needs it.

[flere-imsaho]

If you want to shield assets from Medicaid you basically need to start 5 years in advance. From there it varies state by state, and although I live here in IL, I'm unfamiliar with IL law on the subject since my Dad's in Maine (I could tell you about it there, though) and my in-laws had a LTC policy that saved them from Medicaid.

Realistically, if you can't afford the ~$10K/month for memory care, then it's going to be a combo of family members and whatever you can scrounge up for periodic caretakers until he needs 24/7, at which case a nursing home.