My future MIL, 65, was diagnosed with Parkinson's by her GP in November 2017. She's spent the last two years or so slowing down, sleeping a lot, getting herself into a giant financial hole, and ignoring other medical problems.
Finally got her in to see a neurologist beginning of March and he thinks it's Lewy Body Dementia, not Parkinson's. I saw her this past weekend and I haven't seen her for about six weeks prior to that (my fiance is the one who takes her to doctor's appts and checks in on her) and she's gone downhill incredibly fast. She was still in her PJs and a bathrobe sitting on her front porch at 4:30 in the afternoon, smoking a cigarette with a neighbor. We try to talk to her and if it's not something she wants to talk about she just kind of ends the conversation by staring off into space.
She's mentally just not there anymore when it comes to responsibilities, but she's on the ball and feisty if there's something she wants. Since we've taken over her finances about two months ago she has little "rebellious" moments where she tells us she wants her bills back because it's too stressful for us (I'm a tax accountant... I literally see budgets and bills and debt everyday, hers are no big deal other than we keep finding new debts pop up).
Last week her brother picked her up and took her to visit his house for three days. He called my fiance the day after he dropped her off back home and said he thinks she needs to be in assisted living. She didn't bathe the entire time she was there, never used a toothbrush or hairbrush, takes at least an hour to get ready anytime they went anywhere. They went to Wal-Mart and she opened a package of Peeps in the store and started eating them. When he asked her what she was doing and that she had to pay for those first, her reply was "They'll never know."
She's currently driving on an expired license and no car insurance because anytime we make extra money room in the budget to renew her license or buy insurance... she goes and takes cash withdrawals out and bucks the budget. We've tried to make her aware that driving around with an expired license and no insurance will get a ticket at the very minimum and some hefty fines, but she doesn't seem concerned unless it's a trip she doesn't want to do ("Oh, I cancelled my doctors appointment. I didn't want to drive uninsured." but yet drives thirty minutes across town to go to lunch...). We're trying to get her assessed for driving functionality at a rehab clinic, but she has to have a current license in order to even do that assessment.
The problem is she doesn't have the money for assisted living and we're in Florida where Medicaid only covers nursing homes when medically necessary. She's still able to be on her "best behavior" in front of doctors and when she wants to be taken seriously, so I'm not sure how we would ever get her help.
She really does need to be living with someone -- but we've already established (fiance and I) that it is not us. They don't have a good relationship due to a strange childhood (she's bipolar with schizophrenic tendencies on top of her LBD) and that would stress us both out to no end, especially as we're getting married this November and it's time for us to start "our" life together. Neither of us is even 30 yet, we didn't think we'd have to care for an elderly parent this early in life. He has an older sister, but she's a financial disaster as well and we're afraid that if she wouldn't be able to pay her share of the rent they would both get evicted together. Plus his sister has drinking issues and gets into spats with their mom as well.
Does anyone know how or where we go to get her honestly evaluated for Medicaid assistance for long term care? She has another GP appointment tomorrow that my fiance is taking her to, so he's going to bring it up with the doctor. But I've heard there are strict rules for when Florida Medicaid will kick in for care and I'm not sure if she's at that point yet. She makes around $1500/month with social security and a portion of her ex-husband's pension and she is in debt to so many people we don't even know where to begin with affording assisted living.
Finally, since you and your fiancé are starting a new life and there are other people in the family available, you may want to step back from her Care. Those people might be very happy to let you and him handle everything and just pitch in whenever it’s convenient for them. Don’t be afraid to ask for help. Patterns that are set now will remain in place for a long while. You might also consider consulting with an Elder Law attorney for Medicare/Medicaid questions.
Right now we don't have a PoA. To be honest, we're not sure we want to go that route. We want to help out, but we are not on board for the full responsibilities and legal ramifications of that. He is on her doctor's paperwork for HIPPA so he gets all medical information as needed.
I would recommend that you call your states Obudsman, someone will go talk to her and advise you. I too thought that a POA set me up to have some authority to help my dad, he is non compliant and makes everything as hard as it can possibly be. He sabotages any thing and everything he can. Uugghh! So, I have an Obudsman go talk to him, he is being kicked out of his current care home and I needed to find out if they would give us a break on rent for the 10 days. My dad tells the man, oh no worries, I already have a place, caregiver hired and a roommate with a live in to help. WHAT!!!???!! Yep, never even addressed what I needed, mute point as it was all taken care of. I told the Obudsman that what he was told was wishful thinking and I was currently doing all I could to get him a place to live. That is when I found out that the POA is completely useless, unless and until my dad is deemed incompetent by a judge and he is free to do whatever he wants, period. I have no authority nor do I have responsibility. So, please find out what your state laws are before you make decisions. If my dad has a stroke or brain bleed then I can help him, that's what MPOA and Durable POA are for, when they are to sick to advocate for themselves, not to be able to make them do anything.
I congratulate you on your upcoming nuptials and pray it is the beginning of a life long love affair.
Please let us know how it's going and what you learn.
Whatever you DO end up doing, DO NOT have her move in with you. That would be the worst possible scenario. Esp. as you will be beginning out as a couple with a new life. You'll need to nurture that.
Good Luck!
I assume that she doesn't have assets, or you would be using them to pay off her debts, right? So I suppose money is tight. Seeing a lawyer who specializes in Elder Law would be very worthwhile at this point. Contact the Area Agency on Aging for advice on that.
My husband had LBD for 10 years. I can share some experience about that:
1) At no point after his diagnosis would it have been safe for him to live alone.
2) His license was revoked by the DMV. (His doctor reported his diagnosis.) The worst thing that could happen to MIL is not that she'd get a fine for driving without a license, but that in a moment of distraction or lapse of memory she would stomp on the gas instead of the brake, and crash into a group of people. It would be awesome to have a safe driving test at a rehab place. That seems like a Catch 22, doesn't it, that she has to have a license to determine if she is well enough for a license. Is there any part of the test they can do without her having a license? (This entire subject is high-stress. According to my husband the worst part of having dementia was having to stop driving. But the safety of other people is involved.)
3. All kinds of dementia have fluctuations, but variability is a core symptom of LBD. Good days and bad days. Good hours and bad hours. Can't do something in the afternoon that they could do before lunch. Can't do it tomorrow either, but the next day they do it flawlessly. This leads some people to conclude they are faking not being able to do it. They are not. The fluctuations are real and beyond their control.
4. Some people with LBD have spells of being unresponsive -- staring off into space. My husband did not, but it certainly can happen.
5. Both Parkinson's and LBD involve the same kind of protein deposits in the brain (the "bodies" discovered by Lewy) It is not at all unusual to start out with a Parkinson's diagnosis and then refine it to LBD.
6. Wandering is not common in LBD.
7. Memory of people and recognition of them is often not impaired in LBD. My husband recognized everyone in his life right up through his last day.
8. Hallucinations and delusions can be very pronounced. Often the hallucinations are benign and not disturbing to the person with LBD.
9. Persons with dementia can experience behavior problems early on.
10. Only someone who really understands this disease should prescribe for a person with LBD. Some drugs, such as Aricept, work better for LBD than for ALZ. Some drugs that person with ALZ can take can do permanent damage to people with LBD. The Lewy Body Dementia Association has a wallet card with drug information that should always be presented in ER. Ask the neurologist for a several cards. If they are not available there, get them from the LBDA.Org website.
Thay, have you looked into Florida's Assisted Living for the Elderly Waiver program? Even if she qualifies for that you'll still have to find an ALF that accepts Medicaid payments, but it is definitely worth looking into.
The family is in for a bumpy ride. Fasten your seat belts!
And you can't just "demand" a definitive diagnosis of Lewy Body Dementia, unless it is time for an autopsy. The three flavors that diagnosis comes in are "possible" and "probable" and "confirmed by autopsy."
His sister is upset and keeps saying she wants MIL to come move in with her when her (the sister's) lease is up in August... but I don't think she realizes four months from now their mother could be an entirely different person. Just five months ago pre-Parkinson's diagnosis she was functioning a million times better than she is now. His sister thinks MIL is going to automatically end up being abused and depressed in a nursing home, I don't think she realizes that of course we're going to visit and check in on her we're not just shutting her away in a home and wiping our hands of this.
I spoke with MIL yesterday and explained to her that we want to see her somewhere that she is with other people her age and that we think she's lonely living in her apartment right now, and she agreed with me that she was lonely. I'm honestly not sure what the difference would be between her staring at the TV/walls in her own apartment right now and staring at the TV/walls in a rental house with his sister in a few months. His sister is mid-40s, still works, has a mid-20s son that on and off lives with her, and so MIL would still be by herself for part of the day with no one to check on her. I'm also just overall concerned that his sister's financial issues combined with MIL's financial issues are basically going to implode. We'd still be handling MIL's money, but if his sister can't come up with her half of the rent... I'm afraid we're going to be on the line to come up with the difference. Neither of us makes a ton of money we've just been smart about how we utilize it, but there's no way we could afford someone else's rent.
As far as MIL in the store and how she responds to things, fiance and I are learning to step back from her behavior and determine "is she acting out because she feels out of control?" or "is she just not even aware what's going on?" when various issues pop up. Short of following her around 24/7, there's not much we can do to be sure she isn't stealing or wasting her allowance.
Her neurologist wants her to have an MRI we are waiting to hear when that will be set up. That and the driving test should clarify more about where we go from here.
" The Department of Elder Affairs administers programs and services for elders across the state of Florida through 11 Area Agencies on Aging, which operate as Aging and Disability Resource Centers (ADRCs). These ADRCs function as a single, coordinated system for information and access to services for all Floridians seeking long-term care resources. The ADRCs provide information and assistance about state and federal benefits, as well as available local programs and services. See below to contact your local ADRC.
By sharing a common information and referral system, the ADRCs are able to provide elders with uniform assistance no matter where they live. This system also offers the public access to a statewide database of local community resources, available on the internet or by calling the Elder Helpline toll-free at 1-800-96 ELDER (1-800-963-5337)."
www.elderaffairs.state.fl.us. This website shows a map of Florida split into the regions and the contact number for each region. Call them and talk to them about enrolling your mother into the Florida Medicaid Long Term Care. They will even help her/you complete the application.
It will take some time to be eligible and enrolled, but you need to start this process as soon as you can. With her diagnoses and income and no assets, she is certainly qualified.
Once Medicaid deems her eligible, then she/you need to select a provider/insurance company for the Long Term Care benefits by calling Choice Counseling. The providers /insurance companies vary by the region of the state. There is no cost for this.
Once enrolled, your mother will be able to live in: 1. her home/apartment, etc. with services of personal care, homemaking care, number of hours weekly based on her needs, or 2. assisted living, or 3. nursing home, depending on whether her level of care necessitates nursing home over assisted living.
She will also be able to receive incontinent supplies monthly if there is that need.
There is also a $15 over the counter monthly benefit for such things as vitamins, bandaids, multiple different items
Now, this is just the Long Term Care.
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There is also MMA (Managed Medical Assistance), which she may or may not need, and again, would need to select an insurance provider for this. If your Mom does not have Medicare, she needs this; if she does have Medicare, she may or may not need this.
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Either way, start with the Area Agency on Aging, which if you look at the map of the Regions of Florida, has different names in the different regions.
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An elder attorney could also get the process started, but it is not inexpensive. Going to or calling your local area on aging office is the best way to get started.