Parkinson's: How to Mitigate Possible Financial Hemorrhage?

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RollWithTheChanges
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Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by RollWithTheChanges »

Husband unexpectedly retired this Spring (2021.) He was diagnosed with Parkinson's Disease (tremor dominant) a few years ago. I realize that every person with Parkinson's has symptoms that develop differently than every other person with Parkinson's. However, the symptoms only get worse over time. So my husband's future health and long-term-care needs are a big unknown at this point. He is 61. No Long-Term-Care insurance, and is ineligible because of the diagnosis. I do have LTCi in order to protect our finances from another possible LTC catastrophe. We will never qualify for Medicaid, so we will be paying for everything that Medicare won't pay for after he turns 65, which is likely when the big expenses will start to present themselves.

For those who have been on the Parkinson's road (either as the person with Parkinson's or the care-partner), what steps other than Long-Term-Care insurance have you taken to mitigate the possible financial hemorrhaging that we could experience with this disease?
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ResearchMed
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by ResearchMed »

RollWithTheChanges wrote: Tue Apr 13, 2021 3:40 pm Husband unexpectedly retired this Spring (2021.) He was diagnosed with Parkinson's Disease (tremor dominant) a few years ago. I realize that every person with Parkinson's has symptoms that develop differently than every other person with Parkinson's. However, the symptoms only get worse over time. So my husband's future health and long-term-care needs are a big unknown at this point. He is 61. No Long-Term-Care insurance, and is ineligible because of the diagnosis. I do have LTCi in order to protect our finances from another possible LTC catastrophe. We will never qualify for Medicaid, so we will be paying for everything that Medicare won't pay for after he turns 65, which is likely when the big expenses will start to present themselves.

For those who have been on the Parkinson's road (either as the person with Parkinson's or the care-partner), what steps other than Long-Term-Care insurance have you taken to mitigate the possible financial hemorrhaging that we could experience with this disease?
You should probably have at least an initial appointment with an attorney who specializes in Elder Care.
Time can matter, so do at least check this soon for starters.

And then look for some medical specialists. Speak with several.

Good luck.
FIL had Parkinsons, and for a very long time. We flew him across country twice for medical consultations and shorter term care (regular hospital, not skilled nursing or such).
MIL finally got live-in hekp, and then he needed more care.
Very difficult, unfortunately. But that was 25 years ago, and things have changed a lot.

RM

(edited for spelling)
Last edited by ResearchMed on Tue Apr 13, 2021 4:23 pm, edited 1 time in total.
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Flyer24
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by Flyer24 »

A post suggesting ways of dealing with the disease was removed. Medical issues are off-topic so let's keep it finance-focused.
abyssdiver
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by abyssdiver »

My mother has late onset atypical Parkinsonism. I believe its evolution is faster than the tremor based one and there is a greater probability of developing dementia, which she has. [medical advice removed by moderator Flyer24] It is my understanding that with Parkinsons, Medicare is more flexible in terms of approving at-home hospice care in that the patient does not necessarily need to have six months to live. Hospice can provide at-home healthcare, visiting nurses and doctors, a hospital bed, and various products such as diapers, wipes, etc. and the patient may well be on hospice for years...but this is a much later stage.
spammagnet
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by spammagnet »

ResearchMed wrote: Tue Apr 13, 2021 4:16 pm… You should probably have at least an initial appointment with an attorney who specializes in Elder Care.
Time can matter, so do at least check this soon for starters. …
I second this advice. Do it soon. A qualified Elder Care attorney knows how to mitigate risk to one partner's assets from financial stresses caused the other partner's health issues. You may think of your assets as one big pot but an attorney may have ways to separate them to your benefit without adversely affecting your husband's remaining years.
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by Sandtrap »

Reduce debt
Downsize
(Move to a single level smaller more convenient home, etc)
Move from a HCOL area to a less expensive LcOL area yet close to medical care.
Simplify finances and investing
Consult legal counsel for estate planning, etc.
If additional homes or r/e burdens, sell.
Etc.

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GuyInFL
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by GuyInFL »

Mom had Parkinsons and they moved to a CCRC. She was diagnosed when they moved in. Last four years were spend in the "full Nursing home" wing. Parents and family were very satisfied with the care they received.
PartIrish
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by PartIrish »

OP, I'm sorry to hear of your husband's diagnosis. My recommendation is to get the very best Medicare supplement plan you can afford when he turns 65, or earlier if he qualifies for Social Security Disability. Take a look at Plan G, which covers nearly everything that Medicare doesn't. Get a good Rx drug plan. Commit the money for good supplemental and drug plans at the time he turns 65 because that is when he can get those plans during sign-up without going through any underwriting. If you try to add them later the cost will be very high. Have you and he looked into Social Security Disability? If he is approved, he will eventually qualify for Medicare after 24 months. Having good Medicare coverage will help a great deal with future medical costs. Finally, if you live near a teaching hospital, check to see if they do ongoing research in Parkinson's. That may allow him to benefit from state of the art research.

Agree with the previous posters to consult an attorney who specializes in elder law.
GJ48
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by GJ48 »

RollWithTheChanges wrote: Tue Apr 13, 2021 3:40 pm ....what steps...have you taken to mitigate the possible financial hemorrhaging that we could experience with this disease?
Wishing you and your husband all the best in the years ahead!

Consider monetizing any real estate you own
Get familiar with the features and the cost of wheelchair accessible vehicles
Be sure to have a credit card with a large line of credit and preferably a cash-back feature
Get a professional evaluation of your residence so your husband has a safe and accessible space
Best price for medications will probably be with a mail-order pharmacy
Very likely you'll find free PD classes and activities in your area; check with your hospital's social worker
Plan out the cost of different HHA coverages
  • Hours per day and days per week
  • Number of HHAs needed for coverage; overtime; holiday rates
Plan out the cost of periodic RN home visits in between regular MD visits
Know the market for home medical equipment, medical supplies and exercise equipment
  • Hospital beds and features
  • Hospital table
  • Motion sensors
  • Paging systems
  • Reliable source of home medical supplies
  • Recumbent stationary bike
KESP
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by KESP »

I am in the same boat with my husband. As you state, Parkinson's vary so much from person to person, but it is progressive. My husband is just ignoring the likely path this disease will take, so it makes things difficult to plan. I did convince him that we needed a walk-in shower when we redid the bathroom. If you don't have that, it's worth considering. We already live in a ranch and the last bed we bought was adjustable so we are all set there. The idea to see an eldercare attorney its a good one and I think that's good advice. Again, when the other person is not being realistic about the path of the disease, it's very hard.
ROIGuy
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by ROIGuy »

I would find a Parkinson's foundation support group. I'm sure they will have excellent insights to help you. Staying as fit as possible will help with long-term effects from Parkinson's. There are specially boxing classes that have been proven to be very helpful for people with Parkinson's.
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by ROIGuy »

I would find a Parkinson's foundation support group. I'm sure they will have excellent insights to help you. Staying as fit as possible will help with long-term effects from Parkinson's. There are specially boxing classes that have been proven to be very helpful for people with Parkinson's.
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ResearchMed
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by ResearchMed »

Mr.BB wrote: Wed Apr 14, 2021 7:47 am I would find a Parkinson's foundation support group. I'm sure they will have excellent insights to help you. Staying as fit as possible will help with long-term effects from Parkinson's. There are specially boxing classes that have been proven to be very helpful for people with Parkinson's.
This reminds me: Music!

When FIL was pretty much incapacitated, just sitting in a wheelchair at his nursing home, and could barely walk or even respond much at all... even at that late stage, astonishingly, when they put on some dance music, he got up and danced with MIL.
Yes, really.
And when the music stopped, he stopped, too. And then he needed help getting back to his wheelchair.

It was truly wonderful, and apparently it's a known thing, for whatever reason.
Unfortunately, they had never tried dancing while he was still at home.
[Not going into details to avoid medical topics; this is just for "family activities" or such :happy ]

RM
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by LadyGeek »

Now is the time to deal with all of the difficult decisions related to estate planning. Please see an attorney who specializes in elder law. You will need: Will, medical Power of Attorney, durable Power of Attorney, Living Will (Advanced Health Care Directive).

Your husband's condition will degrade slowly. Those documents will become important at some time in the future, and you'll be glad you were prepared for it.

- Be sure beneficiaries (and contingent beneficiaries) are on all accounts - checking, savings, IRAs, CDs, etc.

- Get POA for your husband's bank accounts, investments
Please talk to your local bank. They'll discuss your situation and tell you what's needed. They can assign POA on the spot.

If the bank permits it, they may also suggest having a joint account. It will allow you to deposit checks in his name after he passes.

Vanguard has what's called "agent authorization". Follow-up with them on what to do.

- Have your husband take Social Security as soon as he's eligible
- Are you going to retire with a pension? Choose the maximum payment (sole survivor).

- Plan for funding nursing home costs, which are approximately $400+ / day.

The above is a tough discussion, but my husband passed away last year and I'm passing along some helpful things I did.
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ROIGuy
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by ROIGuy »

ResearchMed wrote: Wed Apr 14, 2021 8:02 am
Mr.BB wrote: Wed Apr 14, 2021 7:47 am I would find a Parkinson's foundation support group. I'm sure they will have excellent insights to help you. Staying as fit as possible will help with long-term effects from Parkinson's. There are specially boxing classes that have been proven to be very helpful for people with Parkinson's.
This reminds me: Music!

When FIL was pretty much incapacitated, just sitting in a wheelchair at his nursing home, and could barely walk or even respond much at all... even at that late stage, astonishingly, when they put on some dance music, he got up and danced with MIL.
Yes, really.
And when the music stopped, he stopped, too. And then he needed help getting back to his wheelchair.

It was truly wonderful, and apparently it's a known thing, for whatever reason.
Unfortunately, they had never tried dancing while he was still at home.
[Not going into details to avoid medical topics; this is just for "family activities" or such :happy ]

RM
A number of years ago I saw an interview with Michael j Fox who has had Parkinson's since early 1990s. Even though he was having tremors and trouble stabilizing when he was standing if they put him on ice skates (growing up in Canada he learned how to ice skate very early in life and loves hockey), you never would of known he had Parkinson's watching him on the ice rink.
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RollWithTheChanges
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by RollWithTheChanges »

Thanks to everyone!

In hindsight I should have added that we live in a "community property" state. And the bulk of our financial assets-- 401k, IRA, etc. are in his name. Our house is in both of our names.

I did talk with an elder care attny a couple of years ago and his advice was: you're not going to qualify for Medicaid, so plan on spending your assets. The only alternative that he stated was that we could put everything in trust, but would lose control, which wouldn't be acceptable to either of us.

I've been seeing $100,000 per year for nursing home care. He comes from a long-lived family, and Parkinson's doesn't decrease your life expectancy.

We're open to creative ways to set a "boundary" on how much we spend for his care so I would be protected.
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by Freetime76 »

Dumb question- are you in the US? Can you sign up on the healthcare.gov marketplace? They cannot deny coverage for a medical condition...though I understand this doesn’t include skilled nursing care long term (I’m not sure of the types of big expenses you have coming, and sorry if I missed that you’ll have private insurance on top of Medicare). I don’t believe there is an age limit, though your income affects the payment scale.
Please spell out new acronyms. Thank you.
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RollWithTheChanges
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by RollWithTheChanges »

Freetime76 wrote: Wed Apr 14, 2021 5:24 pm Dumb question- are you in the US? Can you sign up on the healthcare.gov marketplace? They cannot deny coverage for a medical condition...though I understand this doesn’t include skilled nursing care long term (I’m not sure of the types of big expenses you have coming, and sorry if I missed that you’ll have private insurance on top of Medicare). I don’t believe there is an age limit, though your income affects the payment scale.
Yes, we are in the U.S.. We have healthcare coverage, and then he'll go on Medicare at 65. So I guess we will have "some" limit on medical and Rx out-of-pocket costs, assuming Medicare will cover all Parkinson's medical needs. I guess I could find out what the maximum out-of-pocket medical costs would be and just plan for that number. Is that a good plan?

Now, the biggest cost, which is uncovered by medical insurance / Medicare will be for assisted living needs and skilled nursing, if needed. How do I limit those costs? $100,000 per year is really going to add up!
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by LadyGeek »

It's a hard discussion of planning for x years of life expectancy and working backwards from that. The only way to mitigate this is to delay going to a nursing home as long as possible.

At-home care is the best option, but there may come a time when it's not possible to do so.

Full-up skilled nursing care is closer to $145,000 / year. This is based on real-life expenses. I ended up paying for 6 weeks of nursing home expenses before he passed.

This is where the "self-insured" aspects come in. Basically, I started drawing down his IRA to pay those expenses.

This is also where a Power of Attorney comes into play. He was far from able to handle his finances and I had control of his IRA to make this happen.
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by 557880yvi »

We have just been through this, my MIL was diagnosed with Parkinson's quite a few years ago and she passed away last month. Some Parkinson's patients can be cared for at home, with outside help hired to come in (but it is very expensive and not always reliable). But others' disease progresses differently and they can decline rapidly to where in-home care is not possible. Only a year ago, my MIL was living on her own, driving, taking care of everything but then after a series of falls within a few weeks, was hospitalized, went to rehab and then we moved her near us to Assisted Living. It was expected that she would have 5 years or more there, with paying for several hours of aides a day. Within 6 months she developed dementia, and became bedridden, needing a nursing home, but due to the pandemic could not be moved. We hired additional care (she did have LTC insurance that covered that). But we were waiting for a bed in a nursing home with a memory care unit (extremely scarce in this area) at $17,000/mo! She then needed hospice and was gone in a few weeks. Never imagined that all could have happened in the space of barely a year.

I share this because the decline can be this rapid - so do whatever you can to get all your legal and financial affairs in order right now. It is extremely difficult to do that when every day is dealing with your loved one's unexpected medical issues, the medical system itself then all the financial issues. Also be aware that even though you may have a POA, many entities simply refuse to accept it (like hospitals & financial institutions). A good attorney will be there to help if this happens. And make sure you have all the DNR's and other forms required in your state prepared (in my state, they need to be signed by a physician). And the advice about getting the best supplemental plan you can afford when he goes on Medicare will help mitigate some of the financial hemorrhaging. You have to get this immediately when he applies for Medicare - if you don't do this within the first 6 months when they can't turn you down for medical reasons, he may be uninsurable later (after that insurance companies can deny coverage for a supplemental plan for health reasons).

My heart and prayers go out to you and your husband.
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by anna.day »

I'm so sorry this is happening.

First, I would speak with a MUCH better attorney than the one you spoke with. Just saying "there's nothing that can be done" is probably not accurate. Medicaid planning is a wise thing to do, and I am very dubious that there are no kind of protections that can be put in place in your case to ensure there is enough money to take care of YOU should your husband pass first. I always recommend certified Elder Law attorneys: https://nelf.org/search/custom.asp?id=5427. It will be expensive, but worth the money you pay for it.

For your specific medical and care planning questions, I recommend hiring a geriatric care coordinator for at least an initial consultation. https://www.nia.nih.gov/health/what-ger ... re-manager. He/she (you may have to call a few to find the right one or person you "click" with) can give you good advice as you start to plan for the coming years.

I do also recommend you join a Parkinson's caregiver support group when you feel ready. It may be overwhelming, but those folks will have some good tips.

Finally, take hope! Parkinson's can be a slow moving disease, and it may be many years or even decades before your husband start needing significant care. Be sure you both are getting exercise, watching your diet, and seeking mental health support as needed. It's a marathon, not a sprint.
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Re: Parkinson's: How to Mitigate Possible Financial Hemorrhage?

Post by Nebraska_Drought »

My father is 72 this May and was diagnosed with Parkinson's a decade ago (right after he retired, ironically). He is doing ok and is VERY active. He walks 4-6 miles every day, gardens, does yard work, works on our farm and very much still enjoys hunting and fishing. His biggest obstacles have been balance and losing the dexterity in his hands. Other than tremors, he is doing pretty good. As a veteran, he has looked into what is available to him from the VA, which has been great. He is in the process of setting up DBS surgery this spring/summer through the VA and he is excited for that. I say all of this as everyone declines differently. He has fought this hard and the exercising he does is one of the keys to keeping his progression slower. He fights depression as this is not how he envisioned his retirement years but he and my mom (pre covid) were doing a lot of traveling and seeing places they wanted to see.

Not fun at all, but fighting and keeping as much energy and will power as possible doe help. Best of luck.
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