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Diagnosis is important because this is the time to get the FPOA in place while it can still be done, and make certain all legal work is done. There was, about 6 months ago an article in NYT financial by Michelle Andrews entitled Financial Mistakes May Indicate Dementia. It said that often there are signs of impairment a decade before real problems are diagnosed, and the results can be financially devastating. Important to get a baseline. Speak honestly with your husband. The more denial you are met with when you present a list of things you have noted may tell you the more like what you fear may be true. There is a lot of denial when there is approaching dementia, a lot of fear. I wish you good luck. If there are children you may need to speak with them, see if they are noticing things as well.
Penelope, I'm in the same boat, although my DH is a few years older; we're both 68.
The most useful thing things we've done thus far are setting up wills, POAs, health care proxies and end of life wishes. We were able to get all of that done through ny union's legal plan, so it didn't cost anything.
Next, I got an hour's consult with a certified and highly qualified eldercare attorney (cost about $500) to talk about his being able to get qualified for Medicaid. There were many aspects of NYS law that I was unaware of and we now have a better sense of how we will proceed.
As others have stated it is very important to get end of life documents up to date.
Also you will need a list of all investment and bank accounts, insurance policies etc. I am a Financial Planner and we discovered 6 months after the fact that one of our clients had died. The family only found out about his accounts with us, when they got the year end payment by cheque. They were lucky that there was a delay in settling the estate otherwise the house would have been sold and who knows where the mail could have gone. The Executor is having to settle multiple accounts at multiple institutions.
You mentioned mild impairment, so perhaps you have years to prepare for some serious care. I wish and hope that it will not get much worse for decades. I think aside from getting all you affairs in order, you just take one day at the time, like most caregivers do, there is not much we can do about future anyhow. My husband diagnosed in 2015 with Parkinson, thinking back it started probably before that and we did not think much about it for 5-6 years as he had very mild symptoms. Would it change anything to worry about it? No. I have no control nor does anybody else, can only control some symptoms, which are progressing rapidly for over a year, but now getting worse almost weekly. So, time came for plan B and potential C. Plan B, more help, respite care, day program for PD. As for money, nobody can help you, just you knowing what you have, maybe cut down, get extra work for a while or some assets to sell. Even being in financial field for decades, I value more how we spent our time together and experiences we shared in those early years of this horrible disease.
Has he been officially diagnosed by a doctor? If not yet, GOOD (!) because you can make plans now while he can still sign documents. Do these immediately: 1. Get a Long Term Care policy for him and select “Indefinite” option. If accepted, the premium will be very high because of his age, but the benefits will be 1000 times better. Once he starts the claim, his monthly premium payment will stop and the benefits begin. Trust me in this one. I made a huge mistake on this strategy with my husband and I am regretting it everyday. There will medical exam from the insurance policy and they also want to review his medical records. If nothing in the record says anything about dementia, he should be eligible. This is why you do not want him officially diagnosed yet by any doctor.
2. Find a CERTIFIED eldercare attorney who will draw a financial game plan for you. This is also expensive but oh soooo worth every dime.
3. Find an estate planning attorney to draft wills and power of attorney docs for both of you. They will need to be signed by your husband too. This is why I asked if he can still sign.
3. Get on your state’s Medicaid wait-list. It will be a loooooong wait but dementia is a loooong goodbye. By the time you need Medicaid, you might be eligible to receive it.
4. After all of these are done, then have him medically diagnosed for dementia. This must be the last step.
I wish I had someone told me of these steps when I was dealing with the same issues you do now.
So sorry, none of this is fun. As others have said, getting all your affairs and paperwork in order is critical. Depending on the size of your estate; a Wills, Trust and Estate attorney may advise putting assets into a trust to avoid probate later on and or for tax-related purposes. Each of you can be a "trustee" and you could also choose to add adult children and/or an attorney if at some point either, both of you have competency issues such as what happens sadly if you pass or have health/cognitive issues before him or in tandem with his decline. A Will obviously would name executors at the time of passing; but what about before. Who should set in to help you both or him (if you pass first) to manager your affairs? You can and should also name alternate POAs (durable financial) and name alternate "health agents" for the same reason.
Can also be good -- if you have any separate financial accounts -- to share your repsectivie durable financial POAs with those accounts in advance, should a need arise for you to take control or access the account. And good to make sure all financial accounts (banks, savings, IRA, retirement, life policies, on and on) all have up to date beneficiaries named.
Yes, create a catalogue of all accounts -- not just financial, but also emails, any on-line account, etc.-- with user names and password information. Keep it in a safe place -- maybe a home safe, with your attorney but not in a bank safe deposit as those are not really regulated well nor insured.) https://www.hrccu.org/blog/are-safety-deposit-boxes-actually-safe/
If you have adult children, good to have discussions with them too about who is your attorney; what/where are key documents; who are alternates for POA, Trustees, Executors, etc (them?) or if not who so they are not surprised; preferences/arrangements for in-home care, assistive living or what happens if it is not safe for you to live alone at home what should they or others do so they have no guilt about decisions they may have to make in a crisis; and what your final wishes are or burial/other arrangements that exist or not.
Also good to have a core document about home stuff. My friend's husband before he passed (cancer) created a binder of all household stuff he handled as my friend never was tasked with any of that stuff so she had no clue. The binder included details about things such as who is the lawn service company, which plumber do we use, what regular maintenance stuff gets done -- when to change smoke detector batteries, when to turn off hose bibs (what/where are those?), when to change furnace filters, gutter cleaning spring/fall and who does it, etc.).
None of this is easy/fun, but worth planning for and doing before there is a crisis. Best of luck as you navigate this journey.
My husband was assaulted walking to his car after a baseball game and hit on the head with a lead pipe. Over the next year I began noticing short term memory issues. He was evaluated by a neurologist & then had a lengthy neuro-psychology evaluation and she diagnosed mild cognitive impairment. She thinks it’s from past milder concussions with this last one bringing the most recent changes. She does not believe it’s early onset dementia (58 yrs old) & doesn’t believe it will worsen. He can still work with tools like checklists but still requires a lot of memory help from me at home (names, etc). We are in the process of finding an Eldercare attorney to get all of the legal paperwork done as he can still understand. My reason for writing this is simply to say that a diagnosis of MCI is not an automatic forgone conclusion of Alzheimer’s or dementia. Take it one day at a time, get your affairs in order and don’t let fear and anxiety overcome you. Easier said than done I know. Best of luck to you.
I have heard of Victim's of Crime Programs that help victims of violence, perhaps call the District Attorney's office, in your locale, to see if this program is available and if you need to submit a police/hospital report(s) to his/her office.
Contact your Congress Person:
Also at the Federal level: The Victims of Crime Act (VOCA) Fund was created by Congress in 1984 to provide federal support to state and local programs that assist victims of crime. VOCA uses non-taxpayer money from the Crime Victims Fund (CVF) for programs that serve victims of crime, including state-formula victim assistance grants.
All the advice you have here is good. The hardest part is being supportive of your husband. With MCI most people are aware and in denial. Accepting that he has less congitive ability than he had is difficult, even though it happens to virtually all of us. Get all paperwork in order and then start looking at what can be done to support him functionally. Does he have undiagnosed medical issues? Is he a diabetic who cheats? Obese? Sedentary? Top of the list is to stay healthy and active, to optimize brain health. Does he have restricted blood flow through the carotid arteries? He might be a candidate for endarterectomy, which can dramatically improve blood flow to the brain. Does he have chronic respiratory problems or sleep apnea? Low blood oxygen can also be a culprit. Are there hearing or vision problems? Don't give up - early stage is the best time to try for interventions. Once there is significant brain matter lost it is much harder to regain or retain function.
He needs a POA and protect your assets by limiting his access. I placed 2 additional questions on 401K that only I know answer to. They are vulnerable to scammers when their brain is damaged and it gets worse over time. If you don't have long term care insurance after you spend down assets he can do Medicaid and you stay in the house and are allowed 1 ca.
I DON;T KNOW AS I HAVE THE SAME PROBLEM. HE WILL BE 80 IN JULY, SHOULD I TRY TO PUT HIM IN THE MILITARY HOME ON BASE AT NELLIS AF BASE? I AM SEMI-DISABLE ON A WALKER. FROM A FALL AND BRAIN SURGERY.
I JUST WANT TO MENTION THE DEATH TAX. TO BE ABLE TO GIVE YOUR CHILDREN YOUR PROPERTY DON'T PUT EVERYTHING IN THE WILL, THE GOV'T WILL TAKE 45% BEFORE THE FAMILY NCAN GET ANYTHING. PUT THEM ON YOUR TITLE AND THE GOV'T CAN'T TAKE IT. MARY
Consider the ages his parents lived to and their health at time of death. Consider if he has siblings who have passed away. This will give you an idea of how many years he can live to. Medicare can help with costs when he needs full time skilled nursing.
My husband has also been diagnosed with mild cognitive impairment. Alzheimers runs in his family, and so I fear he may be headed in that direction. This may not be so with your husband, since his was caused by an injury. Just stay on top of his medical care and keep a close eye on his driving.
In addition to the excellent advice you have already received, I wanted to add that you should have your name on all his bank accounts and bills so that you can access them on line. My husband has never used a smartphone or computer, so I created on-line accounts for all our accounts. That way I can keep an eye on whether the bills have been paid, what checks he wrote, and I can balance his checkbook to make sure he has enough money left to pay bills, because he still wants to pay his bills by check, but I unable to balance his checkbook. He was sending frequent checks to charitable organizations, so I started intercepting the mail and only let him make a donation several times a year instead of several times every month. He would forget he donated, and keep donating to the same organizations over and over.
I realize most people are concerned and offer advise based on their own experience and financial aspect is important. I also think how to improve cognitive health could be helpful. Nothing is proven, of course, but there are studies suggesting there are ways to retain memory better, starting with healthy eating, physical and cognitive exercises, such as learning new language, reading, new hobbies and doing things one enjoys, walks, gardening, volunteering, socializing, I am sure there are professionals who can advise you better and according to your husband’s needs. From our experience, my husband diagnosed with PD in 2015, but almost till 2021 there was no progression and we enjoyed every aspect of life and never worry about it. It would not change anything.
Please find CELA level of elder law atty to work with you in dealing with how to set up y’all’s financials for both of your futures.
couple's planning when 1 likely to stay a community spouse (CS) for years and the other likely to be a long term care (LTC) resident in a facility in near future is way, way beyond different than any of the issues an individual LTC placement would be or even for a couple in their 80/90’s would be. Hubs is 65, if you are similar, then you are looking at 2 decades or more of your needing $ to stay living in your community. You need legit & creative financial planning and that means having an atty who is CELA and experienced in just how your States LTC Medicaid is set up for compliance & MERP (estate recovery)
Not to be harsh, but at some point his needs, his safety & security will be beyond what you can do. So unless you have a lot of $, like M+, a LTC Medicaid application will be filed for. Now should that happen only hubs needs to become impoverished to be LTC Medicaid eligible financially; not you, only him. But how to do this, isn’t necessarily easy, simple or straightforward. Couples overall joint assets do get looked at & have a cap. Tends to be 2K for him and $128K for CS assets. On income for him abt $2,200 and your income doesn’t count unless it’s really high. There’s a segregation of income and assets for couples when LTC Medicaid enters the picture.
And this segregation is affixed to a set day…. It’s called “snapshot” day in Medicaid speak. Tends to be day his LTC Medicaid application is filed. This is mucho importante cause if any $ or resources need to move, they need to move & clear the bank & be placed in ok4Medicaid bank or investment account for you as the CS and done way before snapshot. And this dear Penelope is where a good CELA atty can be priceless for you & hubs. Planning is best when long range and not when he’s fallen and in rehab and staying at the NH is imminent. Call around and find a CELA.
we can all share our experiences, but it’s all anecdotal. It’s helpful but does not take the place of solid legal work.
That being said…. Here’s a couple of things involving couples Medicaid: - couples tend to have ea other as life insurance beneficiary. Once dementia exists & LTC Medicaid be involved, thus is a bad bad idea. Say u get hit by a bus and he is 100k beneficiary…. he’s got dementia so not competent plus if he’s on LTC Medicaid that $ makes him ineligible for Medicaid and just who is going to be there to deal with all this for him? Your dead, so who? It’s things like this that CELA atty knows are pitfalls for couples.
If you should be quite a bit yonger than him, like he’s 65 and your 30’s or 40’s, you may want to find a CELA atty that has an associate that is divorce atty. No not to divorce him but to deal with the stuff a way younger wife might need looked at. A friend of mine is a younger non working wife (our kids went to elementary & Scouts together and we do same recreational stuff); the hubs was a very young 70’s; 2 kids. LSS he was in an auto accident, bad TBI, his insurance ran out, he needed LTC Medicaid; she basically had no $, quietly selling stuff, overwhelmed, distraught. Someone told her to divorce him and she met with divorce atty. Did not divorce but he used his divorce playbook to get assets moved over to her & hers alone, condensed assets then set up all $ over her CS Medicaid limit as a SPIA (single premium immediately annuity). SPIA 2 b compliant has State as beneficiary BUT she younger & going to outlive it. He also did her CSRA (resource allowance) so that she got almost all his SS income as a waiver to her rather than him doing it as a copay to the NH. Great attys know this stuff; it’s not a DIY imo ever for couples Medicaid planning. Good luck.
Igloo, I like your suggestions and specifics, great advice. IMO, it is overwhelming at beg of this journey and not all steps are necessary right away. At my husband’s diagnoses with PD It would be overwhelming and we both have decades of financial experience. We chose our focus on improving quality of life, many thing did not happen for over a decade. Yes, dealing with finances is crucial and pragmatic. For me, it was also how can we improve/ enrich our lives?
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Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
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Important to get a baseline. Speak honestly with your husband. The more denial you are met with when you present a list of things you have noted may tell you the more like what you fear may be true. There is a lot of denial when there is approaching dementia, a lot of fear.
I wish you good luck. If there are children you may need to speak with them, see if they are noticing things as well.
The most useful thing things we've done thus far are setting up wills, POAs, health care proxies and end of life wishes. We were able to get all of that done through ny union's legal plan, so it didn't cost anything.
Next, I got an hour's consult with a certified and highly qualified eldercare attorney (cost about $500) to talk about his being able to get qualified for Medicaid. There were many aspects of NYS law that I was unaware of and we now have a better sense of how we will proceed.
Also you will need a list of all investment and bank accounts, insurance policies etc. I am a Financial Planner and we discovered 6 months after the fact that one of our clients had died. The family only found out about his accounts with us, when they got the year end payment by cheque. They were lucky that there was a delay in settling the estate otherwise the house would have been sold and who knows where the mail could have gone. The Executor is having to settle multiple accounts at multiple institutions.
I think aside from getting all you affairs in order, you just take one day at the time, like most caregivers do, there is not much we can do about future anyhow. My husband diagnosed in 2015 with Parkinson, thinking back it started probably before that and we did not think much about it for 5-6 years as he had very mild symptoms.
Would it change anything to worry about it? No.
I have no control nor does anybody else, can only control some symptoms, which are progressing rapidly for over a year, but now getting worse almost weekly.
So, time came for plan B and potential C.
Plan B, more help, respite care, day program for PD.
As for money, nobody can help you, just you knowing what you have, maybe cut down, get extra work for a while or some assets to sell. Even being in financial field for decades, I value more how we spent our time together and experiences we shared in those early years of this horrible disease.
1. Get a Long Term Care policy for him and select “Indefinite” option. If accepted, the premium will be very high because of his age, but the benefits will be 1000 times better. Once he starts the claim, his monthly premium payment will stop and the benefits begin. Trust me in this one. I made a huge mistake on this strategy with my husband and I am regretting it everyday. There will medical exam from the insurance policy and they also want to review his medical records. If nothing in the record says anything about dementia, he should be eligible. This is why you do not want him officially diagnosed yet by any doctor.
2. Find a CERTIFIED eldercare attorney who will draw a financial game plan for you. This is also expensive but oh soooo worth every dime.
3. Find an estate planning attorney to draft wills and power of attorney docs for both of you. They will need to be signed by your husband too. This is why I asked if he can still sign.
3. Get on your state’s Medicaid wait-list. It will be a loooooong wait but dementia is a loooong goodbye. By the time you need Medicaid, you might be eligible to receive it.
4. After all of these are done, then have him medically diagnosed for dementia. This must be the last step.
I wish I had someone told me of these steps when I was dealing with the same issues you do now.
Good luck.
Can also be good -- if you have any separate financial accounts -- to share your repsectivie durable financial POAs with those accounts in advance, should a need arise for you to take control or access the account. And good to make sure all financial accounts (banks, savings, IRA, retirement, life policies, on and on) all have up to date beneficiaries named.
Yes, create a catalogue of all accounts -- not just financial, but also emails, any on-line account, etc.-- with user names and password information. Keep it in a safe place -- maybe a home safe, with your attorney but not in a bank safe deposit as those are not really regulated well nor insured.) https://www.hrccu.org/blog/are-safety-deposit-boxes-actually-safe/
If you have adult children, good to have discussions with them too about who is your attorney; what/where are key documents; who are alternates for POA, Trustees, Executors, etc (them?) or if not who so they are not surprised; preferences/arrangements for in-home care, assistive living or what happens if it is not safe for you to live alone at home what should they or others do so they have no guilt about decisions they may have to make in a crisis; and what your final wishes are or burial/other arrangements that exist or not.
Also good to have a core document about home stuff. My friend's husband before he passed (cancer) created a binder of all household stuff he handled as my friend never was tasked with any of that stuff so she had no clue. The binder included details about things such as who is the lawn service company, which plumber do we use, what regular maintenance stuff gets done -- when to change smoke detector batteries, when to turn off hose bibs (what/where are those?), when to change furnace filters, gutter cleaning spring/fall and who does it, etc.).
None of this is easy/fun, but worth planning for and doing before there is a crisis. Best of luck as you navigate this journey.
Contact your Congress Person:
Also at the Federal level: The Victims of Crime Act (VOCA) Fund was created by Congress in 1984 to provide federal support to state and local programs that assist victims of crime. VOCA uses non-taxpayer money from the Crime Victims Fund (CVF) for programs that serve victims of crime, including state-formula victim assistance grants.
Victims of Crime Act - NNEDV
https://nnedv.org › content › victim
Not all states tax estates. Fed. Estate tax is only applicable on estates over 11 million, I believe.
In addition to the excellent advice you have already received, I wanted to add that you should have your name on all his bank accounts and bills so that you can access them on line. My husband has never used a smartphone or computer, so I created on-line accounts for all our accounts. That way I can keep an eye on whether the bills have been paid, what checks he wrote, and I can balance his checkbook to make sure he has enough money left to pay bills, because he still wants to pay his bills by check, but I unable to balance his checkbook. He was sending frequent checks to charitable organizations, so I started intercepting the mail and only let him make a donation several times a year instead of several times every month. He would forget he donated, and keep donating to the same organizations over and over.
Wishing the best to you and your husband!
As others have written, make sure all property is owned and accessible jointly.
Everything will work out. Worry about today (not tomorrow). Do what you can to make everyday happy because none of us know what the future brings.
I also think how to improve cognitive health could be helpful.
Nothing is proven, of course, but there are studies suggesting there are ways to retain memory better, starting with healthy eating, physical and cognitive exercises, such as learning new language, reading, new hobbies and doing things one enjoys, walks, gardening, volunteering, socializing, I am sure there are professionals who can advise you better and according to your husband’s needs.
From our experience, my husband diagnosed with PD in 2015, but almost till 2021 there was no progression and we enjoyed every aspect of life and never worry about it. It would not change anything.
couple's planning when 1 likely to stay a community spouse (CS) for years and the other likely to be a long term care (LTC) resident in a facility in near future is way, way beyond different than any of the issues an individual LTC placement would be or even for a couple in their 80/90’s would be. Hubs is 65, if you are similar, then you are looking at 2 decades or more of your needing $ to stay living in your community. You need legit & creative financial planning and that means having an atty who is CELA and experienced in just how your States LTC Medicaid is set up for compliance & MERP (estate recovery)
Not to be harsh, but at some point his needs, his safety & security will be beyond what you can do. So unless you have a lot of $, like M+, a LTC Medicaid application will be filed for. Now should that happen only hubs needs to become impoverished to be LTC Medicaid eligible financially; not you, only him. But how to do this, isn’t necessarily easy, simple or straightforward. Couples overall joint assets do get looked at & have a cap. Tends to be 2K for him and $128K for CS assets. On income for him abt $2,200 and your income doesn’t count unless it’s really high. There’s a segregation of income and assets for couples when LTC Medicaid enters the picture.
And this segregation is affixed to a set day…. It’s called “snapshot” day in Medicaid speak. Tends to be day his LTC Medicaid application is filed. This is mucho importante cause if any $ or resources need to move, they need to move & clear the bank & be placed in ok4Medicaid bank or investment account for you as the CS and done way before snapshot. And this dear Penelope is where a good CELA atty can be priceless for you & hubs. Planning is best when long range and not when he’s fallen and in rehab and staying at the NH is imminent. Call around and find a CELA.
we can all share our experiences, but it’s all anecdotal. It’s helpful but does not take the place of solid legal work.
That being said…. Here’s a couple of things involving couples Medicaid:
- couples tend to have ea other as life insurance beneficiary. Once dementia exists & LTC Medicaid be involved, thus is a bad bad idea. Say u get hit by a bus and he is 100k beneficiary…. he’s got dementia so not competent plus if he’s on LTC Medicaid that $ makes him ineligible for Medicaid and just who is going to be there to deal with all this for him? Your dead, so who? It’s things like this that CELA atty knows are pitfalls for couples.
If you should be quite a bit yonger than him, like he’s 65 and your 30’s or 40’s, you may want to find a CELA atty that has an associate that is divorce atty. No not to divorce him but to deal with the stuff a way younger wife might need looked at. A friend of mine is a younger non working wife (our kids went to elementary & Scouts together and we do same recreational stuff); the hubs was a very young 70’s; 2 kids. LSS he was in an auto accident, bad TBI, his insurance ran out, he needed LTC Medicaid; she basically had no $, quietly selling stuff, overwhelmed, distraught. Someone told her to divorce him and she met with divorce atty. Did not divorce but he used his divorce playbook to get assets moved over to her & hers alone, condensed assets then set up all $ over her CS Medicaid limit as a SPIA (single premium immediately annuity). SPIA 2 b compliant has State as beneficiary BUT she younger & going to outlive it. He also did her CSRA (resource allowance) so that she got almost all his SS income as a waiver to her rather than him doing it as a copay to the NH. Great attys know this stuff; it’s not a DIY imo ever for couples Medicaid planning. Good luck.
I like your suggestions and specifics, great advice.
IMO, it is overwhelming at beg of this journey and not all steps are necessary right away.
At my husband’s diagnoses with PD It would be overwhelming and we both have decades of financial experience. We chose our focus on improving quality of life, many thing did not happen for over a decade. Yes, dealing with finances is crucial and pragmatic.
For me, it was also how can we improve/ enrich our lives?