Updated: Aug 21, 2021
Disclaimer: This post contains information and opinions from someone with no background in medicine or science (proceed with extreme caution). Always consult with your own trusted medical and legal practitioners before making any decisions about diagnosis, treatment, estate planning, or outcomes for dementia or any other condition.
Our loved one has dementia (Lewy Bodies, like Robin Williams) and he is not the first in our family.
Our loved one has always told us that his dad had died in his early 50’s from “hardening of the arteries,” a rapid decline that the doctors could not pinpoint but that made him suddenly bedridden and incoherent until death. This answer was always unsatisfying as incomplete but we lived with this explanation until a visit this year from his cousin, who mercifully said that she thought (due to his symptoms at the time) that he had Parkinson’s (a disease related to Lewy’s) and we will always be grateful to her for this clarity.
Mom’s parents both had dementia, too (Alzheimer’s) and I will always think that Mom is a Zen Master because when I asked her in middle school if she was worried that she would get Alzheimer’s, her answer still rings in my ears like a koan that solves the riddle:
“I might but I’m not going to waste my life worrying about it.”
The dementia endings are always the same: decline, forgetfulness, suffering, and death. Since we live in Texas, I would like to share some lessons about this disease, estate planning, and how to navigate the daily way through the devastation to help plan as best you can.
Lesson 1: Everyone needs an attorney to write their wills and to discuss having a trust(s)
Before anyone gets dementia (or incapacitated for any reason), please avoid self-service legal documents because these may not hold up in court to challenges; and, this is too important to botch even if you do not have much for someone else to inherit. Promise. Another word to the wise is from a woman in a dementia support group who said that her incompetent attorney did an abysmal job with her estate details so please use good judgment or ask around for professional advice by starting with the State Bar of Texas, the organization that administers the Texas legal system.
In Texas, if you die without a will, then your estate goes to probate court upon your death and it would be against the law for anyone to start removing your things without final court approval. This means that your loved ones will be waiting for the court system to decide who owns your stuff and this must be ruled upon by a judge to be final (a process that can take years due to other case backlogs and thousands of unnecessary dollars, which could drain any money that your loved ones may have inherited because they will end up paying court costs and attorney fees). Also, the court will ask to hear from *anyone* who may make a claim to the estate including people whom you did not know or perhaps whom you would not have wanted to have any involvement.
Also, without a durable medical power of attorney, you have no legal recourse to end your own pain or suffering – see Lesson 3.
Lesson 2: If you have children, please never die without a will and/or trust
If you have minor children in Texas, then know now that they can never inherit money so the fantasy that a child can go on living without a will from the money in your bank account is a cruel burden (even if unintentional). There is also the problem that, without a will, where and with whom would your children live? Again, the answer would be found in court (an entire process that is completely avoidable with the correct legal documents already in place before your death).
Lesson 3: Power of Attorney and Durable Medical Power of Attorney
The other advantage to preparing a will with an attorney is that they can also help you to create durable medical power of attorney *and* power of attorney documents along with putting your wishes for end-of-life treatment into legally-binding clarity with your trusted attorney. No one wants to be incapacitated without resolution but, if you are incapacitated and do not already have these documents in place, then you will continue to receive life-sustaining treatment even if your quality of life is nonexistent since any decision to end life sustaining treatment can only be made by you in advance through the durable medical power of attorney.
The power of attorney gives someone else the legal authority to make decisions for you as your “agent” in the event that you cannot. In addition, if you want someone to make financial decisions for you while you are incapacitated, then this person should not also be your agent (the person making your healthcare decisions) due to the inherent conflict of interest.
You will also want to be sure that every financial institution that you have or manage money in right now as a *beneficiary form* on file for you; or, that the account is setup with “joint tenancy with right of survivorship”; OR, to be payable on death (POD); OR transferable on death (TOD) to the loved one whom you designate (another *really* good reason to talk with an estate planning attorney before you take any action to help you make the right choice among these account options).
In Texas, if you do not have a beneficiary form already in place on each financial account you own, then if you die unexpectedly, your loved ones will need to get a certified copy of your death certificate to a judge who will need to sign it and then you will need to present this to the financial institution in order for them to be able to release the funds.
Also, I met a guy whose own loved one died a few years ago and his family had to go through this process; however, the judge would not sign off on the death certificate since the cause of death could not be determined; therefore, they are still unable to provide a certified copy of the death certificate (from a judge) to the bank in order to claim the money that belonged to his dad. This means the funds are stuck in probate until further resolution.
All this could have been avoided if there had been a signed beneficiary form from his dad on the account to clarify the beneficiary (or beneficiaries).
Lesson 4: Get life insurance and long-term care insurance as far in advance as possible
I have to thank Suze Orman for this advice (and for having a will) because my husband and I now have both due to her continual TV insistence! The purpose of life insurance is to continue to have income if the primary breadwinner dies; or, as a way to supplement current income when a spouse dies (for example, to help pay off the house on one income). You can even start with free advice about insurance from Texas Department of Insurance, the state agency that regulates insurance (and my employer although I am still learning about this field) and which policies to choose to meet one’s own needs.
With regard to long-term care, I have priced three nursing homes this week and the cost today (in Austin) is between $5,500-$8,000 per month! If you plan to have Medicaid to pay for the cost then please also see Lesson 4.
Lesson 5: Texas needs assisted suicide laws like California, Oregon, New Mexico (pending) and Vermont
I do not like the phrase “death with dignity” as this sugarcoats death. I am speaking for myself as this option is too late for our loved one to give his consent but I do not think there should ever be another Robin Williams hanging himself with a belt. We give our pets the compassion to die without suffering and there is no reason for humans to not make the same choice for themselves. An excellent documentary on this topic is the 2011 film: How to Die in Oregon, which shows the choices made within the law by people suffering from terminal illness; and, a man who was denied treatment for his own terminal condition because this law exists (a danger to guard against).
Lesson 6: Nursing homes are not where anyone wants to be
I cannot speak to conditions in all states but will focus on Austin, TX, my hometown, and the place where the three nursing homes I have looked at (so far) for our loved one have been between $5,500-$8,000 per month (out-of-pocket costs)! Medicare *does not* pay for nursing home care but Medicaid will after a needlessly frustrating application process. It is worth the journey so please stay strong!
Since Medicaid requires everyone to spend down their money until they meet the minimum income requirements by state (in Texas it’s around $2,800 maximum per month for couples) but trust me, you will need an experienced estate attorney to help navigate through this process.
Also, if you are worried that you will make too much to qualify for Medicaid, please know that it may be possible to set up a Miller trust due to a court case by the same name. Having this trust in place prevents denials when income limits may exceed the state minimums (even by just a few dollars).
Whenever possible, you will need to gather *all* the documents in advance that the attorney needs so that they will not need to bill you for this service. We are in this process now and have not yet started the Medicaid application but having an attorney is invaluable because they can save you time in knowing what documents they will need to help you to pursue the Medicaid claim.
If you cannot afford an attorney, please talk to Legal Aid for assistance in case there may be anything they may do to help. Unfortunately, too often the answer is you get what you pay for so buyer beware.
The Baby Boomer generation will soon need our care, too, and the facilities that we have now do not suffice within a structure where top-dollar still get mediocre care. I was disturbed to visit a place last week that had two nurses caring for 30 residents in a wing and, during my tour, one of the nurses came up to the staff person on duty who was giving my tour and said: Sorry to bother you but do you have the preauthorization [phone] number?
The person giving the tour helped the nurse with her question and all I could think is: Why is a nurse who is responsible to care for 30 residents also making calls that could be made by an administrator in a facility that charges $5,500-$8,000 per month?
Why is a nurse responsible for 30 patients also making preauthorization calls in a nursing home facility that charges between $5,500-$8,000 per month?
Lesson 7: Medicaid is not an easy system to navigate in Texas
The first time I visited the online website to explore Medicaid for our loved one, I filled out the entire online screening application only to enter my submission and then receive a website error with a toll-free phone number and be told to call back during regular business hours (M-F) and to provide a 25+ digit alphanumeric code (I kid you not) to read to the phone operator who answers the call. Unacceptable! I am so angry that anyone unable to hire an attorney is being forced to bear the indignity of this process on their own.
In addition, my mom used to work with a young woman in retail who had horrific seizures and who needed Medicaid to help pay for medication but was told when she filled out the application that she made too much money to qualify for assistance. She has since died due to this condition and never did receive any help. It turns out that due to the Miller trust, she may not have been denied care but there is little chance that she would have known about this option without an attorney. I wish that we had known about this at the time to help.
I give these examples because, far too often, Texans are not friendly to Medicaid because it’s seen as a taxpayer handout to people living on the government dime and being too lazy or incompetent to handle their own affairs.
May I suggest that if you have between $5,500-$8,000 per month to spend on a nursing home’s out-of-pocket costs then Medicaid is irrelevant; however, most people do not have this much in the bank (as the case for our family). I would argue that quality care is a human right for us all, payable through our income taxes, and not something that we should have to pay top dollar or out-of-pocket to receive.
Lesson 8: Consider avoiding Medicaid and instead pay for home health care
This is an impossible decision to make in advance; however, if your loved one does not need to be in a nursing home then do not put them there. Instead, consider paying for a trusted caregiver to come to your home and care for your loved one as long as possible. There are also nurse organizations that provide this service as well if someone needs more advanced treatment.
Lesson 9: Hospice may be the best solution
Anyone who has 18 months or less to live will qualify for hospice care (either at home or in a hospice care facility). Keep in mind that Hospital staff will evaluate someone's condition if you are unsure. The benefit, as a friend explained to me when her dad was dying, is that they would handle everything for him and they did so with the utmost care and compassion from a trained and professional team without them needing to pay at all since this service was supported through private donations. This means that they also did not need to go to the hospital and explain his medical condition all over again if he needed assistance. He died a few months ago but she said it’s the best care they could have given under these terrible circumstances.
Reminder: This post is the author’s opinion which means please talk with a reputable and licensed attorney in your state before taking any legal advice or making estate planning decisions. These examples (including any unforeseen omissions or errors) are from true personal experience in Texas and are for illustrative purposes but are not meant to represent all outcomes.