I work in eldercare last ten years. Prior to that worked in Retirement Planning for two decades at bank(s) and on Wall Street with savers and investors who saved their whole lives to pay for their old age. People don't save like they used to, the system now extremely rigged to the richest plus the cost of long term care skyrocketed. Dementia the absolute worst as it goes on for 7 stages each stage lasting several years. Stage 6 and 7 the most devastating (and expensive), each stage going on for up to 3 years or more. This becomes unbearable for the family supports as the person does not toilet, self-medicate, transfer, self-feed, and often gets angry, abusive, subject to exploitation and does not remember family or caregivers, becomes a fall transfer risk, bed sore risk, incontinence, choking risk. I don't want to burden anyone with that and would prefer the younger generations to live their lives in peace as they will have their hands full inheriting the dysfunctional United States Debt. I don't want to pay $10,000 a month or more for 7 years or more in a demented state. Once the money gone, then I become a ward of the state on Medicaid. None of us know how much longer the current administration will continue to fund Medicaid, Medicare and Social Security. Further after working in Corporate America for several decades, I know how corporate greed does not like it when anyone else has anything, especially anyone that does not contribute as that money could go to some master of the universe trillionaire who only will get richer. It seems so undignified and disrespectful to hard work and any efforts to make prudent choices. In dealing with elders, and working both the financial and healthcare sides of this, I don't agree with everything about the long term care of dementia, nor do I find it appropriate to put younger generations into the position of managing all of that, especially with dementia as it makes the elder stubborn, paranoid, angry, resistant and err, demented. For example, I know of one elder in memory care that dresses up every day to go work at Macy's department store as she had after 1955 until 2005, and pays $11,000 per month or more to do so. For a former investment banker and trader I would rather something run me over with a mac truck before I dress up every day in my now defunct pinstriped suits to pay that every month to my former boss people. I worked for hedge funds at one point who all have their finger in anything that makes money including eldercare.
My father had frontotemporal dementia and four months before he died, he asked to be euthanized, multiple times over multiple days, including every medical person he encountered in the geriatric speciality hospital wing I took him to after a bad fall. It’s all documented in their notes which I received. This was in a state with MAID. They diagnosed him with Adult Failure to Thrive and prescribed home hospice which is the best they could do. They told me because he was legally incapacitated he could not legally sign up for MAID. Apparently even though it is technically legal in my state, it is extremely rare that it is carried out, and doctors are understandably very cautious.
I wish they had been able to honor my dad’s request. I was very grateful for hospice but it would have been better to spare him and the family those last four months.
I am lucky in California to be on Kaiser.
I am not in a system that will try to use me as a cash-cow with testing and treatment when I am ready to go.
With now my second bout with cancer I have chosen what I will treat with and what I will NOT, and am already signed in with the complete directives, the complete visits with all entities, and with plans to move to Hospice and Palliative care, with a lot of skipping out via MAiD (Medical Aid in Dying). Kaiser does support that.
It becomes very problematic, however, allowing someone with an impaired mind to choose to die. And let me tell you ALSO UNCOMMON. They will not make that choice, most usually. Only sound minds capable of reasoning choose this, I do believe. It's a VERY PERSONAL decision, just as is Hospice itself.
You will not only be updated about laws, encouraged to participate in activism, but will have great info at your hands when you are ready to consider your own Final Exit.
I also encourage a good read of Kate Christie's good book VSED Handbook. She helped her mother exit in this manner.
Crucial to your own plans is a DETAILED well written statement NOW attached to an advance directive, and then scanned into your own charts. This should say exactly what you want and do not want and should refuse ALL artificial mode of nourishment when you are unable to voluntarily eat and digest food without help, including but not exclusively all IV fluids and nourishment, all NG to PEG tube nourishment, all puree and hand fed food, and etc.
You will also need to familiarize yourself with Pegasos and Dignitas in Europe. The paperwork is ONEROUS and even includes divorce papers.
Read author Amy Bloom's memoir In Love about her husband with early onset Alzheimer's who went to Dignitas for final exit.
Do know that there are way, but you currently need to be in control to administer them.
I do not believe we are close to anything else anywhere else much as I, at 82 and a retired RN would wish we are.