Two Critical Times
Time to Ask. Some people just wait too long. They wait too long for an original diagnosis, and then even with a firm diagnosis, they post-pone planning/decision making until it’s just too late to undertake anything effectual. Hopefully, you’re not in such a ‘denial category.’
Here is what you must know and understand. Dementia is a progressive, neurodegenerative disease. This means that all your thinking, feelings, actions, and reactions are diminishing to the point where your existence is that of a child - without the capability of any regeneration. Most dementia scholars describe this process in stages from three to fifteen. I prefer three - early, middle (transitional), and final (end-of-life).
The whole process varies from one or two years to as many as fifteen. So the timing is described in terms of behavioural or cognitive terms. You must ask while you can still think and rationalize outcomes of choice. Most people can do that through the early stage, but sometime during the middle stage - that transitional period when you change from a person with some independence to a person who is increasingly dependent upon care givers - you must make the choice. It doesn’t matter whether you’re requesting a “Final Waiver” or an “Advance Request,” you must ask for MAiD whilst you’re capable of independent judgment. At least two providers of MAiD will question you until they are satisfied that you understand your progress with dementia and that you are making this request solely on the basis of your judgment.
Time for MAID. Just because you’ve completed and signed a formal “Request for MAiD,” doesn’t mean you must undertake such assistance right away. Because the rate of dementia degeneration varies so much, you may be capable of living with pleasure and purpose for a number of years. The time for MAiD (actual administration of drugs) is a time of your choice. You may decide to choose a date and time while you’re still able and independent ... or sometime later - if you complete and sign a “Waiver of Final Consent (Final Waiver).”
Preferably, the Final Waiver will be prepared in consultation with your expected MAiD Provider and it will specify a possible date and/or a specification of conditions with which you choose as determinants of an existence with which you cannot accept as “life.” These determinants or conditions may be derived from generally accepted descriptions of dementia degression like the FAST Scale* or some other clinical description of dementia behaviours.
* FAST stands for Functional Assessment Staging Tool. This scale was developed by Dr. Barry Reisberg, who is a leading expert in Alzheimer’s disease. It’s used to help doctors, medical professionals and family members understand, talk about and follow the progression of dementias such as Alzheimer’s disease.
You are not restricted to clinical descriptions. You may derive your listing of unacceptable conditions entirely by yourself - providing this listing is understandable and accepted by your MAiD provider. And, hopefully, since the anticipated timing of MAiD administration will occur when you’re no longer independent, you will include your Substitute Decision Maker (SDM) or POA-Health* in the discussion and decisions of your conditions for MAiD.
Important clarification. A SDM has no legal authority in regards to MAiD. A Power-of-Attorney -Health (POA-Health) has the legal authority/responsibility to request treatment and to refuse/decline treatment - but not to initiate any treatment (like MAID) on your behalf. Your SDM likely lives close and is providing primary care. S/he is best positioned to provide advice and clarity to your MAiD provider (or any other treating clinician). Your SDM may also be your POA-Health, but must be so assigned in your (living) Will with your lawyer. After a loss of capacity - if a Waiver of Final Consent is in place - your MAiD provider is the only one with the authority (and must bear the responsibility) to proceed with MAiD. I recommend establishing a good working relationship - with all afore named parties - well before any need for a decision.