Blog #23

As I type, I’m not only noticing the irony of a rainy day but also that I feel like I’m in a bit of a cloud with yet another caregiving family sitting in a dark place – a medical crisis where the lack of planning and steps of prevention have unfortunately led to an all too familiar story of a healthcare system essentially taking over the reigns of care. 

What level of care will be needed? What service/facility is allowed to provide that kind of care? What does Medicare cover? How and when does Medicaid take over? Who completes the Medicaid forms or ensures they are completed correctly? Where is there an open bed? What are they eligible for?

Unfortunately, considerations of geographic convenience, homelike feel, reliability of staff, staff to patient ratios, quality of food, Medicare.gov star rating, etc. are now off the table. Those are the topics of quality conversations that happen when there is time for planning, research, tours, financial planning, and ensuring that the person with the diagnosis has their wishes and preferences met as much as possible. 

We know the correct quote, don’t we? “Lack of planning on your part does not constitute an emergency on my part.” Unfortunately, this quote is all too true in these crisis situations. Your crisis will not appear to be an emergency on anyone else’s part and services/facilities will confidently say “no,” give limitations, refer you to inappropriate alternatives that will waste your precious time and you will find yourself late-night doom-scrolling for services while falling for internet-based “free consultation” opportunities that you will later regret and searching for “senior services in _____ area,” only to be bombarded with high-pressure sales and marketing and options that won’t help your situation. It is at this point where you will learn first-hand that most of healthcare is financially driven rather than humanity and quality driven. 

While I am unable to change the cultural system of aging and healthcare in America at large, I can and will always continue to encourage individuals to take responsibility for their planning, communicating, advocating, and preparing for one of the most inevitable things we know – that we will age, if we don’t die before. 

At a minimum, if you are in your 20’s, 30’s, 40’s and beyond, you should already have your advanced directives completed, and those who are included in these plans need to not only know that you have chosen them to be your voice and advocate, they should have copies of every form that you have put their names on. Advanced directives include forms such as Power of Attorney for Healthcare, Power of Attorney for Estate (or Property), living will, will, and POLST (if/when appropriate). 

Second to this is the value of simply doing the work of learning your options and how they work. For example, there is a local memory care community that takes Medicaid, which is a beautiful and smart option! However, there are very few of these types of communities in the state of Illinois and this particular community has a waitlist of 60(!). It is integrated into a community that has supportive living, assisted living, and an additional private pay memory care so all residents living in those levels of care are given priority to move into the memory care that takes Medicaid before any outsider is even considered. 

I mention that all to say that if you are a kind of person that just verbalizes things like “when I get dementia, I’m going to move into _____________ community because it is nice” or “it is close to where I live now” or “I knew someone that lived there” or “they seem friendly when I visit someone there”, etc., you will be sorely upset when you arrive at the door with your suitcase to learn that it was never a true option for you. And you realize that if you wanted to live there, you should have moved into the assisted living area several years ago to reap that benefit. Even then, if your symptoms worsen before an opening is available, you may still have to find an alternative option, right in the middle of a crisis situation and you’ll land up in a place that “has an open bed” rather than what you always assumed would happen. 

This is plenty to digest in one blog, so I will save more ideas for a later blog. But know this: lack of planning on your part will very much create an emergency on your part as well when it comes to healthcare and aging. Let’s work together on learning what we can about ideas, options, and possibilities so we can express our goals and desires and start working on them legally, financially, emotionally, and successfully.