Everyone should attend to their legal affairs — wills, power of attorney, advanced directives, and the like — in good time, but an MS diagnosis makes ‘good time’ mean now.
Legal terms like “last will and testament” are to people in their 20s like broccoli to a child. “Durable power of attorney” is to 30-somethings polyester to a fashion model. “Advanced directive” (sometimes known as a living will) is as close to a person’s mind at the time of diagnosis with multiple sclerosis (MS) as game seven of a world series is on the first day of spring training.
Still, these legal instruments are imperative to someone living with a condition like MS, and it’s time that we talk about them.
It might be easier to couch topics, which sound like end-of-life issues, more as financial-planning matters for people with MS to make them easier to discuss early in life. For if we really think about it, that’s what they are. A will may be the ultimate in fiduciary planning, but there are many ways in which the other documents can be seen as ways of managing money.
It can all seem a bit overwhelming and might be something that we take a while post-diagnosis to consider. It is important, however, that we get on with the task at hand as soon as is practicable. It can even start with something as easy (and far more important than one might think) as organizing passwords for times we may be unable to help ourselves.
I’m a firm believer that forewarned is forearmed. Knowing your rights should MS take a difficult turn is of the utmost importance. It might not be comfortable to think of being disabled, but it’s less so to be in such a situation and be unaware of what you’re entitled to and from what you’re protected.
Beyond disability rights, the National MS Society has prepared a document that explains things like insurance options, legal terms, and family-law concerns. These are terms with which every adult must come to grips. Those of us with chronic illness just need to do it with a hastened sense of urgency and with an eye to a different set of probabilities than others.
Financial and estate planning has its share of pitfalls and common mistakes. As we might need access to retirement funds on a different schedule than the average person planning their future, it’s important to work with someone who understands not only the business of estate planning, but also the many possible paths down which our disease might take us.
Some of the things we might not think of when planning for our future might be the need for extra assistance around the house and what that might look like, both financially and personally; the possibility that our cognitive, communicative, or psychological functions may be altered by MS; and understanding that conditions like MS can have an adverse effect on otherwise healthy marriages (let alone marriages already in trouble).
The idea of advanced medical directives can be an unhappy topic to broach even for the most level-headed of families. Add in conversations of palliative care (end of life care decisions), and it may seem like we’re chucking in the towel too early in the fight. I wholeheartedly disagree.
Having these conversations earlier is better than having them too late.
I oft say that one cannot live in the “what if” space of life, but having a few “then I would…” answers has helped me live in the driving seat with MS far more comfortably. I like to think that the passengers who are along for the ride have an easier time of it as well.
It’s like driving on a narrow country road in my adopted Ireland. You can get caught up trying to see what traffic might be around the next bend, or you can irresponsibly take in only the views around you at any given moment.
The sweet spot is to enjoy the drive, while being aware of what oncoming traffic might lie ahead. Legal preparations, made ahead of time with those important to you, can make for an easier journey for everyone…even if the road becomes bumpy.
Trevis L. Gleason is an award-winning author, chef and blogger who was diagnosed with multiple sclerosis in 2001. He lives in Seattle, Washington and County Kerry Ireland with his wife Caryn and their Wheaten Terriers, Sadie and Maggie. His website is trevislgleason.com. Trevis’ book, Chef Interrupted, is available on Amazon. Follow him on the Life With MS Facebook page and on Twitter.