Hope for the best, plan for the worst? Is this the right approach to tackling PD? What does it mean practically? Prompted by an interesting chat conversation in the last few days, I have chosen to focus this article on ‘The tough stuff’.
I am a positive person and I fight this disease head on (I know some prefer not to use the term fight but to me it is – see my post on this topic) and I put genuine hope in the best possible outcome. I see the hope – most obviously from just a few weeks ago in the form of the Produadopa/Vyalev Pump. Its huge positive impact has renewed my hope and I pray it works well for many many years.
There are those who say you should only focus on the positive…the hope side. Hope is a topic I wrote about extensively last week in a blog where the title is a clue to my disposition, namely: YES to hope! It is without a doubt key, but there is also a reality which exists that requires a need to plan. I hate to raise it to myself let alone others but it should, in my view, be said.
Plan? What exactly?
I am not talking about the next vacation (which I booked yesterday 🙂 or the next car…I am talking about the stuff we don’t like to think about.
When diagnosed at 45, I had done the most basic future planning – the basic pension, life insurance, and some savings. It was not a topic I wanted to consider but getting PD upped the ante (by a pretty huge amount). A lack of previous attention and thought to the topic meant I certainly didn’t have the right disability insurance and long-term health care options planned and I found a number of these avenues locked to me with the diagnosis. This, of course, is a lesson learned – but one for others to benefit from 🙂
Over the last almost 5 years I been able to fix some of the items I didn’t have properly planned with some changes thanks to an awesome financial advisor. Beyond that, there are bigger issues still.
Sort out the basic mess – I don’t know how it is in other families and countries but personal financial and legal planning is a whole law unto itself. When I stopped to think about it, I realized that all of our savings, investments, assets, liabilities, mortgage policies were all over the place, almost all online but with different usernames, passwords, login details. To think that I am a CPA!
This suddenly became a huge stress to me and far more importantly my wife. We have been married 27+ years and have three simply awesome kids (not really kids, truth be told) and a dog. The responsibility for sorting most of the finances administratively has largely been mine and it was all over the place.
Taking advice from friends, I have put this into order (a very good and well-protected spreadsheet) which I have made sure my adult kids, my wife, and a trusted other have if and for when it is needed.
Believe me when I say that it is not fun running a family discussion of the spreadsheet of your life’s planning and misplanning but to me it was necessary.
A will – This was also important and was something I wanted to have in place and is something my wife and I got arranged. It was not a complex process but important to get done (and for us, we wanted to cover off certain religious-related issues with it which we were able to do).
However, there are the things I have not touched – The Tough Stuff – There is a whole set of topics which I have not addressed but which I need to. This is something the person I was chatting to reminded me – based on the experience of her late father who had Parkinson’s and set out in detail what he wanted precisely and left this world in peace surrounded by all his family. I am grateful to her for raising it…as unpalatable as it is.
These issues relate to choices of personal dignity (and who I want and don’t want looking after me in the event that it is needed) and a bigger question of my wishes in terms of choices in late stage healthcare such as the degree to which I want my suffering prolonged.
It is 100% true that I completely trust my wife and kids to make decisions on my behalf. Do I, however, really want them to debate and discuss these topics whilst trying to interpret what I would have wanted? No! The pain would be terrible to think that they’d have to deal with and possibly argue with. It could be even worse in that I may be able one day to hear them discussing it whilst I am not able to communicate my wants. I have experienced a moment of this when I was frozen and the people around me were debating calling an ambulance and I was unable to make myself heard. It was horrible and that was minor and for seconds. I absolutely need to set down what I want but it requires me to think about it.
The truth is that whilst I truly hope it doesn’t happen, I am one choke, fall, infection away from it being a reality and for my benefit and that of my family I need to take ownership of these matters. Each of us has their views and lives in a different location where different laws, religious rules and customs exist but I guess that we probably should all look into this. In NY for example I learned that there is a procedural form called a MOLST (you can google it as I did)…I will endeavor to find out the right way here, but I am resolved to at least write down for my wife what it is I want – if only to make it easier for her.
I have not yet acted on this and I would welcome people’s thoughts. I do need to take it seriously however and am resolved to start the process.
