Living well with dementia is a phrase I remind myself every day. It’s a phrase that has different definitions depending on who you ask. By that, I mean that living well with dementia is a very personal, very individualized set of choices and decisions to each PLWD (Person Living with Dementia). What I do in my life to live well with dementia is in some way unique to how someone else lives well. Granted, there are some basic, general tenets to living well with dementia that we all share, and for those not familliar with the concept I highly recommend checking out the resources on the website of the Dementia Action Alliance www.daanow.org in addition to watching the DAA and PBS produced documentary, Revolutionizing Dementia Care, which you can access from the DAA site.
For me, living well with dementia means to continue to have dreams, set goals, and work towards making them a reality. I have written before about the ways that my symptoms have necessitated revising my dreams and goals for opening my own business. Never willing to give up, or give in, but being honest and open-minded enough with myself to recognize when a plan needs to be tweaked to adapt to my condition. I have many ideas for business ventures that would be successful, only a few of which I have shared on this blog.
But are these really dreams and goals, or are they delusions of a mind demented? How can I tell the difference?
I recognized early in this process that as an entrepreneur with dementia, it would be a tough hill to climb alone. People question the business planning ability, people question the leadership ability, people question the sustainability of a business created by an individual with cognitive issues. But I have always felt I had what it takes. And i insured my belief in myself and my ideas by deciding to include others in my entrepreneurial process. Yet to date, it hasn’t been enough to bring these dreams to fruition.
My health situation continues to be fluid. The type of dementia I have is still to be determined. I head to Boston in less than two weeks to meet with a team of experts. Meanwhile I notice changes. I’m not writing as much as I used to, partly because it is harder to keep my mind focused. Case in point, this blog post: I have been ruminating about it for days, and, finally determined to write it out, it has taken me a few hours to write what I even recently could get out in 30 minutes. More days spent on the couch, not even getting out of the sweatpants I slept in. But I am not depressed. I just feel more….disconnected, I guess might be a good word.
So that brings me back (the long way, I guess) to the main point of this blog post. Are my dreams and goals drifting to other side of reality, succumbing to dementia? I honestly don’t know. All I know is I don’t want to give up. Dreams become goals, and goals require a plan to get from Point A to Point Z. I used to know what each point along the way was to make my dreams come true, to reach the goals. Now those in-between points are hazy, out of focus, and I don’t know what to do next. With the way things are, I’m not sure how many more years I’ll be able to continue living here in Maine, which puts another layer of cloudiness on my “business plans”.
But entrepreneurship is not my only dream. I want to travel. I am grateful to have had the opportunity to roadtrip across the country on a few occasions, and to have been able to photograph and document those trips to preserve. But there are other places I want to experience, other lands I want to see, and I can’t help but wonder if it is an unrealistic expectation at this point, if ‘that ship has already set sail’ (pun intended.), since driving is on its way out for me in the future, and getting lost when I’m on my own is a real and current thing.
I guess a lot of it boils down to where I decide to expend my mental energies. PLWD will understand, and others may understand, but to live well with dementia requires a lot of effort on my behalf, and I’ll be honest, it is tiring sometimes. Mentally and cognitively tiring. And maybe the amount of ‘cognitive reserve’ I have in the tank is lessening, if that is even a thing. Sorry, it’s a hard feeling to describe in words, lol.
So let me repeat, lest this post be read in the wrong context and tone: I am not depressed. I intend to continue to live well with dementia, I am just questioning now how to further tweak my definition of the phrase. There is some regret that I haven’t accomplished certain things, achieved certain goals, but that regret wouldn’t be there if I wasn’t trying to make something happen. For me, that kind of regret is better than regretting not having attempted something at all. Does that make sense? It’s ok if it doesn’t, it makes sense to me, lol. I tried to make this post as clear and organized as I could, but I feel like I am rambling now, so I’m going to look for some cool pictures to add before I post it.
Thank you always for following, reading and sharing my blog. I love looking at the stats and seeing how many people read my ramblings, and from how many different countries my blog has been read in ( 4 so far: U.S., Aruba, Canada, and the U.K. 🙂 ). And I love reading your comments, encouragements and suggestions.