This blog began with our walk across the country from 2011-2012, revisiting that journey again last year. In between I reported on our hike of the PCT and how Cindy and I have done our best to live well despite the adversity we face. Lately I claimed there remains little for me to report on in terms of a caregiver in the face of Cindy’s slow, incremental decline, nor can I report on current journeys that reinforce the creed of “Love kindness. Build community. Believe in Humanity.”
Caregiver assistance comes and goes in cycles. From the spring until now I had very little coverage, making it very hard for me to get any new projects up and running. That appears to be changing soon as I found a new PCA who wants plenty of hours and can be flexible with when they occur. With the promise of more free time I find that, come to think of it, there are still things to share about my final journey with Cindy.
I can detail further the four stages of decline I described in this blog four years ago. Someone is now using these four stages as a framework for filming a documentary about us. Going into depth about those stages on this blog provides useful information to readers while also helping the documentary. I plan also to review some tips for caregivers, and provide a caregiver’s perspective on some other things as well.
While I still cannot go traipsing off on journeys, I can dream, turn those dreams into plans, turn those plans into logistics and report on those logistics. In fact, perhaps I can do this interactively, inviting readers to help with those plans, particularly if they live close to the routes I may take hiking or biking. Readers could help shape the route and provide suggestions for “kindness” stops along the way, where I might provide a service for others.
I would like to see this website become a platform for what I call “You Hikes,” or “You Bikes.” Borrowed from the concept of thru-hikes, where a designated trail is hiked from end to end, a You Hike is one that uses designated trails as a backbone for long distance journeys, with added roads and/or trails that satisfies the particular needs of the sojourners. An example is when we hiked the American Discovery Trail from west to east, then added a few hundred miles north to arrive at our home in Norfolk.
So stay tuned! More is to come, more frequently, at least if the current rosy outlook for caregiver assistance holds.
Hey Kirk, so good to hear from you again. I am glad you have more coverage, and hope it works out well.
I am looking forward to hearing more from you.
Blessings to you and Cindy and your family, Iris
Thanks! Though I wrote too soon about the coverage. Live well.
Oh, goodness, wishing you the best , and good help ASAP!
My Name is Sean Barry and I was featured on October 11,2012. About my Sean Barry Project HeartStrings.
I was a Volunteer at the World Trade Center, from 9/11/01 to 10/05/01, when I was severely injured, carrying a Stretcher on top of the North Tower, which resulted in Brain Surgery, 3 Spine Surgeries, 2 total knee replacements, shoulder surgery, respiratory complications, and have been been bedridden for the last 3 years. My pain is chronic and severe and am still looking for help.
The WTC Health Program at Mt. Sinai, NYC, can’t help me because I’m bedridden and live in Massachusetts. I still have hundreds of instruments to donate, but due to my health, can’t do anything. Any suggestions for Medical Help?
Sincerely,
Sean Barry
Bradley Street
Lee, MASSACHUSETTS
01238
musicstr47@gmail.com
413-717-2785
Greetings Sean, so good to hear from you! I apologize that it took me so long to post your message and get back to you. As a full time caregiver for a spouse in the final stage of early onset Alzheimer’s I rely on coverage to get things besides caregiving done, and lately I have not had much coverage, my last post was misguided, I do not have coverage at last.
I am not sure what kind of help you mean, because I am not qualified on the topic of medical help. If you were in Connecticut I could tell you what programs might help you from a caregiver point of view, but I’m not sure if they translate to Massachusetts. If you want help with donating your instruments I would have trouble with that personally, but I probably can round up a team of local folks that have come to my aid to also come to yours.
I can cut and paste your comment here to make it its own blog post, and do the same on my Facebook page as well. That way your plea will reach more people. Would you like me to do that?
I’ll try to tune into here better to get your reply, but it may be awhile again.
I remember your great service with Heartstrings, you have my full encouragement and support.
Kirk