One of the reasons I miss work so much is that I typically made friends at work and working is something I’ve done most of my life. I started working when I was 13 during the summers at a place called Wiegand’s Lake Park, a private, family-run park that specialized in hosting corporate picnics for employees of companies in and around Cleveland. As the youngest of five boys, I followed in the footsteps of my older brothers by working there. I was paid 35 cents an hour for, sometimes, back-breaking work. Among other things, when a event was being held I had to walk around with a cardboard box under my arm picking up all “waste” the size of a match stick or larger including dirty diapers and other equally gross stuff. Even worse, some people seemed to enjoy watching me collect their trash. I even remember that some people would throw their cigarette butts and other junk on the ground just to see me bend down to pick it up!! On days when there was not an event at the park, I did other things like painting the exterior of buildings, mowing lawns, and numerous other tasks. I remember one time the lake was drained in order to dig out the mud, muck and other crud that would build up over time. It was on that job that I lost my balance pushing a wheelbarrow heavy with that muck and I badly tweaked my back. To this day I still have back problems that originated with that mishap. I actually look back at that job fondly, as it was my first, and I’ve had many since then but will not likely have another. With my diagnosis of Alzheimer’s disease, without a miracle I know I will never be in the workforce again.
I know that people really look forward to retiring and starting a new life on a “permanent vacation”. That’s great if you can afford the lifestyle and have the means to do what you want to do. One of my problems is that our life is limited because of my inability to work and we continue to spend our life’s savings in order to meet our monthly obligations. Losing two jobs in 4 years and moving several times has greatly impacted our lives. Since I was an attorney I know some people think that I must have made lots of money – after all most attorneys make lots of money suing people, right? Well, that may be true for some attorneys, but I used to tell people that I was one of the “good guys” because I didn’t do litigation! I specialized in transactional real estate and I worked as an employee for various large companies documenting all things related to the companies’ real estate holdings. I created everything from brokerage agreements, to leases, purchase documents, construction documents, etc. Yes, I did make decent money, but not like partners in large or even semi-medium sized law firms who are doing litigation and/or having multiple clients. I can’t complain though, or at least I shouldn’t. I had a pretty good run and had fun doing it. I just wish it wasn’t over. These days I don’t know what to do with myself half the time and I don’t feel productive. I can only ride my bike so far and so often because of my bad knees, and I can only work out so many times a week before I get bored with the same old routine. I miss the connections and sense of community as much as I miss the income and the sense of being useful.
Fortunately the Southland chapter of the Alzheimer’s Association has helped to fill that void for me. Lisa and I have made some very good friends through the Association, both with some of the staff as well as several of the caregivers/care partners and those with the disease. The staff at the Alzheimer’s Association is incredible and the organization has helped us a great deal through its programs and events. One of the most impactful events was when Lisa and I were on a panel on stage and spoke in front of a large audience about our current lives at the “Early Memory Loss Forum” which was held last year at the Skirball Center in Los Angeles. We have made several friends through the various programs they sponsor at the LA Chapter’s office. We first started going to the “Memory Club”, an eight week program with meetings every two weeks. The first time we went I was very reluctant and didn’t really want to go. I think I was in denial, and also afraid of what would be said and done. It turns out it was one of best things we have done since I’ve been diagnosed. We are now still going to the Association as part of the “Grad Club”, which is sort of an alumni group for those who go through the Memory Club. The bottom line is that the Alzheimer’s Association has been a lifeline for us as a resource, a means to meet others in the same situation and a way to branch out into doing even more to combat this insidious disease. This is a major reason why Lisa and I have created Alz Across America – to show by example that while it is a shocking change to one’s lifestyle, a diagnosis of early memory loss does not mean one needs to be shunned into the shadows to deal with all of these issues alone. The Alzheimer’s Association helped us get to that space and we want others to know that help and understanding are available to them. Through Alz Across America, we are now building new connections, and creating communities of support, and helping to provide a means for new friendships to develop. We are creating these structures here in our immediate community in Southern California by starting coffee groups and walking groups just to name a couple of examples. We hope to obtain a big purple bus to travel around promoting awareness and fostering communities of support in California and eventually throughout the country as well. This gives me purpose and hope, and is really what keeps me going from day to day. I try to do my best to make each day count and to be as productive as possible so that I feel that I am part of the solution and not part of the problem.