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Caregiving Reality

With the Alzheimer’s Association at The Williamsport Home

The Williamsport Home

An interesting, exciting, and sometimes stressful part of being a writer and a traveling speaker is the opportunity to see new places and meet new people. I am becoming well acquainted with my GPS, and its quirks. The GPS isn’t one of those new people I get to meet, but I am one of those people who talks back to the eternally bland voice telling me how to get where I must go. It does sometimes make bad choices, but I make more bad choices so I am getting better about being obedient to the device.

That being said, on the morning of October 17th I was becoming a little worried. I was schedule to begin speaking at The Williamsport Home in Williamsport PA at 11:25PM and Delores or Gloria (or whoever lives inside my GPS) had me driving on what seemed to be some very unused residential streets in the outskirts of Williamsport. It did not seem like the right way to reach a prominent care facility in the area. In fact, it didn’t seem like the way to reach much of anywhere. I had visions of ending up in some dead end street with no destination anywhere in sight. That particular GPS fiasco hadn’t happened yet in my travels, but there is always a first.

Happily, my dire thoughts didn’t come true. Somehow the back street sneakily connected to a somewhat more traveled road and I arrived comfortably before it was time for my talk to begin. After quick greeting with Hilary, the Alzheimer’s Association coordinator who spearheaded the event, and then a handshake with Don the director of the facility, I got my equipment and books squared away and settled in to listen to the speaker who was presenting before my talk.

The speakers were a pair addressing the legal aspects relating to finances and care. This is not my area of expertise, but I have attended enough events to be familiar with the general points surrounding federal support during this time of life. However, this was the first time I had heard a talk given which also addressed the particular legal issues of Pennsylvania. It was on this topic that I learned something new. According to the presenters, by Pennsylvania law if a person does not have a written directive stating that they do not want a feeding tube then one must be inserted when a demented person is no longer able to feed themselves–regardless of the wishes of the family. That I did not know, and it very effectively drove home their point: make your wishes known in advance and in writing.

Next it was my turn to speak.

Every audience is unique. No two people respond to my message in exactly the same way, and no crowd is exactly like any other. Many of the special moments and personal reactions are subtle–some are shared and some are not. But some differences between gatherings are more obvious–some crowds are more responsive, some ask more questions. That day at The Williamsport Home the most noticeable difference was the number of males attending. At most of my talks the audience is predominately female–reflecting the reality that the large majority of caregivers are females caring for a parent or a spouse. But when I faced this audience I saw that about half–if not more–were men. It was interesting, and quite unusual.

After my talk was finished I opened the time up for questions. This is often when some of the most poignant moments happen–when the people I have shared with now have a chance to share back. Sometimes the questions voiced are not really questions at all but more just a sharing of the hard things or scary things that someone is facing. I remember a event last year when an elderly gentleman spoke up about wanting to bring his wife home from the hospital. He was deeply moved with emotion but as he spoke it became clear that his words weren’t so much a question of how he might be able to bring his wife back home from the hospital but rather an anguished wrestling the the realization that by himself he was unable to care for her at home, and what was he going to do?

The questions which I have no good answer for are the hardest. I had another one of those questions at the end of my talk at The Williamsport Home. An older gentleman stood up and said with feeling that he had spent years caring for other people but what he was afraid of was when his time came would there be anyone there for him?

That man gave voice to the fear of so many elderly people. There is no trite answer to banish that concern. Every life situation is so complex there is no simple answer. I couldn’t promise the man that I would be there for him, and I didn’t even know if he had family. But it didn’t matter. The man wasn’t really looking for an answer from me. He just needed to give voice to the heart of what so many feel: “Who will be there for us?”

The event finished up with a luncheon. I always enjoy these sorts of events–no, not for the food in particular but because it provides a much more extended opportunity to interact with other caregivers, share more deeply, and hear their stories. So over soup and salad we shared more of our stories, and I signed a lot of books. Another unique part of this event was that the Rotary Club had provided a grant which was used to purchase a copy of my book for every one of the attendees. I thought this was fantastic way of providing a long lasting impact from the event, and was just one illustration of how Don and Hilary were both proactive about making the teaching session as good as possible. It was a great gathering, and I look forward to coming to Williamsport again in the future.

With the last book signed and the last attendee leaving I packed up and told my GPS to take me home. Delores, or Gloria, or whoever lives in my little device was in a peculiar mood. For some reason taking the highway back the way I had come was not good enough. Fifteen minutes into the journey home Miss Smarty-pants told me to get off the 70mph highway and take a 45mph back road. Okay, it might have been a few less miles–but that hardly accounts for the slow pace. Normally I’m pretty obedient but sometimes my old rebellion rises up. Two minutes into this change of route I decided, “Nope.” A quick U-turn and I was back on the superhighway, speeding home.

Sometimes you have to do things your own way.

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