Road Trip To Savannah, Day One (or How Not to Travel With Alzheimer’s)

Well, it’s been a hell of a long week. I’m grateful for your patience, and I’m going to be filling you in over the next few days about not only the doctor’s visit but about the entire trip. There were traumas along the way, and joys, and they are all an important part of the overall narrative.   I learned more about my limits as a caregiver (mostly self-imposed, of course) too, and that I need help and support as much as Jacquelynn does.

Not an easy lesson for me, by the way, and one still not fully embraced.

So, let’s get started.

The purpose of last week’s trip from Cincinnati, Ohio to Savannah, Georgia was to visit Dr. Mary Kay Ross at The Institute For Personalized Medicine.   We were referred to Dr. Ross by MPI Cognition, the world leader in research and progress fighting and reversing cognitive decline. The founder of MPI and developer of the ReCoDe (Reversal of Cognitive Decline) protocols, also known as The Bredesen Protocol, is Dr. Dale Bredesen. I’m not going to go too deeply into Dr. Bredesen’s career, as you can find that through many channels. As I indicated in an earlier post, I was led to him by the operator of a home care service whose own father had passed from Alzheimer’s.

But I’d like to revisit this trip chronologically and relate the events to you in the order they occurred, so let’s go back a week…

 

Alzheimer’s can amplify personality traits, especially those related to emotion. As truly beautiful person as Jacquelynn is, even she will tell you that patience has never been a virtue of hers. While I would argue that she has shown endless patience with me over the years, I must concede that she can occasionally be a bit, um, anxious, when made to wait. She’s also more than a little claustrophobic. Never cripplingly so, but not fond of closed spaces or of being incapable of moving about.

Our first day on the road was supposed to get us to Asheville, NC, a bit more than six highway hours. Too much, as it turns out. In spite of frequent stops and outside-the-car exercise, Jacquelynn was stressed out and in tears in less than five hours. The incessant road noise (the one and only complaint I have about this car) was translating into her nervous system as a very rough ride and she was near frantic. A quick pop onto Priceline and we had a room in Clinton, TN for the night. She’s asleep less than an hour after we settle in.

I feel I should examine her state of mind more closely here. In the last hour or so on the road, Jacquelynn had transitioned from chatty and light to total silence. I’m not sure how long it took for this to register in my (often seriously lacking) consciousness, but when I looked over to see her staring straight ahead with tears streaming down her cheeks, I launched into investigation mode to get at what had her so upset. She had much more difficulty than usual expressing herself to me, which raised my antenna quickly. When speech problems worsen, she tends to get more and more frustrated as the words won’t come and her impatience with herself increases. The resultant rise in cortisol, we would learn later, wreaks havoc with cognition, creating a vicious cycle which feeds upon itself continuously until something breaks the cycle. I’ve seen enough of this that I immediately know that calming her is the most important thing I can possibly do, so I jump off the highway at the first opportunity and swing into a Cracker Barrel parking lot. I get her out of the car and walking just a bit, to dissipate the built-up energy. Success was limited, to say the least, but I did get her talking. As she slowly relaxes, it becomes marginally easier to express her thoughts, and that’s when I jump online to get us a room close by.

Mind you, she’s not exactly calm yet. As we get back onto the interstate, she’s asking, in a very cross and accusatory tone, why I’d plan the trip like this and put her through such torture. It’s not easy to listen to this, but I know she’s not truly aware of her words or tone, so I blanch but I endure and in less than fifteen minutes, we’re parking in front of our hotel for the night.

At this point, the tears are still flowing, but they’re slowing, and she’s friendly(ish) with me now.

 

I do realize that when she’s cross with me like this, it’s not really about me.   That doesn’t remove the sting, though.   I cry a LOT after exchanges like these.   Being accused of insensitivity toward the woman to whose health and life I have dedicated my existence hurts like hell.   But it isn’t truly me she’s mad at; she’s mad at herself for the limits that Alzheimer’s has imposed on her, and she lashes out at me simply because I’m here. And I always will be. I believe in her healing and recovery, and I will endure whatever I must to see her returned to herself.

 

I will save my Jacquelynn.

 

*The lead artwork for this post is a self-portrait I did many years ago which just seemed to express the emotions Jacquelynn was battling during the final hour or so of this first day of the trip.  I also feel myself pulled ever closer to this state when she rails at me, which makes me feel like such a failure to her and to myself.

2 thoughts on “Road Trip To Savannah, Day One (or How Not to Travel With Alzheimer’s)

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