Memory Health: Alzheimer's Support Group
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You can't understand until you take the walk

**Warning! This is long!

As many of you know my brother, my only sibling, passed in April. As my mom and dad had already passed, this left me as the sole surviving member of my birth family. And it left a very large, lonely hole squarely in the center of my soul even as I swam in a sea of warm and loving family and friends who would and have done anything for me. They care deeply for me and I know and treasure them but there's just a certain finality to knowing that all you knew since birth, your security as a child, a major support group as an adult, non demanding love, is gone. From the standpoint of your birth family, you now stand alone.

It was from this vantage point that I began to think more and more of my elderly aunts and uncles. They are spread from Central Michigan to Eastern Kentucky and I rarely get to see them, primarily at funerals. Unfortunately of late, that's occurring much to often.

Seeing as I've been given an expiration date, so to speak, I began to worry that the time was fast approaching that I would be past being able to make the trip to visit them. With this urgency in mind, and the uncertainty of how I would react to the stress of hundreds of miles of over the road travel, intense interaction with groups of people in intimate situations, and just utter exhaustion, I convinced my wife and sister in law to take me on a road trip to Michigan and Ohio.

With a great deal of trepidation on their part, and a little on my part as well, we set out. It was the first time I have ever started on a road trip without knowing exactly which routes i would be taking to reach my destination and I didn't like it in the least. But that's just the way things are now and why I placed a nice GPS unit in the van when I realized my dementia was real. Aside from the time my wandering little mind allowed my fingers to hit the wrong arrival city, the GPS took us straight to our destination each and every time. It even warned us of delays and suggested appropriate detours, often saving us a good deal of time. Hooray for modern technology!

Due to some construction, we arrived at my uncles home only ~45 minutes later than anticipated. They had a huge dinner set and many of his family were there. The evening went amazingly well and bolstered my confidence considerably.

As I sleep very little and wander through the house at all hours, I really wanted to stay in a hotel to save any inconvenience of my relatives. Unfortunately, there were only three hotels within 45 minutes and all were booked due to an antique car show. It was decided tat we would go home with my cousin for the night. I think I really came close to hurting my 90 year old uncle's feelings by not staying with him. But had we stayed there, he was determined to give us his bed and sleep on the couch. There was no way I could bring myself to even consider asking that sweet old man to sleep on the couch. So, off to the cousin's we went. It was a very nice evening/night. And, so far, my mind was performing like a champ.

The next day goes much the same until mid afternoon when we must depart on the next leg of our journey. Our little party is thrilled with how well things are going and how well I'm maintaining clarity. We easily reached our next destination by early evening, had dinner, found a hotel and had a good nights rest.

After a leisurely continental breakfast, we were off again, reaching my aunt and uncle's home by early afternoon. Again, a nice meal had been planned and provided and many of the family members were there. But this time things changed. About half way through the meal, Karen says there was a comment directed toward me and she noticed a long pause without any response on my part. I say, "Karen says", because I remember nothing of what occurred at this meal or for some time afterward. I'm now giving you a second hand account.

She said she picked up the slack in the conversation for me and discreetly shook my knee to try to gain my attention. I eventually looked not at her but through her. A blank, wide eyed distant stare. My head was moving in a slow swivel with little eye movement and no or low, mumbled, incoherent speech. Karen and my SIL kept engaging me while carrying the conversation, trying to reanimate me. They finally got me to drink some coffe and eat a few bites of pie. Apparently, I started responding somewhat after that.

The next vague memory I had was of sitting in the living room speaking with my 92 year old uncle about his time in the ETO during WWII and his Purple Heart. It was all I could do to understand what I heard as his garbled, slurred speech and throw in an appropriate grunt on occasion. But the longer I sat there, the better things got. Eventually, one of my cousin's wanted to see some of my woodworking projects on my Pinterest page and we spent some time going over these. I slowly came back to myself.

The next morning things were back on par and we were off to Bob Evans for brunch with several family members. After brunch we visited two more aunts and, considering heavily the previous nights events, cut our trip short by a day and headed home. Thankfully, a totally uneventful trip.

This little "event" at my aunt's was kind of unnerving. It was my first loss of time or spaciness and it wasn't anything like I had ever expected. It wasn't a severe fog or confusion, I was just gone, I don't even remember being in there. It makes me worry about being in crowds, especially intimate crowds, and stressful situations. Is this going to become a more frequent or standard occurrence? I would soon have the chance to find out as my annual Jimmy Buffett concert, including tailgating, with my son was coming up the following weekend.

We've been very open with the kids about what to expect as I progress but they haven't truly seen what things can be like when they go off the rails for a dementia patient suddenly. We decided to have a stark conversation about the things that had been happening to me lately and what they could possibly expect to see while we were tailgating or at the concert. Karen was not going. My security blanket would not be there. This gave us both a good deal of concern.

We need not have worried. The kids came up with an excellent proactive plan, informed those close to us who would be there what to watch for and, unobtrusively, watched me like a hawk. The day went really well. There was only a brief, ~7-8 minute episode very similar to the one at my aunt's home and they handled it very well, very discreetly.

So, I've gone through all of this to say I've taken another huge step down this dark road and it's one I thought I knew pretty much how it would feel. Boy, was I ever wrong. I found that you can't truly understand how the demented person feels when their mind goes on vacation until you take that walk yourself. All of the sympathy/empathy in the world just won't get you there. But maybe my explanation can help get you a long way down that road.

Randy

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Wow! Thanks for this thought provoking post, Randy. Glad you could make these trips and that your kids are on board. You openness with your family is a gift in itself. I am glad you took the time to write the entire post and I can't imagine how scary those lost moments were.

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Author,

Since reading your reply a couple of days ago, I have been giving your thoughts about this being a scary situation quite a bit of consideration.

Thinking back to the event, "Scary" was my initial reaction. But that emotion has quickly faded. However, I'm finding it quite difficult to describe the emotions that are replacing it. I'm concerned about my actions in crowds, worried that I may be progressing faster than I initially thought, sad when I see my wife's eyes as she is reminded yet again our time is growing ever shorter and many other emotions. I'm finding it extremely difficult to corral all these feelings and make some sense of them. But, at this point at least, scary has become the least of them.

Thank you for causing me to make this reflection.

Randy

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Your welcome - thank you for taking the time to detail and share this very intimate journey within yourself and your relationship with your wife and others. You did in fact describe the feeling of sadness when you see your wife's eyes as she is reminded that your time is growing shorter. I can only imagine that she sees perhaps the same deep sadness in the reflection of your eyes. Do you both wonder about the time when recognition of one another will be gone - I can't imagine what that will feel like to the two of you Yo

I think you are actually better at identifying feelings that you realize. You mention being worried about progressing faster that you originally thought - sometimes when I am writing, I am surprised by what is absorbed by the paper I am writing on as the purity of my thoughts is exposed almost as though the process happens by putting it all into words instead of swirling in my head and heart.

I find myself praying for you, your wife and family for time to slow itself and for every moment to be cherished. We don't know each other at all, but I am going to miss you when you are no longer able to post. You are a very insightful writer and when my journey progresses, I hope to remember everything you have shared so that I will recognize those signposts and to record my journey as you have here and I will here and in my Journal for my adult sons.

Thank you Randy for being you.

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Thank you so much Randy, for taking the time and trouble to explain exactly how you feel as you progress through this terrible disease. My husband was officially diagnosed 18 months ago with Vascular Dementia although I really think it has been there for quite a few years beforehand but they were unable to make an official diagnosis as he has a metal hip and could not be given a MRI scan. At times he is almost like his old self, but as the day progresses, he gets very confused and cannot find the words he wants. This frustrates him so much that he just gives up. He asks me to tell him what he is trying to say which is just a guessing game for me.

I do not have much knowledge of what to expect as his condition progresses. I just know that he will suffer confusion. You have given me a great insight in to how he is feeling. Thank you. It will help me to be more understanding of what he is going through.

I commend you for writing such a comprehensive letter given your situation.

Sonia

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