Originally published September 8, 2013
Well, this week we are back on a personal note exploring the interesting paths and passages of life with dementia. It has been a week of could-have-beens and what ifs and yet, well, I’ll tell you the story.
I’m not accustomed to sharing the intimate details of my medical history. I am not comfortable going into various details about parts I do or don’t have or how I happened to get to that point. My close friends do know of some of the challenges I face, but that is usually as far as it goes. This story, however, has that ever present caregiver component of “what do you do when.” Since there are now a number of people that look to me for tidbits of wandering wisdom, this appeared to be one of those opportunities where sharing the personal might help others in their own journey.
I was diagnosed with gallbladder disease somewhere around five years ago. At the time, we were living in Canada, and, although I could have had the operation at no cost to me, well, you have to be in acute stage to get there. Since I’m not overly comfortable when people want my body parts—however damaged they may be—I worked pretty hard at avoiding things that would stir up the dragon living deep within my stomach. As the situation with my husband became more defined, I began to wonder what I would do if there was an emergency. There is no way that, “bring me the cell phone,” or “call 911,” or various other possibilities were going to get anywhere. So I determined that I would try to learn something about what “acute” meant and do something about it before I was left writhing on the floor attempting to communicate with a disoriented spouse.
But, then, life gets in the way and you figure that, “it’s not really that bad.” That brings us to last weekend. It seemed like I couldn’t eat anything without starting that dull, achy, half-sick feeling. And it took hours for that feeling to go away. Tuesday we headed off to the store to pick up needed groceries, and I looked for things I had learned could help, at least sometimes, lower the impact of a gallbladder attack. Arriving home, he was sure I was mad at him, and I had to convince him that wasn’t the case. I think he was concerned that he wasn’t helping enough, which was far from the truth. An hour later, none of my tricks were working; it was time to have it checked.
Now, as my friends know, routine reigns in our home. It is the way we work though each day with relative calm and there has to be a really good reason to disrupt it. After an hour of listening to that naggy little voice in my head, I finally told him we were going to have to go “to hospital.” I wasn’t feeling well, and we needed to check things out. I doubt he could get there on his own, but he does recognize the route. He was terribly concerned about who was going to drive us (that would be me, dear) and he was worried about me and how I was feeling (understandable, this sort of thing doesn’t happen all that often). We managed to arrive at Urgent Care and take our place in the queue.
As you know, these sorts of visits are not quick. Which is why I prefer making appointments for him—he gets terribly impatient with it all. For me, however, he was willing to sit and wait. And wait. While I got a bit better. In fact the PA, not seeing immediate symptoms, was not sure what the benefit of an exam would be. He decided a poke or two would not be wasted.
Ouch!
Hmm. When was the last time you ate? Maybe a sonogram would be a good idea.
Evidently it was.
Now the whole game plan changed. I wasn’t going anywhere. Period. They were discussing options that would help me with my spouse. Like check him in and give him his evening meds and bunk him with me. Might have worked, except that hooked up to IVs, blood pressure monitors and other paraphernalia it’s a bit difficult sprinting down the hall to see what has become of your spouse.
Plan B. I called his companion fellow and arranged to have him picked up and taken home. Preview of what might have been. Hopping up and down a number of times, hubby kept looking for someone to take us home. He knew his “friend” was coming, but why couldn’t he be there already? It was slowly dawning on me that he was certain he needed to take me home. We were waiting for our get-away ride. Well, dear, they want to keep me.
Things are a bit blurred after that. Other than the obligatory phone calls to various folks with a “need to know,” instructions to companion person about what should or should not happen in the next 24 hours, scurrying medical people finding a place to stick me overnight. Sigh. At least it wasn’t some massive emergency with ambulances, lost husbands and clueless medical personnel. Object lesson here: Know what your backup plan is and make sure there is at least one individual in the world that your loved one is willing to trust.
The next day I was again reminded that my dear spouse was, at heart, a knight. I had called home in the morning to check on things and make sure that the night had gone smoothly. Things were a bit out of order, but all in all not bad. During the day, I made contact once or twice. Evidently the only way my dear knight could be distracted from my whereabouts was to take him for a drive. A long drive.
When they returned home I’m told that he was certain I had gone across the street. Off they went on a walk to try to identify which house I might have disappeared into. This is not a surprising development. There are many times when my alter ego has gone off somewhere and left us with no news of where she is going or when she might return. He is certain she goes to a house somewhere near (after all, the car is still here), but evidently he wasn’t sure enough to press the issue.
Back in the house again. This time he is adamant. I do not need surgery; he is going to the hospital and he is bringing me home even if he has to walk. Well, short of strapping him down in a chair, what is the poor caregiver supposed to do? Off to the hospital they went.
I am forever discovering the most interesting twists and turns in my husband’s mind. Even battling dementia, he still manages to find solutions to problems he considers critical. Finding me was one of those problems. It’s my understanding that when they arrived at the day-surgery unit at our clinic they were, at first, denied entry. I’m not sure of the details, but evidently the moment the gatekeeper had his attention elsewhere, hubby was through the door and trying his best to ask for me. Close on his heels, his companion was, of course, far more articulate. With the countdown to surgery already started, my husband and his “buddy” suddenly appear at the foot of my bed.
He was so happy to see me. So concerned about how I felt (I probably looked rather pathetic) and needing, desperately, to help. The staff was wonderful and agreed that the two of them could sit in my little cubical and await my return.
When the world came back in focus, he was again the helpful gent. Holding things, handing me juice, holding my hand, and helping me dress. How far back into his mind did he need to reach to show the support he had provided in so many other circumstances, to be the protector, my knight?
The rest of the story is pretty much your normal victorious return home from quick and dirty surgery. Hubby’s companion stayed with us over night then went on to other things with the assurance he was available if I needed help. Through a friend, I located a couple not far from us that could retrieve my car. That, of course, was another relief for my husband. Abstracts are not his forte, and I couldn’t explain where it was or why.
My beloved husband has been attentive, concerned, and caring. He has been helpful when we run into “bending” or “lifting” activities. No, he still can’t keep track of who I am for a whole day and I have to remind him several times a day it isn’t a good idea for me to drink wine just now. But I do know that even when he can’t keep track of who I am, I am still somehow his northern star.
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