Season 2 Episode 2:
The comfort in our emotional routine and how to diffuse the agitation bomb
Week 72: D and I drove to her sister’s house at 3:30 in the morning to catch a flight to Destin, Florida with her and her husband for a timeshare vacation. I parked behind their car in their driveway, but couldn’t find my remote car key. I had a feel-like-vomiting panic attack that I had started the car to warm it up and forgot the key back home. We spent 15 minutes making contingency plans when D pulled the key out of her purse. I didn’t remember giving it to her. She says, “I’m worried about you,” and I thought I’m worried about me too — what if we both wind up in the Alzheimer’s boat? Even if I don’t wind up in that boat, there are plenty of other dysfunctional boats that I can see getting stuck on.
Fortunately, we had a perfect 5-day vacation. No tense moments and the sisters really enjoyed some fun quality time together. And once again, no one got lost.
Week 78: D’s 94-year-old dad is in an ambulance at his assisted living facility 10 minutes from our house. His blood sugar is 497. He’s never needed insulin before, but he will now, and for the rest of his life. He’s discharged to the skilled nursing wing of his facility. D’s siblings are all helping coordinate his care needs and are very understanding that our situation limits our ability to help.
I see how each of them interacts with D. Their love is undeniable and seemingly endless, for which I am eternally grateful. But each one has to adapt to their sister’s disease, which is a moving target. I become astutely aware of all the nuance I’ve integrated into our dynamic to help D feel comfortable and minimize the confusion that can lead to so much stress for us both.
There is comfort in our emotional routine that, regardless of intention, will be challenging for everyone else close to us to figure out. It will be easier for some than others. I’m starting to realize how this is one of many factors that contributes to the isolation that becomes so common with this disease. We are not there yet, but I see this storm on the horizon, like I will see many more devastating ones in our too-near future.
Week 80: D woke at 5 am like a kid on Christmas morning. Our future daughter-in-law is having her wedding shower and D wants to get ready. I fall back to some much needed sleep. When I get up, she has already showered and is sitting in the family room, perseverating over where her $20 bill with the little rip in the corner is. It doesn’t matter that she has other $20 bills in her wallet; at this moment the bill with the little rip represents her life savings. I know money paranoia is common with Alzheimer’s and now we are joining that branch of the dementia club as well. I know I need to change the narrative, but it doesn’t respond to logic or rationale, so I make coffee, and we go for a spring walk in the neighborhood and critique the neighbor’s gardens. Success.
She looks amazing in one of her favorite dresses with a matching purse — so happy and normal. One of the questions they ask at the research center is, “If you were at a restaurant with D would anyone think she has Alzheimer’s” — not this morning in this picture!
I know how important this day is for the bride and her family and I’m praying that there will be minimal awkward Alzheimer moments. I’m trying to be comfortable with delegating. D’s sisters are in charge of keeping her engaged and filtering anything inappropriate. They are figuring out the nuance of the moving target. The event is a success; I can breathe again.
Week 82: When the good people in our lives ask me, “So how are you doing?”, I invariably reply, “I’m doing well, I think we’re both doing as well as we can reasonably expect.” This is what I honestly believe, because for the most part, I am (we are). I don’t focus on the moments when we’re sleep deprived and on thin ice because they don’t seem to last. I’m a percentage or Likert scale kind of guy. I’m doing well 93% of the time. D is at around 85%. What married couple our age wouldn’t take that?
Lately, however, I’ve had to admit that I’m doing well until I’m not. I don’t seem to have much emotional middle ground. Even when I convince myself that I’m 93% good and in control, that 7% is starting to feel more complicated and unpredictable. I’m more likely to burn out than fade away. I don’t think that changes anything, but a little self-awareness might help with realistic expectations; maybe I won’t be so surprised if I implode.
Week 86: We’re preparing to fly from Boston to San Francisco with D’s friends who she went to Nashville with last year. We’re going to meet those Nashville friends, rent a minivan and drive to Lake Tahoe and Yosemite. D’s primary care provider gives us (me) a prescription for Ativan to use if needed for anxiety. It’s not the same as non-dementia anxiety or your typical panic attack.
Dementia anxiety is more like your brain can’t process what is happening, it gets scary, and the same adrenaline chain reaction occurs as when a panic attack unfolds, except you’re completely unable to recognize it for what it is. Rather than being able to breathe or calm your way through it, your tangled neural pathways throw fuel on the fire. The confusion feeds the stress response in an agitation driven feedback loop until someone finds and knows which color wire to snip on the terrorist’s time bomb. This is how I think of the Alzheimer’s stress-anxiety-confusion-agitation cycle.
These are some of D’s oldest and best friends, so I’m not overly concerned about being on a 6-hour non-stop flight in a packed plane miles above the ground — should I be?
