No surprise, Ralph’s subscription to Alzheimer’s has been renewed. I know the analogy is illogical but that’s how I sometimes think of his annual mental check up.
Does that seem blasé?
It’s just that every July the routine is so similar. We get to the building after a long anxious car ride, Ralph takes the standard hour long test while I meet with our Nurse Practitioner Stephanie privately, I tell her (every time) that I sense Ralph growing less engaged, Ralph joins us after his test and Stephanie checks the results before telling us that he has pretty much held steady. Some element of the test usually shows what she calls “a little slippage” from the previous year but never as much slippage as I expected or think I’ve noticed.
For instance, this year his tests results showed that compared to last year, he forgot three more words on the word retention section or two connection on the connect-number-and letters section (a test I found difficult myself when I took it as a part of Emory’s healthy aging study). Stephanie seemed less concerned about those scores than she was that he had answered two more answers denoting possible depression than he had last year. So we have upped his lexapro back to what it was a few years ago when in retrospect he seemed almost jolly.
I think Stephanie is wonderful, perceptive and caring. I think so particularly after she specifically asked if I still travelled to see my grandson; I said yes with a bit of embarrassed hesitancy, remembering a call from a friend who with best of intentions told me Ralph seemed lonely.
“Well you definitely should,” Stephanie began and in that half second before the next word I groaned to myself that she’d found me out as a caregiver will to abandon her caregivee), “continue those trips.”
So I love and believe totally in Stephanie.
But after four or is it five years, I’ve finally acknowledged to myself that the annual test is limited in its efficacy. My personal test results for Ralph were a little different this year. What I noted were two concrete-ish differences from a year ago and maybe a third.
- On our to Emory Ralph told me he was beginning to feel foggy more often. “Foggy” is a term he used a lot before he went on his medications way back when he was first diagnosed but has not used much since. I was a little, if not exactly alarmed, concerned. (Of course, when I brought up what he’d said in front of Stephanie, he didn’t remember saying any such thing and denied any new fogginess.)
- Two or three years ago, Ralph happily agreed when I suggested we pick up Cuban sandwich at a funky joint nearby that we used to frequent when we lived in the city. The next year he became less enthusiastic about the inconvenience of going out of our way to a restaurant. Instead we fell into the habit of dropping by the on-site café every time we came to Emory, which was quite frequent while Ralph was in his now defunct Merck study. But after this visit when I suggested the café, he demurred, not exactly adamant but firm. He wanted to swing through a drive-through, lately pretty much the only place he’ll reluctantly eat away from home. The Emory café is nothing special but the food is relatively healthy and I have always looked forward to that little break in our routine, a little moment of civilized social normalcy. That his unwillingness to eat in a café was upset me may say more about me than Ralph. Food has always been kind of passion. I feel the loss of eating out sharply. It was one of the few activity we always shared as a couple, both of us adventurous and willing to try pretty much anything, both of us fascinated by the culture of food, both of us drawn to both high and low cuisine. I briefly thought of insisting we go to the café, and maybe I should have. Instead I acquiesced and swung us into a Burger King. But I was resentful. After ordering Ralph his sandwich and soda, I passive-aggressively ordered only a diet soda for myself, while reminding Ralph, “I’m on a diet and there is nothing on the menu I could eat.” (Oh, please, I was starving by then dying for a greasy burger.)
- Bonus difference point, He didn’t notice I was upset. Me being passive-aggressive and resentful is nothing new in our relationship. It may have been the bedrock of our relationship: whenever I got passive-aggressively resentful, Ralph more than noticed and would turn surly and aggressive back. So I honestly don’t know if change number three is for the better or worse….
Alice in Memoryland 
Hi Alice, my husband score is still fluctuating up-and-down all the time. I’m sure some of it has to do with his depression and severe anxiety. He also has an unusual autonomic response where his body temperature, blood pressure, and wakefulness drop and he becomes even more confused. No one seems to know what is causing this. Because we have another insurance we had to see their neurologist and she is now questioning his MCI diagnosis Claiming “maybe it’s all anxiety”. Well, I’m not sure that anxiety explains when my husband doesn’t know how to begin a report for work, follow a recipe to cook dinner, needs me to explain the signage when we travel to new areas. I know I should be happy his progression has been rather slow But wallowing in the space between normal and Dementia sometimes makes me feel like I’m being half drowned. It’s as if I’m going to be OK but I can’t quite get the air I fully need. I used to pride myself on being the resilient one, The one who could cope well, stay optimistic and keep levelheaded but I don’t want to be that person anymore. I want to think about me. After just finishing our son being in high school and caregiving three parents I’m simply burned out.
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Hey Alice –
Your post has generated some interesting (and heart breaking) comments. Hope your commenters keep them coming.
I’ve noticed before that Ralph and I seem to be on roughly the same summer annual exam schedule. It’s late July, and by now I should have met with my neuropsychologist for an hour interview, and had 6 hours of testing. This year would have been my 4th year of testing. This year I asked myself: why?
After my last 2 round of tests I heard pretty much the same as Ralph: a little bit better here, a little bit worse there, overall not much different, and unfortunately the same diagnosis. She encouraged a healthy diet and lifestyle like those promoted in the articles we’re all so tired of reading. All my meds stayed the same.
What’s the point of doing this every year, Alice? I suppose I could list a lot of medical tests that are more painful, uncomfortable, and just generally a lot more unpleasant than cognitive testing, but as you’ve written about, cognitive testing is tiring and stressful and worth avoiding if you can. If my treatment isn’t going to change, why go through this?
So this year I didn’t call to make the appointment.
Cognitive tests are important, of course. The first tests were critical to making the diagnosis, and I’m sure repeat testing makes sense if a patient’s symptoms suddenly change. However, the “personal test results” for Ralph that you mentioned are far more important, I believe, for most of us most of the time. My wife can’t assign a numerical score to my cognitive performance or tell you the percentage of men my age who do better or worse than me. Her observations lack the aura of infallibility associated with charts and numbers generated by doctors, the High Priestesses of the Religion of Science. But her judgments and observations are based on a lot more data and are more accurate and complete. Unless my neurologist insists, I’m skipping my tests this year (and maybe beyond!) because I really don’t think the results have as much value as my wife’s “personal test results.”
One last thing – you wrote that Ralph doesn’t talk about feeling “foggy” so much now. I noticed a while back that I don’t say that as much, either. Trazadone has improved the quality of my sleep and so perhaps I am more rested. However, I think what’s really going on is that “foggy” has become normal for me and so I don’t comment nearly as often. But it’s there.
Oh, a 2nd last thing – take your trips. I keep telling my wife the same thing, to get away as often as she can now because the logistics of doing that inevitably will get more complicated when safety becomes an issue. You need time to refresh physically and emotionally. Caregiver, heal thyself!
Third and final last thing – I wrote my comment offline and then saw others’ comments when I blocked and pasted mine here. To those considering whether to continue cognitive testing, please consider that my decision to skip testing may be stupid!
Heading Somewhere
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I totally respect and understand where you are coming from (we haven’t had the full spate of tests since Ralph’s first diagnosis and doubt he’d go for it). While I feel it is worth the effort, Ralph would probably agree with you. I have to say I am struck by the fact that you make your own appointments and want you to notice too. That is a capacity that Ralph has lost. But I also am having second thoughts, wondering if I should be consulting with Ralph and taking his feelings and thoughts more into account. As usual, your capacity to articulate and empathize is humbling.
PS As I read your note, I couldn’t help thinking how nice it would be for Ralph and me to sit down to dinner with you and your wife, to sit and talk together, all of us in this together.
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My sense is that I’m not quite as far down the path yet as Ralph, but in any event, I still like the snowflake metaphor for AD patients – our symptoms at the same spot in the timeline can be so different. My memory remains pretty intact, but executive functioning (e.g., following simple directions) has become a challenge. The most disruptive symptom is that I seem to be losing control of my emotions, although that’s too complicated to explain here. So I think you’ll hear two different stories at dinner that generally follow the same plot. Although maybe we’ll have to save the stories for when we sit out on the porch with all the dogs! 🙂
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So interesting how minute differences show as much bigger variations in behavior. As for the stories, even without Alzheimer’s Ralph and I would probably describe things differently because that’s the nature of marriage I suppose. The four of us on the porch with the dogs would be nice but Ralph has to sit a little away because of his cigarettes….
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You are more tuned in to noticing changes over a period of time compared to the people doing a test once a year. Stephanie sounds wonderful and very much on your team.
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Thanks. Definitely agree and she is wonderful.
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Stephanie and others had the same response re Ned’s (I’m not sure if I use the same alias each time I comment; I just choose a name that starts with N). “Holding his own.” He scored 0 on memory and recall; a man who scores 0 in that area is not holding his own. Not being able to remember affects so many other areas! Also, he gets lost much more easily these days when out of his comfort zone. We had a come to Jesus meeting this week about his staying with me at a visit to Universal Studios with our granddaughter. He became more cooperative after I had to get hotel security involved in finding him off property. He also is pretty oblivious to what goes on with me or around him.
A difference is he still enjoys socializing and things like going out to dinner with other people. The way he is at these times makes people believe he’s “okay.” He also is mostly pleasant and not difficult. I SO appreciate that.
in limbo, in limbo, in limbo, in limbo keeps reverberating through my mind.
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Edith, I totally can imagine your situation at Universal. The thoughts running through your head and his reaction both. It is wonderful that he still enjoys socializing. Of course as I write this Ralph is busy on the front porch of our beach cottage socializing with our kids while I sit inside.So I have to think about his lost interest in socializing.
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I have been following your posts now for the past year.
My husband, Rick was diagnosed with Mild Cognitive Impairment in 2014. His was 52. In 2016 the diagnosis was MCI with suspect Alzheimer’s and he was determined to be disabled. I have written numerous comments to your posts before, but always ended up deleting them before sending I guess because it made it all seem so real.
Now, I am being hit with so many realities of what lies ahead I can’t pretend anymore he might get better.
I have always considered myself a strong person, but I am not proud of how I have been handling being his caregiver. I am sad, mad and resentful most of the time. I wake up every morning with renewed intentions of getting thru the day without becoming mad, upset or breaking down crying to myself.
We have a 16yr old daughter, who has made me so proud with the way she has been handling seeing her dad become a different person.
As a side note, my father-in-law passed away in 2016 with Alzheimer’s, leaving my mother-in-law with dementia alone. She lived with us for a year and half before we finally got all her finances/insurance in order to mover into a assisted living facility 2 blocks from us.
I do have a wonderful support system. I keep my brother, sister and best friend on speed dial rotation to talk me thru the rough days.
What made me decide to post today, was a question I have. Rick’s annual cognitive exam is coming up in October. Is it necessary to put ourselves thru it? I know he is progressing, I am not quite sure if he realizes it or not. He has days when he tells me he thinks he is getting better. I don’t correct him because I want him to stay positive. But even if the test shows his is progressing, what more can they do? He is on all the medication available. I am just not sure it is worth putting him/us thru it.
Thank you so much for your blog, when I wake up at 2 in the morning with anxiety, I go back thru all your posts and it calms me to know someone out there has already been thru this and is surviving.
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Kristal, To go through this with a teen age daughter in the house has got to be heartbreaking. No wonder you have trouble getting through the day. And to have gone through caregiving Alzheimer’s before so recently seems like almost too much to bear. I am resentful that my care for my mother didn’t end until Ralph was diagnosed and she did not have dementia and did have a lot of hired care that eased my burden a lot. Unfortunately as you know, there is no fix to the situation.
To answer your question, I think having the regular check in/check up is worth it. As my post implies, I think I have a better grasp on his progression than the test, but still I find going in and getting Ralph tested is useful to me in keeping my perspective. But that is one opinion and you should go with your gut. You know the cost to Rick in going through the testing.
Thanks so much for writing and not deleting this time.
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Oh, this is so familiar! While Jim seems to be progressing at breakneck speed, I can so relate to the subtle changes that testing wouldn’t necessarily pick up.
The loss of perspective taking is especially difficult. It’s such an important part of a relationship. And when our spouse no longer has that ability to see life outside of their vantage point, well, it is heartbreaking.
Damn dementia. There’s just nothing good to say about it. So glad you are writing Alice. Our journey is different in the details, but we both are traveling a path that is filled with sorrow and pain.
Hang in there. I so appreciate your honesty and forthcoming in your writing.
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Oh Carole, I have been following your voyage with Jim and saw when it shifted in to high gear. You have been an incredible model of fortitude and caring. Thanks so much for writing.
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