In preparation for Ralph taking part in testing of the new Merck anti-plague drug, our nurse at the Emory Brain Center asked me to make a list for the nurse to show Ralph’s current baseline. Of course, I put it off (just as I often put off writing here because it means facing stuff I may not feel like facing). But now the list is done and it seems worth sharing.
WHAT RALPH CONTINUES TO DO:
Make small repairs around the house when asked; Pick vegetables and do light farmwork when asked; Take his meds on his own from his filled weekly pillbox; Make his own cold breakfast and lunch; Make coffee as needed; Use the microwave; Buy beer at the convenience store; Feed the dogs daily; Drive around the farm in his truck to “walk” the dogs; Dress, bathe, shave etc on his own; Talk on the phone at length to his sister and oldest son; Attend his art class; Walk occasionally on a farm path circuit; Watch nightly news and Jeopardy over dinner; Listen to NPR on the radio; Read quality full length books of fiction and non-fiction; Use his credit card (as long as no tips are involved); Pay cash for small purchases; Cut his own hair ; Turn on the gas grill and change the gas canister when needed; Interact socially with people who visit or whom we visit; Fish from a dock; Clean fish he catches; Share stories from his childhood; Offer witty one-liners out of the blue; Analyze a situation/problem presented to him and show insight even though he forgets his analysis (and the problem) shortly afterwards
WHAT RALPH CAN’T DO ANYMORE:
Pay attention to business or financial matters—important since his professional life was all about real estate investing and managing; Use the stove; Use the grill although he does turn it on when I ask; Drive on his own except those places noted above or under duress and if I am there to give him directions; Use his boat; Hunt ; Go to movies—says he finds them “boring”; Watch narrative television dramas or comedies except on rare occasions; Listen to music on his own; Keep up with or show interest in family and friend activities; Remember details of relationship history with friends
WHAT RALPH MAY OR MAY NOT DO:
He may still be able to play guitar, but shows no interest; He says he can drive tractor (and was told it would be ok by Stephanie) but avoids doing so.; While he goes to art class, his output has greatly diminished; he spends most of his “painting” time sitting in his office smoking and listening to talk radio; He claims to take walks but I have not witnessed him walking
RALPH’S TEMPERAMENT CHANGES:
Extremely passive—used to be extremely assertive; Never gets angry—used to be hot tempered; Without curiosity—used to be extremely curious and factually knowledgeable ; Emotionally totally focused on his dogs; Less outgoing but more jolly most of the time.
I kind of love having this information down in black and white and red and blue and green. In a year or two or five, I will look back at what I recorded–whether with relief that the Merck pill has worked to keep Ralph at his current activity level or in bittersweet nostalgia for this time when the Can Dos on Ralph’s list are several lines longer than the Can’t Dos and Maybes list combined. May it stay this way for as long as possible.
11 thoughts on “Taking Stock For Future Reference”
Your list suggests to me making one could have great application for many not even having a diagnosis of MCI or AD.
So true. I should run down for myself. I am aware of certain decreases in my day-to-day skills.
Your list really is a glass more than half full. I hope the new drug therapy helps to keep it that way.
Thanks Mary. I agree, we are actually very lucky as the list reminded me.
Hi Alice – You’ve remarked a couple of times about how important Ralph’s dogs are to him. I certainly get that one. We have 2 dogs as well. My wife is patient and wonderfully supportive and I still share everything with her, but MCI/AD is the elephant in the room who looms larger as I continue down the path heading somewhere (especially recently, as we wait to hear whether our insurer will approve a PET/CT scan my neurologist wants to do as part of her decision on whether to change my diagnosis to early onset AD). The dogs are blissfully ignorant of all of this. They greet me with the same leaping enthusiasm whether I’m losing things around the house, asking the same question again, or struggling to think of the right word. I’ll remain their Alpha and the head of the pack as long as I rub their bellies, and don’t lose their leashes, misplace their treats and chews, or forget to feed them. As everything else changes, the dogs and I remain the same. They are a great comfort.
Glad to hear from you. I hope you can have the PET/CT scan–if so be sure to wear a sweater because they keep the rooms really cold. The dogs loom larger and larger in our lives for exactly the reasons you give. They’re reactions don’t change and they offer great comfort, to me (who was never a dog lover) as well as to Ralph.
I’ll remember the sweater – thanks!
I, too, had to make that list. Mine is very similar to yours. It was hard to do. Making my list gave me some understanding of the confusion and frustration I feel. It comes from his seeming and/or real competence alongside such diminished capacity. It is a dialectical dilemma being able to hold both aspects of this man.
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I agree that it was hard to do yet gave me a chance to pause and gain perspective that gets lost in the day to day. You phrase “dialectical dilemma” is perfect….Thanks
Such food for thought, Alice. It takes courage to assemble a list like this, and put it out there. Thanks for sharing it. If you’re of a mind to see how the “glass is half full”, this kind of list helps. Of course, some days, that’s just not where we’re at…!
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Thanks. The truth is that I’ve been in a half empty mood late and posting the list reminded me that my glass is still half full–