As I continue to prepare for PASSING TIME, my art exhibition in October 2016, I spend much time observing and thinking about the experience of Alzheimer's disease, for those in inflicted directly - and the collateral damage to those of us forced to watch one they love disappear...
NOT to say
to people who have
WHAT DID YOU HAVE FOR LUNCH / DID YOU HAVE A NICE LUNCH?
While seemingly benign, such a question betrays a lack of sensitivity about the phenomenology of Alzheimer’s for those who have it, especially as the disease progresses. While ‘lunch’ seems like a harmless topic, such questions point out memory failure in a most acute way. Unless you are willing to take the topic further, as in, for example, “Did you like the egg salad sandwiches we had for lunch together?” don’t’ bring it up. While the former serves only to make the patient feel badly about herself, the second shows a willingness to engage her in the present.
NO /THAT’S NOT RIGHT/ YOU’RE MISTAKEN/ DON’T YOU REMEMBER?
Alzheimer’s patients create memories out of failing synapses. While they may sound convinced about the truth of what they are saying, they, as the disease progresses, become increasingly unable to retain reliable memories. Sometimes they weave together pieces from different stories (true and/or untrue) and often simply make up thoughts to fill in the blanks. Trying to convince an Alzheimer’s patient that he or she is misremembering or factually incorrect is not helpful. Let it go and take a walk down imaginary memory-lane with them.
THAT’S NOT A VERY NICE THING TO SAY
(In response to, say, a comment like, "Your child's feet are cold" - during a very hot summer afternoon, for example - "put some socks on him. You're a bad parent!")
Oh, if only I had made up that example... but such harsh judgmental statements issuing from the lips of Alzheimer’s patients are not uncommon. Try to catch yourself, even as you feel your temperature rising. It is not the actual person you knew who speaks in these instances, but the callous disease that has taken over control of their brain, filters, and lips. Rebuking and/or correcting someone who speaks without regard for other people’s feelings is often warranted and encouraged – but this is not one of those times. It will do no good. The lesson will not be learned and anger will not be reduced, only fueled. Best advice? Change the topic of conversation.
WE’RE GOING TO GET YOUR HAIR CUT TOMORROW/ THIS AFTERNOON/ IN FIVE MINUTES.
A statement about the future, regardless of how far in advance (or not) will not prepare the Alzheimer’s patient for an event. Especially if the event is something he or she does not particularly like. Protests may range from a mild ‘I’m not feeling well,’ or ‘I don’t want to go,’ to a full-blown ‘I’m not going,’ or ‘I’ll never forgive you for treating me like this.’ Instead, mention nothing ahead of time. When the actual time for the event is at hand, alert him or her to the fact that it is now taking place. By using this strategy, there will probably still be resistance, arguments, maybe even tears, but it will be for less time, saving you – and the Alzheimer’s patient – the anguish of negative expectation.
WE WERE JUST DISCUSSING THE SESSION YOU HAD WITH YOUR DOCTOR. NO NEED TO WORRY.
Paranoia is one of the hallmarks, or as I like to say, ‘hellmarks,’ of Alzheimer’s disease. You will not convince the patient that you are not plotting about them behind their back – probably even if you include them in the discussion; their trust threshold is low – very low. For the most part, Alzheimer’s patients do not know where they are in time or space. Their world is small and without the ability to think back or ahead there is much to be feared in the unknown. If you must speak about the patient with others do it well out of their sight and earshot. If they do overhear their name and accost you about motives, move quickly to the most plausible white lie, such as, “We were just saying how nice your new haircut looks on you!” And sell it.