One of the definitions of the word expectation is: a standard of conduct or performance expected by or of somebody. We all have expectations of other individuals based upon the demeanor and behavior that they have shown to us in the past. Yet, in day to day caregiving a person with Alzheimer’s or another dementia, having expectations of that person can be either a blessing or a curse, and frequently both blessing and curse. Allow me to explain:
Early in the disease, many times before we have fully realized that there is a disease process present in our loved one, and many times after we have discovered or have been told by a doctor that a disease process is present, we have expectations of our loved ones that many times they cannot fulfill. We base our expectations on abilities and capabilities that they had in the past, and now may have only sporadically at best in the present. Some of us continuously challenge them to do things that they can no longer do on a routine basis. It happens much of the time with short term memory issues. We say to them “Remember?” as in “I saw you yesterday. Remember?” When they don’t remember, that means that you have pointed out to them that they are deficient, or “less than”. They are embarrassed and ashamed. Please don’t hurt their feelings; just stop using the word “Remember”. (A curse) Please stop EXPECTING them to remember, but if they do remember, then be pleased and happy they did. (A blessing)
Some of us try to coach them into being able to do things that they could do in the past again. We try and retrain them, and then test them on the retraining, much as we would do with a child that is in learning mode. The fact that their brain is damaged and sometimes can no longer take in or store the teaching that we are currently doing, doesn’t register in our brains. They are actually in the unlearning mode, unfortunately. We insult them by EXPECTING our teaching to “take” and becoming exasperated when it doesn’t. Their hippocampus is no longer consistently registering and filing the information to be retrieved later that you have just given them. We should not routinely test them immediately after coaching, as we are prone to do by habit, (a curse) but instead, we should compliment them when they initiate an attempt at what we’ve taught them and are successful. There is no implied rebuke if we only reward success and ignore failure. (A blessing)
And yet, we don’t want to go completely the other way either. Expecting that they can’t do anything promotes faster loss of their current abilities and ensures their increasing dependence on you. It zaps their self esteem and can lead to depression. What to do? How about first trying the best that you can to ensure their safety? If you could scout the environment for things that could go wrong in the hands of someone who doesn’t have full capacity to anticipate the consequences of their actions (making something on the stove and forgetting to turn the stove off), or remembering to do the next step in a task that has more than one step in it (closing the front door, but forgetting to lock it). Dementia proof the house the best you can, to try to ensure as much safety as possible. Yes, things can and will happen that you never expect to, but if you make a real effort to look at the house as if you had an unruly toddler who was unusually tall, you may be able to come up with more ways to keep your loved one safe. Then with you physically there, and having “eyes on” your loved one, you can allow them to try things. They may be “more there” than you expected, and how wonderful would that be for everyone involved. Your loved ones success is immediate cause for celebration, so please praise and celebrate them!
Oh you say, “So much easier said than done.” Yes, yes, I know. Their abilities change from day to day and even hour to hour or minute to minute. Ultimately, then we really don’t know what to expect from them. And that is one of my points here. If you don’t EXPECT things from them, then you can’t be disappointed, angry, hurt, etc… when they don’t live up to your expectations! They are truly doing the best they can, given the disease they have. However, if you don’t EXPECT things from them and they do more, then all are pleased. There is no downside to losing your expectations. Recall that we’re the ones who have the ability to change our thought processes, and so can drop our expectations in order to benefit our loved one’s self image.
Allow or promote as much independence as possible for your loved one within an environment that you have previously changed into a safe, controlled environment. That will give them the opportunity to “shine”. Please don’t attempt to control your loved one, instead try to control the environment in which they operate (as much as is possible). Now THAT’S a win-win situation.
Carole Larkin MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementias care. She has a Master’s of Applied Gerontology from the University of North Texas, is a Certified Alzheimer’s Educator, is a Dementia Care Practitioner, is a Qualified Dementia Care Specialist, and an Excellence in Care Specialist at the Alzheimer’s Foundation of America, as well as a Certified Trainer/Facilitator of the groundbreaking dementia care training tool, the Virtual Dementia Tour Experience. She is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She consults with families telephonically nationwide on problems related to the Dementias. Her company, ThirdAge Services LLC, is located in Dallas, TX, and her website is www.thirdageservices.com.