This is a topic that I am asked about frequently and is apt to be controversial. But it is important, because it is one of the most common problems in the relationship between a caregiver, families, and a sufferer from dementia. What do you say when your loved one asks a question for which the real-world, literal, factual, answer can only cause them more confusion and pain? This happens frequently, and as a frequent occurrence it is an issue you must be prepared to deal with in a way that hopefully will not violate your own sense of honesty and integrity.
As we have mentioned before, sufferers from dementia often seem to dwell in a period from their past. They can be relatively lucid about memories, events, and relationships from days gone by. This is their reality, and in this reality there are relatives and friends who have long-since passed on. They will ask you about them – Where’s Bill?; Why hasn’t my mother called?; What is Jill doing today? – and you should be prepared to respond, knowing that the factual answer can only cause more confusion, anxiety, and pain.
There are few pat answers in dealing with dementia. Every case is difference and every relationship is unique, and we must seek solutions that are as comfortable as possible for the loved one who is suffering from this awful disease. Some of my solutions may not work for you. You must find your own way, but I am going to suggest that whatever you work out, try to adhere to the underlying principle that you should try to do no harm. When you know the truth is going to hurt, I believe you should err toward avoiding pain, not toward telling “the truth.”
While I know not all readers will agree with me, in the case of an issue of no real consequence, I believe there is nothing wrong with a “little white lie.” Let me give you an example. One day a woman at the community I administered was becoming agitated and asked, “Have you seen my car?” She had not driven a car in years, and I simply said, “Oh, yes, I parked it for you. The keys are in my purse. I’ll return them to you later.” She settled down and dropped the subject. End of problem. Or you may say that it is the garage being repaired, brakes, new tires etc. “I will give the garage a call to see how it is coming along.” You will have validated her concerns and she feels relieved that it has been taken care of. At that moment that car was important to her and she wanted to know where it is and that she did not loss it.
The alternative might have been to respond, “Come on Deb! You don’t have a car! You have not driven in years! Just settle down and forget about it!” I promise you, this would not make her settle down. She’s not going to forget about it, and you are not going to convince her she doesn’t own a car. This will certainly take her to higher levels of anxiety, frustration, anger, and she may even decide that there has been a conspiracy to steal or deprive her of her car, and that you are involved. Nothing can come but more confusion, pain, and agitation if you insist on telling her “the truth.”
But as I said, this example is about a matter of little consequence. Handling the problem becomes much more difficult for the caregiver if it involves seeking friends and relatives who are no longer with us. This happens often: “Have you seen my father today? Where is my husband?” I’ve seen caregivers respond in exasperation, “Now mother, stop that, you know dad’s been dead for 15 years!” In my opinion, this kind of response is wrong, cruel, and bordering on elder abuse. Of course, you can make a decision based on what stage your loved one is in and if you feel the “truth” is more important than some of the suggestions we have made in this article.
Seeking a way to do no harm, some caregivers may respond, “I think he may be coming by later.” This is not the truth, but the objective here is not to tell the hurtful truth. The objective is to move the loved one’s mind on to another topic while trying to do no harm. Sometimes it works, and sometimes it doesn’t, but the effort to do no harm is essential and commendable. If they want to talk about this person then say “Tell me about him/her.” You do not have to say he or she has passed away but you are asking them to talk about that person or subject and that can give them some peace to reminisce and then move on, or you will be better able to move towards a new subject.
But what do you do when your own moral standards forbid you from telling even the whitest of little white lies? I know a woman – a nurse – with a lot of experience and wisdom in this field who in such cases will respond, “I have not seen him today. I’ll let you know if I do.” This is the literal truth, but it also can be effective in calming the loved one and moving her (his) thoughts on to another topic.
In caring for a loved one with dementia, this is a dilemma that will come up again and again, often several times a day. Just remember that the truth, as it exists in your reality, is likely to do more harm than good, and your objective should always be to find answers that do no harm. You are a compassionate and wise person indeed if you can devise answers that satisfy both realities – yours and theirs. When this happens, you have become an accomplished caregiver and a true gift to your loved one.
This is a disease where sharing is the best therapy for caregivers.
Until next time remember: “We all deserve the best”
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© Debbie Selsavage, 2015