I've written a chapter about this for my new book, and this seems like a good time to preview it! I've also posted the link to the article below. Enjoy.
- In the beginning, I tried to be as honest as possible, at least as honest as he would let me, about what was happening to Dad. Be honest, tell them as much as you know, or as much as you think they can hear. Whether or not they choose to accept it, your loved one is entitled to the truth about their condition and possible future, presented as honestly as possible. I try to always be bluntly truthful when I talk to family members and caregivers about the diseases, their manifestations and progressions, and what is to be expected. At this point, there is nothing to be gained by lying about what is going to happen; it could, in fact, be harmful by raising expectations or fostering bad decisions. I am a big proponent of honesty when appropriate, especially when the sufferer is more lucid and able to comprehend and make choices. I would recommend including the patient in discussions about their healthcare and well-being. I recognize that there will still be problems, sufferers will still be in denial, progress may seem slow. Be realistic, recognize that Rome wasn’t built in a day and keep working on yourself.
- There are tricks of distraction that come in handy. If you are facing a difficult conversation, or the prospect of convincing your loved one to do something they might not want to do, avoid anxiety and distress by pretending the conversation has already taken place and they agreed to what you suggested. Make sure to thank them and give positive reinforcement. Honesty vs. helpful lies. Say what you mean and do what you say you’re going to do. Make sure your words, voice, and body language all say the same thing. “Meaning is in people, not in the words by themselves.”
- There are times when not imposing the truth on someone is the most compassionate thing you can do for them. If it still makes you uncomfortable, try to think about it as lying to the dementia, not to your loved one.
- Strategies include: finding out what they might fear in terms of the police, social service authorities, or loss of access to you. Most people in this situation are afraid of being left by their loved ones, and unfortunately, you can use that, again, for their well-being. Please understand that I’m not advocating neglect or abuse used as threats in any way. I’m just not above using any information you have about what will motivate your loved one to act. Your life and your time, as always, are just as valuable. I think, as caregivers, we should be using any and every tool available to us in order to fulfill our roles.
- Dementia is like the weather, if you wait long enough, another belief system comes along that wipes out the prior painful or uncomfortable one.
- Ask yourself what is behind your resistance to lying. If you are feeling disrespectful or as if you are betraying your loved one by lying, then it’s possible you haven’t yet accepted the realities of the disease. Are you truly facing the fact that your loved one is now changed, that their role has changed, or are you still motivated by who they used to be to you? You must manage your own old expectations, grief, and disappointment since your loved one’s capacity to assist you has lessened or disappeared. The person you love is still there, but their needs have changed. Look beyond the feelings of disrespect or betrayal and ask yourself what is in your loved one’s best interest, not your own. Perform in a way that is best for them, which may include lying about that which would make them unhappy or uncomfortable.
- It may seem as if not revealing or lying about your loved one’s illness to family and friends is a way to protect your loved one’s dignity or remaining sense of self. Consider, however, that doing this prevents friends and family from offering needed help, and/or saying good-bye to someone they care about. In this case, you must balance the needs of your loved one and those of his/her friends and family."