Comic book writer and designer Will Eisner created the character “The Spirit,” who is known for saying, “Time is the most precious thing in the world.” If you should become a caregiver for someone with a terminal disease, you will truly understand the importance of these words.
A high percentage of the general public still don’t realize that Alzheimer’s and other dementia-related diseases are fatal! There are no Alzheimer’s survivors, Lewy body dementia survivors, frontotemporal degeneration survivors; at least not yet.
Sadly, I frequently receive a barrage of e-mails, Twitters, phone calls and comments from frustrated caregivers, relating that their family members refuse to visit these priceless and fading loved ones. The main reason? They say they can’t stand seeing these people in the deteriorating condition where they now find them. Very possibly, the caregivers are trying to preserve the memory of how these folks “used to be.” While understandable at some level, what caregivers fail to grasp is this: every day that they refrain from visiting, the clock continues to tick-tick-tick toward the midnight hour—the clock-strike when these loved ones are removed from this mortal coil. The time wasted by uneasiness and embarrassment is time that can never be recovered.
Here are a few steps that may turn your visits around so that they are smoother and more enjoyable for all parties involved. Most of these are concerning the latter stages of the disease.
During your incredibly valuable visits, remember this: questions are the root of all evil for dementia patients. The worst thing you can do is to start off the conversation with “Hi, do you remember me?” I don’t care if you’ve known a person for 50 years; always start off your visit by casually introducing yourself. By hitting these folks with questions right off the bat, you most definitely will raise their anxiety level, increase their confusion, and frankly, “waste” a lot of time. Allow them to visually connect with you before you even start a conversation.
Plan ahead; bring a photo album with you containing pictures of your past together where they can possibly spend time relating. This is a perfect way to build a conversation that both of you may enjoy. Or, if they start telling stories that are completely off-base, just go with the flow. Do not correct them. Instead, enter their world.
Even after all the hardships I endured while caring for my dad, there’s hardly a day that goes by that I don’t wish that I could have had more time with him. So yes, time is the most precious thing we have. Don’t waste it.
While they’re still in your life, take full advantage of every minute that you have with your patients or loved ones. Today it may be difficult but it’s better than living with total regret tomorrow.