Over the past several years I have written a number of articles about how clouds of loneliness drift in and descend upon caregivers of individuals with Alzheimer’s Disease. The social world these dedicated folks once knew somehow vaporizes.
However, while recently hosting a live video conference with two of my favorite dementia advocates in attendance, author Norm McNamara from England and Harry Urban, founder of “Forget Me Not,” it was brought to my attention that this loneliness is likewise a common symptom for those who are themselves suffering with dementia.
To the general public this concept can be baffling. How can two people, a caregiver and a patient who are together almost constantly, feel any type of reclusiveness? Please allow me to explain.
For caregivers, the stress of caring for those with any kind of dementia is enormous. They constantly must stay on their toes, making certain not to say the wrong words, which in turn can increase their loved one’s confusion a hundred fold. The strain of this would make anyone want to cry out for some kind of normalcy. In addition, there’s constant pressure to make certain that they’re doing what is best for those who are ill. Most of the time, caregivers feel as if they’re venturing into uncharted territories. This produces a longing for outside companionship, fresh conversation and a break from responsibilities. (I recall that when I first started taking care of my dad, I felt as if I had entered a place of unreality; a “Twilight Zone” if you will.)
As for the dementia sufferers themselves, well, I was given a whole new perspective when listening to these two gentlemen, who I consider to be experts. Each has been diagnosed with a different form of dementia than the other, McNamara with Lewy Body and Urban with early-onset Alzheimer’s disease. Nevertheless, they both mentioned this cloak of isolation, even describing certain similarities.
Suffering from severe night terrors, a common symptom of Lewy bodies dementia, McNamara spoke of frequent nightmares haunting him. The common theme is being unable to communicate with anyone. He finds that either his cell phone is dead or no one can hear him when he cries out for help. Throughout these frightening scenarios he is being attacked and, try as he might, he cannot reach out to anyone, resulting in having to fight these battles alone.
Urban however, who has early-onset Alzheimer’s, remarked that at times, even when his wife is sitting right next to him, can experience a paralyzing feeling of seclusion sweeping over him. For instance, if they are out and about and she finds she has to use a restroom, she may tell him to, “sit and stay here on this bench, I’ll be back in a minute.” Within seconds he may be drenched in fear, believing he’s been abandoned. As far as his nightmares go, he finds that he is forever getting lost in them.
These experiences may be part of what is called “shadowing.” Shadowing is the act of dementia patients attempting to keep their caregivers in sight at all times, for along with the feelings of loneliness comes fear. It does not surprise me that shadowing would happen in their sleep.
As primary caregivers, we become our patients’ world, their security blanket, a lifeline. Even if we’re sitting right next to them we should make the extra effort to reach out and hold their hand. Even placing our hand on their shoulder, reassuring them that we are there, can make a world of difference.
Gary Joseph LeBlanc was the primary caregiver of his father for a decade after he was diagnosed with Alzheimer’s Disease. He can be reached at firstname.lastname@example.org. His newly-released book “Managing Alzheimer’s and Dementia Behaviors,” “While I Still Can” and the expanded edition of “Staying Afloat in a Sea of Forgetfullness,” can be found at www.common sensecaregiving.com.