I would like to say that there is no more need for Alzheimer’s and other dementia support groups or for trainings for caregivers or book talks for frazzled loved ones, both those with cognitive decline and for their family members. Sadly, this is not so. In reality the need has grown exponentially. Reasons? An ever-increasing aging population, an growth in dementia cases due to head injuries, heart problems, and poor diets, and the fact that more people are recognizing that the dementia road is a tangle of ups and downs. Just like the tangles of dendrites and synapses, so goes the mental jumble of forgetfulness, loss of functions, confusion, and brain fog.
We have an active Alzheimer’s Support Group in Winnemucca that meets the second Wednesday of the month at HGH. With lunch served in the privacy of the Sonoma room, much is revealed about the daily challenges of caring for a loved one with dementia as well as ways to care for oneself. And that doesn’t even touch on communicating with other family members who may have diverse ideas of best steps forward. Visiting with a group at the Senior Center in Elko I realized that there is a need there as well and with family nearby, I am able to help launch a support group. The responsibilities are enormous as people share their deepest thoughts and fears while at the same time, the rewards are awesome as honest, open discussion helps people navigate this treacherous journey and their feedback and thoughts teach me.
A question that arises includes why other family does not assist or propose some respite for the full-time caregiver. There is no answer, just that it happens. Some cannot handle the regression; others are “too busy”; a third group finds denial safer than acceptance and stepping up. While they may regret this behavior in the future, I find that most remain oblivious to the necessities at the time. To me, it makes sense. After all, what good is regret when it arrives too late?
To emphasize the need for support/discussion groups and creating connections, it was shared that a senior in Elko wandered out on a simple errand. Somehow, she made wrong turns (in a community she knows well) and became lost. Unable to figure out how to find her home, a few more mistakes left her stranded. Alone, she rested, fell asleep, and the frigid elements did the rest. A life ended when with a bit of foresight, she need not have passed away. Some pertinent actions may have changed this story.
I always remind families to let law enforcement know about a loved one with dementia just in case wandering occurs. Some say, “Oh, Mom doesn’t go out of the house” and I imagine she doesn’t, but what if… Trained officers extend transportation home. Next, purchase an identification bracelet. Engraved with phone emergency number on one side and “I have dementia” on the reverse, this may help. Perhaps the loved one will not wear the bracelet (delicate for Mom; sturdier for Dad), but again, what if it works. A note in a purse or wallet with the same information provides a solution, too.
Chat with friends and neighbors. Many want to hide from the truth of Alzheimer’s or dementia, I get it, but the more others know about the situation the greater the connections, the wider the team of protection. The Alzheimer’s Association recommends Medica Alert, a necklace/lanyard that can be tapped when trouble arises. Safe Return is another suggestion. Check these out at www.alz.org or call the helpline: 1-800-272-3900. Read, learn, ask questions, educate yourself and family so that disaster can be averted.
On a brighter note, although cognitive decline travels a slippery slope downhill, good moments are possible. Going out for lunch may present too many confusing possibilities, however, bringing it in not only offers a tasty meal but a chance to visit. What to talk about when a conversation is a mixture of past and present or a repetition of the last chat? Anything. It’s all right. It’s the soothing sound of a voice, eye contact, and intent listening that lets a loved one know that you care. Nodding, agreeing, biting your tongue, and gentle interaction are vital. Does it really matter if the entire episode does not have meaning? Well, yes, in your heart this strange new path is exhausting and distressing. Remember, you are making the best of an agonizing condition.