Dear Candid Caregiver: Six months ago, at age 56, my husband was diagnosed with early-onset Alzheimer’s disease. While we aren’t in denial about all of the tough times ahead, my husband has a well-informed doctor who is trying to steer us away from all of the negative dialogue that exists about the “horror” of Alzheimer’s. He’s even started us with some helpful online groups that are focusing on living well with dementia. As you can imagine, though, even with that type of support, staying in the right frame of mind takes resolution and constant work. This would be easier if the people who care for us could learn to use more positive language. Unfortunately, though, they just don’t get that their language has a huge impact on how we are viewed by others and, if we’re not careful, it can affect how we see ourselves.
The plain fact is that my husband is not a dementia patient. He is a person living with dementia. When I remind them of this, they act as though it's an unimportant distinction, but to us, it’s the difference between living life well and being sick all the time. People rarely refer to a friend who lives with multiple sclerosis as an “MS patient.” They will say that she has MS. They don’t say that their neighbor is a "diabetes patient," they say he has diabetes. Why is dementia different?
Another phrase they’ll often use when discussing us is that my husband is “suffering from dementia.” Saying that he is suffering from dementia is defeatist. He has many years left to live his life and we will try with everything that we have to keep the suffering to a minimum. Again, would they say that their neighbor is “suffering from diabetes?”
I know that these people love us and mean well, but right now they are frustrating us. We want them to understand that my husband is the same man today that he was before he had a diagnosis, and that by medicalizing his life with words like this, they are hurting our resolve to live positively. Why is it so hard to convince them? – Praying for Positive
Dear Praying for Positive: Any health condition of this magnitude presents enormous challenges to the individuals diagnosed, as well as to their friends and family. People want to support you but don’t know how to do it effectively, in some degree because they don’t understand how it can be possible to live well with dementia, and they won’t until you teach them. That’s just the reality of where society is in understanding dementia.
In your family and friend’s defense, if they have in their past known anyone who has developed dementia, they may only have witnessed the later stages of the disease, where the person affected may not seem at all like the person they knew. Additionally, the information that they are being fed by the media is what’s often called the tragedy narrative, maintaining that developing dementia is ruinous to the person and his or her family; that suffering is the only word that can be used to describe it; and that the person has, overnight, become a patient, with every aspect of his or her life controlled by this disease.
In reality, they are not entirely wrong. Alzheimer’s can financially devastate families, and the diagnosis of the disease can, as you know, upend lives. Additionally, for some, there can be suffering, at least intermittently, until caregivers can determine how best to help their care partners. Most people haven’t spent a great deal of time trying to understand the intricacies of Alzheimer’s or other types of dementia, and these same people have been exposed to this narrative. For that reason, I suggest that you not be too hard on these good members of your circle who want so badly to support you. Like most of us, they are doing their best with what they have.
My advice, Praying for Positive, is to think of educating others as part of your mission by remembering that these are good people who aren’t trying to hurt you, they simply need to learn. Whether you gather them around for an informational session on how to best support your husband and you, or you talk with them individually, help them to understand that there is still joy in life even after an Alzheimer’s diagnosis at age 56. This will, in turn, help them stand by you as their presence becomes even more important to your future ability to maintain your resolve.