Dementia drives enormous changes and enormous amounts of changes in the lives of individuals, families, and communities. These changes can be viewed through a variety of lenses. I tend to focus on trying to create more positive spaces and understanding of how dementia is a living disease and not a sentence for death row, but there are certain things that are just hard, complicated, and frankly can’t be positively spun without becoming toxic positivity. With all forms of dementia, behavioral and personality changes definitely may not be for the better. Our LOWDs can try to hurt us mentally, physically, emotionally, and often succeed. This is bad enough, but what’s worse is when we talk about it and someone says: “it’s not them, it’s the disease”.
No. Kidding.
If you’re one of the people who says this: stop. You’re gaslighting the caregiver.
The Reality of the Situation:
Here’s the thing: it doesn’t matter whether or not it’s who they were or who they’ve become because of the disease. Regardless of their ability to understand the larger picture of what they’re doing or the fact that dementia is the driver behind it, abuse is still abuse even when it’s done by LOWDs. It doesn’t make it any less real or less traumatic to the caregiver. It is dismissive and detrimental to people who are already going through a hard time to say “it’s not them, it’s the disease” because saying that attempts to downplay the seriousness of the hurt that this has caused the caregiver. It excuses the behavior and makes us culpable for it.
Anyone will tell you that caregiving is hard, but what makes it even harder is how families and communities react to a caregiver being honest and vulnerable about what they’re experiencing. It’s likely that when you said that to them, you were trying to be comforting, or trying to provide perspective. Caregivers receive this pseudo-esoteric wisdom with agitation and a complicated anger that we aren’t likely to show you because we know you’re trying to mean well and we’re also afraid of losing yet another person in our lives. As caregivers, we know better than anyone else that the disease is the driver. What we’re trying to do is express our complicated trauma, ambiguous loss, and grief to you. In a world where we’re implicitly urged to isolate, or sequester ourselves because aging, dying, and dementia make other people uncomfortable, we feel defeated when we come to the community as a way of becoming visible, heard, and supported, and we are met with platitudes instead of support.
Instead of offering up this banality- which goes over like serving up off-brand Ritz Crackers at a reception dinner- I urge you to treat this as you would any experience in which someone comes to you and says that someone has hurt them. Confirm if they’re okay. Ask them if they need to get away. Figure out how much danger there really is- it may be time to start looking at alternative living situations or maybe it could be something as simple as creating a new way of achieving competency. Be the person that you would like to encounter if you had just been hit or called horrible names. Leaving or changing things radically may not be an option at that time, so offer them an escape route or a safety valve to activate any time things get too bad until such time that the LOWD can be given a different place to live and receive care. Hold the space necessary for them to process and figure out what they want to do. Affirm that in fact, they’re doing amazing in spite of it- because they are. Validate, don’t castigate.
Most of all, hold that space for them. Don’t make them feel like they should disappear. Being present, being part of a community, and being visible creates for caregivers and their LOWDs alike a place to do the work of being a person. Don’t rob them of that simply because you don’t really know what to say but feel like saying something is better than saying nothing. Community is hard work, and the right words aren’t always the easiest to find, but I can guarantee you that “it’s not them, it’s the disease” are exactly the words you shouldn’t use if you’re trying to show up for someone.
The Dementia Diva 