No matter how hard you try, you may not always get it right. Two years ago my mother who has dementia with Lewy Bodies (LBD) was at a relatively steady point. I forgot about how the disease tends to “ebb and flow.” So I readily agreed when her doctor suggested changing the medication that helped prevent hallucinations. At the time I was her Power of Attorney (POA) and her Healthcare Power of Attorney. I managed her money and usually just provided input on her healthcare. The hope was that if she was unable to make decisions, I would be in place to do so.
Results May Vary
In order to change her medication, my mother had to come off the current medication for at least a week or 10 days. But once she was off the medication, my mother declared she was “cured.” She refused to take any substitutes. This resulted in increasing paranoia and inappropriate, almost aggressive behavior. As HCPOA I did not have the power to correct this, and she became increasing agitated even with the staff at the assisted living facility. She even became convinced I was stealing her money.
To calm her fears, I (along with other family and professionals) tried many things. We brought out copies of her “papers.” She was showed bank statements and financial records. Everyone assured her that all was in order. I’d like to tell you that all was well in the end, that she began taking medication that helped control the paranoia, that she started trusting me again. But there was much more to come.
It May Be A Bumpy Ride
Someone with LBD will not get better. Their decision-making and ability to understand complex problems will only decrease over time, even if their memory remains mostly intact. And without the correct medication for them, they are more likely to be paranoid and have hallucinations. It is important that that family take legal action early and find the right person to be guardian. While the process varies from state to state and county to county, it is not easy. In some jurisdictions family is rarely appointed.
Often the person with dementia strikes out at those closest, accusing them of acts they have not committed (Of course, this must be verified because unfortunately it does happen). But for the innocent caregiver, this is frustrating, embarrassing, and time-consuming. And yes, it’s like a “slap in the face.” The person with dementia may even seek legal counsel. They may call social services. They may also call the police. Each time the response must be immediate, careful, and blameless. Careful documentation and thoughtful observation are the key here, as well as much patience with the process.
Once You Gain Altitude…
Art is very similar. Every encounter, every challenge connects you more closely. You may work diligently on a piece, sometimes painting over portions, other times sanding the entire board down and starting again. But every once in a while, even as tenacious as I am, I have admit my efforts will not work—at least not in this way on this particular piece. It especially hard to start on the same painting again when you feel you have just failed. Some times I wait and give myself space to figure how I might compose the piece differently—what I liked about the piece, what needed to be changed.
In the case of my mother, I ran to my studio and shut the door. I applied quinacridone gold (my favorite) to a canvas and hired an attorney. I tore pieces of old drawings and outdated books and hired a geriatric care manager. I applied layer after layer to numerous pieces of art and went to court along with my mother, her aide, and her guardian ad litem. Luckily, after almost three months and a postponement, all agreed on the need for a guardian.
Sometime even when creating art, or maybe especially when creating art, we have to do things we aren’t comfortable doing—because deep down we know we must. It may mean many wrong pathways, but in the end, there is nothing else we could do.