As an elder care columnist, I get questions by the boatload. The following question intrigued me because it is so hard to answer.
"My grandmother complains that her nurse leaves early and shows up late, but her nurse says it's not true. My mother and her siblings are concerned, on the one hand, that my grandmother is not getting the care that they are paying an arm and a leg for. If this is true, what can they do when the nurse blames the "lies" on the patient's illness? My grandmother is also convinced that someone is coming into her bathroom at night and urinating on the floor. Same deal: false? What if it's actually true and no one is doing anything about it?"
I wish I could give this person a definite answer, but like so many things about caregiving, there isn't one. People with dementia are vulnerable, and we need to take the greatest care to make sure that they aren't being abused. That said, the "reality" of those with dementia is often very different than the reality of the rest of us, including their caregivers.
An elderly friend went through a time where she had a bowel infection, and couldn't control her bowels. A visit to her was part of my daily rounds, I'd sometimes walk in and see that she'd made a huge mess of her carpet and tracked it around. I'd try not to react, but she would look at her carpet and see the mess, then complain about the person who "made that mess all over the floor." Her mind couldn't grasp (and likely wouldn't have wanted to grasp) the fact that she was the person who had made that mess. Therefore, someone else must have been in her apartment.
My dad, his brain demented due to surgery, would go through streaks of talking about an aide who was rough and mean spirited. It was so scary, because it was always a night aide he would talk about. Dad was in a very good nursing home. I visited daily, and the staff knew me. I knew the staff. Who could this aid be? And was his or her abusive behavior real? Do I report that someone on the night staff is being rough and scaring Dad? Should I accuse someone, when I knew Dad had a voice in his head since the surgery that told him all kinds of other things I knew were not true?
And there's this one. My mom wore pretty, decorated sweatshirts and polyester stretch pants in the winter. In the summer, she wore decorated short sleeved shirts and lighter colored pants. She had a winter and summer wardrobe - necessary in North Dakota. Her closet in the nursing home wasn't large, so I would take home the clothes from the season past, and bring in the ones for the new season. It was a ritual. Even kind of fun for the first few years.
However, as her dementia got worse, it wasn't so fun. One day, as I was leaving, one of the housekeepers pulled me aside. She was struggling to keep from laughing. She told me that my mom had told her that I was taking her clothes and wearing them to my new job!
I'm not terribly stylish, but her "uniform" wasn't exactly my style. The woman and I both got a good laugh, but still, it bothered me. Mom and I had discussed, the day before, exactly what I was doing when I took home the winter clothes and put in her summer ones. She was even kind of excited about it. Yet, after I had gone and the day wore on, her mind turned it all inside out.
So, who to believe? I'd say, to be on the safe side, investigate anything that could mean that an elder isn't being properly cared for or is being abused. In the case above, where the grandmother said the helper was leaving early, I'd arrange to stop in from time to time, before she or he was supposed to leave. I'd keep it casual, but stagger the times. It bears looking into. This certainly could be happening - I know of one instance where a caregiver was supposed to be in a woman's home during the night. The (paid) caregiver showed up, alright. She also slept peacefully throughout the night, then left in the morning. On top of that, she smoked in the home. Needless to say, a little sleuthing got that solved and the company fired her.
Now, the urinating on the bathroom floor seems pretty far fetched. I'd listen to Grandma's complaints as a whole. How likely are they, in general, to have a ring of truth? That would give you something to go on. If most complaints are this far out, maybe it's in Grandma's mind. Then, I'd say something like, "Grandma, that is terrible. I'll speak to so-and-so about it," and move the topic to something else. Hopefully, distraction will take care of it.
The bottom line, however, is always safety. When neglect or abuse is even remotely possible, some investigation is necessary. And family or friends dropping by, unannounced and unscheduled, can do wonders to assure good care.
For more on how to be a good caregiver, check out our Caregiver Center.
Published On: September 04, 2007