1. Should the Person Stop Driving?
Late one evening I was deeply immersed in editing the photographs I'd taken at the Cincinnati Zoo that day when I was startled by the phone ringing. I thought it was probably Ed, my Romanian life partner and soul mate.
But it wasn't.
It was a sweet female voice I didn't recognize calling to tell me she'd found Ed driving on the wrong side of the road. He'd pulled over and so she'd stopped too, and seeing how confused he was, she offered him a ride home.
Suddenly I realized the cold hard truth. He could no longer drive safely. My heart sank and I told him very quietly that he had to stop driving.
Sooner or later driving becomes a problem for all people with Alzheimer's. There are usually many warning signs that it is no longer safe for them to be driving. The Alzheimer's Association lists five primary ones:
1. Forgetting how to locate familiar places
2. Failing to observe traffic signs
3. Making slow or poor decisions in traffic
4. Driving at an inappropriate speed
5. Becoming angry or confused while driving
I would add two obvious items to this list: Causing an accident or running into another car while parking.
When loved ones exhibit one or more of these it's time to get them to stop driving. This will be one of the most difficult actions you will ever have to do. We all cherish the independence of being able to drive anywhere we want - any time we want - and people with Alzheimer's are no exception.
It's highly likely that you will face all manner of resistance, but you are ultimately responsible for getting the person to stop driving - one way or another.
2. Should the Person Be Placed in a Long-Term Care Facility?
Placing a loved one with Alzheimer's in a long-term care facility is highly controversial. The vast majority of families don't want to do it, and many refuse to even think about it. Some feel it's the most cruel, shameful thing they could possibly do to their loved one.
Standing back and looking at the situation more objectively, however, it becomes clear that in some cases, nursing home placement might just be the most loving course of action, especially if you have to work full-time or if the person is in the later stages of the disease. In some cases, trying to care for a person with late-stage Alzheimer's at home, even if you hire in-home help, may deprive them of the amount, quality and level of care and safety they need.
Alzheimer's patients in the later stages require around the clock care and monitoring, which is exhausting to the caregiver. You can't be there for your loved one and provide high quality of care if you are physically worn out and emotionally spent all the time. It's also possible you'll spend so much time caregiving and worrying that you won't be able to enjoy spending time with the person.
It takes a village to care for people in the latest stage of Alzheimer's. They need primary care doctors, specialists, nurses, aides, laundresses, cooks, dishwashers, housekeepers and maintenance men. They need an activity director, a dietician, and a social worker. And they need all of these people to be available on site in shifts or on call 24 hours a day, seven days a week.
So when you reach the point where you're physically exhausted and emotionally drained the majority of the time, stop and at least give some serious consideration to placing your late-stage Alzheimer's loved one in a high-quality long-term care facility if there is one in your area.
3. Is It Okay to Stop Visiting When the Person Doesn't Recognize You Anymore?
Some people think that there's no reason to visit a loved one in a nursing home who no longer recognizes them, but others are firmly convinced that you should visit anyway. First of all people with Alzheimer's may enjoy being visited even if they don't quite know who is visiting them. In addition, it's possible that the person does recognize you but simply isn't able to communicate that.
We never know whom Alzheimer's patients do and do not recognize somewhere deep down. Although there's no way to know for sure, many people believe the person is really "in there" somewhere and that we should always assume the person may know and feel more than he or she can express.
Marie Marley is the author of the award-winning "Come Back Early Today: A Memoir of Love, Alzheimer's and Joy," and co-author (with Daniel C. Potts, MD, FAAN) of "Finding Joy in Alzheimer's: New Hope for Caregivers." Her website, ComeBackEarlyToday.com", contains a wealth of information for Alzheimer's Caregivers. A longer article on this topic appeared on the Alzheimer's Reading Room.