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The 5 Most Controversial Decisions Alzheimer's Caregivers Will Ever Face

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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:

  • Forgetting how to locate familiar places
  • Failing to observe traffic signs
  • Making slow or poor decisions in traffic
  • Driving at an inappropriate speed
  • 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 take. 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, even if they have access to a high-quality facility nearby.

Standing back and looking at the situation more objectively, however, it becomes clear that sometimes, nursing home placement is the most loving course of action, especially if you work full-time. In some cases, trying to care for a person with Alzheimer's or another dementia at home actually deprives them of the amount, quality and level of care and safety they really need.

Alzheimer's patients 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.

Nursing home placement should be of special consideration for patients in the late stages of the disease. These patients desperately need so much more care than a single person or family unit -- even with some paid help -- can provide.

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.

Plus, they need trained professionals on duty at night who can check on them while they're sleeping. Further, those who have a tendency to wander need to be in a secure environment from which they can't walk away and become lost.

So, when you reach the point where you're physically exhausted and emotionally drained the majority of the time, stop and give some serious consideration to placing your loved one in a high-quality long-term care facility. It isn't a cop-out. It might be by far the most loving course of action, and the best course of action, for the health and well-being of your loved one.

3. Is It OK 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. More importantly, it's possible that the person does recognize you but simply isn't able to say so.

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.

4. Is It OK to Divorce Your Spouse in the Later Stages of the Disease?

In September of 2011, Pat Robertson created a firestorm when he said that it was OK to divorce a spouse with Alzheimer's disease. An article in the Huffington Post quoted Robertson as saying, "I know it sounds cruel, but if he [the husband] is going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her."

Hundreds of news outlets ran stories on Robertson's proclamation. On the Huffington Post alone 2,245 people posted comments -- the vast majority of which were negative. One reader wrote simply, "Pat Robertson [is] more of a representative of evil rather than good."

The Alzheimer's Reading Room, one of the major sources of news for Alzheimer's caregivers, published several articles about this story, also with a preponderance being negative. The responses were best summed up by a reader who stated, "I would like to know what bible Rev Pat Robertson is reading from. Our God says in sickness and in health. Also, for better or for worse."

This is indeed a very personal decision to make and one should be bound by his or her personal ethics.

5. Is It Time to Engage Hospice Care Services?

Hospice care can be highly valuable to the well-being of patients at the end of life for people with terminal conditions (and their families), including those Alzheimer's disease.
Gregg Warshaw, MD, Director of Geriatric Medicine at the University of Cincinnati and Past President of the American Geriatric Society, recently told me:

Consider hospice if the person is in an advanced stage of the illness. In advanced Alzheimer's disease the patient is unable to walk to dress or bathe without help; has trouble controlling urine and/or bowel functions, and only rarely speaks meaningful sentences.

When I asked Dr. Warshaw for specific signs that indicate hospice care may be needed he listed the following:

  • Two or more episodes of pneumonia or other serious infections during the previous six months
  • Difficulty eating and swallowing, even with feeding help, that results in weight loss (10% weight loss over previous six months)
  • One or more skin pressure ulcers that are not healing.

As Ed's illness progressed, a friend of mine suggested I consider hospice care for him. I was struck. Just the very word scared me. Even though Ed's physician stated that he would qualify for it (meaning he probably had less than six months to live), I kept putting it off. I kept telling myself that he wasn't quite ready for it. The fact of the matter was that I wasn't quite ready for it.

I knew it was silly but somehow, I felt that signing the papers would be tantamount to signing his death warrant. Deep down, I thought he would live longer if I didn't call in hospice. I was in deep denial about his medical condition.

Then one day, I spoke to Douglas Smucker, MD, then an Associate Professor of Family Medicine at the University of Cincinnati, who is specialized in end-of-life care. He answered all of my questions about hospice. Then he looked at me kindly and told me the real question for the caregiver is "How can I help this person have the highest quality of life possible in the time that's remaining?"

That really turned me around. I changed my focus from dwelling on Ed's impending death to thinking about his remaining life. I signed the hospice care papers and spent the remaining months doing everything I could think of to bring Ed pleasure. We then had a beautiful and peaceful conclusion to our 30-year life together.

Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. There is a wealth of information for Alzheimer's Caregivers on her website, ComeBackEarlyToday.com.