CHAPTER TWO

Living in the Moment

FAMILIES NATURALLY GO THROUGH a grieving process when one of their members gets a dementia diagnosis and they all have to learn to accept that life has changed irrevocably. It’s a challenge to let go of what you had. It can be frightening to face the uncertainty that the future holds.

Many of us have heard of the famous “Serenity Prayer,” which is attributed to the twentieth-century American theologian, Reinhold Niebuhr, perhaps the most famous prayer written in modern times. The best known form may be a version popularized by Alcoholics Anonymous.

God, grant me the serenity to accept
the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference.

Stephanie Howard, a dear friend and dementia care director, has crafted what she calls “The Dementia Serenity Prayer.” It goes like this:

What “was,” was. (In other words, you can’t go back to the time before dementia entered your family life.)

What “is,” is. (Dementia is the new reality. It is what it is.)

There is nothing wrong with making the “is,” the best “is” it ever was. (The dementia can’t be changed, but you can make life with dementia as good as it can be.)

Dementia is no one’s fault. It affects people with little regard to social standing, habits, or general health. You can’t change the fact of dementia. What you can change is how you react to it.

Learning to Live in the Moment

What’s key to making life with dementia as good as it can be is the idea of “living in the moment.” Try to understand that “now” is the primary reality of most dementia patients. Live in “the now” with them.

People with moderate to advanced dementia exist completely in the present. Memories that form the connective tissue of relationships are stripped away. This causes stress and grief for family members who are saddened that Mom doesn’t remember their birthday or that Dad has forgotten what he once did for a living.

The loss can be very hard for people with dementia in the beginning, when they may know something is wrong but don’t know exactly what it is. They may be told, “What do you expect? You’re old!” The changes may leave the person distressed, depressed, and withdrawn—especially if no one will talk to them about their experiences. People at this stage commonly feel as if they’re going crazy.

Mercifully, at some point, the person’s stress decreases as the disease progresses. Bit by bit, as dementia gradually takes hold, the patient’s awareness of his or her condition fades. When you feel upset or sad about your loved one’s dementia, try to remind yourself that he or she very likely doesn’t experience this same stress and grief. As they forget what dementia is, these elders simply don’t agonize as their families do. They’re not really worried about the future any longer, either. They’re just enjoying whatever life is bringing in the current moment—sunshine, a meal, a cozy blanket. Imagine what a release that can be: they may still get angry or frightened, but they don’t worry the way the rest of us do.

For families and caregivers, one of the best strategies is to try living in the moment as well, seeing the world of those with the disorder the way they see it. Try to understand that someone with dementia can’t really change. If they can’t change, then it’s up to us to adjust our behavior, our attitudes. We can connect with and support them. We can help them to be as successful, as engaged with life, as independent as they can be, for as long as they can be.

The Story of a Sunny Afternoon

I’ll never forget a warm, sunny afternoon in the garden of a dementia unit in San Jose, California. I sat there for thirty minutes. That’s a long time for a doctor to be relaxing. I shared the sunlight with a woman resident, her daughter, and two other people under my care for dementia. Only two of us, the daughter and I, had full cognitive function.

Still, we had a delightful chat about the weather, food, and family memories. The conversation was not linear; it took interesting turns. The flowers were in bloom. We enjoyed the day, the sun, and the companionship. For a little while, those of us without dementia slowed down. We stopped worrying about plans, the next appointment, and the next thing on our “to do” list. The elders pulled us into their world. We became fully present in the moment, not worrying about yesterday or tomorrow. That afternoon was a blessing.

Life After Dementia Can Still Be Sweet

Dementia doesn’t decrease enjoyment of the world and all it has to offer. In fact, patients may enjoy simple things even more than they did before the onset of their disease. For them, the stress of adult life—finances, worries about achievement, schedules—are melting away. What remains is “now”: the smell of fresh-baked bread, the laugh of a grandchild, roses blooming outside a window, a game of golf or balloon volleyball.

A man and woman who both had early dementia fell in love and got married. Listening to music, holding hands, a nice dinner—simple pleasures like these make life worth living, even after a dementia diagnosis. I’ve worked with elders who, with help, still love to bake cookies or to take pictures. One couple went dancing regularly, well into the wife’s dementia. They both loved it.

Unbelievable as it may seem now, when you’re just getting used to the idea, the quality of your family’s life could even improve with dementia.

The father who never had time for his family is now just happy to have someone to hold hands with and chat. One son reported that he had a much better relationship with his mother after she was diagnosed with dementia. “Mom was always nicer to company than she was to us children, and when she forgot who we were, she was much more pleasant to be with.” His mother moved to a care facility where she was much better supported and engaged. She was happier than she had been when she was at home and when he was growing up.

Um, Why Was I Angry, Again?

One of my patients once was a successful attorney. Before alcoholic dementia and frontal dementia impaired her, she was a force of nature. She was used to being in charge and tolerated little disagreement from her family or employees. When her daughter moved across the country after college, then stayed away for family and professional reasons, the woman was angry and resentful for years.

Yet as the mother’s dementia progressed, she began to mellow. She was still demanding, but she forgot many of the reasons she’d been angry with her daughter. When her daughter eventually returned home to help with her care, the two enjoyed a more placid relationship than they had in years.

The patient had aphasia, a loss of language functions, such as speaking, understanding what others say, and naming common objects, which is sometimes seen in Alzheimer’s disease. But at Thanksgiving, she was able to tell her daughter, simply, that she was grateful that her child was home. She was living in the moment, not the past.

Though the daughter could not say so to her mother, she was thankful that the dementia had melted away her petty disagreements so that they could have that talk.

Expert Advice: Slow Down, Take Time to Understand

Tiffany Mikles has been working with elders in the San Francisco Bay Area as a certified senior adviser since 1988. While managing a dementia care unit, she saw that the families of her patients also needed help. She founded Dementia Care Coaching in 2006 to educate and support those families, and she also runs support groups.

Here are her thoughts on the early days after a dementia diagnosis.

“Often, it’s the families that panic. They want to put things in place, get a caregiver in the house right away. They say, ‘You can’t go for a walk if you have Alzheimer’s, you can’t live alone if you have Alzheimer’s.’

“I encourage families to step back. Someone you love has just been diagnosed with dementia, but tomorrow is going to be much the same as today. It really is. People with early-stage dementia can often function pretty well.

“We do need a plan for the future, but we don’t need drastic measures right away. We need to learn about the disease, to educate ourselves.”