At a Loss: The Day-to-Day Toll of Dealing with Dementia

“Does no one know? It’s like I’m losing my mind.” —Stephen Sondheim, from his musical, Follies

One of my oldest friends recently called me and needed to vent: his mother, now 80, had been diagnosed with Alzheimer’s, and her doctor had reported her to the state so she would no longer be able to drive. Her reaction was to ignore the doctor, drive herself to seek another opinion, and shut out her children who were trying to support and help her. She was in denial, he said, and was taking it out on all of them. They felt helpless.

I acknowledged his frustration, anger, and loss, and also took the opportunity to help him understand a little of what it might be like to be his mother at this time. In my work as both therapist and yoga teacher, I see many people with dementia and have learned a lot about the tremendous losses people experience.

All of us have so-called “senior moments,” when we forget why we came into the room or tell our kids an anecdote for the second time. It is annoying and disorienting, but it quickly passes. Dementia is much more than that. One of the hardest things about dementia is that it is not curable, and it is constantly changing. So it is not one loss; it is a series of losses that will continue until death, and it is nonlinear. By this I mean its effects can be different day to day and moment to moment. For instance, someone may feel completely connected and coherent one moment, and then not know where he or she is a minute later.

Here are some of the many losses experienced by those with dementia:

• Loss of independence: Needless to say, a person who has been able to drive himself or herself around and suddenly is not “allowed” must face not only the loss of freedom to go and come as he or she pleases; he or she must also accept dependence on others and the need for supervision. For many of us, this may feel incredibly infantilizing: we suddenly have to report to someone when we want to do something, and we no longer have the flexibility or privacy to make our own choices. This is a huge loss, especially in a culture that values independence above all, and which teaches us that, through will, we can do whatever we want.
• Loss of narrative: Many of us pride ourselves on being the “authors” of our own stories. Imagine what it feels like to lose the thread of what is happening and to have people constantly correct you about your experience! Because people with dementia often don’t realize they have already told a story or asked you a question three times, they may be insulted and hurt when you say, “You already told me that!” As far as they are concerned they are telling you this for the first time, and when you dispute it, you are putting their reality in question. Keeping a timeline straight is often impossible and confusing, but all the worse when people are constantly denying your experience.
• Grief: As with any grieving process, an individual with dementia will go through many—but not all—phases at different times: denial, anger, bargaining, depression, and acceptance. Having dementia invokes a grieving process that is both scary and lonely. No one completely understands what is going on for you, as it is often very difficult to communicate clearly. You don’t know what things will be like from one day to the next and are continually questioning your abilities. You have to let go of so much—and it is not by choice. Daily routines, living situations, and privacy are all radically changed. You may lose trust in yourself. You have to ask for and receive help, though you may not want it. People tell you what to do and how to live, and your world may become much more limited.

As I described these challenges to my friend, he told me he felt sad and hopeless as he looked to the future with his mother. This is a normal reaction. As we adjust to new information, though, we begin to learn how to work with it. We find supports, learn new routines, and hopefully practice a lot of letting go and acceptance, along with our loved ones.

© Copyright 2015 GoodTherapy.org. All rights reserved. Permission to publish granted by Lillian Rozin, LCSW, MFA, RYT, Aging and Geriatric Issues Topic Expert Contributor

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